Infected Blood Inquiry: The Report

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Volume 6

Presented to Parliament pursuant to section 26 of the Inquiries Act 2005.

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Contents

6.1 The Initial Government Response 1985-1988

This chapter charts the Government’s resistance to compensation in the period from 1985 to 1988, referencing political and financial considerations. It discusses how the Government formed and maintained its view that nothing warranting compensation had occurred, and examines the decision of the Government to make a one-off ex gratia payment in November 1987.


Key Dates

February 1985 first public statement from the Government rejecting calls for compensation.

January 1987 The Northern Echo begins a campaign for compensation and the Government maintains that there will be no state compensation.

February 1987 Secretary of State seeks legal advice as to the possible liability of the NHS.

May 1987 Tony Newton gives evidence to the House of Commons Social Services Committee maintaining the position of no scheme to compensate for “unavoidable adverse effects” of medical treatment.

July 1987 Tony Newton considers the option of providing a sum to the Haemophilia Society.

August 1987 Tony Newton writes to John Moore about the “considerable parliamentary and public pressure ... to do something”.

3 November 1987 John Moore and Tony Newton meet the Haemophilia Society.

4 November 1987 John Moore writes memorandum proposing a once and for all payment to the Haemophilia Society to distribute to people infected.

10 November 1987 Cabinet Sub-Committee on AIDS considers the memorandum.

16 November 1987 Government announces a grant of £10 million to the Haemophilia Society to enable it to establish a special fund.


People

Kenneth Clarke Minister of State for Health (1982 - 1985)

John Moore Secretary of State for Health and Social Services (1987 - 1988)

Dr Roger Moore civil servant in a policy division within the DHSS (1985 - 1988)

Tony Newton Minister of State for Health (1986 - 1988)

Baroness Trumpington Parliamentary Under-Secretary of State for Health (Lords) (1985 - 1987)


Abbreviations

DHSS Department of Health and Social Security

UKHCDO United Kingdom Haemophilia Centre Directors’ Organisation


The Government decided against the provision of any form of “compensation” to people infected with HIV at an early stage. On 25 February 1985, Kenneth Clarke, the then Minister of State for Health, stated, in response to a question as to whether he had any plans to offer compensation to people contracting AIDS as a result of contaminated blood supplied by the NHS, “There has never been a general State scheme to compensate those who suffer the unavoidable adverse effects which can unhappily arise from many medical procedures.”[1]

In other words, the Government had no plans to offer compensation. And it had already decided, at the outset, that no one could or should be held responsible – no one was at fault, this was just one of those things, an unhappy but inevitable consequence of treatment.

The Government’s characterisation of the transmission of AIDS, with its high mortality rate and lack of treatment, as one of the “unavoidable adverse effects which can unhappily arise from many medical procedures” was inappropriate, ill-considered and demonstrated a lack of curiosity about what had actually happened. It set the tone, however, for the Government’s response for many years.

By 1986 the suffering of people who had been infected with HIV through blood products was plain to see. Some had already developed AIDS, for which there was no effective treatment. Some had already died. Others were being subjected to isolation and social stigma. This stigmatisation manifested itself not only within communities and even families, but also within the medical and allied professions: “doctors who do not understand the meaning of the test; dentists who will not now treat people with haemophilia”.[2] Some had to face up to the prospect of never having children. Insurance and mortgages were becoming difficult or impossible to obtain. Employers were terminating employment or refusing to engage people. Children were facing hostility and difficulties at school. Some found themselves living a double life, concealing the truth of their condition from work colleagues, friends and family.

Others were witnessing their children, parents, partners, siblings undergo horrific physical and mental suffering, and dying, while they desperately tried their best to care for them.

It would be inconceivable that the Government did not become aware of some of the first deaths from AIDS transmitted by blood products. Particular prominence in the media was given to the early victims of infected blood. The Cardiff patient, Kevin Slater, had been thought to be suffering from AIDS in spring 1983. Over the following two years his health deteriorated and he was repeatedly admitted to hospital. He died on 23 June 1985, aged 22. By the time of his death he was “grossly emaciated”and “generally weak and had become unable to hold even a glass of milk for himself and his parents had to feed him.[3]

The first death from AIDS of a person with haemophilia in the UK was in August 1983: Peter Palmer was a 57 year old grandfather, treated with US concentrates, whose death was reported in the Mail on Sunday on 2 October 1983[4] and would in any event have been known to the Department of Health and Social Security (“DHSS”), his death having been discussed at a meeting of the reference centre directors attended by Dr Diana Walford on 19 September 1983.[5]

Media prominence was given in Scotland to Terry McStay, who was the second person with haemophilia whose death was reported. He was 34 when he died of AIDS on 3 November 1984, having first become ill in 1983. His death was, as his brother-in-law explained to the Inquiry, “front page news. Terry was the first haemophiliac to die of AIDS in Scotland.[6]He “just got weaker and weaker and all we could do was help relieve his pain.[7]

David Tomkinson had been diagnosed in 1985 and died on 12 April 1987, aged 28. Jacqueline Tomkinson, his wife, told the Inquiry:

“He was frightened about infecting our elder daughter Rebecca, our unborn child Helen, and also me. He was a really jolly, outgoing, cheeky guy, but behind closed doors it was hard. David was withdrawn and down. Some days he would cry and I would have to get his Mum and Dad to come over to try and talk to him. He was so frightened of dying ... his health deteriorated rapidly and within a year and half he was dead ...

We almost lost our family home. I had to rely on family members to help us pay our mortgage and look after my children whilst I worked and nursed my dying husband. We applied for income support, but it did not come through until after David died.” [8]

One woman described how her father became progressively more ill in 1985 and eventually had to retire on medical grounds at the end of the year. “Daddy was very strong and carried on, but physically became very frail ... I never gave my mother credit for how strong she was, because at the time I believed Daddy was the strong one. She carried the family – ran the house, had the children well turned out – even though her heart was breaking because her husband was dying.[9]

Graham Polumbo was just 15 years old when he died, from AIDS, in November 1986, having been extensively treated with factor concentrates, including US products. His mother, Janette Johnson, told the Inquiry that he was a “wonderful son” and an “extremely kind hearted boy.” Although extremely poorly as a result of HIV, he managed to attend school but it was “heart breaking to see him come home upset after school, and in tears, every day because the other children had been so cruel to him.” She did not know how she “managed to cope in the days and months after Graham’s passing. I just existed.[10]

Infected individuals, clinicians, and MPs began to raise the question of compensation with increasing urgency.

One such individual was Nicholas Medley. He had haemophilia and was infected with HIV following treatment with commercial factor concentrates. In April 1986 he wrote to his MP – John Patten – raising the question of compensation. He talked about the lasting anxiety for those infected and their families of waiting to see if the symptoms of AIDS presented themselves; the enormous difficulties in establishing relationships; the absence of any effective treatment, let alone a cure. He hoped that this did not seem “an unreasonable point of view”.[11] The response from Baroness Trumpington, the Parliamentary Under-Secretary of State for Health in the House of Lords, epitomised the Government’s position. After the expression of deepest sympathy, she stated:

“there has never been a general State scheme to compensate those who suffer the unavoidable adverse effects which can in rare cases unhappily arise from some medical procedures. Compensation is awarded by the Courts where negligence has been proved ... Before the availability of heat-treated Factor VIII, the possible risks of unheated Factor VIII had to be weighed against the effects on the lives of haemophiliacs of ceasing to have treatment. Doctors treating haemophiliacs were, we believe, careful in explaining these risks to their patients ... the whole range of health services is available to help HTLV III antibody positive patients.”[12]

Two comments. First, it is difficult to understand how or on what basis the Government apparently formed the belief that doctors had carefully explained the risks of factor concentrates to their patients.[13] There is no evidence whatsoever of any attempt to glean information about this from those patients. If the Government was told this by doctors (as to which there is also no evidence), it was an untruth that was uncritically accepted by the Government. If the Government was not so told by doctors, then there was no basis whatsoever for its belief.[14] Second, the statement that the balance of risks “had to be weighed” is cast in a manner which suggests approval for doctors imposing their view as to the appropriate treatment on their patients.

One clinician who raised the compensation question was Dr Charles Forbes, director of the Glasgow Haemophilia Centre and chair of the United Kingdom Haemophilia Centre Directors’ Organisation (“UKHCDO”), who wrote to Margaret Thatcher in December 1986. He expressed his belief that “this tragedy ... represents one of the greatest medical catastrophes ever ... Their whole lives lie in ruins.” He invited “your Government” to explore the possibility of a compensation scheme “which would go some way to ameliorate the plight of this most unfortunate group of patients.[15] It was Baroness Trumpington, rather than the Prime Minister, who replied, repeating that there was no state scheme to compensate those who “like haemophiliacs infected with the AIDS virus, unfortunately suffer adverse effects from their medical treatment.” This letter, instead of referring to the “whole range of health services” available, asserted that “the full range of social security benefits”was “of course” available to those who were infected.[16]

In November 1986 Tony Newton, who had succeeded Kenneth Clarke as Minister of State for Health in September, answered a parliamentary question seeking to know when the DHSS had first become aware of AIDS, when it first became aware that AIDS was sexually transmitted, and when it first became aware that it could be transmitted through blood and blood products.[17] In his reply, he stated:

“First reports about the disease were received from America in 1981 and the first case of AIDS in the United Kingdom was diagnosed at the end of that year. The possibility that AIDS could be sexually transmitted was suggested at that time[18] ... [The DHSS] became aware in 1982 of reports from the United States of America that haemophiliacs were contracting AIDS. Although the mechanism of infection was not known it was presumed that it had been transmitted through the use of blood products such as factor VIII.[19] Evidence that the AIDS infection could also be transmitted by blood transfusion emerged from the United States of America in 1983.” [20]

On 12 January 1987 The Northern Echo began a campaign it described as “the public cry for justice” seeking compensation for people with haemophilia infected by AIDS as a result of their treatment.[21] The newspaper anticipated that a number of people were preparing to take legal claims to court. The prospect of such claims being made against the Government, a health authority, or a treating doctor was a live topic.

On the same date as The Northern Echo began its week-long series of pieces, Tony Newton was asked specifically, in a parliamentary question, if the Secretary of State would take steps to compensate those with haemophilia who had been infected with AIDS by Factor 8 imported from the US. He undertook to give an answer as soon as possible.[22] No willingness or agreement to compensate emerged.

And on that same date, Tony Newton was sent a briefing, in anticipation of an appearance at the Health Committee the following day, in which the suggested answer to a question about compensation was “We will be considering this question fully since it has far reaching implications. Officials are preparing a full report on all of the problems faced by haemophiliacs.[23]

It was clear that the Government was continuing to resist compensation.

Reporting in early February 1987 The Northern Echo said it had been told by Tony Newton that paying compensation to AIDS victims with haemophilia could lead to “very great difficulties”. It would be hard to distinguish their claims from those of other people who had suffered as a result of medical incidents involving no question of negligence.[24] Dr Roger Moore, a civil servant in a policy division within the DHSS,[25] prepared a briefing note for an interview with The Northern Echo in late February repeating this line.[26] The DHSS’s view[27] at the time was that the “adverse effects” people with haemophilia had suffered were “unavoidable”.[28]

Information gathered by Dr Alison Smithies and provided to colleagues in mid February 1987 included the following advice with regard to compensation:

“Their position is pitiful and has attracted great sympathy in particular because of perceived stigma of the disease which is associated with promiscuous sexual activity. The equally sad fact that a number of haemophiliacs will undoubtedly die of chronic hepatitis as a result of non-A non-B infection has not been recognised publicly ... I find it difficult to advocate that there are any special circumstances surrounding the care of haemophilia which makes their case for compensation greater than that of other patients who take medicines which kill them. That is, of course, provided the doctors caring for the patients have prescribed their treatment in a proper manner.”[29]

This was a remarkable statement in three respects. The first is the acknowledgement that a number would die from non-A non-B Hepatitis and that this had not been publicly recognised, without any suggestion that steps should be taken to ensure that the public became aware. The second is the casual reference to “medicines which kill”and the implicit suggestion that there was nothing exceptional or “special” or particularly troubling about that. The third is the proviso at the end – no special circumstance justifying compensation provided that doctors had prescribed the treatment in a proper manner. Prescribing treatment in a proper manner in the context of “medicines which kill”would have to involve close and careful attention to alternative, less dangerous forms of treatment, and the clear provision of information to patients about the risks so that they could give (or withhold) informed consent. The DHSS took no steps to determine whether this was in fact what had happened.

Also in February 1987 advice was sought on behalf of the Secretary of State, Norman Fowler, as to the possible liability of the NHS.[30] The advice received was that there was certainly potential for some breach of a duty of care on the part of health authorities, if there had been a failure to take all proper steps to guard against infection or a failure to get the informed consent of the patient undergoing treatment involving unpreventable risk.[31]

The Haemophilia Society then took the unusual step of publicly revealing the advice it had received from Counsel as to the prospect of such a claim succeeding.[32] The Society suggested that many individual claims might not succeed. The reasons for this were not, however, so much that no wrong had been done by the system as a whole, but that identifying the relevant wrongdoer within that system and proving negligence were problematic.[33] Its May 1987 Haemofact publication sought to make clear its “unanimous and strong view” that people with haemophilia who were HIV positive deserved special financial support from the Government. Irrespective of legal responsibility, it argued that the Government had a “clear moral duty” to provide recompense.[34] Meanwhile, Dr Smithies, attending the UKHCDO’s AIDS Group meeting on 11 May, responded to a question about compensation by saying that there was “no government scheme at present nor were there any plans for setting up such a scheme. Patients who felt they had a case would have to apply for compensation through the courts.[35]

Professor Arthur Bloom wrote to the Chief Medical Officer (“CMO”), Sir Donald Acheson, in May 1987 raising the question of compensation; the CMO’s response recorded that compensation raised “many difficult issues” and that the subject was “clearly outside the remit of EAGA”. He added that “in my position as CMO I find that it would be inappropriate to select out a particular group of patients for particular support.[36]

The House of Commons’ Social Services Committee had announced an enquiry into AIDS in November 1986 and as it neared the end of that process it heard on 13 May 1987 from the Secretary of State (Norman Fowler), the Minister of State (Tony Newton) and the CMO.[37] The question of compensation was addressed by Tony Newton. Whilst professing to be “intensely sympathetic”, he suggested that it was very difficult to discern a basis to distinguish between “medical treatment with blood products given in good faith and without negligence and medical treatment of any other kind that results in an injury or prolonged disabling condition ... there has never been a general state scheme in this country to compensate those who suffer the unavoidable adverse effects which may arise from some medical procedures.[38]The Committee’s report, when published, noted the Government’s position but suggested that “Calls for compensation for haemophiliacs and others who have become HIV positive as a consequence of infected blood transfusions and for special life insurance arrangements for haemophiliacs deserve careful consideration.[39]

A press conference the following month – on 4 June 1987 – included a question about the treatment of people with haemophilia. The Prime Minister’s response was “The Government does not treat haemophiliacs; the doctors treat haemophiliacs!”. Asked why there was a refusal to provide compensation, Tony Newton reiterated that “we see it very difficult to draw distinctions between people who experience, say, a tragic problem of this kind in this way when the treatment is on the best available knowledge and in good faith, and medical accidents that can occur in other ways.[40]

However, whilst he continued to maintain this line publicly, Tony Newton began to have doubts about the continued position against compensation in the summer of 1987. On 7 July 1987 a submission from Dr Roger Moore referred to the Haemophilia Society’s campaign, which was expected to launch in September, and advised that in anticipation of increased pressure officials were examining ways of “compensating haemophiliacs as a special case.[41] Ministers were asked to agree that this further look at the matter should be made public (a reply to Frank Dobson MP, who had been raising the issue, was proposed). In response the Secretary of State for Health and Social Services, John Moore, wrote “‘This is very difficult. But my initial reaction is it would be most unwise to do’, (ie make the ‘further look’ at the haemophiliacs case public).[42]

Following a meeting between officials, Tony Newton, and the Parliamentary Under-Secretary of State for Health, Edwina Currie, on 15 July 1987, it was agreed that officials would provide a draft minute for Tony Newton to send to the Secretary of State seeking agreement to officials carrying out further work on possible options for compensation. The option favoured by Tony Newton and Edwina Currie was the idea of giving a sum of money to the Haemophilia Society to distribute as they thought best.[43]

On 26 August Tony Newton wrote to the Secretary of State that it was “quite clear that we will be under considerable parliamentary and public pressure after the recess to do something for infected haemophiliacs ... It will be emotive and highly charged. I would expect it to attract considerable support on all sides of the House.[44] John Moore was unconvinced, responding that he felt that the present line against compensation should be maintained.[45]

It was against this background (but unaware of Tony Newton’s position) that in September 1987 the Haemophilia Society sought a meeting with the Secretary of State about compensation for people with haemophilia who had been infected with HIV, and launched a campaign. Pleading with the Government to stop “prevaricating” and to act swiftly, the Society wrote: “The tragedy of twelve hundred people dying as a result of National Health Service treatment is a disaster in its own right. The Social and financial implications surrounding their infection and possible death place that disaster upon epic proportions. The Government is the only institution capable of minimising the distress of all those concerned.[46]

Officials thought that the media and many MPs would be sympathetic to their campaign, and recommended a meeting so that the Minister could demonstrate that he was personally aware of their case.[47] At this stage John Moore remained firm in his view that there should be no compensation, for the reasons which had thus far been advanced. He wrote to the Prime Minister on 24 September:

“I have looked at the case for compensation again carefully in the light of the impending campaign but have concluded that the line taken with the Social Services Committee was right. Any special arrangements for compensation could cost a minimum of £3 million and could only be funded at the expense of other priorities. Moreover, it is logistically difficult to distinguish the claim by haemophiliacs from the claim of many others damaged in the course of their medical treatment. And there is no doubt that compensating haemophiliacs would lead to pressure from many other groups for similar treatment. While all of us must have every sympathy for haemophiliacs who have been infected with the HIV virus, I do not feel it would be wise to set a general precedent by accepting that the Government should provide a special compensation scheme.”[48]

In October 1987, in advance of the meeting, the Haemophilia Society provided a submission to the Government. It recorded that of the 1,200 people understood to have been exposed to HIV from within the haemophilia community, to date 60 had been notified as having AIDS and 45 had died.[49] It described the intolerable financial, social and family burden, and asked for “immediate, positive and compassionate government action.[50] And in anticipation of the meeting, The Northern Echo stepped up its campaign, sending a special campaigning supplement entitled A Fight For Justice to every MP.[51]

On 21 October 1987 Dr Smithies advised the CMO’s private secretary that in considering the consequences of a compensation scheme for people with haemophilia infected with HIV, account would need to be taken of the claims of recipients of HIV infected blood donations and organ transplants, and of the implications for people with haemophilia to whom non-A non-B Hepatitis had been transmitted (said to be “in the region of 96-100% of those who have been treated with products made from plasma pools”).[52]

At some point before the meeting with the Haemophilia Society, however, John Moore’s stance began to shift. On or around 30 October Tony Newton sent a minute to the Prime Minister[53] referring to John Moore’s minute of 24 September, but adding that “Whilst John and I still consider those arguments to be intellectually valid, there is a powerful practical case for recognising the particular circumstances of the infected haemophiliacs.” Referring to the “very strong support” for the Society’s campaign, “particularly from our own supporters inside and outside the House, John Moore and Tony Newton had concluded that the line which had been taken was “unlikely to prove politically sustainable.” Their proposal was to tell the Society that the Government sympathised, was considering how best to respond, and would talk to them again when a decision had been reached, and to discuss the options with colleagues in advance of a further meeting with the Society with the aim “to identify an acceptable response which runs the least risk of setting a precedent and keeps direct Government involvement to a minimum.[54] The cost was thought to be likely to be of the order of £5-10 million.[55]

John Major, who was then Chief Secretary to the Treasury, advocated a more cautious approach. He responded to Tony Newton on 2 November, concerned about the precedent (“I do not feel that we can afford to offer such a response until the pros and cons have been thoroughly considered) and recommending that they should “listen only at this stage” to the Society, “with no implication that the Government will take action.[56]A handwritten note on a copy of Tony Newton’s minute stated “Prime Minister! This is a major about-turn. Content?[57]

It is apparent that by the time of the meeting between John Moore, Tony Newton and the Society, the media pressure was intense. The advance briefing provided by Dr Roger Moore to the Secretary of State explained that:

“The campaign was given a Press launch on 13 October. There will be a lobby of MP’s on 5 November, all MP’s have been sent campaign literature. So far over 170 pieces of Private Office correspondence on the issue have been received. More than 110 needing a Ministerial reply. Nearly all the quality newspapers have now carried articles or editorials supporting the campaign[58] ... The television programme ‘First Tuesday’ is expected to run the issue in December or January.” [59]

The meeting was on 3 November 1987.[60] In the words of Dr Moore, who was there: “it was a very incredible meeting. I have been to thousands of meetings but that one is very clear in my mind.[61] The Society chair and its general secretary brought with them three young men who had contracted HIV from their blood products. What occurred is best described in the words of Dr Moore:

“what struck us, actually, was that these were people who had a right to be angry and they weren’t; they were only concerned about the families that they would leave behind. And we listened and we were really moved. I mean, I don’t think I’ve ever seen a minister weep before but John Moore – – and we were totally, totally dumbfounded, really. And, anyway, the Haemophilia Society delegation left, and we sat round and it wasn’t a question of whether we do anything, it was, you know, what can we do? What actually can we do? And I’ve never really seen any meeting that’s kind of changed direction so quickly or to such great effect as that.” [62]

This was a significant moment. Though the to-ing and fro-ing between ministers showed that the Government had slowly begun to reconsider its stance, after this it became clear that the die was cast: it had changed direction.

The very next day, on 4 November 1987, in a confidential memorandum, John Moore proposed to a Cabinet Sub-Committee that special financial assistance for people with haemophilia suffering from AIDS should be given.[63] The memorandum suggested that the people with haemophilia were “mostly infected at a time when there was only a limited knowledge of the HIV virus and how it could be inactivated.[64] A lobby of MPs was due on the following day; the Haemophilia Society campaign enjoyed the backing of many Government supporters, and his memorandum said it was “unlikely that we shall be able to sustain the present line.” The “present line” was that (a) there was no difference in principle between those with haemophilia and others damaged in the course of their medical care; (b) there was no general scheme for compensating those so injured; (c) compensation was ordered by the courts only when negligence had been proved; and (d) the Government was already funding a number of voluntary agencies which provided advice and services to people with AIDS and people with haemophilia could be expected to derive some benefit from this. The memorandum noted that the Haemophilia Society had successfully got across their view that people with haemophilia’s problems with AIDS were due to the Government’s failure to ensure self-sufficiency in blood products. This was “difficult to refute convincingly in presentational terms.”[65] In conclusion he said:

“The affected haemophiliacs form a distinct, identifiable and finite group, which makes it feasible to devise a one-off solution, which could be defended as a ‘special case’. Unlike others injured by their medical treatment, there is no doubt about causation or about the nature of the injury received. Nor should there be any increase in the number infected in this way. Furthermore, it should be noted that the vaccine damage payments scheme already breaches the coherence of the present position. It is the advice of DHSS lawyers that a scheme of financial help, in the form of an ex gratia payment would not imply any admission of legal liability by the Government or Health Authorities.”[66]

He suggested that there were two options. The first was that the Government could directly pay a lump sum to each infected person with haemophilia, totalling £10 million apportioned as to £8,300 for each of the 1,200 infected people with haemophilia. The second was: “to give a once and for all lump sum, of up to £10 million to the Haemophilia Society to administer and distribute to cases of need ... Payments would be made to haemophiliacs and dependents [sic], including wives infected by haemophiliac husbands.

This comment followed:

“The second option is particularly attractive as it minimises Government intervention; and it would be consistent with the policy of not accepting any direct responsibility for damage caused in this way. The Haemophilia Society already administer a small hardship fund (financed by voluntary donations etc) and currently spending at a rate of £3,000 per month, mainly on those suffering from AIDS. They thus have experience in targeting relief to haemophiliacs and their families.” [67]

The memorandum therefore proposed that special financial help should be given to people with haemophilia; that this should take the form of a grant of up to £10 million in 1987-88; that it should be funded from the contingency reserve; and that further work should be done on details of how it could be administered via the Haemophilia Society, and how such an initiative should be presented to avoid others seeking similar treatment by relying upon it as a precedent. The comment on the second option is marked by the Government’s apparent wish to minimise any intervention, and distance itself from any suggestion of accepting direct responsibility.

The memorandum was considered by the Sub-Committee on AIDS on 10 November 1987. A briefing paper for the Lord President of the Privy Council (who chaired the Sub-Committee) advised that DHSS ministers had consistently resisted compensation; that a campaign had attracted a good deal of political and public support, such that the position was not sustainable unless concessions were made; and that “The case for reversing the present line and singling out haemophiliacs for special compensation is essentially a political one.” The proposed grant to the Society was “not compensation – which could run to hundreds of thousands of pounds per person – but a gesture of limited financial assistance to meet particular needs.” £10 million would be sufficient to provide an average payment of around £8,300 to each of those affected: “This does not seem a great deal”.[68]

Contributions to the discussion at the Sub-Committee meeting came from the Solicitor General, who advised that the courts would be unlikely to be influenced by the establishment of a scheme “provided that the payments were presented expressly as ex gratia and that the announcement of the scheme was accompanied by an express disclaimer of liability”; and from the Chief Secretary to the Treasury who acknowledged the “very strong case” for financial assistance but stressed that it was vital that the proposed scheme should be ring-fenced as tightly as possible. At the conclusion of the discussion there was agreement to the announcement of a sum of £10 million to be made available for administration by the Haemophilia Society.[69]

A statement to the House of Commons from Tony Newton followed on 16 November 1987. The Government proposed to make an ex gratia grant of £10 million to the Haemophilia Society to enable it to establish a special trust fund. The Society was to be “able to make payments to the affected individuals and families throughout the United Kingdom, and to do so with greater flexibility than could readily be achieved in any other way.” It noted that the Society had asked for “advice and assistance in administering the fund, which [the Government had] gladly agreed to arrange.[70]

He told the House of Commons: “This is not a compensation scheme. That must be made clear. It is a recognition of a special and unique combination of circumstances.” The £10 million was: “a broad estimate of a sum that we felt would give significant help to the group affected, recognising that to calculate in terms of a specific sum per individual would not take account of the great differences between the circumstances of the individuals affected.” It was up to the Haemophilia Society to decide how to administer the £10 million: it would “not, in effect, be acting as the Government’s agent.[71]

Just over a week later, Strachan Heppell, a civil servant at the DHSS, met the chair and general secretary of the Haemophilia Society (Reverend Alan Tanner and David Watters, respectively).[72] They were assured that the administrative costs of the fund would not have to be paid from the fund or its income. Further discussions followed, which resulted in the Macfarlane Trust being set up as a body separate from the Haemophilia Society.[73]

Commentary

Lord Fowler was asked whether there was any soul searching on the part of the DHSS to consider whether there had been any fault or wrongdoing by successive governments or anything that might have made the case for compensation stand out from others. This was his answer:

“I would have thought that the case was that they regarded it as a pretty hopeless case to put forward, because you had the Chancellor of the Exchequer against you, you had the Prime Minister against you and you had most of the Cabinet against you, where on earth were you going to get a compensation scheme? You just weren’t.”

He accepted that it was hopeless, not because it was unmeritorious, but because the political and financial commitment was not there and “we were far too influenced by the argument ... which was if we give way on this, you’re giving way on an awful lot of other things.[74]

Lord Fowler was right that political and financial considerations underpinned the Government’s response in this initial period (and, as the following chapters of this Report demonstrate, continued to do so over the next three decades).

The Government plainly formed the view, at an early stage, that nothing had been done wrong, and that no financial assistance would be provided to people with bleeding disorders who had been infected with HIV. It did so without any proper investigation either into what had caused the infections or into the appalling plight of those infected. Had it done so this would have revealed systemic failures that contributed to what had occurred – the persistence with out-of-date, inadequate facilities for producing concentrates from domestic donations; a system of blood collection and distribution that was regionalised and fragmented; both leading to the importation of products from the US sourced from donors amongst whom transmissible disease was particularly prevalent[75] and known to be riskier; a lack of research into viral inactivation; a failure to see UK production as a whole, a joint effort between Scotland and England, as had originally been intended; coupled with a slow and inadequate response to taking precautions even when the writing was on the wall. To think of the infections as “unavoidable adverse effects”was a distortion of reality. Government fear of setting a precedent outweighed considerations of moral responsibility or compassion. The remarkable meeting of 3 November which led to John Moore’s tears showed a compassion which could change politics[76] – but it remains evident that it was largely public and political pressure which led to the change of position in November 1987.

The payment of £10 million to the Society, and through that route eventually into a charitable Trust, was a sum which would work out at roughly £8,300 per individual, even if only people who had been directly infected were considered. At that level, it was always likely to be seen as derisory. It was, as the briefing to the Lord President put it, a “gesture”.

One of the features of the Government’s payment was that it was a response to the particular needs of people with haemophilia who had been infected with HIV as a result of NHS treatment and those of their families and dependents. Yet no assessment of these needs was carried out. The history of the Macfarlane Trust shows how this approach proved short-sighted for government, insufficient for those it was intended to help, and actually hurtful to many.

What is also, and particularly, surprising is that there is very little evidence that once the Government knew of the dreadful consequences to which blood transfusions and blood products could lead, it asked what lessons could be learned from what had happened. It was its paramount duty to protect the nation’s health. There is scant evidence that it did anything to ensure that the like of what, by 1987, had just happened never happened again. In respect of Hepatitis C from transfusions and commercial blood products it was still happening: but little or nothing was done to address this. Rather, government preferred to assume that nothing had been done wrong and that, inferentially, there were no such lessons to be learned.

6.2 HIV Haemophilia Litigation

This chapter looks at the Government’s response to the HIV haemophilia litigation and the process of settlement, including the lack of consultation with Scotland and “the waiver” which surrendered the plaintiffs’ rights to make claims in respect of hepatitis. It also considers the experiences of plaintiffs in that litigation, many of whom report a pressure to accept the terms of settlement.


Key Dates

1989 HIV haemophilia claims begin to be filed.

June 1989 Submission to ministers says that “at every stage” the Government “has acted as swiftly as possible to minimise the risk of infecting haemophiliacs with AIDS in light of the best expert opinion available at the time.

November 1989 Decision to make further payment (£24 million) to the Macfarlane Trust.

Late 1989 - 1990 Central defendants to the claims disclose many documents, but withhold others asserting public interest immunity (“PII”).

26 June 1990 Mr Justice Ognall writes a letter to all parties, urging settlement.

31 July 1990 Decision of the High Court about disclosure and PII, followed by a Court of Appeal ruling on 20 September 1990.

9 November 1990 Settlement proposed on behalf of the plaintiffs (who are not aware).

7 December 1990 William Waldegrave writes to the Prime Minister recommending settlement.

11 December 1990 Prime Minister announces settlement in Parliament, which is how plaintiffs learn about it.

May 1991 Settlement of claims in England and Wales. Agreement contains plaintiff waiver of future claims.

June 1991 Settlement terms in respect of Scottish claims are finalised, without a similar waiver.


People

John Canavan civil servant, Department of Health (1989 - 1994)

Kenneth Clarke Secretary of State for Health (1988 - 1990)

Charles Dobson senior civil servant, Department of Health

Richard Gutowski Medicines Control Agency (1983 - 1991)

Strachan Heppell senior civil servant, Department of Health

Norman Lamont Chief Secretary to the Treasury (1989 - 1990)

David Mellor Minister of State for Health (1988 - 1989), Chief Secretary to the Treasury (1990 - 1992)

Sir Harry Ognall Judge, HIV Haemophilia litigation

Dr Hilary Pickles principal medical officer (1988 - 1991)

Dr Andrzej Rejman senior medical officer, Department of Health (1989 - 1998)

William Waldegrave Secretary of State for Health (1990 - 1992)

David Watters general secretary, Haemophilia Society (1981 - 1994)


Abbreviations

CMO Chief Medical Officer

CSM Committee on the Safety of Medicines

Steering Committee solicitors bringing the claims on a group footing


Introduction

During 1989, a large number of individuals – in the end nearly 1,000 – brought claims against a large number of defendants in England and Wales. The “central defendants” as they were described in the action, were the Department of Health and the Welsh Office, the Licensing Authority established under the Medicines Act 1968, and the Committee on the Safety of Medicines (“CSM”). There were 220 further defendants consisting of all the regional health authorities, all the district health authorities, and certain special authorities including the Central Blood Laboratories Authority. This chapter focuses largely on the response of the central defendants. The fact that nearly 1,000 people with haemophilia chose the insecurities and stresses of litigation, in an effort to achieve recognition that they should not have been infected, shows the strength of their collective view. It is in itself a sad commentary on what had happened already that they thought that litigation was the only viable route to establish the facts; and although the focus of this chapter is on how the central defendants reacted, this should not be forgotten.

The chapter looks in detail at three principal areas concerning the litigation. First is the reaction of those in the Department of Health and Government to the litigation when it began; and a “line to take” being adopted that people received the best treatment in light of knowledge at the time. Second is the process of settlement: how it began, and from whom the initiative came: the Government or the litigants. Third is how it came about that the “waiver” was required when the claim was not for hepatitis but for HIV infection. In respect of both these last two, the position of litigants in Scotland and the absence of a waiver in Scotland both feature in the discussion.

The essential chronology of events is as follows:

1989 Litigation begins in England.[77]
1989-90 Defendants disclose many documents, but claim they are obliged to withhold others. The litigation is assigned to be heard by Mr Justice Ognall.
26 June 1990 After a preliminary hearing before him, Mr Justice Ognall writes a letter urging settlement.
31 July 1990 Another high court judge makes an order about the extent of disclosure which should be made. This is immediately appealed by both the defendants and the plaintiffs.
September 1990 Court of Appeal orders disclosure of most of the documents, and makes observations in passing about the nature of the claims.
December 1990 Moves to settle the claims begin.
1991 Terms of settlement of claims in England and Wales finalised.
May 1991 English claims settlement finally agreed. Contains a waiver, preventing a later claim in respect of infection with hepatitis as well as HIV.
June 1991 Settlement terms in respect of Scottish claims finalised. There is no waiver in respect of hepatitis.

The HIV litigation in England and Wales

The litigation in England and Wales began in early 1989, with the issue of writs against a number of defendants. They were consolidated into a group action, against “the central defendants”. These included the Department of Health. The “plaintiffs” (as claimants used to be known) claimed that the duty of the state was such that if individuals could show that they were injured as a result of a failure to honour that duty they could claim monetary compensation against the state.

After a statement of claim had been issued, and defences entered from the central defendants, a next step in the litigation was the “discovery”[78] of relevant documents by both parties.

Claim of public interest immunity

The Department of Health, the Licensing Authority and the CSM disclosed a number of documents. However, they listed a number (approximately 600) they did not disclose, beyond identifying that these were in classes of documents for which they claimed public interest immunity. The question of whether that claim could be upheld was raised before a High Court judge,[79] who on 31 July 1990 ordered the defendants to produce certain of those documents for which they had claimed immunity to be inspected by the court to see if, on a proper balance between the public interest in non-disclosure and the public interest in justice being done as between the parties, they should be disclosed.[80]

Both parties appealed: the plaintiffs seeking wider disclosure, the Department of Health seeking to reverse the order. The matter came before the Court of Appeal.[81] Judgment was given on 20 September 1990.

In the leading judgment, given by Lord Justice Ralph Gibson, he pointed out that the Department of Health had raised the matter of public interest immunity so as to prevent the disclosure of certain documents but:

“The Department does not do that in order to put difficulty in the way of the plaintiffs, or to withhold from the court documents which might help the plaintiffs. The Department raises the matter because it is the duty of the Department in law to do so in support of the public interest in the proper functioning of the public service, that is the executive arm of the government ... It is not for the Department but for the court to determine whether the documents should be produced. The plaintiffs acknowledge the validity of the claim to public interest immunity but ask the court to order production notwithstanding the existence of the valid claim to immunity. It is essential that that aspect of these proceedings should be clearly understood ... The task of the court is properly to balance the public interest in preserving the immunity on the one hand, and the public interest in the fair trial of the proceedings on the other”.[82]

In short, there was nothing underhand or untoward in the approach of the Department of Health in seeking to keep some documents undisclosed: it was its obligation to take the immunity point, and for the court to decide if notwithstanding some public interest in immunity continuing, it was outbalanced by the public interest in justice being done in the litigation.

In the course of his judgment, Lord Justice Gibson said:

“The plaintiffs have set out, in my judgment, a prima facie case to the effect that the Department knew or should have known of the risk to the plaintiffs from the use of concentrate obtained from suppliers in the United States; that practicable steps could have been taken by the Department to eliminate or to reduce that risk; and that if those steps had been taken the injury suffered by all or by some of the plaintiffs would not have been caused to them. By ‘prima facie case’ I mean no more than that the plaintiffs have alleged facts, which, if proved, could justify those conclusions ... No one could doubt the sincerity of the efforts of those in the Department to protect and to assist the plaintiffs as patients in the National Health Service, but on the pleaded case grave errors of judgment were made. Even if there was no grave error of judgment it appears to be not in dispute that there was in fact a failure to protect the plaintiffs from the danger of using blood products, whether imported or supplied in this country, which were infected ... If [the evidence or material available] support the conclusions which the plaintiffs say are to be derived from them, and in particular as to the knowledge which the Department had or should have had at the dates alleged of the nature and gravity of the risk to the plaintiffs, then ... It seems to me ... likely that ... failing to act appropriately upon available information, was the result of failure at some level within the Department to pass that available information to those who were required to make the decisions. If that is not in fact the explanation, but it is proved that the information as to the nature and gravity of the risk, and of the steps available to eliminate or reduce it, was supplied to those who were required to make the decisions then, in my judgment, the plaintiffs would have a prima facie case for asserting that the decisions were such that no reasonable or responsible person could properly make them.”[83]

He recognised that it all depended upon what was “proved”. In short, the case should proceed to trial; a judge should decide what facts were proved; and the judge should draw any conclusions as to whether in those circumstances a duty existed which, if broken, would entitle a person harmed as a result to receive recompense.

Lord Justice Bingham agreed in his judgment with what Lord Justice Gibson had said but added:

“While there may be no very close precedent for the present claim, there has not perhaps, at least in this country, been any comparable calamity. Of the plaintiffs still living, the great majority have throughout their lives suffered the grave affliction of haemophilia. To this there has now been added the even graver affliction of AIDS, now or in the future. The tragedy was avoidable in the sense that, had different measures been taken in the 1970s and early 1980s, it could, at least in large measure, have been prevented ... If ... the plaintiffs can make good their factual allegations against the Department ... the law might arguably be thought defective if it did not afford redress.”[84]

It is no part of this Inquiry’s function to determine matters of civil liability. It has no power to do so.[85] Nor is it any part of the function of the Inquiry to pass judgement on the legal merits of the arguments raised in the litigation.

For present purposes, given these observations by the Court of Appeal, it is sufficient to say that the case was not a hopeless one – whether viewed from the perspective of the plaintiffs or from the perspective of the defendants. It was a case in which (as it appears to me, in the light of experience) there were good arguments to be raised on both sides, and that neither success nor failure could be guaranteed. The point in mentioning that is to note that divergent views have been expressed since the case was settled. Some have expressed the view that the defendants were certain to lose, and therefore it was wrong for government to resist the claims, and government should be resented for this. Others have taken the position that the defence was certain to succeed, in which case there might be concern at the plaintiffs having been paid anything at all. Neither view is correct.

While recognising the necessity of testing the question of public interest immunity, the practical effect of it was twofold: first, it prolonged the litigation, because the claim of public interest immunity had first to be evaluated by a judge, and then there was an appeal to the Court of Appeal; second, it emphasised the power imbalance between the parties in terms of knowledge. There remained some categories of documents that would not be disclosed, and those documents that were to be produced were for inspection by the judge, for him then to determine if they should be disclosed to the plaintiffs.

It would be wrong of me not to note the impact of this additional delay on the plaintiffs. They had only embarked on litigation because their efforts to obtain proper compensation – supported by the Haemophilia Society and a number of parliamentarians – had been consistently rebuffed by the Government. At that point facing a likely early and painful death, they were litigating because this seemed the only way they could secure some provision for their families.

The litigation: early stages

At some stage during 1989 litigation began. Initially, individual actions were taken against the health authority or health board responsible for treating the plaintiff concerned. This became known by, and became a matter of concern to, haemophilia centre directors. “Several weeks” in advance of an extraordinary general meeting of haemophilia centre directors, which was called to discuss the coming litigation, a questionnaire was circulated by the United Kingdom Haemophilia Centre Directors’ Organisation (“UKHCDO”) to haemophilia centre directors. The results were reported at the meeting. At that stage 42 haemophilia centres were involved and 214 patients had taken legal action. Although the defendants to all actions were the relevant health authority or health board, action was also being taken against individual haemophilia centre directors, the Scottish National Blood Transfusion Service (“SNBTS”), the secretaries of state, the Department of Health and Social Security, the Licensing Authority, the CSM, and in one case the Attorney General and in another the drug company.[86]

This litigation was brought before the courts of England and Wales, which share the same legal system. Scotland has its own legal system, as does Northern Ireland. 12 cases involving people with haemophilia were instituted in Scotland.[87] The defenders[88] in Scotland were the relevant health board and the SNBTS. Detailed defences had been lodged for some of those 12 claims by the time the hearings before the Court of Appeal in England took place.[89] By October 1990 the number in Scotland had risen to 29 cases.[90]

Just two weeks before the statements of claim in the English and Welsh litigation were first lodged, David Watters of the Haemophilia Society wrote to Kenneth Clarke as Secretary of State for Health. He referred to preliminary hearings having started in the High Court. He wrote in support of the claims, but said that the £10 million which had been given to the Macfarlane Trust was simply not enough, and urged the Government “to review the situation whereby those cases will have to drag themselves all the way through the Courts in a manner which will be both costly and deeply humiliating for both the litigants and the Government.[91]

On 27 July 1989 the first of a number of versions of a statement of claim was served.[92] By then a number of solicitors including Mallen and Walton, Pannone Napier and J Keith Park & Co had combined to bring the claims on a co-ordinated, group footing. The claims were managed by a steering committee of representatives of those involved.

Government reaction to the claims

In October 1989 there were discussions internally within the Department of Health about whether the litigation should be settled. Richard Gutowski was then working at the Medicines Control Agency.[93] He sent a fax to Mike Arthur seeking to resist any form of settlement, because to settle implied an admission of liability and risked encouraging further litigation and public pressure for similar settlements out of court. He said:

“Whilst there may be unique features in the case of HIV officials do not think that any out of court settlement in that issue could be effectively ring fenced so as not to create a precedent. Any such settlement would need to involve the Licensing Authority and the CSM – it could not just include the Secretary of State in respect of his NHS responsibilities. It would accordingly be a precedent for similar out of court settlement of other claims against the Licensing Authority and CSM. It would also be likely to encourage further litigation against the Authority, which would be damaging to the integrity of the licensing system. It could lead on to over-defensive licensing decisions and reluctance of academics to serve on CSM and other S4 advisory committees, on which the Licensing Authority is reliant.”[94]

By early March 1989 it was already known that a number of people with haemophilia who had been infected had begun claims. The first reaction, understandably, was to assess the likely strength of the claims. To that end, the Department of Health solicitors set out the pros and cons of orchestrating a combined defence to the litigation and suggesting where the balance of advantage lay. John Canavan, a civil servant in the Department of Health, recorded that the departmental information about the cases was very sketchy at that stage. It was not possible to say what the line of defence would be or to assess its strength.[95]

By 15 June 1989 matters had become clearer. A group action[96] was contemplated by the plaintiffs. It was at that stage that the Department of Health informed ministers. A first draft of a submission was prepared by the civil servant principally concerned in handling the litigation (Charles Dobson, to whom John Canavan reported) with input from senior officials including the Chief Medical Officer (“CMO”) and junior counsel, and was copied widely within the department. A meeting with counsel was scheduled for 21 June, and it was known there was to be a court hearing on 29 June. Matters were urgent. It was sent to the Parliamentary Under-Secretary of State for Health (Roger Freeman), seeking Ministers’ views on resisting the case proceeding by group action rather than as a series of individual cases. It also sought Ministers’ views on “other options for handling the litigation and the controversy which it is likely to engender.[97]

An expanded submission, following the legal meeting of 21 June, was sent to the Minister of State for Health, David Mellor, on 26 June. It had the same focus on immediate procedural steps (the court hearing at which the issue of group litigation would be raised was imminent) and also sought Ministers’ views on the question of “ultimate liability” raised by counsel. In the background information in both the submissions of 15 and 26 June, it was said: “We believe that the government has a fair chance of successfully defending its role, given that at every stage it has acted as swiftly as possible to minimise the risk of infecting haemophiliacs with AIDS in the light of the best expert opinion available at the time.[98]

Department of Health: line to take

Though the litigation raised difficult questions of law, this statement of belief contained an assertion of fact. Dr Andrzej Rejman, then a senior medical officer within the Department of Health, was asked during his oral evidence to the Inquiry whether he knew what “enquiries or investigations or information the Department had in 1989 upon which to base such a confident assertion of everything having been done, essentially, as well and as quickly as possible.[99] In a lengthy answer Dr Rejman said that “to a large extent, I suspect this was based on ... earlier considerations in 1988 and early ‘89” which is when he thought that people within the Department of Health and legal advisers and counsel would have been starting to consider whether there were matters upon which the Department of Health might be liable.

He then said: “I think Charles Dobson is basically saying ‘Look, we’ve spoken to counsel and counsel has said that, overall, he thinks that the case is – – can be defended on the basis that people actually did their best at the time with the knowledge they had at that time.’ ... And the expert opinion would presumably have been opinion they got primarily from the UKHCDO, who were the experts in the field”.[100] In short, Dr Rejman himself did not know: he assumed it was the case, rather than having taken any steps himself to check; and the answers to the questions which followed in his evidence to the Inquiry immediately showed that so far as he knew the Department of Health had never itself gone through all the papers to inform an opinion.

When John Canavan was asked about the same phrase during his oral evidence there was an exchange as follows:

“Q: Now, Mr Canavan, that sentence contains a positive assertion of what the Government has done and a positive assertion about the quality of expert opinion available to it. Would you agree that for that kind of assertion to be made to ministers, civil servants should have a proper factual basis for being able to say that in those terms?

A: Yes.

Q: Do you know what enquiries or investigations or fact finding had been undertaken by mid-June 1989 to enable Mr Dobson to make that confident assertion?

A: Well, probably by then he would have had a chance to read the background papers and his submission was probably passed round a number of colleagues before it went up ...

Q: As far as you can recall, had you at this stage, so we’re talking in the sort of first few months – – the first half of 1989, had you been involved yourself in any examination of the Department’s past actions, the Government’s actions, the advice available to it?

A: I cannot really recall that I had” .[101]

Shortly after that, John Canavan was asked in evidence about the Government’s approach to expert evidence, seeking to know whether what the Department of Health wanted was expert evidence supporting the Department’s case as opposed to “warts and all” expert evidence which might criticise the Department’s position. He answered: “I think we were expecting that some of the experts would have critical comments to make.[102]

It is difficult to reconcile the statement of perfection in the submission put to ministers, without qualification, with the statement that the Department of Health expected that some experts would be critical. It is also surprising that the initial reaction, which was to assess the strength of the claims, had not resulted in a more nuanced response, based on documents and some evidence.

Dr Hilary Pickles, who was principal medical officer in the Med SEB[103] branch of the Department between March 1988 and June 1991, was so confident in the correctness of the defence that she felt there had been no negligence by the central defendants and those advising them such that, when it came to the prospect of settlement, she was unhappy about it.[104] Nonetheless, when asked about the same phrase as Dr Rejman and John Canavan had considered, whether there would need to have been some sort of factual assessment of what it was the Department of Health had done, what evidence and advice had been available to it before making such an assertion to ministers, there followed this exchange:

“Q: But is this right, you don’t know what the factual basis for that confident assertion was?

A: Well, you say factual basis. I mean, I didn’t have time to go back through all the historical records that were there when I started in AIDS.” [105]

By way of comment, the evidence of the three people who gave evidence orally about this phrase in the submission showed, therefore, that none actually knew whether it was accurate.[106] None was aware of anyone having taken any steps to check that it was the case.

However, it must not be thought that Charles Dobson drafted the submissions without input from others: the first had been widely circulated, and there is no record that any exception was taken to the phrase. The focus may have been on the tactical issues with which the memo was centrally concerned. The second had been seen by a senior official (Strachan Heppell) and the CMO, amongst others.[107] No one queried the basis for the assertion.

The statement given to ministers, which asserted that “at every stage it [the government] has acted as quickly as possible to minimise the risk of infecting haemophiliacs with AIDS in the light of the best expert opinion available at the time”,[108] foreshadowed the similar view, repeated both at this time and later, that patients had had the best available treatment in the light of medical knowledge at the time.[109] Both statements make bold claims. There was agreement in evidence that any such claim, as to fact, should be based upon a solid foundation of evidence. Yet it is difficult to avoid the conclusion that civil servants who, honestly but uncritically, adopted the phrase had no knowledge of any particular fact finding that had led to it. In essence, they relied upon the opinions of others, without knowing what they might be based upon.

A departmental view appears to have arisen. It was strong. It is difficult to resist the conclusion that it owed more to a sense that the Department of Health was defending the position of those who had worked in the health service and in government,[110] and that this statement was what they would prefer to believe rather than having any clear factual basis for doing so. On the face of it, it is not only a bold but an astonishing claim that over 1,000 people had been treated with blood products and had contracted HIV as a result, and that a number of people had been given transfusions and had contracted HIV as a result, and yet that they had had the best available treatment at the time, and that government had done everything it could, as quickly as possible, to avoid what happened. It could have been so, but the idea is so counter-intuitive that asserting that it was indeed so required careful and critical examination of the available factual material.

The very fact that it was “expected” within the Department of Health that a number of experts who might be approached would be critical of the Department of Health (as John Canavan’s answer shows)[111] suggests that people within the Department of Health who echoed the statement were nonetheless aware that it could, legitimately, be said that government had fallen short in its efforts to protect its public. It seems that, even knowing this, the statement was made without any qualification, or even a suggestion that there might be another, legitimate view, and that this was done without any further (or indeed any) investigation to check the facts. If the statement of belief were true, this should mean that there would be no prospect of liability being established, even if the significant legal difficulties in the way of the claims that had been brought were resolved in favour of the plaintiffs.

There is a significant contrast between these confident assertions of blamelessness and a view expressed to the Treasury when the question of liability and settlement were discussed in November 1990. A confidential note to the Chief Secretary to the Treasury, copied to the Permanent Secretary, said that: “I understand from DH that there are more than 500 sufferers who might in principle have contracted the virus after the stage at which hospitals might reasonably have been expected to use different forms of treatment, even though there must be a very high probability that the vast majority of these cases would have contracted the virus well before that point.[112]

This understanding of the Department of Health’s analysis appears to have been the view taken by their legal advisors, rather than by policy officials or medical advisors. The legal advisors thought that there were some 20-30 cases where medical negligence was likely to be established, and up to 500 more where infection was likely to have occurred at the end of 1984 or in 1985.[113] Nonetheless, this view, which is attributed to the Department of Health, is inconsistent with the line that “at every stage it [the government] has acted as swiftly as possible to minimise the risk of infecting haemophiliacs with AIDS in the light of the best expert opinion available at the time.[114]

This reported view of the Department of Health also calls into question whether the line that was thereafter adopted in a number of ministerial pronouncements, reflecting the briefings the ministers had received, that there was no basis for a public inquiry, nor for compensation, because patients had received “the best available treatment in the light of medical knowledge at the time”, was justified by any adequate evaluation of the facts.[115]

Early thinking on settlement

There may be many reasons why a court case will settle. Few, if any, cases are entirely without risk of losing. It may, often rightly, be said that the point at which to settle a case in which compensation is sought is the point at which the chances of getting more are balanced by the risks of getting less (or vice versa so far as the defendant/defender is concerned). Many people want to settle for reasons of cost, funding, delay, stress, fear of publicity, or because they think their point will have been made by some payment, even if it is not as much as they would like. In the case of group claims, the position is even more difficult: for members of a group may each have their own particular objects to achieve, yet each claim is technically a separate claim though aspects of it will be common to other claims, making it convenient, sensible and just that those aspects should be heard together at one and the same time.

Many of these issues were at play in respect of the HIV litigation. For instance, it was commonly thought that many of the plaintiffs would not live for long. That may have made speed, and the certainty which comes with a settlement (which, if agreed, is hardly ever the subject of appeal, with its onward delays) more important than in most cases. Recognition that a wrong may have been done was important, too, most particularly because it would help to counter some of the effects of stigma plaintiffs had suffered. Instead of vilification by much of the public, there would be recognition that wrongs had been done to them, and that they were blameless.

For the defendants, too, there would be a mix of motives: haemophilia centre directors recognised that plaintiffs who were being treated by their centres often blamed them for failures which had led to their illness. Yet, as people with bleeding disorders, they continued to require treatment. To cast such doctors as the defendants to legal claims brought by their patients made it exceptionally difficult, both for the plaintiffs to accept the treatment being offered, and for doctors to continue to provide treatment to people who were suing them. Government, and health authorities, were always likely to be worried about whether any acceptance even that the plaintiffs’ case was arguable, so as to lead to a settlement, would encourage other patients in different circumstances, who felt wronged by the way they had been treated, to take group action against health authorities or the Department of Health.

The positions taken from time to time during the course of the HIV litigation demonstrate many of these aspects. It would be simplistic to think that in this case settlement was simply a question of whether the facts were sufficiently strong in favour of the plaintiffs for the defendants to wish to make a payment in respect of them, or the legal arguments for the defendant so strong that the plaintiffs would wish to secure what they could against the risks that they would lose whatever chance they had of receiving anything.

There was a desire within members of the UKHCDO for the Government to provide compensation. This came to the attention of Dr Rejman, who was the main conduit between UKHCDO and the Department of Health. His view was that at meetings directors pushed for the Department of Health to seek a settlement.[116] The press, too, were sympathetic to the claims.[117]

By 16 October 1989 Charles Dobson reported to his colleagues within the Department of Health dealing with the litigation that:

“There are growing signs that ministers are becoming increasingly uneasy at the current advice from officials that, on balance, the government should resist the claim of HIV-infected haemophiliacs and if necessary fight it out in court. For instance, MS(H) has on two occasions asked for briefing on articles in the Sunday Times, and, on the most recent occasion, has asked for ‘advice as to whether there is any case for changing the basis for funding the Macfarland Trust [sic] – if we can find any money for ‘topping up’. MS(H) also ‘feels that the Department will lose on this whatever the outcome of the court case and would like to see what more can be done’.”[118]

This suggested to him that there should be a review as to the position that had been reached on the AIDS litigation front and “to consider what options could be offered to ministers if they were minded to be more responsive to the haemophiliacs’ case (eg an out-of-court settlement which did not require HIV-infected sufferers to demonstrate financial need); and to consider how any such relaxation could be presented in the most favourable way.[119]

Accordingly, on 26 October 1989 Charles Dobson submitted a paper to the private office of the Minister of State. It reviewed the position on the litigation and on the Macfarlane Trust, and in a separate part considered options for making more money available to “the haemophiliacs”. The five options were:

  1. an out-of-court settlement
  2. increasing the Macfarlane Trust funds
  3. making an ex gratia payment
  4. establishing a commission of enquiry[120]
  5. publicising the Government’s position, by responding to the “allegations and misinformation contained in the Sunday Times campaign” for example with “a parallel history of the facts” forming the basis of a press release.[121]

In his covering note, Charles Dobson described none of the options as being “without difficulty” explaining:

“the cheaper ones are unlikely to buy much peace, and the more expensive ones run a severe risk of knock-on effects (eg on other litigation against the licensing authority, or of setting a precedent which would encourage other victims of medical accidents). And it is likely that the Treasury would resist any additional expenditure so long as Counsel advises that we have a good chance of winning the case. Our advice therefore remains that ministers should continue with the litigation and should not signal any readiness to provide additional funding, beyond the steps already in hand to allow greater flexibility to the Trust (and a veiled promise to consider topping up when it is needed). Ministers are also invited to consider the possibility of responding to the more inaccurate newspaper comments, so far as this is possible or advisable now that the case is before the courts.”[122]

At this stage, Kenneth Clarke who was by now the Secretary of State for Health wrote to the Prime Minister, then Margaret Thatcher, about the campaign in the press being run on behalf of people with haemophilia. He referred to the litigation. He asserted that there was no negligence on the part of the clinicians involved or on the part of the Government, expressed the view that the court would find in favour of the defendants, and was “strongly of the view that the case should go to trial, and that we should not take any action that implied an admission of fault.[123] Though it had been suggested that an out-of-court settlement should be reached he was against this on two grounds: first there would be an implication that liability had been accepted which would have implications for NHS treatment generally, and secondly the cost consequences would be “enormous”. The “real cost”, including knock-on effects, would be unquantifiable. He went on to describe how reaching a settlement with this particular group of plaintiffs would represent a precedent for others. However, in light of the degree of public sympathy aroused by the campaign he suggested, and secured her approval to, a further allocation of £20 million.[124] (In the result, it was some £24 million to provide £20,000 each to 1,200 people with haemophilia).[125]

The option of paying additional funds to the Macfarlane Trust was therefore taken.

It was thus that on 23 November 1989 it was announced that additional monies would be made available to the Macfarlane Trust to enable each person with haemophilia who was registered with the Trust to receive £20,000.[126]

It was reported by Kate Lee, a solicitor acting for the central defendants, that counsel had then considered the possibility of sending a letter informing the plaintiffs that if they discontinued against the defendants the Government would forgo its own costs. It was suggested that, viewed with the additional money being made available to the Macfarlane Trust, this “may be seen as a sympathetic gesture.[127] Richard Gutowski expressed unease about writing a similar letter, because: “such an action could be construed as being overly aggressive. It could be argued that having given the Plaintiffs an additional ex-gratia payment the Government were now squeezing for the action to be discontinued especially as the payment was outside the litigation ie that the Government was buying itself out of the litigation.[128] On the same date Charles Dobson wrote and accepted this point: an open letter warning the plaintiffs about the costs of proceeding could too easily be misinterpreted by the press and this course was therefore seen as being “politically unacceptable.” Charles Dobson said he had consulted with Dr Pickles and Dr Rejman before expressing that view.[129]

Letter from Mr Justice Ognall June 1990

Mr Justice Harry Ognall was the assigned judge. The case was due to be heard in March 1991, but the judge had charge of procedural issues which arose before that in preparation for trial. Having considered these issues at a preliminary stage, he then took the unusual step of writing to the parties to set out his view that compromise of the action was desirable because it was “cardinally important” that people should not die before knowing the outcome of the litigation.[130]

The letter read as follows in its material parts:

“It is rare that I take an initiative of this kind in civil litigation before me. But the circumstances of these actions are such that I have no hesitation in doing so, and in much more specific terms that might normally be expected or considered appropriate.

Now that the issues have been clarified by the pleadings, I wish to invite the parties to give anxious consideration to the prospects of any compromise of these proceedings. If consideration is already being given, I would like to think that these observations will lend impetus to it.

So far as the Plaintiffs are concerned they, no doubt, recognise the legal difficulties attending the argument as to the nature and extent of the alleged duty of care and its breach. Likewise, with regard to the issue as to whether any proven breach of duty is capable of giving rise to any individual cause of action by an injured party. The Plaintiffs advisors have no doubt also taken account of the issue as to causation in each individual case.

There must also be, I suppose, unusually large areas of uncertainty attendant upon assessment of quantum.

But when all those factors are taken into account, it seems to me that for a number of reasons, it is not an abuse of language to describe these actions as unique in their surrounding circumstances. I hope that I will be allowed to identify some of those circumstances.

A government which takes upon itself the role of public provider of medical advice and clinical services is in a very different position to any commercial organisation. It is clearly arguable that their duty to innocent citizens who suffer injury under the aegis of such treatment has a moral dimension to it which should distinguish their assessment of their position from that criteria to be adopted by other defendants of a corporate character. Government owes a duty under this to its shareholders or insurers. It should also mean that the public may be entitled to expect from government an appraisal of their position which is not confined solely to legal principles to be found in the law of negligence, or problems of proof.” [131]

He went on to say that compromise did not necessarily mean any admission of blameworthiness. He drew attention to the plight of the plaintiffs, or many of them, as a “special one”: that they lived in the shadow of a fatal condition for which there was presently no known cure; that many might die without knowing the outcome of the litigation; that it might well be the end of 1991 before the legal process had been exhausted; and that it was common ground that all the plaintiffs were entirely blameless. In the event of the plaintiffs succeeding, it might then be necessary to take further time to set “benchmarks” for quantum. He added:

“It might be said that I have raised consideration of a political rather than a purely legal character. I acknowledge that. But I believe that the legal profession has a duty to do its best to see that the legal system does not become a scapegoat in the eyes of the public for what I fear may be perceived as the unjust and inhumane denial of any significant measure of compensation to the plaintiffs. ‘The law must take its course’ is not an attractive principle in the context of this case.”[132]

The statement by the judge was made on 26 June 1990. Both sides responded in their own way.

Department of Health reaction to the letter from Justice Ognall

So far as government was concerned, the Chief Medical Officer (“CMO”) sent a minute to the Minister of State for Health and to Kenneth Clarke as Secretary of State on 20 July throwing his weight behind the judge’s recommendation and suggesting some payments should be made.[133] Whereas he might be seen as supporting compromise, an opposite view was taken by senior civil servants. On 24 July 1990 Strachan Heppell, a senior civil servant, sent advice to the CMO, the Minister of State for Health and the Secretary of State, covering a submission from Charles Dobson.[134] Following advice from counsel, and a submission from regional directors of public health,[135] Strachan Heppell said that the choices boiled down to two: continuing to resist the present action firmly whilst being ready to consider further help through the Macfarlane Trust; or, secondly, seeking a settlement out of court in one form or another. He recommended that government should not follow “the route mapped out by Mr Justice Ognall.” He concluded by saying: “At the same time, in recognition of the very special circumstances of the haemophiliac families, further payments under the MacFarlane Trust would be very welcome and help to make the Government’s position look less hard-nosed and unyielding.[136]

Kenneth Clarke maintained his view that the Government was likely to win and, although he said in evidence to the Inquiry that he did not fundamentally disagree with much of what the judge had said, did not think it persuaded him that there should be a settlement. He said the judge was “setting out the same principles that had led us to give the money to the Macfarlane Trust.[137] His Private Office responded to Strachan Heppell on 31 July: he was “in favour of sticking to our legal defence and continuing to fight the action. He does not think it is necessary at this stage to send a minute to the Prime Minister and he considers that the decision should be communicated to the Judge and the Plaintiffs’ solicitors in strict confidence.[138] As he said in evidence, everyone had concluded that an ex gratia payment was the best way of handling the matter: there was “a case for using public funds to make some compensation”.[139]

Nonetheless he sought to discuss the issues of settlement with the Chief Secretary to the Treasury, in late September 1990. In Treasury advice under a paragraph headed “Mr Clarke’s dilemma” it was said of his views that: “Mr Clarke is instinctively disinclined to proceed [with an out-of-court settlement] while being aware that the Government is likely to encounter severe criticism whatever it does. He has not, however, made up his mind and would like to discuss the position with you, especially given the large potential financial implications.[140]

What was for discussion were three main options as the Department of Health then saw them: to indicate a willingness to negotiate an out-of-court settlement, to decline negotiation and let the court case take its course, or to make a payment into court. The Treasury advice suggested taking the second option, which Kenneth Clarke instinctively favoured.[141]

By late October the position had not changed: Kenneth Clarke, with the support of the then Chief Secretary to the Treasury Norman Lamont, did not approve of the idea that the central defendants should settle the litigation, though they thought that once the case had run its course and the expected judgment in favour of the Government had resulted, they would then make a substantial payment to the Macfarlane Trust.[142]

Plaintiffs’ reaction to the letter from Justice Ognall

The response of the plaintiffs to the judge’s views took a different course. On 7 September 1990, the plaintiffs’ lawyers wrote to the central defendants in response to Mr Justice Ognall’s observations and proposed that consideration be given to a settlement.[143]

What then happened is indicated by a Department of Health summary of the campaign for the settlement.[144] From that it appears that though the lead firm of solicitors, Pannone Napier, had suggested a settlement figure of £80-90 million plus costs in informal discussions with the solicitors for the health authorities, they had indicated that a settlement might be reached at a lower figure. Though Kenneth Clarke did not wish to initiate any negotiations, nonetheless with the Department of Health’s knowledge the health authorities (who were also defendants to the action) encouraged Pannone Napier to explore with the other solicitors for the plaintiffs whether they could agree a realistic settlement figure which could be offered to the Department of Health.[145]

In response, the plaintiffs made written proposals for a settlement in the range of £30-60 million. They invited the Department of Health to make an offer in the upper end of the range. Kenneth Clarke met counsel on 1 November to discuss it. He confirmed that there should be no offer from the Department of Health, but counsel would make known to the plaintiffs that if they were to suggest a settlement figure around £20-25 million it might be considered: it would have to be acceptable to all plaintiffs and end the litigation. The advice of counsel to the Department of Health suggested that though the Government defendants should be able to defeat the claims there were “a number of areas of risk and therefore it would be unwise to proceed on the assumption that all the plaintiffs’ claims will certainly fail.[146]

Since Mr Justice Ognall’s letter, and the plaintiffs’ letter of 7 September proposing that settlement be considered, the Court of Appeal hearing had taken place.

That is how the position stood at the beginning of November 1990.

Reaching the settlement

At the very start of November 1990 there was political change. Geoffrey Howe resigned from Margaret Thatcher’s Government on 1 November. This prompted a reshuffle. That led to Kenneth Clarke leaving the Department of Health and William Waldegrave becoming the Secretary of State on 2 November, a Friday. The following Monday counsel for the central defendants met lead counsel for the plaintiffs. The government lawyers indicated that they could not initiate a compromise but were prepared to listen.[147]

The steering committee of the plaintiffs met that evening, and a further meeting between counsel for the parties was arranged for the Wednesday evening.[148] On Friday 9 November 1990 the plaintiffs’ lawyers proposed settlement. The proposed heads of compromise began by saying “The Plaintiffs’ counsel would be prepared to advise the Steering Committee and individual Plaintiffs to settle their cases for payments of categorised amounts to the MacFarlane (Special Payments) Trust totalling approximately £42M [million]” subject to instructions from the clients.[149]The figures were to cover all the people with haemophilia registered with the Macfarlane Trusts as well as all the plaintiffs, and did not include any previous payments made to the Macfarlane Trusts. It then set out a table showing different figures for different categories of plaintiffs, including people who were concerned that they may become infected with HIV because of their association with someone infected.[150] Different figures were given for each category. A further condition was that state benefits would not be affected by the payments, and that medical negligence cases brought against the health authorities rather than the central defendants would be allowed to continue if they fell within certain criteria.[151]

As far as William Waldegrave was concerned there was a shift when John Major became Prime Minister at the end of November. Lord Waldegrave told the Inquiry that there was a moral responsibility for the Government: that it would have been a horrible experience for those making the case to have to go to court, and damaging for the Government because of the bad press they would take for being heartless. The moral case was, in his view, justified since it was not all down to the actions of a single clinician who had been negligent but to wider matters.[152] He was advised by the Department of Health and by the Treasury that the figure was “on the high side”, and “We’re going to have great trouble getting the money from the Treasury.[153] He observed:

“on the other hand there is the anxiety that we would have what I think is referred to in the papers as a public auction from the other side. And I believed that this was one of those moments in – – that sometimes happen in any negotiation where there was a chance of agreement and that if you went for it quickly, it could be agreed. And if there was a long process of discussion, whether public or private, it was very likely to come to pieces and we’d be back where we were in the first place, which I thought was a horrible position both for the victims and for the Government. That’s why I was so anxious for speed. And I notice that in the notes from Rupert Jackson he talks about the need for speed.”[154]

He considered that there were two arguments which were key to winning the argument with the Treasury. “The victims’ lawyers have come forward with an offer that they say will be seen as fair by their clients. This will not recur, we’ve got to do this and do it quickly. And look at the numbers; you can afford them, we can afford them. We both knew the issues surrounding the people. This was why it had to be done now and quickly. And it was affordable.[155]

He went through the issues in detail with the new Chief Secretary to the Treasury, David Mellor, on 6 December 1990 and an approach was agreed by the two departments. On 7 December William Waldegrave wrote to the Prime Minister, concluding that the cost of a settlement as proposed by counsel for the plaintiffs would be higher than the most favourable outcome from fighting and winning the case, but much lower than the cost of fighting and losing the case badly, and recorded that the leading counsel for the plaintiffs had told Andrew Collins QC (who acted for the Government) that the settlement would stick and that he would advise the steering committee to accept it, but that the longer matters dragged on the more difficult it would be for him to get agreement from his clients.[156] The minute to the Prime Minister continued:

“The Chief Secretary and I believe that we should not pass by a possible opportunity to settle this very difficult issue. We are coming under increasing pressure to settle, not least from our own backbenchers. Settlement now would enable us to avoid the long-drawn-out court cases, beginning next March, in which public sympathy will be with the haemophiliacs. It will also strengthen our position in dealing with Rosie Barnes’ Private Members Bill on no-fault compensation. The amounts payable per person ... would not be publicly regarded as overly generous ... We think it would be better to settle on the figures proposed by the haemophiliacs’ counsel ... than to bargain publicly for lower figures, which would carry the risk of sparking a public auction in which the Government would receive little credit and could end up by paying more.”[157]

Amongst further matters to which the Ministers gave particular importance were that “recipients of the new money would have to undertake to drop the existing cases and forswear bringing any future cases on the matter”, all the plaintiffs would need to accept the settlement, the medical negligence cases would have to be identified for settlement out of court in accordance with agreed criteria, and the terms of acceptance should be carefully considered with legal advisers so as to “minimise difficult precedents for the future.[158]

John Major, who formally became Prime Minister on 28 November 1990, commented in evidence to the Inquiry: “It would have been absurdly foolish ... not to have taken the opportunity of settling an issue that had caused a great deal of anguish for the victims. But also was dragging on for so long that one needed a definitive settlement. And it seemed to me that it was entirely right, and if that could be an agreed settlement, rather than imposed settlement, it was far more likely to be acceptable”.[159]

The submission from William Waldegrave had gone in his weekend box. His civil servants told him that there were significant risks, but that the Health Secretary, Chief Secretary to the Treasury, Social Security Secretary, and counsel all thought that those were outweighed by the advantages.[160]

Announcement of settlement

On the Monday, 10 December, the Prime Minister agreed to the proposals.[161] William Waldegrave then wished to make the announcement on the very next day that there was an agreement in principle to accept the deal that the plaintiffs’ counsel had put forward.[162] Despite intra-departmental concern about this, because it would come in advance even of a reaction from the steering committee of solicitors representing the plaintiffs, William Waldegrave secured an agreement to his proposal.[163]

When asked in evidence why he wanted to announce it whether or not there had been any agreement with the plaintiffs’ representatives, and in circumstances where the plaintiffs themselves clearly would not all have agreed, he said:

“Well, two things. As is said in that minute, I’m not going to get any more money. That’s the threat from the Chief Secretary saying it’s in my interest to do what he thinks is best, because I won’t get any more money. Second, looking that weekend, I think, or that Monday – – and I can’t remember – – at the tactics that I’d agreed with the Treasury, they are very foolish tactics. The idea that more than a thousand people could agree and only at that point, when they’d all agreed, would we say that we were going to accept the offer from their side, would be bound to result in a public auction. And as I’m being warned by the Treasury, I won’t get any more money for that. So there was a real risk that the whole deal was going to come to pieces at that point and we’d be back where we were. So that, concentrating on it – – I don’t know what else I was doing that weekend or where I was – – concentrating on it, it seemed to me that what I’d agreed and what the Treasury thought was a good thing to do was bound to fail, and therefore I’d put to the Prime Minister clearly that we should do it in the other way, which then worked. And I’m glad that I did that, because having a momentary froideur with the Treasury was well worth getting what I thought and what Mr Rupert Jackson thought and Mr Andrew Collins thought was a fair deal through and done. And it worked.”[164]

Accordingly, although the steering committee had not yet accepted the proposals which counsel had said they would recommend to the committee, nor had individual plaintiffs presumably told the steering committee of their approval,[165] the Prime Minister announced the settlement orally to Parliament on 11 December 1990. He did however indicate when doing so that the settlement still had to be formally approved by individual plaintiffs and in the case of minors by the courts.[166] The Haemophilia Society did not itself represent any of the plaintiffs, though many were members of it, and it had campaigned vigorously for compensation. In a press release the Society described its reaction as one of “grave disappointment”. The general secretary, David Watters, both praised the two politicians at the centre of the Government’s reaction – he described it as “a triumph for a caring Prime Minister and Secretary of State for Health. John Major and William Waldegrave are to be applauded for addressing this problem so promptly”– and said “it is unfortunate the settlement has been so low.[167] David Watters wrote to local group officers and the executive committee the next day:

“It came as more than a surprise on Tuesday afternoon to learn that the lawyers involved in the HIV litigation had agreed on a package to recommend to individual plaintiffs. It came as more of a surprise that the announcement was made in the House of Commons without the proposal having been put to those taking legal action themselves!”[168]

The following month David Watters wrote to William Waldegrave: “While the vast majority of our members have indicated their intention to accept, this is being done with resignation and disquiet, recognising that there is really no option since it is financially impossible to fight on.[169]

With regards to the cases in Scotland and Northern Ireland, Strachan Heppell advised William Waldegrave on 14 December 1990:

“We have been working on the basis that as before the matter will be settled on a UK basis. If the Scots decided not to settle on the same basis as the English and Welsh litigants we might have a handling problem. But we doubt whether this will happen. We would not release any of the money to Scotland or Northern Ireland until the litigants had signed up to the same arrangements as in England and Wales. If the Scots did not do so, the offer would be taken off the table for Scotland and the Scots litigants would run the risk of not getting anything.”[170]

The pressure to settle

It is plain from the evidence which the Inquiry has received that many of those involved as plaintiffs in the litigation felt that they had no real choice but to accept the settlement. The wife of one of the plaintiffs explains that:

“The Government then announced a settlement payment in December 1990 and [my husband] attended a meeting in London with Mark Mildred of Pannone Napier to discuss the matter. HIV infected haemophiliacs and all litigants, or at least a commanding majority, had to accept the offer, drop the litigation, and sign a waiver of rights ... The legal action involved a difficult and voluminous case and [my husband’s] decision, based on the premise the Government would never do the right thing in a unique and tragic medical case nor admit liability for criminal negligence, was to take the offer which was £60,500 for him. This settlement was distributed early summer 1991. Plaintiffs were dying every month and [my husband] was worried about my future. This is the only time I ever heard [my husband] swear and he was furious knowing that despite all his efforts for his family we were going to lose him, with the knowledge he would die a terrible death. His opinion was that this offer was shameful and nothing for a person’s life let alone his earnings potential and the loss of our family life together.”[171]

Her husband died in 1995.

Joan Pugsley’s husband Philip was also a plaintiff. A local newspaper article on 20 December 1990 highlighted the dilemma for Philip and the other plaintiffs:

“They can either accept the relatively small share offered to them or face a long court battle that they may not live to see resolved ... The Pugsleys have been advised by their solicitor to accept the offer even though it is smaller than they might have expected, since to fight for a larger payment could involve a protracted court battle lasting as long as five years, with no guarantee of a satisfactory outcome at the end of it. By that time, in any case, many of the sufferers will be dead.”

A week after the publication of that article Philip was admitted to the Churchill Hospital “for the last time.”He died in early 1991.[172]

Alan Burgess wished that they had had “our day in court ... We might not be here now, because I think the facts would’ve come out and we’d have been in a better place ... I must admit, at the time, prognosis wasn’t that good, and you think, well, they offer you this money, you have to – – you have to accept or nobody gets it.[173]

Heather Evans, whose husband Perry was a party to the litigation, recalled that “It was Hobson’s choice. It felt like blackmail ... Everybody felt the same”.[174] A woman whose son was infected with HIV did “not think that the settlement reflected what we had suffered, particularly if things were going to get worse. We did not seem to have a choice though, so we accepted the money.[175]One woman explained that her husband was in hospital when the proposed payments were announced on the news: “He was devastated by the derisory figures. On hearing that statement [he] gave up and sadly passed away before he was able to receive the cheque.[176] Alice Mackie describes a similar pressure in Scotland to accept the settlement offer.[177]

The waiver

When David Mellor and William Waldegrave presented their agreed position to the Prime Minister over the weekend of 7-10 December 1990 a point to which they attached particular importance was that “recipients of the new money would have to undertake to drop the existing cases and forswear bringing any future cases on the matter”.[178] That foreshadowed what has become known as “the waiver”.

Dr Rejman sent a memo to the solicitor acting for the Department of Health in the litigation, Ronald Powell, on 22 February 1991 about individuals who were HIV negative and as such not covered by the HIV haemophilia general settlement, bringing litigation about hepatitis infections. He said: “I believe that any that are HIV positive would have to agree not to raise hepatitis in any further litigation, but this obviously does not exclude those not in the scheme.[179]

When it was put to him during his evidence to the Inquiry that his minute might have been the genesis of what later became a general undertaking not to sue in respect of hepatitis he did not agree that the idea came from him. By using the words “I believe” he said he was not expressing a new idea but recognising an established position, that he had been given to understand from earlier exchanges amongst those working in and for the Department of Health.[180]

It follows from the fact that reference was made to forswearing further claims in the conversation between the Chief Secretary and the Secretary of State that the idea of surrendering rights to make further claims was not a new one: but it remains the fact this was the first reference to hepatitis of which there is any documentary record. Although a more natural reading of the words beginning with “I believe that” would be that they were making a suggestion to others, the words also fit what Dr Rejman is describing. As matters proceeded, the question of whether there should be a waiver or not, and the terms of it, were matters for open discussion and agreement between the plaintiffs’ and the defendants’ respective legal teams – what is recorded below evidences this.

It was common in personal injury litigation at least during the 1990s and early 2000s that where a claim was settled there should be an acceptance by the plaintiffs that they would not re-litigate in respect of any other illnesses arising out of the same set of facts. Strictly speaking, such an undertaking is unnecessary as a matter of law, since it is a general legal principle that a person should bring forward all the claims that arise out of a given set of facts in one and the same action. This is known as the rule against multiplicity of actions. However, it is also recognised that this rule should not create an injustice, so that, potentially, if in all the circumstances justice requires it, a further action can still be brought. An agreement made between two competent adults may however be enforceable even if there is an argument later that it is unfair: in effect, the agreement precludes the chances of this argument succeeding.

In respect of the litigation, therefore, the lawyers acting for both parties would not be surprised to see a term included in the final agreement which precluded any further action arising out of the same set of facts. The agreement to be reached on settlement reflected this in its various drafts, before reaching a final form.

The earliest consideration of what, if any, restrictions to place upon the plaintiffs as a condition of receipt of payment under the settlement agreement came on 12 December – the day after the announcement had been made to Parliament, and well before Dr Rejman’s reference to what he believed to be the case. A draft read: “The Plaintiffs will discontinue their actions against all Defendants and will undertake not to bring fresh proceedings, save that those Plaintiffs who have already made allegations as to clinical management shall be entitled to pursue that element only of these claims against the relevant Health Authority.” (It went on to define the “medical negligence” cases more closely.)[181]

This was then expanded in a further draft of 21 January 1991. The relevant parts read: “The Plaintiffs will discontinue their actions against all Defendants and will undertake not to bring fresh proceedings against any Defendant or against any other Government Department, health authority or treating doctor”. There was the same exception for medical negligence cases already brought.[182]

Neither of these two iterations define the nature of the claims to which the words “fresh proceedings” related. However, the wording now went beyond those who had been named as defendants in the original action. It covered treating doctors.

On 23 March 1991 the draft was refined further. This time the fresh proceedings were more closely identified:

“The Plaintiffs will discontinue their actions against all Defendants and will undertake not to bring fresh proceedings against any Defendant or against any other Government Department, Health Authority or treating doctor in respect of the administering of cryoprecipitate, Factor VIII or Factor IX, save for those Plaintiffs whose code numbers are set out in Schedule Seven hereto shall be entitled to pursue that element only of these claims against the relevant Health Authority”.[183]

The latter words refer to ongoing medical negligence claims.

This was followed by correspondence on 16 April 1991. This showed the amendments which the plaintiffs’ lawyers wished to make to the suggested text. These included adding the words: “Nothing herein shall prevent a Plaintiff from bringing proceedings in respect of the administering prior to 13th December 1990 of cryoprecipitate, Factor VIII or Factor IX where (i) that has caused damage ... which had not been diagnosed by 13th December 1990; and/or (ii) the damage alleged does not include infection or risk of infection by HIV and/or the hepatitis viruses.[184] By 22 April 1991 these suggestions had been incorporated into the then current draft. It read:

“The Plaintiffs will discontinue their actions against all Defendants and will undertake not to bring fresh proceedings against any Defendant or against any other Government Department, Health Authority or treating doctor in respect of the administering prior to 13th December 1990 of cryoprecipitate, Factor VIII or Factor IX, save that: – (1) those Plaintiffs whose code numbers are set out in Part 1 of Schedule Eight hereto shall be entitled to pursue that element only of these claims which relates to the allegations of medical negligence against the relevant Health Authorities ... and (2) nothing herein shall prevent the Plaintiff from bringing proceedings in respect of the administering prior to the 13th December 1990 of cryoprecipitate, Factor VIII or Factor IX, where: – (i) that has caused damage to such Plaintiff which had not been diagnosed prior to the 13th December 1990; and/or (ii) the damage alleged does not include infection or the risk of infection by HIV and/or the hepatitis viruses.”[185]

This therefore, if agreed, represented an agreement not to make a claim about infection with HIV or hepatitis as a result of treatment administered before 13 December 1990.

It therefore appears that this amendment in these particular terms was first proposed by the plaintiffs’ lawyers.

As pointed out, a clause restricting further proceedings would not be unexpected in settlements relating to personal injury claims at the time. Some five days later, Ronald Powell produced a final draft (it was dated 26 April 1991, but sent to the plaintiffs on 1 May 1991). It read in the relevant parts:

“The Plaintiffs will discontinue their actions against all Defendants and will undertake not to bring fresh proceedings against any Defendant or against any other Government Department, Health Authority or treating doctor in respect of the administering prior to 13th December 1990 of cryoprecipitate, Factor VIII or Factor IX, save that: – ... nothing herein shall prevent a Plaintiff from bringing proceedings in respect of the administering prior to 13th December 1990 of cryoprecipitate, Factor VIII or Factor IX where the damage alleged does not include infection or the risk of infection by HIV and/or the hepatitis viruses.”[186]

That represented the final version of the document so far as people in England and Wales were concerned. Anyone who wished to take advantage of the settlement sums, and anyone who had not been a plaintiff, but was in the same situation – that is, they had been infected with HIV by treatment with blood or blood products prior to 13 December 1990 – would have to sign a document which contained an undertaking not to bring proceedings about infection with HIV or hepatitis.

The terms of the waiver undertaking which was to be signed by each individual were, however, not identical to the terms which had finally been put as the terms of settlement to which the plaintiffs’ lawyers agreed on behalf of the plaintiffs. The waiver in its material parts read as follows:

“In expectation of receiving from the Macfarlane (Special Payments) (No.2) Trust the sum of £23,500 I undertake with the Secretary of State for Health that I will not at any time hereafter bring any proceedings against the Department of Health, the Welsh Office, the Licensing Authority under the Medicines Act 1968, the Committee on Safety of Medicines, any district or regional health authority or any other Government body involving any allegations concerning the spread of the human immuno-deficiency virus or hepatitis viruses through Factor VIII or Factor IX whether cryoprecipitate or concentrate) administered before 13th December 1990.”[187]

The words “concerning the spread of the human immuno-deficiency virus or hepatitis viruses through Factor VIII or Factor IX whether cryoprecipitate or concentrate) administered before 13th December 1990” replaced “in respect of the administering prior to 13th December 1990 of cryoprecipitate, Factor VIII or Factor IX”. The reason for this change of wording is opaque, though could possibly have some relation to secondary transmission from a person directly infected by the treatment they had received. However, the precise interpretation of this, in its context, has never been subject to the decision of any court.

Just as many plaintiffs felt that they had no choice but to accept the settlement offer, they felt that they had no choice but to sign the waiver. A widow recalls that her husband “didn’t want to sign it but he didn’t think he could afford to fight on alone, either practically or financially. In the end he gave in.[188]Denise and Colin Turton, whose son Lee was infected with HIV, describes how “Lee was ill at the time. It was ’91, he wasn’t very well and we’d been asked to sign the form to say that we would not take anything further and we refused, we kept refusing and then we had the solicitor kept asking, saying, ‘If you don’t sign – – you need to sign because if you don’t do it nobody else will get anything’, and in the end we only had three days in which to sign it because we kept saying no, so we signed it because we were told that if we didn’t nobody would get anything and then they told us afterwards that Lee’s money, even though he was dying, would be put in trust until he was 18.[189] Lee did not live to see 18. He died in January 1992, aged ten.

The waiver in Scotland[190]

Following the announcement in December 1990, settlement negotiations in Scotland proceeded separately from those taking place in relation to England and Wales, although Scottish Office officials proposed to rely “where possible on the wording of the English settlement” and not to change the wording unless it was thought necessary[191] and there was ongoing contact and discussion between the Scottish Office and Department of Health lawyers.

Over the following 12 months discussions continued in parallel between the Department of Health solicitor (Ronald Powell), and the solicitor acting in the litigation for the Secretary of State for Scotland (Richard Henderson) on the one hand, and between Richard Henderson and Balfour and Manson, representing the Scottish pursuers, on the other. Thus on 18 April 1991, writing to Balfour and Manson, Richard Henderson suggested draft wording for an undertaking to be provided by the Scottish pursuers and other people with haemophilia who might take advantage of the terms of settlement which did not include a promise not to take any future action in respect of hepatitis.[192] This was in direct contrast with the position in England and Wales. On 26 April a further draft provided by Ronald Powell to Richard Henderson did include an undertaking for Scotland which covered hepatitis as well.[193]

However, following further correspondence and various drafts,[194] the form of undertaking to be included as part of the Scottish terms of settlement was, at first, one which by a draft of 3 May excluded any further action in respect of HIV and hepatitis in Scotland as well as south of the border[195] and then, subsequently, changed to omit any reference to limiting future claims for hepatitis.

By 4 June 1991 Richard Henderson wrote to Ronald Powell to say that the Trust Deed and the undertaking not to take further legal action in respect of treatment with factor concentrates or cryoprecipitate in the 3 May form[196] would have to be changed in respect of Scottish pursuers so that it no longer precluded any future action in respect of hepatitis.[197] This became the definitive position. The settlement in Scotland was made on that basis, for it was the formal offer which, through Richard Henderson, the Scottish Office then put to Balfour and Manson for their acceptance on behalf of the pursuers. The Trust Deed (which covered both English and Welsh people with haemophilia and Scots with haemophilia) was accordingly amended to set out, in a schedule, the undertakings to be given by Scottish litigants.[198] They thus ended up different from those applying in England and Wales because in England and Wales litigants (and non-litigants who as haemophiliacs had been infected by HIV through their treatment) had to undertake not to make or continue any claim in respect of hepatitis as well as HIV, whereas in Scotland they did not.

In 1993 Scottish Home and Health Department officials became aware that the Scottish undertaking was different from the equivalent in England and Wales and sought to understand why. A minute dated 6 October 1993 recorded that: “A thorough review of our files has revealed no reason why the English scheme includes a clause to ensure no claims can be raised for hepatitis infection following receipt of payment for HIV and the Scottish scheme doesn’t.[199]

Though indeed there is no record of the reasons for either version – including hepatitis or excluding it – there were comments in April 1992 which provide some explanation. A minute seeking the approval of the NHS Chief Executive in Scotland recorded that “strong representations” had been received from the infected parties through their solicitors that because the settlement had been in respect of HIV, any undertaking to give effect to that settlement should exclude hepatitis infections.[200]

Commentary

This chapter set out to examine three areas in particular. First, the reaction to the litigation within government which led to a “line to take” being adopted; second, what led to the process of settlement; and third, how it came about that the “waiver” was required: the terms of reference of the Inquiry require it to consider the “appropriateness of preconditions (including the waiver in the HIV Haemophilia Litigation) imposed on the grant of support from the Trusts and Funds”.[201]

“Line to take”

As set out towards the start of this section, the Department of Health’s reaction in March 1989 when the first indications of it being sued arose was (quite properly) to seek to establish the facts and to see whether it had dealt properly with those who were suing.[202] There is little to show precisely how it went about that process, but it moved from a state of internal curiosity to one of having a collective strong view that the Government was not itself at all at fault. The submission that first informed the Minister of State about the litigation contained the unevidenced[203] claim that: “the government has a fair chance of successfully defending its role in the court actions, given that at every stage it has acted as swiftly as possible to minimise the risk of infecting haemophiliacs with AIDS in the light of the best expert opinion available at the time.[204] Over time, the government line would become that patients had received the best available treatment in the light of medical knowledge at the time. This conviction would have informed the Department of Health’s instructions to counsel and its own approach to settlement.

Less than two weeks before settlement, a confidential note to the Chief Secretary of the Treasury showed that there were more than 500 sufferers whose infections with HIV “in principle” might have been contracted after the stage at which hospitals might reasonably have been expected to use different forms of treatment.[205] In a case with just under 1,000 plaintiffs this, if well founded, was to the effect that just over half the cohort of plaintiffs might have avoided HIV if they had been better treated. The inconsistency between this recognition and asserting a position in which it was said that the best was done at all times does not appear to have struck individuals within the Department of Health, though it is the Department from which the information in this note came. Nor did the trenchant comments of a potential expert such as Professor Rose, thought of by the Department of Health as a possible expert for the litigation, whose views were not consistent with the perceived wisdom in the Department, seem to cause any significant reflection as to whether the Department of Health was right in its collective view.

In short, a view was expressed (not simply internally but to the public) which was both unevidenced and misleadingly confident about the quality of treatment that had been given to people with haemophilia; nor was it retracted from or qualified at all before settlement was reached – and even then for many years thereafter.

Reaching a settlement

What is clear, however, is that the “line” set out above was taken by all concerned on the defendant side of the litigation. After the observations made in the judgments of the Court of Appeal on disclosure in September 1990, following on fromthe observations of Mr Justice Ognall made some six weeks or so beforehand, there began to be some hesitation about whether, from the defendants’ perspective, the case remained one which should be fought and not settled. There is no clear evidence that the increasing uncertainty had anything to do with what the Court of Appeal had said, but Government legal advice became less assured than it had been, though it still predicted victory.[206] There then followed the political changes which brought John Major to become Prime Minister and William Waldegrave to be appointed Secretary of State for Health in place of Margaret Thatcher and Kenneth Clarke.

The view expressed to ministers was that the case, though exciting public sympathy, was one which on balance the Department of Health and Government were likely to win. It was brought against more defendants than the “central defendants” whose position has been examined carefully in this section. It was brought, too, against individual doctors and against health authorities. Categories of claims for clinical negligence which could proceed were later set out as an annex to the terms of settlement, presumably in the light of particular allegations made by the plaintiffs in those cases. There was obviously sufficient detail known of the individual claims to enable identification of a number of categories of case which could, depending on the evidence, prove to be well-founded. The settlement provided that these should proceed to trial unless an acceptable settlement were reached in that particular individual case.[207] Apart from such cases (dealt with in the same way as any other claim for damages for clinical negligence would be), however, the Department of Health itself took the lead responsibility for responding to the claims.

There was a mismatch in terms of finance, resources, and in access to knowledge between a Government and a collection of individual plaintiffs represented together as a cohort. Many of the plaintiffs were legally aided. That means that their claims were supported by state funding. Though the Legal Aid Board is independent of government, the risk that it might cease funding the claims if a reasonable settlement[208] were to be refused (especially if only by a handful of plaintiffs) might well have been in the minds of some of the plaintiffs or their lawyers. Some were not entitled to legal aid and were having to make financial contributions towards the costs of the litigation.[209] David Watters said in a letter to William Waldegrave that the majority of the Haemophilia Society’s members involved in the litigation were resigned to acceptance of the settlement “since it is financially impossible to fight on.[210] This may well have reflected a concern about continued funding, though it could have reflected a desperation to avoid any delay in getting further funds necessary to avoid the worst of their financial poverty, and may well have reflected both. There is, however, little evidence that the Government intentionally used its power and position to browbeat the plaintiffs into settlement. Nor is there any evidence that the defendants used the likely short lifespan of many of the plaintiffs as a means to persuade the plaintiffs to take an otherwise inadequate settlement. The plaintiffs would nonetheless be very much aware of it.

The proposals to settle the claim came from the plaintiffs’ lawyers. It was their initiative, prompted by the judge. The figures they proposed, accepted by the Department of Health, were those they felt would be acceptable to their clients (though, again, it needs to be said that there was no representative of the Scottish claimants on the steering committee, nor amongst the counsel putting forward the offer to settle). Accordingly, there is no criticism which arises in respect of either party from entering into the terms of settlement – the appropriateness (in the context of this particular litigation, and the legal bases on which it was advanced) of the amounts ultimately agreed remains a matter between the plaintiffs and their advisers, who under the collective arrangements they had agreed to operate (so it would appear) had recommended it. The real vice is that people were forced to litigate at all, rather than being offered – without the need for litigation – that proper compensation which they are yet to receive.

There was a suspicion amongst some that the announcement of a settlement in Parliament before the plaintiffs had a chance individually to consider both the details of the proposals and the advice of their lawyers “bounced” them into a position which made it difficult for them to refuse the settlement. There is some force in this, but it does not lead to the conclusion that the Government, or the Secretary of State at the time, were taking steps to ensure that the plaintiffs entered into a settlement which represented a poor deal for them. The reason for the pre-emptive announcement by William Waldegrave was that he thought that a public announcement that the Government was prepared to deal would help to secure the steering committee’s agreement. His approach was questioned at the time, both by the Chief Secretary and Number 10 officials who proposed an alternative form of words for Prime Minister’s Questions, and left it to the Prime Minister’s judgement. The Prime Minister accepted William Waldegrave’s proposal but told the Inquiry that “I did not wish for a backlash that it had been imposed on a take-it-or-leave-it’ basis.”[211] It was not known then, as it is now, that the prospects of survival of many of the plaintiffs were to improve dramatically.

The waiver

The evidence before the Inquiry shows that a large number of people who had been infected with Hepatitis C had not been formally diagnosed by the time the settlement was entered into. They were unaware that they were infected with Hepatitis C. The references to hepatitis in the Master Statement of Claim were not there to claim that having that disease justified an award of compensation – they were there to help make a case that self-sufficiency should have been achieved, and then to argue that if it had been, this would have avoided the risk of the UK importing other blood-borne viruses from blood products manufactured abroad, where they had been made from donor populations amongst which different serious viruses might be circulating. They may have allowed for arguments that more should have been done to inactivate viruses, or greater care should have been taken to select donors. But they were not the foundation for any claim for “damages for hepatitis”.

Those for whom the Government bore ultimate responsibility – prescribing and treating clinicians and blood services – did know that certain patients had tested positive, and that it was highly likely that most or all had been infected with Hepatitis C although the patients themselves did not.

It is recognised generally by the law that where a claimant does not know that they had suffered damage for which they could claim, time should not tell against them so as to remove their right to sue. They should be entitled to make a claim from the date they had knowledge.[212] Those plaintiffs who had actually suffered infection with Hepatitis C, and did not themselves know of this, whilst in many cases their treating doctor or hospital did (because it had tested them) but had not told them, would, by entering the waiver, have been surrendering a right to come before a court, later, to explain that they had not known, and that it would be reasonable now to allow them to sue.

Some form of waiver was contemplated from the time that settlement was reached in principle. It was reflected in every draft which followed, although it was only in the later drafts that the word “hepatitis” appeared. The final wording was indeed that which was put forward by the plaintiffs’ side. However, this avoided what might have been a wider exclusion preventing suing for many other conditions. There was, therefore, potentially some good reason for it: it was only to apply to hepatitis infections, and not be so general as to prevent claims for other as yet unknown or unspecified viruses.

There can in very general terms be no objection to parties seeking to agree a waiver – for it is public policy to avoid a multiplicity of litigation arising out of the same set of facts. However, the way that policy is normally articulated is that a plaintiff (or “claimant” or “pursuer”) must bring forward against a defendant all the claims of which they are aware or ought reasonably to have been aware which arise out of a set of facts and circumstances, and relate to that defendant. It would thus not have excluded claims later made by plaintiffs who when they settled their claims in respect of HIV were unaware of their Hepatitis C infections, provided a judge later considered that they did not know, nor ought they to have been aware, that they had suffered from such an infection. The policy is subject to an overall judgment as to where the interests of justice lie – in general that will favour all the claims from one incident or set of events being heard together, but it does allow some discretion to the courts. However, if the principle is put into a contract, then the law will generally be prepared to give effect to that contract according to its terms, since it is what two competent parties have openly agreed. A waiver, once signed, is effectively just such a contract where it is entered into to secure a benefit which would otherwise be withheld.

It follows, here, that there may (strictly speaking) have been no need for the defendants to protect their position and the positions of those for whom it felt responsible by insisting on a waiver. The general law would usually produce the same effect, unless justice required a further claim arising out of the same facts to be litigated. But entering into a waiver does ensure that the parties are aware that if they have a claim they must abandon it, and sign the waiver; or pursue it, and decline to sign.

What is critical in terms of the justice of each case is the awareness of the potential claimant as to whether they had a claim – either their actual knowledge, or an awareness they ought reasonably to have had.

There was no clear evidence available to the defendants at the time that people who had been infected before 13 December 1990 with non-A non-B Hepatitis, or with Hepatitis C once that had been identified as such, knew of their diagnosis or, if they did, knew sufficient about it to understand both the nature of the infection and its potential severity. Both nature and severity were apparent to clinicians and medical advisers at the time. The general evidence to this Inquiry is that few, if any, of those infected had been told enough for them to be in a position to understand the importance of what they might be signing away. In general, they had not been given enough information for them to be able properly to exercise an informed choice whether they should sign or refuse to sign the waiver. It follows that to insist, by relying upon the waiver, that a person who had suffered hepatitis as a result of being infected (and had probably been infected before 13 December 1990) could not sue for being infected with hepatitis would be unfair. Fairness would demand that the infection and its consequences be known of in broad terms if further proceedings in respect of them were to be excluded.

What is fair necessarily depends on an individual assessment, case by case. There may be some who signed the waiver who did know enough (or ought, reasonably, to have known enough) to have sued, just as there will be many, almost certainly likely to be the majority, who did not.

It may well be that both the defendants’ and plaintiffs’ legal advisers worked on an assumption that people infected before 13 December 1990 knew that they had been infected, and what that infection implied for them, at least sufficiently to know what they were or might be surrendering by agreeing to a waiver: but there is no clear evidence of such an assumption, although it might be inferred from the fact that the final wording was first proposed by the plaintiffs’ lawyers. However, it is much clearer that since all plaintiffs had to agree to the terms of settlement, and each had to sign a formal waiver to get money which was critical to many because of their straitened circumstances, they were, as a matter of fact, under pressure to accept the terms. The pressure was produced by circumstances which ultimately were the responsibility of the clinicians and defendants in the action.

There is no record which clearly sets out the reasons for the terms of the Macfarlane Special Payments Trust[213] excluding English and Welsh plaintiffs making future claims in respect specifically of hepatitis as well as HIV. There is no record which clearly sets out the reasons for the terms not doing so in the case of the pursuers in Scotland. Most surprisingly of all there is no record setting out clearly why the provisions differed across the border. The lack of clearly articulated reasons for including a term which I have described above as unfair in the majority of cases in England and Wales reinforces my overall conclusion that its inclusion there was indeed unfair, at least without a term providing that the courts should have a discretion to permit cases to proceed where it would be unjust not to do so.

In conclusion:

  1. The “line” taken by the Department of Health, as a collective view, in response to the claims unreasonably claimed too much.
  2. The settlement was an agreement by the Government to a proposal put forward by the plaintiffs’ team of counsel, which the Government then accepted. The timing of an announcement of that settlement in principle created a pressure to accept its terms, but it was not intended to be unfair to plaintiffs for whom the Secretary of State for Health at the time expressed considerable sympathy, and it was open to the steering committee, having consulted with their clients, to take a view which differed from that of the plaintiffs’ counsel.
  3. Those who pursued claims in Scotland should have been consulted. Whether there might have been liability in law would have been determined on many issues which arose on a UK-wide basis in respect of a time when administration was not as devolved as it is today – but the legal systems were distinct; some issues (for example self-sufficiency) would have had less traction in Scotland; and the costs regimes under which litigation was conducted and the level of awards given in the courts were not completely identical. However, particularly when the negotiations had been conducted by members of the English and Welsh bar without instructions from a steering committee which included any Scottish representation, the approach of accepting the plaintiffs’ offer made in respect of the English and Welsh cases and then seeking to apply it to Scotland called at least for some involvement of the Secretary of State for Scotland through whom any particularly Scottish perspectives might be addressed.[214]
  4. The waiver was in terms equivalent to those put forward by the plaintiffs’ lawyers, but I must answer the question posed by the terms of reference by saying that (although apparently agreed between the parties, who took time to consider the terms of which this was part) it was in the cases of most of the plaintiffs inappropriate for the defendants to seek a contractual exclusion of liability for hepatitis rather than leave it for a judge later to rule in individual cases if a claim for hepatitis could properly be brought.[215] Though a waiver was appropriate for claims in respect of HIV, it is difficult, too, to avoid thinking that there was little or no practical need for any such waiver in respect of hepatitis, given that it was unrealistic to expect plaintiffs to join together to sue in respect of hepatitis without there being adequate funding to do so, coupled with the demands of litigation upon individuals which many plaintiffs will already have realised from their experience with the HIV litigation could be draining.

Ben James, who was infected with HIV as a result of his treatment with blood products and had become involved in campaigning for compensation, wrote to the then Prime Minister, Margaret Thatcher, on 14 November 1989 in these terms:

“Even though as I have stated the fault lies with successive governments, it is up to your government to show the minimum of honour and to reach a rapid settlement out of court to compensate myself and my fellows for the damage that has been done to us and our families. No monetary figure can justly be said to equal a life but to remove the financial burden from the victims and their dependents would go some way to enhance the remnants of their lives.”[216]

The settlement that was reached was not rapid. And it did not – and did not purport to – compensate people for the damage which had been done to them. It did not remove the financial burden from them. Ben’s own view of the settlement was apparent from a letter he wrote to his solicitors in January 1991: “No doubt you received my reluctant acceptance of the Government’s pitiful offer, or our pitiful offer to the Government.[217]Eighteen months later, in July 1993, Ben died.

The reality is that “the Litigation was a blunt instrument in the attempted righting” of the wrong done to people through infecting them with HIV.[218]

This consideration of the HIV litigation falls to be considered as part of the Government’s overall response to so many patients receiving infected blood products, and also infected blood. It is appropriate in that light that the final words come from a press release issued by the solicitors making up the plaintiffs’ steering committee on the day of the Prime Minister’s announcement in 1991 in the House of Commons: “These figures reflect the legal hurdles which the Plaintiffs must surmount in their litigation against the Government ... The figures do not represent proper compensation in moral terms for this appalling tragedy – that is not their purpose.[219] It would be 32 years later, almost to the day, that Parliament was informed that the Government accepted the moral case for compensation to be paid.[220] As at the date of writing this Report, compensation still has not been paid.

6.3 Macfarlane Trust

This chapter looks at problems in the way in which the Macfarlane Trust was set up and run, and at problems in the way in which it was funded over the years by the Department of Health. It examines the attitudes of trustees to beneficiaries, and beneficiaries to trustees, and how the process by which individuals could access grants lacked clarity.


Key Dates

March 1988 Macfarlane Trust established as a charitable trust.

1999 Trust’s strategic review identifies that many beneficiaries are living below the poverty line.

2003 Trust has some level of financial security for the first time in 14 years.

2003 Long-term review (A Full Life – Not Just Existence) commissioned by the Trust suggests approaching the Department of Health for further funding.

November 2005 Trust puts business case to the Department of Health based on long-term review, seeking funding of £7 million per year.

June 2006 Trust’s business case reaches the minister’s office.

July 2006 Department of Health offers an increase of £400,000 in response to business case.

2009 Department of Health announces annual payments following the Archer Inquiry. 2013 Katie Rendle reports on beneficiary/trustee relations.

2015 APPG publishes a report identifying failings of the Trust and other Alliance House Organisations (AHOs).

2017 replacement of the Trust and other AHOs by four national support schemes.


People

Chairs:

CEOs:


Abbreviations

APPG all-party parliamentary group

MSPT1 Macfarlane Special Payments Trust No. 1

MSPT2 Macfarlane Special Payments Trust No. 2

NSSC National Support Services Committee, Macfarlane Trust


The origins of the Macfarlane Trust

It is critical to understand the rationale underlying the Alliance House Organisations.[221] To do so, one has to ask: how did this all begin? The place to start is the first of the Alliance House Organisations to be set up: the Macfarlane Trust.

The Initial Government Response 1985-88 has described how the Government first responded to what had happened by taking the view that nothing had been done wrong; that compensation would only be paid where fault was established in court, and that to depart from that principle would be to begin to slide down a slippery slope to no fault compensation. This, it thought, was to be resisted. The very particular hardships which had been caused by being given infected blood products became the subject of campaigning by The Northern Echo, the Haemophilia Society, the media, and some MPs, such that in 1987 there was a turnaround in the government position. It still maintained that compensation should not be given, but now accepted that some form of payment should be made to those infected with HIV and their families on an ex-gratia basis. To distance government from decisions as to how best to disburse a limited fund, it was at first intended that £10 million be given to the Haemophilia Society for it to distribute. That idea then developed into setting up a charitable trust – the Macfarlane Trust – independent of government, as charities are. The sum of money allocated to it at the outset was not calculated by reference to losses, nor to needs of the beneficiaries – the account of how the Trust came into being shows that it was, rather, a response to media pressure and a feeling that the Government needed to be seen to be doing something to alleviate the dreadful position in which people with bleeding disorders who had HIV and their families had found themselves.

Less than two weeks after John Moore, the Secretary of State for Health and Social Security, met a delegation from the Haemophilia Society (as described in the chapter, The Initial Government Response 1985-1988)it was announced in Parliament that an ex gratia grant of £10 million was to be made to the Haemophilia Society for it to distribute. Following the announcement in Parliament that an ex gratia payment would be made, and the evolution of that to become the initial capital for a charitable trust, a trust deed was entered into on 10 March 1988. The initial trustees were Reverend Alan Tanner, Clive Knight, Vera Demmery and Alan Palmer. The purposes were charitable. Money (the £10 million) paid by the government was to be subject to the terms of the Trust. Its objects were:

“to relieve those persons suffering from haemophilia who as a result of receiving infected blood products in the United Kingdom are suffering from Acquired Immune Deficiency Syndrome or are infected with human immunodeficiency virus and who are in need of assistance or the needy spouses parents children and other dependants of such persons and the needy spouses, parents, children or other dependants of such persons who have died.”[222]

Two features of this provision deserve to be highlighted. First, the class of beneficiaries was not restricted to those who had been directly infected. It specifically included spouses, parents and children (including the spouses, parents and children of those who had died)[223] and even went so far as to include a class of people (“other dependants”) who did not necessarily have any immediate familial relationship. Second, “need” was not defined as financial need, nor was “assistance” specifically limited to the provision of money. Indeed it is plain that it was capable of extending beyond a grant or payment of money. The terms of the then clause 5 gave the trustees power to provide holidays, assistance in kind, shelter, housing or other accommodation (whether temporary or permanent) and to:

  1. “promote the education of and provide scholarships and apprenticeships for children and young persons who are in need ...
  1. do all such other lawful things as may be calculated to further the attainment of the above objects PROVIDEDTHAT nothing herein contained shall permit or be deemed to permit the doing of any thing or the pursuit of any purpose which are not exclusively charitable.” [224]

There was thus a wide range of matters which might fall within the heading of “need”, with the restriction that whatever that need was had to be charitable if it were to be relieved by use of the Trust funds. However, despite this width, the way in which the words “charitable need” were interpreted during the life of the Macfarlane Trust became something of a fetter upon the assistance which the trustees might otherwise have felt it appropriate to give.

The width of the class of beneficiaries[225] is emphasised by the fact that the inclusion of a bereaved group wider than that of spouses or partners has not been replicated in current infected blood support schemes.

Under clause 10 of the deed, six more trustees were to be appointed, bringing the total to ten. Of the total of ten,[226] six were to be appointed by the Executive Committee of the Haemophilia Society, and four by the Secretary of State for Social Services.

Amongst those appointed by the Haemophilia Society was Peter Stevens,[227] who was a trustee from 1988 until 1992, then again from 1999 when he was invited to rejoin the board of trustees in order to become chair. He remained chair until 2006.

The establishment of the Macfarlane Trust to provide charitable discretionary payments to those who were in need was followed by the two separate special payments trusts intended to benefit the same group of people – those who had haemophilia who had become infected with HIV through their treatment with blood products – by providing non-discretionary payments. The Macfarlane Special Payments Trust No. 1 (“MSPT1”) provided for £20,000 lump sums to be paid to those infected and some dependants of now deceased infected persons.[228] In 1991 this was supplemented by the Macfarlane Special Payments Trust No. 2 (“MSPT2”) which provided for payments ranging from £21,500 to £60,500 according to individual family circumstances. Whereas the creation of a charitable Macfarlane Trust was a response to the campaign which the Haemophilia Society had orchestrated, these two sums were a response to the litigation brought by nearly 1,000 patients.[229]

Several witnesses criticised the way in which the Macfarlane Trust was set up as one which was certain to cause problems or was designed to fail, and told the Inquiry that the seeds of later dissatisfaction and difficulty amongst the beneficiaries were caused by this. Peter Stevens was particularly scathing. In an interview in 2007 with Russell Mishcon he said he considered the Trust was a “short term fix”.[230] Speaking of the Government he said: “I think they were caught out by the lack of favourable response, which was why they then introduced the two capital payments and then, at that stage, I think they thought: ‘Well okay that’s done and dusted, these people have only a couple more years to go and we’re off the hook.[231]

In evidence he said: “They gave us what they thought they could afford and what they could get away with”;[232] and “setting up an inadequately funded charity was the Government’s view of what to do about the people.[233]

Christopher FitzGerald, chair of the trustees from April 2007 to April 2012 in succession to Peter Stevens, contrasted the commitment of the Government as expressed when the Macfarlane Trust was set up with the funding actually delivered. He commented that “it was very disappointing” that the Government had not taken the opportunity given by the Archer Inquiry to “put right what they had not got right all those years before” (that is, that it should by then have avoided making payments on a discretionary basis).[234]

Problems caused by the way in which the Macfarlane Trust was established

Even if the Government had been right in its conclusion that no wrong had been committed against those who suffered infections from NHS treatment,[235] there were at least five central problems which arose from the way in which the Trust was set up.

First, the basis for the ex gratia payments was in recognition of those who already faced a lifetime with the haemophilia with which they were born; on top of that, they had the additional difficulties caused by HIV, which gave rise to exceptional levels of hardship. That was accepted. But no detailed assessment of the particular financial impacts was made at the time; the Government never intended to meet all or most of the needs or to address the true extent of the financial impacts. Without this, whether any particular sum of money was appropriate was pure guesswork, and the amount provided was always likely to fall far short of need.

A similar point arises in respect of MSPT1 and MSPT2. They could be seen as responses to exactly the same needs within the succeeding three years.[236] The sums appear to have been assessed by making guesses as to need on the one hand (whilst recognising that what had been paid thus far was insufficient)[237] and on the other by knowledge of the sum which the Government wished to pay at the time in response to pressures on it to pay something more. This in turn led to an inevitable feeling that what happened between 1988 and 1991 had been closer to a reluctant sop to opinion than it was to a genuine attempt to relieve need.[238]

Second, the Macfarlane Trust was set up as a charity. As a response to those who were complaining that they were entitled to recompense because the NHS and government had done them wrong, the fact they had to seek charity was likely to lead to many who had pride in what they had achieved in life, despite the challenges of haemophilia, feeling they had been reduced to holding out a begging bowl.[239]

Third, it was unclear what assumptions were being made about future needs. Witnesses repeated the view that the Government expected the Trust to operate only for a short while: the natural progression of HIV infection in 1987 was that death would almost inevitably follow, within a few years. But the Macfarlane Trust deed provided for a much wider class of beneficiaries than those who were infected. Though the sacrifices of career and income and the toll on the mental health of those who were principal carers for, or family members of, a person infected with HIV have become clearer, they ought to have been in contemplation even then. Yet there was no assurance built into the scheme that any additional funds would be provided to meet such needs although they would be ongoing for the foreseeable future. The endowment of a charitable fund might conventionally be by the settlement of a large lump sum upon trustees, in the expectation that if it is invested the income produced will be sufficient to make any necessary payments. It has to be large enough to do so, for otherwise capital will begin to be used up to fund outgoings, and in turn the reduced capital will produce less income, leading to an increasing rate of capital attrition. Broadly, this is what happened. It led inexorably to the trustees being cautious about how much money they could allocate to grants in any particular year since there was no sufficient assurance of further funding. The creation of a reserve to accommodate this caution in itself led to further difficulties since many beneficiaries, not unreasonably, saw their requests being limited, or denied, when they could have been easily met out of the reserve. What must have seemed to them an ample capital sum was simply not being spent to alleviate those needs which they knew to exist from personal experience.

Fourth, the lack of funds became ever more apparent over time as treatment improved, and the deaths that had seemed inevitable became less and less imminent. In 1987 when the scheme was originally announced, few expected many – or indeed any – of those infected to survive for long, though some opportunistic infections which formed part of the spectrum of those which in combination amounted to AIDS could be individually treated, at least for a while. By the mid 1990s, highly active antiretroviral treatment (“HAART”) was found to be effective for most, even though it did not eliminate the virus.[240] Those who had been infected now faced the problems of survival, after or with continuing illness and treatment, rather than the problems of anticipated imminent death which had so affected their lives until then. They were growing older, and with them their loved ones, upon whom many of the strains of coping financially, physically, emotionally, educationally and socially had already fallen. A model of distribution of funds intended to meet one set of circumstances had now to be adapted to something radically different. Even with inspired leadership and stewardship this would have been a challenge for the trustees, since there was no assured source of funds. Nor of the minimum level of funds that was needed. Unfortunately the Macfarlane Trust did not have such leadership from their chairs and CEOs (though Christopher FitzGerald and Ann Hithersay together with some individual trustees are to be excluded from this particular criticism, and Alasdair Murray took over as chair too late to make an impact in this respect).

Fifth, the charity was small by comparison with many grant-making bodies. Its staff was thus always likely to be small. A particular disadvantage of small staff numbers is the vulnerability of the enterprise to the absence or illness of any staff member. Jan Barlow, in her evidence covering her term of office as chief executive of the Macfarlane Trust (January 2013 to October 2018), identified that there had been a staffing cap placed on the Macfarlane Trust.[241] There is no other evidence, oral or documented, which supports the existence of such a cap,[242] but the practical consequence of small numbers remains the same – that with limited staff numbers, the Macfarlane Trust did not have access to a ready reserve workforce who might step in if others fell absent and it would find it difficult to fundraise easily.[243]

In submissions to the Inquiry, the Haemophilia Society neatly encapsulated most of these problems; it said: “these organisations were never sufficiently funded, or given any reassurance of the long-term support needed for the community, or even considered the community and the impact of infection.”[244]

Whereas administration by government itself would have had the potential to avoid the disadvantages set out above, it might have made it less likely that innovative means of support beyond the payment of funds would be provided. As an independent charity the social needs of beneficiaries could arguably be satisfied more easily than if it had been directly administered. Some efforts were made towards this. The involvement of beneficiaries with those running the scheme could also be facilitated.[245] One means by which it was sought to do this was by setting up a user group (in the Macfarlane Trust known as a Partnership Group).[246] The Macfarlane Trust also provided the services of a dedicated social worker (initially Tudur Williams); and the services of an independent financial advisor (from 1990/91 until 2005/06 when Susan Daniels operated in that capacity). Of particular help to many beneficiaries, and much appreciated, was the funding by the Macfarlane Trust of the work of Neil Bateman, who was engaged as a contractor to assist with and advise on welfare benefits from around 2007 onwards.[247]

The most obvious reason for using the Macfarlane Trust as a vehicle was not, however, a balance between the pros and cons of that model compared with an “in-house” solution. Rather, as the 1987 memorandum to the Cabinet Sub-Committee had in effect set out, it lay in providing a short-term, one-off answer to a campaign which it was embarrassingly difficult to answer and by keeping the charity at arm’s distance from government, effectively ensuring that any beneficiaries disaffected by the way the grant system operated would blame the Trust and its administration rather than government.[248]

The special payments in settlements of the legal case brought by nearly 1,000 people with haemophilia[249] were given to the Macfarlane Special Payments Trust No.2 to administer since it already knew who the beneficiaries were, and because its ready contact with them meant it was a convenient means of making these payments – but this too kept the settlements at arm’s length from the Government.

Operation of the Macfarlane Trust

Matters of policy and direction were determined by the Board.

Chairs

The first chair was Reverend Tanner. He also became chair of the Eileen Trust from its inception in 1993, and remained as chair of both until being replaced by Peter Stevens in 2000. He in turn was succeeded in 2007 by Christopher FitzGerald (Peter Stevens continued as chair of the Eileen Trust thereafter). Christopher FitzGerald retired in 2012 and after a short gap was succeeded by Roger Evans who had been a trustee of the Macfarlane Trust since 2006. Roger Evans remained chair until May 2016 when he, somewhat suddenly, resigned. By that time the continued existence of the Macfarlane Trust was under question. There were serious issues whether the Alliance House Organisations would continue at an arm’s length from, though funded by, government or would thereafter be operated directly by the state. Alasdair Murray, who had been a trustee since March 2014, became chair whilst the writing was on the wall. He continued in that capacity until the Trust could no longer hope to function as it had done previously, and it transferred such assets as remained to the Terrence Higgins Trust, to be operated by that trust thereafter as a designated ring-fenced fund.[250]

The chairs were unpaid, and worked part-time.

Day-to-day running

The day-to-day running of the Trust was allocated in 1988 to an “administrator”, a position occupied by Wing Commander John Williams until 1997 when Ann Hithersay took over, and became known as the chief executive. This title better described her role. She retired in October 2003 to be succeeded by Martin Harvey. Martin Harvey’s later time in office was bedevilled by illness, and for a period of time before 2013 the Trust functioned without an active chief executive. It was then (from January 2013) that Jan Barlow succeeded. She became chief executive of both the Macfarlane Trust and the Caxton Foundation,[251] and stayed in post until October 2018, by which time both ceased operating.

Reverend Tanner, Wing Commander Williams, and Martin Harvey have died. The other named chairs or CEOs survive, and each gave evidence.

As explained further below, it is clear that opinions, attitudes and personalities affected the running of the Trust, the extent to which it made best use of its opportunities to serve the beneficiaries, and the satisfaction of those beneficiaries themselves. The disadvantages inbuilt by the ways in which the Trust was structured would have made the roles of chair and CEO difficult to fulfil, however talented the post-holder might have been, but in the event were not remedied to the extent they might have been. They were, rather, accentuated.

Relations between beneficiaries and the Macfarlane Trust

The general view of the Macfarlane Trust given to the Inquiry by individual beneficiaries was reflected in the evidence of Susan Daniels. Her recollection appeared definite and clear and she gave it in a straightforward, compassionate and empathetic way. A particular value of her evidence was that it traced the operations of the Macfarlane Trust from 1990 until 2018 (though after June 2006, when she resigned from a role as caseworker for the Macfarlane Trust which she had occupied for a little over a year, she was more closely involved with the Eileen Trust to which she was then recruited by Peter Stevens). She described a change occurring in the early part of the 2000s. She put it this way in evidence:

“When I first joined, or worked for the Trust in 1999 I found Tudur Williams[252] to be a very kind and caring person. I also found Ann Hithersay to be very caring. But after she left the Trust became – – it became almost – – the bureaucracy became much more. They seemed to have more and more people working there, more and more committees. It became much harder for the registrants to get grants. I think they were making ill people go through hoops to get ... a simple grant ... I think there was [a] total lack of compassion. Not with the junior staff, let me say that, that I got on very well with most of the staff – – the junior staff who worked in the office and they were all very – – most of them were very kind to the registrants. So I don’t want to say anything, you know, other than that ...

Q. Can you recall what the response to that was from senior members of staff and ... from the trustees?

A. I don’t think I got much of a response. I think they probably felt that I was a rather kind of over emotional woman and that they didn’t do anything about it.” [253]

Her viewpoint on the Trust is independent: it was only briefly that she was an employee of the Trust, as a caseworker. She had become attached to working for the Trust because of her practice as an independent financial advisor. She was gradually asked to become involved with financial planning more and more though she regarded it more as debt counselling. She achieved considerable success on behalf of individual beneficiaries. She visited several at home. By October 2004 she was highlighting the plight of widows in a financial advisor’s report to the board. They did not have sufficient funds for everyday living. She commented: “it does appear that the current trend is to reduce income to a base figure of approximately £100 per month. In many cases, this will lead to real hardship and ... very vulnerable people will be forced to seek funds from highly expensive and sometimes unscrupulous loan companies.[254]

During her time as caseworker, she reported to trustees on a visit she had had in Birmingham with a social worker.[255] She described how when she arrived to talk to a couple with a view to giving helpful financial advice it was clear that they were very nervous and one was “visibly trembling when I arrived.” She commented: “It took them a little while to realise that I was there to help them deal with their problems not make them worse.” In the last paragraph of her report to the trustees she commented: “I feel deeply saddened, after all my years with the Trust and the excellent work it has done in the past, that it has now come to the point when registrants inform me that ‘The MFT [Macfarlane Trust] is a major stress point in my life’ and are frightened by the prospect of my visit.[256]

In another visit to Birmingham at about the same time to a different registrant, focussing on a request to repair a headstone for the registrant’s first wife who had died aged 33 having been infected with HIV, Susan Daniels commented that she had wondered whether “compassion is still an objective of the Trust in dealing with its members” and that “Delaying a decision on somebody who is already in a highly stressful condition can be as bad as a poor decision, perhaps worse.[257]

By June 2006 she decided to resign. She did so because she felt unsupported by the recently appointed chief executive, Martin Harvey. She found herself suddenly being questioned for the first time about matters which she had been attending to for some 15 years without complaint; now she got constant emails asking why she had done this or that. She felt bullied. Peter Stevens later asked her to help him at the Eileen Trust, and Susan Daniels told the Inquiry that he then apologised and said she had been right on a lot of things that she had said at the time: she added that she had already left the Macfarlane Trust by then and just continued with the Eileen Trust.[258]

She found the Eileen Trust to have a totally different atmosphere from that she had experienced at Macfarlane: its registrants were, by contrast, treated with compassion; they were less angry than those who were beneficiaries of the Macfarlane Trust; it was considerably smaller; it was less bureaucratic. She commented specifically that the trustees “actually spent timewith the registrants.[259]

The evidence given to the Inquiry shows that the sense of fear and distrust to which Susan Daniels referred was widespread, and not to be dismissed as the views of “a rather kind of overemotional woman” as she suspected it was.[260] It is not only reflected in a number of the written statements of witnesses who were beneficiaries, and many of the available documents, but also in the testimony of Jude Cohen, the head of support services.[261] She was clear in her evidence that there was a “horrible undercurrent” of distrust in both directions.[262] Many beneficiaries felt misinformed by and fearful of the chief executive; trustees generally[263] distrusted the beneficiaries. The climate of anxiety when approaching the chief executive (after 2004) was raised in a Partnership Group meeting. The record of the meeting shows that it appears to have been accepted by the chief executive and head of support services that there was indeed such a climate.[264] Concern was expressed about misinformation, delays in responding to grant applications, and that beneficiaries had no mechanism by which to communicate problems effectively to the trustees.

In November 2004, a month after these concerns had been registered at the Partnership Group meeting, a regional meeting was held at Birmingham. Jude Cohen gave a report of it to the National Support Services Committee (“NSSC”) (a sub-committee of trustees, with the function of determining grant applications). Her report again demonstrated growing hostility between registrants and the trustees of the Macfarlane Trust. A part of her specific function was to establish regional support workers in post. The beneficiaries considered they neither wanted nor needed them: the chief executive told attendees at the meeting that part of the regional support workers’ function was to carry out a financial review of their circumstances in order to determine need, which might include home visits. The view was strongly expressed by many attendees that they would not “let an RSW [regional support worker] in the house”.[265]

There is no material to show that the Macfarlane Trust actively addressed these reports of a growing loss of confidence. It did however take some steps in February 2005 to check whether its internal grant-making procedures were in accordance with best practice and appropriate to the Trust’s size and the nature of its grants. It asked Kingston Smith Chartered Accountants to review these procedures. Their report identified weaknesses in the system of authorising grants. Although it found that “The majority of the procedures in place at the trust stand up well when compared with those outlined in the guidance” issued by a variety of charitable bodies, it noted the Trust was least compliant with that guidance in monitoring and evaluation, without which it would be unable to answer the key question of whether it was helping those in the greatest need.[266]

Of greater relevance still to the growing problems of mutual trust, their report identified that consultation with the beneficiaries in respect of changes in funding was necessary; and that the Trust’s application forms and literature “should be clear and user friendly and should include ... what the trust will and will not support” and include “any upper or lower limits on grant size”.[267]

Jude Cohen’s view was that this recommendation was not being honoured in practice. In a report to the NSSC for a meeting on 2 September 2005, she recorded that social workers and consultants had expressed unhappiness at late changes in policy in respect of respite grants, and that she had also “received more and some much stronger verbal complaints”. She told the Committee that it was not following the recommendations of the Kingston Smith Report; attached correspondence from registrants complaining that they had not been informed of the grant-making policies; drew attention to unfairness, unhappiness and extra stress; and urged full publication of the details of those grants for which beneficiaries could apply.[268]

Shortly after this Jude Cohen was summarily dismissed.[269] The reasons given for this have differed, and (such as they are) are opaque. The process does not appear to have complied with basic employment standards.

Over the next six or seven years relationships remained strained. Katie Rendle, the sister of a beneficiary, had been told that relationships between trustees and beneficiaries were poor. Beneficiaries saw the board as paternalistic, opaque, and many of its members detached from the everyday realities of living with haemophilia and HIV. Since she had spent time working at the Charity Commission, and her brother was keen to understand what problems there were in the administration of the Trust, and whether improvements might be possible, she was interested in playing a part as a trustee. She had particular skills in communications.[270] When interviewed by the Haemophilia Society for a role on the trustee board as a “user trustee” (though she was not herself a beneficiary) she talked about her idea of conducting a survey to review the Macfarlane Trust’s communications, with the aim of improving two-way communications between the Trust and its beneficiaries. She was appointed, and secured the board’s agreement to conduct such a survey.[271]

263 beneficiaries completed the survey questionnaire. Katie Rendle reported her findings to the board in January 2013.[272] Some of the pictures painted[273] revealed telephone communication of a condescending tone, with phones left unanswered, or the relevant person being unavailable. Telephone manner was poor, and calls were not returned as promised. There was a sense that many people wished for more help. On the other hand, 68% rated phone communications highly (rating them 4 or 5 on a scale of 0-5). However, the evidence showed Katie Rendle that the standards of communication had dropped recently, and the remaining 32% gave a score of 3 or lower. The ratings were similar for written communications. Just under a third rated letters from the Trust as medium to poor, the main issues being that they seemed “threatening, uncompassionate or patronising ... long and wordy ... too formal and unclear”, and that they lacked explanation. As to communication by newsletter some of the issues raised were that the information was out of date, that insufficient notice of events was being given, there was insufficient input from beneficiaries, the topics were too inward looking and not useful enough to beneficiaries, and the design and layout was not optimised for people with visual impairments. As to communication by use of a digital forum, relatively few beneficiaries used this, though a core of users found it helpful. The website was not very well visited: some beneficiaries were even unaware that the Trust had a website, whilst others seemed to confuse it with the forum. Beneficiaries were however very positive about an idea that the website might include information about applying for grants, the way in which the Trust decided on applications, and how other sources of income and support might be accessed. Katie Rendle agreed in evidence that she understood that the current form of the website “didn’t include that information or didn’t include sufficient information on those topics”.[274]

Overall, around two thirds of beneficiaries reported that they did not receive enough information about grants. This lack of information caused confusion, frustration and led to delay. One of the strongest themes emerging from the survey was that there appeared to be a practice of withholding information from beneficiaries. More than half of those who responded complained that they had not been consulted about the way in which the Trust distributed its funds, and did not fully understand it.

Little seemed to have changed in the previous six years.

Armed with the material which the survey provided, Katie Rendle made a number of positive recommendations to the board.[275] Jan Barlow as chief executive was asked to take the next steps to action the recommendations of the report or to decide what to do with it.[276] Despite this, nothing was ever actually done. No good reason for this is apparent.

Jan Barlow’s own experience corroborated the views elicited by the survey undertaken by Katie Rendle. She learned from her first board meeting in January 2013 that there were real concerns about a lack of clarity concerning grants, a lack of transparency about what could be applied for and how decisions were taken, a need for a full-scale reorganisation of the process, complaints about an unhelpful tone being adopted in many communications, and in particular the length of time it took for applications to be approved. She said: “In some cases grants that went through NSSC were taking months and months and months to get approval because the committee would ask for certain amounts of information and when they got that then they’d ask for additional information and, kind of, you know, this could go on for a long time”.[277]

When she came into post, applicants for many grants had to show “exceptional circumstances” if they were to succeed – but quite what constituted “exceptional circumstances” remained unclear, even to those administering the system.

Concerns reached the ears of MPs. Within two years the All-Party Parliamentary Group (“APPG”) reported on current provision for support. Its report examined the operations of all the Alliance House Organisations. Among its chief findings were that only just over half of the applicants for grant support were positive about their experience of contacting their trust; that their understanding of how trusts operated in offering additional support[278] was low; that most applicants for additional support had little knowledge of how an organisation made decisions, or what processes were involved, and that nearly two thirds found it difficult to understand the rules and procedures involved. Levels of satisfaction with the overall support provided were low: less than a third were satisfied that the organisations being considered provided support efficiently, and less than one fifth were satisfied that it was given fairly. The report highlighted the fact that although applications to the Macfarlane Trust for support by way of a single grant were more likely to be successful statistically, when compared with applications to the Caxton Foundation or Eileen Trust, applicants to the Eileen Trust were most likely to describe their experience positively (almost 9 out of 10 did so). More than half described their experience of contacting Caxton positively (57%). By contrast, the figure for the Macfarlane Trust was 44%.[279]

Causes of the poor relationships between beneficiaries and the Macfarlane Trust

It is clear from the above account that relationships between the Macfarlane Trust and its beneficiaries were never easy. The weaknesses in the way in which the Trust was first established saw to that, and a continuing insecurity of funding helped to perpetuate it. However, the attitudes adopted and shortcomings in the way in which the Trust operated accentuated these problems. They grew worse. Many of the specific practices which contributed to the problems have already been identified. However, those problems were further increased by a shift in the demographic of the beneficiary cohort. Life expectancy improved substantially. This resulted in a cohort whose needs had increased with age and the after-effects of treatment, but whose ability to meet those needs had reduced: employment was particularly difficult with a history of repeated illness and HIV infection, a lack of incentive at an early age to take full advantage of educational opportunities, or ill-health preventing them doing so, and the need for frequent and unpredictable visits to hospital.

A central problem concerned the way funds were allocated. What upset many – indeed, it seems, most – beneficiaries was the lack of anything more than the rudimentary information they were being given. They knew they could apply for a grant, but did not have clarity about how to do it, what it could be for, how much would be allowed, when they should apply, how long it would take, and what criteria would be applied in determining it.

This was then coupled for those who did apply with a process which:

  1. was time-taking and bureaucratic
  2. required (usually) more than one quote
  3. had to have support in most cases from their treating clinician
  4. might involve giving details of income and expenditure (despite the fact that many of the details had already been provided)
  5. might involve being visited at home or photographs being taken of the quality of their environment in order to show it was sufficiently poor
  6. required it to be shown that other sources of support and funding were not available

Both the lack of information from the Trust and the characteristics of the process described above were unfair to, and caused unnecessary distress and anxiety to, applicants; this was obviously not the right way to treat people who had already been profoundly harmed by the state.

Many applicants were aware at the same time that the Trust had substantial reserves which it was not prepared to dip into to meet what to them were pressing needs.[280]

Four particularly troubling aspects beyond even those relating to the allocation of funds also shaped the patterns which ultimately provoked the disappointed responses of beneficiaries.

First, the Macfarlane Trust lacked a clear idea of what its relations with the Government should be. Initially, four of its trustees were appointed by the Government. Its only source of funding was the Government and it determinedly set its face against fundraising.[281] It did not have sufficient staff to pursue this effectively. But the principal reason it did not fundraise was of its own choosing. It was thought that to the extent that the Trust succeeded in raising funds it would cease to have equivalent funds allocated by the Government. Its efforts would thus be spending staff resources to favour the Government, not the beneficiaries.

Second, though the Trust was created as an institution independent of the Government, it felt itself in a subordinate role. Thus, for instance, Peter Stevens, chair of the trustees from 2000 to 2007, sought advice from the Government as to the meaning of the Trust deed, even though it was an independent Trust (and thus the view of the Government as to the meaning of the Trust deed was legally irrelevant). He did so because the Trust was set up at the instigation of the Government, and the Department of Health was responsible to the Government for the running of the Trust. So it was (he explained) “right that we should go to them and say ‘What did you actually mean?’[282] Looking to the Department of Health for definitive guidance had a long pedigree. At a meeting with Department of Health officials on 7 September 1989, the Reverend Tanner (the first chair of the Trust) was minuted as saying that the meeting had been sought because the Trust was looking for an “assurance” that the policies and practices adopted were “rightly fulfilling the objectives envisaged by the Government in setting up the Trust.[283] Another example, also from September 1989, is that a paper on allocation policy for widows (ie grants for widows)[284] spoke of such grants as the area of expenditure “most vulnerable to criticism by our paymasters as encroaching on the grounds of compensation, and thus could in time affect any decision to allocate any further funds.[285] The view of the trustees was not that widows and dependants were secondary, or deserving of less consideration, but that they thought the Government would see matters that way.[286] It is right to note that, also in September 1989, an internal Department of Health briefing referred to the Department of Health strictly observing the independent status of the Macfarlane Trust, but then noted that the Minister of State for Health had requested two-monthly reports on the Trust’s activities.[287]

The same uncertainties persisted over time – ten years later, a strategic review conducted for the Trust suggested that the Department of Health provide policy guidance and priorities given increased life expectancy and needs.[288] Yet this, quintessentially, was the proper function of the trustee board and not a direct concern of the Department of Health. The view which the trustees took of their relationship with the Department of Health is indicated in a letter in relation to funding the strategic review. Reverend Tanner, as chair, had asked the Department of Health to provide funding to complete the review.[289] Having been told in reply that all relevant grant funds were fully committed, but “If you are unable to attract funding from any other source” then the Trust could apply to the Government for funding in the next financial year,[290] Reverend Tanner responded that “the Trustees are of the view that it would be wrong for the Trust, being the creation and servant of the Government, to be seeking commercial sponsorship, particularly when the confidentiality of our work is paramount.[291]The highlighted words are revealing, though the correspondence needs to be seen in context.

Third, the increasing needs of beneficiaries led to increasing demands upon the Trust, whose trustees felt themselves facing a rising tide of demand which could not be met without dipping into reserves, yet felt themselves equally unable to deplete the reserves because they would be sacrificing the Trust’s tomorrow for its then today. This shortage and chronic insecurity in respect of funds, and what was done about it (which has been criticised as insufficient) needs to be set out at some length.

Fourth, many beneficiaries thought that the trustees demonstrated an uncaring, dismissive and at times disdainful attitude towards them. This too deserves a full account, but I shall first turn to the insecurities of funding and failure to address need appropriately.

Insecurity of funding and failure sufficiently to meet need

Some 18 months after operating under the Trust deed, it was becoming clear to the trustees that the expenditure was exceeding the income received from investments. The Trust had been set up to make distributions to support beneficiaries in need. Those needs were substantial. Accordingly, trustees raised the question of future funding from the Department of Health at a meeting which took place between the Macfarlane Trust and the Department on 7 September 1989. The Trust wanted to know from the Department of Health whether additional funding would ever be made available, or whether the initial £10 million was a one off payment, making the (obvious) point that without such additional funding “future expenditure could be considerably inhibited.” The minutes record the discussion as follows:

“Following discussion, Mr. Heppell responded that Ministers would not want the Trustees to make more limited offers of help than they would otherwise consider reasonable, simply to conserve funds, and that each case would continue to be judged on its merits. However, the request for additional funds was a matter of timing, and he advised the Trust that the right time to approach Ministers about additional funding would be when the Trust funds were sufficient to meet commitment for only 2/3 years. An approach at the present time would be too early.”[292]

By way of comment, this response avoided answering the question posed. Though the response was suggestive of a welcoming approach to requests for further funding, and Strachan Heppell, Deputy Secretary at the Department of Health, indicated that the work of the Trust was valuable, it fell short of a commitment to make further payments, and nor did it say how much might be provided. This left the Trust with uncertainty as to the appropriate level at which it should disburse its capital, and concerned to keep a reserve if it could to meet the considerable financial uncertainties of the future.

The annual expenditure of the Trust was around £2 million until 2000 (after which it rose to between £2.5 and £3 million). If it was to provide the level of support which the trustees thought appropriate, and which was needed to relieve the needs of the beneficiaries the Trust identified, it needed the assurance (and the fact) of continued and consistent financial support. Instead, government funding of the Macfarlane Trust in the 1990s to enable the continued support of beneficiaries was somewhat ad hoc. There was a further payment from the Government of £5 million after five years (30 March 1993), no further payment until March 1996 (then £2.5 million), another payment, also at the end of the financial year, two years later in March 1998 (£3 million) and then in January 2000 another single payment, this time of £2 million.[293] This section explores why that was.

The strategy adopted by the Department of Health on the question of the future funding of the Macfarlane Trust, which resulted in these uncertainties of funding, is shown in a briefing note prepared for Strachan Heppell in advance of a further meeting between Department of Health officials and the Macfarlane Trust on 5 March 1992: “At 31 March 1991 the Trust had capital reserves of £7.25 million and gross expenditure of 2.3m a year, which offset by interest received on the fund means that the Trust is spending around £2 million a year from capital. By the end of 1992/3 funds will have reduced to around £3m”.

The briefing continued:

“It might be that £1/2m to £3/4m could be available for the original Macfarlane Trust. However this only represents 3-4 months spending and the Trust is not going to need an injection of this size in the immediate future. There is also the risk that an injection of this size in the immediate future could be misinterpreted either as a crisis injection or as a sign of waning government support. Our preferred course is to top them up periodically with sums to cover 2-3 years spending rather than spoon feed them annually.”[294]

Strachan Heppell was told that William Waldegrave, the Secretary of State, had not approached the Treasury for money (a PES bid) for funding the Trust from Departmental funds for 1992/93, but had deferred it to the following year. The briefing note observed: “It was agreed with Treasury when the bid was deferred that general assurances could be given about further Government funding to the Trust if they raised the matter. This year, we are repeating last year’s PES bid for £6 million to top up the existing funds to allow the Trust to spend at a rate of about £2.5m – £3.0m for 3 years. The Trust would be unable to ensure continuity of help without additional funds for 1993/4.[295]

In a letter to David Watters following that meeting, John Williams, the administrator of the Macfarlane Trust (and attendee at the meeting), set out his understanding of what had been said at that meeting:

“We were given reassurance that:

  1. The people with haemophilia and HIV would continue to be treated as a special case
  2. The Government was happy with the work of the Trust and agreed that this was the best means of continued help with the special needs
  3. The Trustees need not make arbitrary cuts in expenditure and might even make reasonable provision against inflation. Further funds would be provided in time to avoid any guillotine.

Unspoken but implied, was the view that the Government would prefer this not to become a public issue again right now and equally that they did not want to have to find the money right now. It was conceded that in a year’s time we shall have made further inroads into capital, and the ‘rescue’ price will be higher.” [296]

It appears from this that although the Departmental strategy was not to provide any specific assurances to the Macfarlane Trust that there would be top up funds forthcoming, a general assurance that there would be further funds was nonetheless provided at the meeting. The level of funding was not assured.

It remains unclear why the Department of Health was reluctant to be open and transparent with the Macfarlane Trust from the outset as to their specific intentions to top up the Trust on a periodic basis. It may have been because ultimately spending decisions depended on the Treasury, which had to balance a range of commitments. If, however, its reticence was intended to discourage the Macfarlane Trust from being too generous in its disbursements of the funds then it was effective. By March 1993, assets had dropped to just over £4 million[297] and in that year there had been a decrease by 3.6% from the previous year on the sums paid out to beneficiaries.[298]

The payment of £5 million already mentioned was made by the Department of Health on 30 March 1993, and restored the capital funds of the Trust to a level close to that at which it had originally been.[299]

In March 1995 the Department was considering whether to provide a top up to the Macfarlane Trust in that financial year from the 1994/1995 underspend.[300] A decision was made to defer any top up to the following year, but the documentation illuminates two factors:

On 15 March 1996 a payment of £2.5 million was made by the Department of Health.[302] This was funded by in-year savings in the Departmental budget.[303]

The Inquiry heard evidence from Peter Stevens (and Ann Hithersay to a lesser extent) that during this period, the Macfarlane Trust was underfunded.[304] Charles Lister on the other hand gave evidence that during his tenure the Department of Health always found the money that the Macfarlane Trust asked for, and sometimes even a little more.[305]

The two statements are not necessarily inconsistent. As Ann Hithersay made plain in her oral evidence, the Trust was very careful about what it asked for from the Department of Health in terms of funding, not wanting to appear “greedy”. She agreed that in fact the Trust only asked for what they thought they would receive.[306] An example of this is the fact that after ten years, the Trust was still only disbursing £2 million a year.[307] It does not seem to have occurred to the Trust that they could disburse (and so seek from the Department of Health) more; the fear of being left without funds was a significant driver of its policy in respect of payments.[308]

Further effort would be made under Peter Stevens’ chairmanship to obtain the additional funds that were so clearly necessary. The approach adopted regarded overt lobbying as potentially counterproductive.[309] The approach taken throughout was, rather, a “softly, softly” one. It aimed to have the Government understand the problems of beneficiaries rather than an approach which “fired up” the press.[310]

He therefore requested a top-up payment of £4 million for 2001-02 from the Government to meet needs which had been identified in a strategic review of 1999.[311] This review showed that 70% of the beneficiaries who responded to the review questionnaire were largely dependent on state benefits, augmented by Macfarlane Trust funding, to meet their financial needs. This was well over twice the national average of people living at or below the poverty line.[312] It revealed that poverty and despair about money were common; that many were bogged down by debt; that few had any leeway to meet unexpected bills. It recommended that the Trust should approach the Department of Health to secure an assurance of continued funding, and that this should be at a level sufficient to meet registrants’ needs. However, Peter Stevens told the Inquiry that the response of the Department of Health was to “kick it into the long grass”.[313]

The way this happened, from government documents, shows the approach of the Department of Health. The case was made at a meeting on 18 April 2000. The briefing note produced by officials in advance of that meeting stated that the Trust wished to discuss an increase in funding to fund their programme of disbursements from £2 million per annum 1999/2000 to £2.5 million per annum the following year, rising to £3 million by 2005/2006. The note records the following: “It is hard to resist the Trust’s request for additional funding to meet the needs of registrants when the Trust is acting within the terms of its remit as laid down by the Trust Deed.

Despite this apparent acceptance of the case being put forward by the Trust for increased funding, the note continued: “However, before additional funds are committed (assuming the money can be found in 2001/2002) we recommend that the Department commissions an independent review of the Trust’s activities.[314]

A further review, paid for by the Department of Health, was therefore commissioned in 2001.[315] This recognised that the financial assistance provided by the Trust had increased above predicted levels, causing significant pressures on its finances. On the assumption that income from the Department of Health remained a constant at £2.5 million per year and returns on investments remained constant at 4% per annum, then if the total paid out to registrants continued to increase by 12% per year as it had done for the four years preceding the review, the assessment was that the Trust would run out of funds by 2006.

The review concluded that the current financial management arrangements failed to provide adequate levels of information on which to base strategic decision-making. This was in part a result of the lack of internal management resources. It recommended that a business case should be put to the Department of Health for a review of current staffing arrangements and the benefits that would provide. It also recommended that receipts were requested from all who received funds, and that it was made clear that where receipts were not provided this would be taken into account in considering further claims on the Trust.

This “Macfarlane Review” was essentially into the financial administration of the Trust, rather than the policies which it had adopted for the giving of grants, although an implication was that the breadth of grant-making should be restricted if the Trust was to ensure its longer-term survival.

Ad hoc nature of the funding up to 2002

The financial history of the first 14 years of operation of the Macfarlane Trust is one of a fear, on the part of the Trust, that funds might in future prove inadequate to meet the very real needs with which they had to deal day by day. General reassurances were given that money might be found if really necessary, but no particular level of income was assured on a continuing basis. Nor had sums been given annually. Funding was ad hoc. The responsibility for these uncertainties of funding were placed in the evidence of Peter Stevens at the door of the Department of Health.[316] For his part, Charles Lister testified that prior to 2002 the problem lay with the approach of the Macfarlane Trust. According to him the system in place for funding the Trust was, from the Department of Health’s point of view, reactive. The Department of Health therefore relied upon requests for more funds coming from the Macfarlane Trust, albeit it was the convention that no such request should be made until the reserves had dropped to about £4 million.[317] According to Charles Lister, these requests were made by the Macfarlane Trust for funds within the financial year when that occurred. Such requests did not fit with the way in which the Department of Health’s budget was set (in advance, usually on a three year cycle for budgets within the spending review, and annually for budgets outside that system). This led, in his words, to his team “having to have an end of year negotiation with DH Finance to say ‘Can you find 2 million’, or whatever it was, ‘for us to give to the Macfarlane Trust out of end of year underspend’.”[318]

Both witnesses were (rightly) of the view that this was not a satisfactory way of funding any organisation.

It helps in resolving the question of why general funding (as distinct from administrative costs) was delivered in the sporadic manner it was, to note, first, that in 1995 the Department of Health expressed a preference to funding the Macfarlane Trust out of that year’s underspend rather than by PES bids. This decision meant that funding decisions were made somewhat last minute as a result of in-year applications, for it was not until the end of a year that underspends became apparent. Second, there is evidence of the Macfarlane Trust informing the Department of Health of the funding they would need in forthcoming years. For example there is correspondence from October 1999 in which the Macfarlane Trust sought funds from the Department not just for that financial year, but also for the financial year 2002/2003.[319] These facts are persuasive that the ad hoc nature of funding – which both Charles Lister and Peter Stevens thought was an unsatisfactory way of funding any body such as the Macfarlane Trust – cannot be laid at the door of the Macfarlane Trust. It was more likely to be the Department of Health’s responsibility.[320]

The impact of these funding uncertainties before 2003 caused problems for the trustees of the Macfarlane Trust in that it “coloured[321] their ability to respond to requests made to the Trust and hampered any proper long term planning as to how best to meet the needs of beneficiaries.

Funding 2003 and beyond

A bid for the Trust’s funding was included by Charles Lister within the bids for the Spending Review (covering the 2003-2005 period). As a result of this, the Trust was allocated a budget for three years within the Spending Review, with the first payment of £3 million being paid in May 2003).[322] Thus it was not until 14 years into its existence that the Macfarlane Trust had some level of financial security from the Department of Health. Nonetheless, the needs of the beneficiaries were still far from satisfied by these sums.

Whereas the review in 2001 had focused on the financial management of the Trust, in 2003 there was a further review – “the Long-Term Review” conducted by Hilary Barnard. This was seen as a means to establish new priorities for the Trust and to look at different ways to use limited funds: its commissioning reflected that the trustees wanted to establish “a firm basis on which the Department [of Health] would be unable to resist [their] pleas for more money.[323]

This long-term review was entitled “A Full Life – Not Just Existence”. It concluded that: “The Trust is not and should not be solely a grant giving Trust but has equal and integral roles in providing non financial help to the registrants, infected intimates, widows and dependents [sic]” and that it should aim “to support lives, not just existence.” It said: “It is rare that the Trust has much to do with parents these days but some remain as significant carers who the Trust should keep close contact with. Longer term survival of sick registrants carries with it far greater demands and impact on the lives of their supporters ... Addressing the needs of widows and dependents [sic] is a significant and extended claim on the resources of the Trust and its funder, the Government.[324]

Though Hilary Barnard recognised that the Trust had never been a public campaigning body, it did “have an important role to inform, influence and persuade decision makers, drawing on the information and knowledge gained ... about the community of need it serves.[325]

Although the report had suggested approaching the Government in the immediate future, this did not happen. The reason it was not pursued straight away was because the focus of Peter Stevens’ work, and that of Martin Harvey, had now (August 2003) shifted to setting up the Skipton Fund. It had just been announced that there would be such a fund. They were asked to assist. Peter Stevens thought that Martin Harvey and he could not do both jobs (Skipton and Macfarlane) at the same time, given the resources available, and accepted in evidence that as a result the important work of presenting a case to the Government for increased funding for the Macfarlane Trust was not followed through as promptly and efficiently as it should have been. Nor, for that matter, did he ask the Government for more staffing resources.[326] Nor did he suggest that he had too much to do in relation to the Macfarlane Trust to spend further unremunerated time on setting up a further body. These failures have some mitigation in that it was the Government which invited his co-operation in setting up Skipton.[327] He was fearful that although most of the Macfarlane beneficiaries were co-infected with Hepatitis C, and payments from Skipton could go some way towards meeting their unmet needs, there was a risk that they would be considered ineligible. He said as much when giving evidence to the Archer Inquiry.[328]

The delayed business case was eventually put to the Government in late November 2005. Peter Stevens commented that the Trust had started out with £10 million and had been expected to last five to seven years. It was “topped up, topped up, topped up, at some stage you actually had to say no, we started in the wrong place, we’ve got to start again at a much higher level.” He asked for an increase in funding to £7 million per year, supported by the business case.[329]

The business case did not reach the relevant junior minister’s office until the middle of June 2006.[330]

There had been a delay of several months. During this period – though not until May and June – there was discussion about the funding that might be available to the Trust. Initially officials were considering providing a five year settlement of £9 million to the Trust, to be reviewed in 2010, with no change to the recurrent funding level of £3m per year.[331] By 8 June 2006 this figure had reduced to additional funding split between the Macfarlane and Eileen Trusts of £400,000.[332] Caroline Flint was unable in her oral evidence to throw any light on what had happened to reduce the funding available so significantly.[333] Certainly by the time the information came to her, she was told that nothing more than £400,000 was available. The submission that went up to her stated:

“As you know, DH has faced acute pressure on NHS funds and (as a consequence) on the raft of central budgets from which MFT and ET are funded. Major ALBs are being required to make challenging cuts in expenditure, to the point of ‘thinking the unthinkable’ about service reductions. The upshot of the prolonged review is, quite simply, that an extra £4m for MFT and £137k for the ET is not available. The most that could be found, within the budgets now available to us, might allow for growth of around 10%, or £400k across both Trusts. Officials have so far informally advised the Trust to plan on the basis of ‘flat cash’ funding for 2006/7.”[334]

While it is clear that what was being offered was what was said to be affordable, the advice to Caroline Flint also attempted some analysis of the business case:

“Using MFT’s own figures, the average annual level of benefits payment per registrant since 2001 is 70% greater in real terms than the equivalent figure for the previous 12-year period. The historical data (see Annex B) indicates that the average annual payment to each registrant was relatively constant at around £3,500 from 1989 to 2001, when there was a step increase to an average of around £6,000. This supports the view that the Trusts have already secured much, if not all, of the increase in the rate of annual benefit needed by registrants. Blood policy colleagues have commented that they do not consider any increase in overall funding is justified.” [335]

By way of comment, the only basis apparent from the wording for thinking that no increase was “justified” is what is seen as a high level of payment in the past. It is unclear how officials could have come to this view after reading the business case, supported as it was by the Barnard review. The review clearly set out that the beneficiaries of the Macfarlane Trust had significant unmet needs, ranging from the need for housing repairs (arising because at least half of the registrants were owner occupiers so unable to go elsewhere to meet such costs, and in poor health so unable to carry repairs out themselves), to the urgent need to reduce or eliminate debts, as well as meet the additional costs of living with a bleeding disorder and the infection of HIV and all that came with them.

Then, on 22 July 2006 the Minister of State for Public Health, Caroline Flint, sent a memo to the Secretary of State, Patricia Hewitt.[336] She described how the “present pressure on central budgets” did not provide for an increase to £7 million, that she was not convinced that the case was strong enough, nor that some of the expenses mentioned in a meeting with Trust representatives and in the business case were appropriate to the Trust. She added that “officials have, all along, informally briefed the Trusts that additional funding would be unlikely. In response, the Trusts’ Chief Executive has, equally informally, indicated to officials that they understood this, at least at the senior level.[337] The purpose of the memo was to obtain the views of the Secretary of State as the issue was emotive. It is plain that she did not disagree.[338]

On 28 July Caroline Flint wrote to Peter Stevens. She said:

“I have considered carefully all the points that were made at our meeting. I have also looked at the wider picture, including trends in numbers of registrants, and the level of benefits available from the Trusts’ funds. I am satisfied that an increase of £400,000, approximately 11%, to the Trusts’ funding will maintain an appropriate level of support to their remaining registrants and is within the current level of Government funding that is available. This will bring the funding each year to £3.754 million for the Macfarlane Trust, and £177,000 for the Eileen Trust (assuming a 90:10 split on the current ratio of their size). Both these figures include provision for administration costs.” [339]

This decision, and the way it was expressed, left Peter Stevens seething. He described it as “absolutely outrageous”, “typical civil servants’ smokes and mirrors.” He was so rude to the senior civil servant involved that he had to apologise. He told the Inquiry that he had expressed himself to Caroline Flint “in terms she wouldn’t normally expect to hear outside the Houses of Parliament”, and the next month had proposed to the trustees that they should tell the Minister that they were prepared to resign. They rejected this call to arms.[340]

What particularly got under his skin was the Minister describing the increase as being of 11% when it was at best hardly an increase at all, because the figures now included provision for the costs of administration which had hitherto been paid separately by way of a Section 64 grant, which was the mechanism for providing grants to voluntary organisations.[341] Despite his outrage, to the point that he proposed resignation, he maintained a view that a campaign in the media would have changed nothing, and was likely to be counterproductive. The media, in his view, would pick holes in it, and his general attitude was to ask “how it would look to the readers of the Daily Mail”. Though he had the view, for these reasons, that a media campaign would not be productive, he never approached the media nor sought advice to see if that was indeed the case.[342]

By September 2007 there was somewhat of an impasse between the Trust and the Department of Health regarding funding. The Trust, now under the chairmanship of Christopher FitzGerald, met the Department of Health on 4 September 2007. The minutes record that the board of trustees “are unable to satisfactorily fulfil their objectives set out in the Trust Deed to ‘relieve the need of its beneficiaries’ and the Department are not in a position to increase the annual level of funding it grants to the Trust”.[343] The incoming Minister of State for Public Health, Dawn Primarolo, was informed in a letter from Christopher FitzGerald that the trustees considered the level of funding to be inadequate.[344]

Christopher FitzGerald did make a powerful case in public. He gave evidence, openly, to the Archer Inquiry in which he did not shrink from criticising the Government. He contrasted the “commitment” of government with the delivery of the funding which appeared actually to have been committed; he said that the trustees might be entitled to see the Government as having set up the Trusts so that the plight of beneficiaries would be moved from being a political problem to making it an administrative one, and called for a renewal of political commitment to the objectives. He added: “I would simply wish to reiterate that it is simply unacceptable on any basis, whether you call it moral, legal or whatever – – it is simply unacceptable that the funding the consequences of the greatest catastrophe in the history of the NHS should be constrained by the current financial difficulties or incompetencies in the NHS.” He was clear that the trustees:

“are charged with a duty under our trust deed to relieve the needs of our beneficiaries. We cannot perform that duty unless adequate financing is provided, and to do that ... the politicians have got to recognise the fundamental change that has taken place in the needs of our beneficiaries, resulting from the fact that they are now expected to survive for a full lifespan, God willing, whereas, when the commitments were originally given, they were all expected to be dead within four to five years.”[345]

Christopher FitzGerald wrote to the Government to complain that unless more money were given the Trust could not meet its objectives adequately and said the same to officials, though the Archer Inquiry was his main hope.[346] He did eventually achieve an assurance in 2008 that there would be annual funding indefinitely.[347] This allowed for a gradual reduction in the amount of the reserves since (given that assurance) they no longer had to be maintained as insurance against the uncertainty of funding in the future. Further, following the report of the Archer Inquiry the Government announced that in future there would be annual payments of £12,800 to each infected individual “thus eliminating the need for them to make repeated detailed applications” and, in effect, doubling their current average annual payments (these payments were made through a limited company called MFET Ltd, so that they were not dependent upon an assessment in each case of the precise charitable needs the payment was to meet).[348] It also agreed to increase the funding to Macfarlane Trust for dependants, whose applications for funding would continue to be dealt with by the trustees on a case by case basis.[349]

The Trust had initially been operating on the basis that it needed sufficient reserves to ensure that if no funding was forthcoming from the Department of Health, it had enough to keep going for a year. The uncertainty of funding in the early years is set out above. By the time Christopher FitzGerald was the chair, as he told the Inquiry in his oral evidence, the reserves policy had been reached following consultation with the Charity Commission. In 2007/2008 this figure equated to £4 million. The Trust’s annual report for 31 March 2007 explained the policy as follows:

“the Trustees have concluded that the risks to the Trust’s ability to perform its functions through financial disbursements, both in terms of Government policy and of investment risk, remain such that their policy should continue to be to retain a reserves balance represented by its managed investment fund of around £4million [sic]. This is on the basis that £4million [sic] now represents roughly one year’s expenditure at the current rate of disbursement plus a provision for management costs. In coming to this conclusion the Trustees have regard, inter alia, to reference in the Charity Commission’s guidance on reserves to ‘the need to secure the Trust’s liability beyond the immediate future and to provide reliable services over the longer term’.”[350]

By 31 March 2008 however the Department of Health had made enough of a commitment to give the Macfarlane Trust confidence that it would receive an annual allocation every year.[351] This commitment was made in a meeting at the beginning of 2008 attended by Christopher FitzGerald and Martin Harvey and is referred to in a document prepared for a Macfarlane Trust board meeting by Christopher FitzGerald in the following terms:

“In response to our representations the Department confirmed both its intention ‘to continue funding the MFT on an annual basis’ and its commitment ‘to supporting the MFT and to make available a level of funding that is fair and reasonable, taking into all the circumstances into account’ ... These confirmations were then supplemented by the following: ‘The Department’s annual funding of the MFT is intended to enable the Trust to meet its obligations, and to contribute, as necessary, to the needs of the community of care as defined. This recognises the fact that many of the original reasons for creating the Trust and the subsequent statements of support are still pertinent. The Trust will therefore need to retain its position among the external bodies funded by the Department. The Trust must, however, recognise that future funding settlements will depend on other pressures and priorities that the Department is obliged to take into account at the time. The planned usage of the Trust’s reserves will complement the future funding view of the Department and will support the intention to maintain the current annual funding settlement.’ ”[352]

The Macfarlane Trust board therefore accepted Christopher FitzGerald’s recommendation and decided at the board meeting of 14 July 2008 that the reserves policy only needed to be sufficient to cover six months of expenditure (ie both disbursements to beneficiaries and the cost of administration) plus 10% to allow a modest buffer against adverse market movements. While the annual expenditure figure at that point was £3.95 million, the board agreed to reduce the reserves down to £3 million so as to give sufficient cover in the event that a decision was made in the near future to increase regular payments or single grants.[353]

During 2011 the Trust settled on a reserve policy (as set out in its most recent annual report of 31 March 2011) of moving over time towards a level of having enough money to fund the Trust’s disbursement and running costs for a period of six months. This equated to £1 million.[354] By the end of 2011, the Department of Health focussed on the level of these reserves (which had been reported in the accounts in March 2011 as an investment portfolio of £4.1 million).[355] At a meeting on 8 December 2011, the Trust suggested to officials from the Department of Health that the reserves could be reduced within two years to a figure of £100-£200,000 if there was security as to continued funding. The Department responded that was in line with their views.[356]

However, the minutes of the meeting of 8 December 2011 also record that: “Mrs Jecock said that MFT should recognise that the reserves might have to be used for a time to fund the Trust’s current commitments to Beneficiaries as financing was under tight review and DH Finance were limiting the pots of money to cover non-NHS programmes.[357] The Department of Health’s view on the Trust’s level of reserves was therefore seriously out of step with the Trust’s assessment of what was appropriate – that is, unless appropriate security was given as to continued funding. Dr Rowena Jecock, Head of Blood Policy, was indicating that for the time being the Macfarlane Trust might receive little or nothing, but would have to use what it had in reserve instead.

The Trust plainly needed a reserve, particularly given the history. Christopher FitzGerald was justified when in oral evidence he said that “we saw that it would be a grave risk, and indeed a dereliction of our duty, if we did not keep sufficient reserves to ensure that our beneficiaries were not just left to drop off the cliff.”[358] Moreover, the Department of Health often seemed unable to provide the Macfarlane Trust with a decision on their annual allocation by the start of the financial year, and so the reserves were required to avoid serious cash flow problems.[359] Yet it was now being faced with a reduction in its annual allowance from government because of holding a reserve, which the previous behaviour of the Department of Health had effectively required it to do. Dr Rowena Jecock in her oral evidence accepted that the level of the Trust reserves was taken into account when setting the annual allocation.[360]

When the chairmanship passed from Christopher FitzGerald to Roger Evans in 2012 the approach shifted again. Roger Evans’ attitude from the beginning was that he sought to ensure that what the Trust board did was in compliance with the wishes of the Department of Health as he understood them: it supplied the entire funding.[361] He raised matters with the Department of Health which the board thought might be of interest (such as the security of loans) and considered that to fundraise would be insensitive because the needs of the beneficiaries should be dealt with through central government.[362] He was reluctant for the Trust to campaign, since “it was not our role, and probably would have been unhelpful to the Trust, to carry out high profile campaigning in a broader way”, though he added that “we would have been very happy to have helped in it being undertaken but not for us to be in the forefront.[363]

In 2012, the Trust came under repeated pressure to meet some of its expenses from its reserves. The Department of Health asked that a business case be submitted to support its funding request. It asked that the case should detail why the reserve had not been used for charitable purposes and what had changed to merit its distribution now. It asked specifically for an analysis of the data that had been obtained from a survey the Macfarlane Trust had commissioned, including an anonymised assessment of each beneficiary’s current ability to pay for items, for a statement as to the standard of charitable need the Trust intended to apply to applications for grants from reserves, and to be told how the Trust planned to assess need.[364] Although Roger Evans accepted this was none of the Department of Health’s business – which it was not: they were plainly over-reaching themselves – he did not say so to the Department of Health in writing. Nor did he say that he was unwilling to provide information on the three points just mentioned. He said he had nonetheless made these points orally – it was not his “style to put immoderate words into a letter and email.[365]

Matters came swiftly to a head. There are differing accounts of what happened when it became clear that funding for 2013-14 was likely to remain inadequate. These accounts justify detailed consideration. They conflict to some extent, and are difficult to resolve. At a board meeting on 21 January 2013, Russell Mishcon, a trustee from 2006 to 2014, proposed that the trustees should write to the Department of Health threatening to resign as a board unless it provided better funding to meet the needs of the beneficiaries. He did so under “Any Other Business”. He produced a draft letter. The minutes (which would have been prepared by Jan Barlow as chief executive and agreed in draft by Roger Evans) recorded her as expressing the view that to send a letter to the Minister of the nature tabled, in advance of any decision being made, would not be constructive and would also remove any further room for negotiation if an unfavourable answer were received. The minuted record continues: “Whilst several trustees were still in favour of sending the letter, others were either unsure or against, and two trustees were also not present. RE [Roger Evans] was not prepared to sign the letter.[366] Thus far, there is little dispute about the facts.

However, Roger Evans’ recollection now is that only three trustees (a minority of those present) were prepared to sign the letter.[367] This differs from an account he gave in his second written statement.[368] It does not accord with the minutes, in particular the use in those minutes of the word “several”; nor does it accord with the chair’s decision to put the matter off with a view to further consideration at a later date. If a majority had been against the proposal, then given the style of Roger Evans’ chairmanship[369] the matter would have gone no further, and a decision to that effect would have been recorded. It does not fit with the recollection of those other than Roger Evans himself and Jan Barlow who were present from whom the Inquiry heard. Nor does it fit with an email shortly after the meeting from one of the trustees, Matt Gregory, to Katie Rendle, again a contemporaneous document, which says, in part “I was thinking on my ... journey home that we had been forced to abandon a course of action that it was obvious that the vast majority of those present favoured.[370]

However, to the opposite effect are inferences that can be drawn from some later emails. The context for these are that Roger Evans sent an email to each trustee who had been at the meeting four days after Katie Rendle and Matt Gregory’s exchange, arguing against action that (as he saw it) might adversely affect negotiations with the Department of Health. Trustees responded to it. Russell Mishcon, in an email of 27 January (the next day), said in part “this applies to three other trustees who have responded, making a total of four against the idea of sending a letter now. But we are a board of 9 trustees! And what if the two trustees who were not present at the Board Meeting had been in favour of sending a letter?[371] This therefore shows that as at that date, after Roger Evans’ round-robin email, a majority of those who had been at the meeting did not favour sending such a letter there and then. By then, according to Russell Mishcon, the letter had had some alterations to meet some of the concerns that had been expressed at the meeting about the tone of parts of it.

Reconciling these different expressions of view over a period in which some may have shifted is not easy – but I have concluded that no vote as such was taken on whether a letter in which the trustees en bloc threatened to resign should be sent, and that it was plain some would not have signed it. That seems clear beyond doubt. Others were unsure – that is recorded in the minutes, and is supported by Russell Mishcon’s recollection that a number of changes of wording were made in the light of some of the concerns. As to a revised letter, by 27 January four of those who had been at the meeting were probably not in favour of sending it immediately. The minutes did not record a vote, because one was not taken. They were vague (“several” is not a head count), probably because what was being encapsulated was an impression by the person taking the minutes of the general feeling in the meeting. On any view, this general feeling was mixed. Accordingly, the decision (probably of Roger Evans) was that further discussion would be deferred to a later date.

At the meeting, Roger Evans said that the Macfarlane Trust was an arm of the government “whether we like it or not.[372] Though Roger Evans cannot recall saying this he accepts he may well have done, and since it was the focus of an email which Katie Rendle sent the next day to him, I consider he did. It represents his views: for instance, when asked by Jenni Richards KC about part of the email in which Katie Rendle had said: “Our concerns are not the government’s concerns, we do not exist to carry out their policies or to consider their overall financial position”, he replied: “Well, the reality was we may not like it but if our allocation is coming from the Department [of Health], we were in a position where they had some influence over us.[373]

As just mentioned, a few days after the meeting, Roger Evans sent an email to each trustee. In part of that he said:

“Several of you have asked me what influence DH [Department of Health] has over the Macfarlane Trust. The answer is – a lot. The Government (through DH) set up MfT [Macfarlane Trust] in the first place and could close us down at any time if they so wished. DH appoints three of our nine Trustees and they are our sole source of funding. The relationship is bound up in a Trust Deed and an amended version was agreed unanimously by our Board a year ago. A DH appointed Trustee challenging DH in the proposed way would raise a number of questions within DH – about loyalty, for instance.”[374]

The views expressed here are to be seen in the context, which is that of an email sent in an attempt to persuade trustees away from further supporting their threat of mass resignation. They are nonetheless troubling. As a matter of law, the Department of Health could not close down the Trust because as a charity it was an independent entity.[375] As a matter of principle, the duty of a trustee is to act in the best interests of the trust (which usually involves the best interests of the beneficiaries), and the interests of the appointing party are irrelevant:[376] they are trustees, and neither representatives nor delegates. Their loyalty is to the trust, and not to the party who may have appointed them. As a matter of comment, if the views expressed in his email were not Roger Evans’ true views, then to take this approach as a means to persuade trustees not to pursue collective resignation was an improper exercise of chairmanship. If they were his true views, they betray an attitude of resigned subservience to his personal perception of what the Government wished, and indicate a refusal to engage on the merits of any contrary opinion. The latter is more likely to be the case, and calls into question the wisdom of appointing a person with such views to become chair of a charity serving an ill and aggrieved beneficiary community.[377]

He accepted – rightly – that some at least among the beneficiary community would have thought that partly because of this attitude and approach, and the absence of robust arguing for the needs of the beneficiaries, the Macfarlane Trust was too close to the Department of Health.[378]

His evidence about a decision taken in a board meeting of April 2013 to make an allocation from reserves below the level at which the programme of expenditure from reserves had been set in earlier documents contained the following exchange. When asked: “Can you recall whether the reduced figure reflects a request or instruction from the Department of Health?” the reply was: “No, I can’t.[379] This is surprising. There should have been no doubt about the answer, in the context of the question. Though eight years had passed since April 2013 the matter was of some significance: any attempt by the Department of Health to request let alone instruct an independent board of trustees to act in any particular way should have been seen as memorable, and unforgettable.

The combined weight of this evidence makes it plain that the leadership of the Macfarlane Trust was less independent of its paymaster, and less observant of its obligation to serve the interests of its beneficiaries, than it should have been: and it suggests that there was in consequence a lack of vigour in pursuing better funding. There is also disturbing evidence of serious tensions between board members which went well beyond those normally to be expected in healthy debate, and were sometimes expressed in unnecessarily personal terms.

This is demonstrated by a remarkable letter of 12 February 2014 from two trustees,[380] who had retired at the end of January, each after several years of service. It was written to Jeremy Hunt in his capacity as Secretary of State for Health.[381] It made a highly unusual complaint to him about the behaviour of the chair, and complained also about Jan Barlow. As to Roger Evans, it said: “Since his appointment, the chairman has failed to consult adequately, in our view, with the Board on matters of importance and upon strategy or to take trustees’ views into account. The minutes of Board meetings, which he oversees, are, we believe, ‘tweeked’ towards his own agenda and he does not suffer being challenged lightly.” It complained that neither the chair nor the chief executive wished to rock the boat with the Department of Health. It suggested too that there had been a conflict of interest for the chief executive between her role for the Caxton Foundation and her role with the Macfarlane Trust.[382] They added that the chair had accused both of them of a “witch hunt”.

The letter was copied to the Parliamentary Under-Secretary of State for Public Health, Jane Ellison, and to the Charity Commission. Roger Evans did not accept what was said. His view was that he did listen to, and took proper note of, what other trustees were saying and wanting, though he did not always agree. He did, however, comment that the board was “a much more relaxed Board than it had been before” after Elizabeth Boyd and Russell Mishcon left, and that he had “very little doubt that I was being quite firm on certain issues.[383]

In summary, the Trust neither functioned well in its relations with its beneficiaries, nor (at least after 2012) did it function well internally at management level.

Funding issues after 2014

Following the exchange in 2011, and the pressure placed on the Trust in 2012 to use its reserves to part fund its annual allocation, the extent to which those reserves were exhausted began to affect, even more, the Trust’s ability to meet the needs of its beneficiaries. By November 2014 the annual shortfall experienced by the Trust between the Department of Health’s allocation and their grant giving programme was £800,000. In a letter from Roger Evans to the Department of Health, the Trust made the following points:

“As we made you aware through last year’s business case, for some time we have only been able to run a relatively small grants budget, which is inadequate to meet the needs of the beneficiary community. We undertook to apply our remaining reserves to fund more substantial grants programmes over the next 3 years, but still required the additional funding from the Department in order to do so. Our inability to meet this need remains as a result of continued underfunding.”[384]

Dr Rowena Jecock replied on 11 December 2014 to say:

“I and colleagues here recognise that your Board may need to consider some difficult decisions on whether to reduce or stop payments, but we are pleased that you are considering now what would be necessary to achieve financial balance. We appreciate that you have been managing the shortfall between Trust expenditure and departmental funding thus far by using the Trust’s reserves, and that this is not sustainable long-term. We have discussed the financial position of the Trust on a number of occasions over the past few years in the context of the significant and increasing pressure on the Department’s central budgets. As you know, we have expressed our concern previously about the sustainability of the Trust’s payment schedules.”[385]

In her oral evidence, Dr Rowena Jecock did not accept that this last sentence was a warning shot across the bows by the Department of Health to Macfarlane, to say that they might not get the money they wanted if they went on making payments at the level that they currently were.[386] While that may not have been Dr Rowena Jecock’s intention in writing in that letter, it is difficult to read the words in any other sense: it is how they would have been understood by the Trust. By way of comment, there is a certain irony in the Department of Health saying to the Trust that on the one hand it is reducing funding to the Trust on account of its reserves, only to then refuse to increase funding once the reserves have been run down.[387]

By October 2015 the Trust’s position had become serious. It was made clear to the Department of Health in a meeting that, leaving £750,000 in reserve in accordance with reserves policy, there was only enough money to supplement the annual allocation for disbursements until March 2017. In the event that there was no increase in the allocation by the Department of Health after March 2017, then payments to beneficiaries would need to be reduced.[388]

However, by the end of 2016 it was plain that the writing was on the wall for the Trust. It would continue to operate for a while during the financial year 2017/2018, and for that period the Department of Health intended to provide quarterly allocations. However, it was made clear to the Trust that during that period it would be expected to use up much of its reserve.[389]

Decisions as to the allocation of funds

Each of Peter Stevens, Christopher FitzGerald, and Roger Evans in turn considered that the Trust should not have been set up as it had been, to distribute inadequate funds to a needy group of beneficiaries on a discretionary basis.[390] The history set out above shows they were right on this. Almost from its inception, difficult decisions had to be made to safeguard the remaining funds for what were thought more deserving cases. A dichotomy was quickly drawn between “primary” and “secondary” beneficiaries. The Trust deed itself drew no such distinction. It was the board, therefore, which made a judgement[391] as to which group was more deserving.[392] It understandably regarded those who had been infected by HIV as the primary group, since others traced their qualifications to be beneficiaries by reference to their being in a relationship with an infected person (whether familial, spousal, dependent, or caring), but the distinction was not one based fairly and squarely upon demonstrated need.

If it were to be a charity, the Macfarlane Trust could not distribute funds for any purpose which was not charitable. The governing deed required a beneficiary to be “needy”.[393] However, the trustees interpreted “needy” as “financially needy”. They did not have to do so. The limitations of taking such a restricted view of what “needy” meant became apparent when the Trust had to grapple with applications by married couples for assistance with costs involved in helping them to have a child without unreasonable risk to mother and baby.[394] However, so far as financial need (as such) was concerned, the trustees (with some uncertainty) made some payments on a regular basis, to some beneficiaries. They hoped that this would best enable beneficiaries to choose their own priorities for expenditure. The amounts which recipients of this “regpay” were given differed. They depended on the category in which a given recipient was placed. The distinctions between categories did not directly relate to financial need though that was supposed to be the sole governing criterion. By mid 2002, the tariff of different categories was such that Peter Stevens described it as complex – there were then 15 different rates applicable to single or married men before taking account of children – such that establishing the appropriate rate used up office time, encouraged inaccuracy, did not recognise different financial needs arising from family circumstances, and allowed inconsistencies to arise.[395]

Though regpay was in principle a sensible approach, not all of the fund could be expended in this way without reserving a proportion to meet particular individual needs. The greater the sum spent on regpay, the more beneficiaries were enabled to meet the cost of the particular needs they individually felt it important to prioritise. But the greater the sum spent on regpay, the less was the sum available to meet unforeseen individual needs or the needs of those not entitled to seek regpay. Establishing the priorities by which those needs were to be assessed so that one-off (single) grants could be paid from such a limited fund thus became critical, but this objective was never properly achieved.

Inconsistent though regpay decisions in the early 2000s were, as described by Peter Stevens, decisions as to single (one-off) grants were yet more so. At some date which was not clearly established, a practice began of the office staff deciding applications – where they were relatively straightforward[396] – and by a sub-committee of trustees where they were either less obvious, and the staff felt they should refer the application to the sub-committee, or where the staff were inclined to turn them down. This sub-committee was known as the Allocations Committee. It became the subject of criticism by beneficiaries, as the evidence mentioned above (especially from Susan Daniels and Jude Cohen) shows, and its replacement by the NSSC was welcomed by the Kingston Smith review.[397]

Throughout, however, there was a lack of openness and transparency. This was despite a number of “wake-up calls”, and despite the fact that each witness who had been involved in running the Trust who was asked in evidence about the criteria and processes accepted that they needed to be open, transparent, and fair.[398]

The absence of sufficient information for beneficiaries stemmed from a misplaced distrust of them by the trustees, expressed as a fear that if the beneficiaries were told more they might abuse the system, or their claims might exceed the funds available to the point of leaving insufficient for future applicants.[399] This distrust led to policies which demanded that need be established in some detail, and that two or three quotations were to be obtained.[400] From 1990/91, the policy, too, was to restrict grants to “health related” issues.[401] This was because, as from that time, regular monthly payments were increased in value – giving recipients greater choice over what they might spend money on, and permitting the trustees to adjust the one-off payments better to favour those with greatest financial need. This policy implied, however, that proof of a health-related need should be supplied, and this involved both financial details being required and the support of a medical consultant.[402] There was, however, no clear guidance on what would be considered a “health related” issue.[403]

For ease of administration, office staff were permitted to authorise grant applications in accordance with broad “office guidelines”. However, these guidelines were not published to the beneficiaries. Though Christopher FitzGerald said that in his time the office guidelines were available to all,[404] Peter Stevens said that no guidelines were published because “they became shopping lists” if that was done, though explanations of the policy could be gained from the handbook, newsletters and from the website. Asked “Why did you think that the publication of guidelines would result in a shopping list, by which I assume you mean applications being made that were unmeritorious?”, Peter Stevens replied: “That’s what happened. We’re dealing with people.[405] His view was also that if a guideline had provided, say, for the purchase of a mattress up to a particular maximum sum, there would instantly be a lot of requests for that sort of mattress, costing that sort of money.

Those seeking single grants were required to ensure that funding for, or provision of, the item required was not available from some other source. The trustees’ view was that recourse to the Trust should be the last resort.[406] Peter Stevens wanted applicants to come to the Trust, but only after they had tried anywhere else that might help.[407]

Regpay required the completion of a census form setting out, in broad terms, household income,[408] and single grants required:

  1. other sources of potential funding to have been exhausted;
  2. three quotes to have been obtained;
  3. sometimes the submission of details of household income and expenditure;
  4. usually the support of a medical practitioner (normally the applicant’s haemophilia clinician);
  5. and

  6. there was no clarity as to the precise criteria by which an application would be judged; nor
  7. the maximum amount which might be allowed.

With requirements of this nature, it is not difficult to understand why applying to the Trust for support was not only seen as bureaucratic but also as demeaning, intrusive, demotivating and embittering. Furthermore, if an application were rejected, what then? There were no published criteria setting out the basis on which an appeal might succeed.[409]

Assistance could be, and often was, sought from the office. But there could be no guarantee that what one applicant was told would necessarily correspond with that which was said to another.

Though the NSSC which made the more difficult decisions on single grants was said on external review to be an improvement in process,[410] it was far from perfect.

Assisted conception

One of the issues which epitomises the way in which difficulties for beneficiaries were made worse than they needed to have been, with distressing consequences, was the issue of assistance with conception. A profound consequence of infection with HIV was the impact on the ability to have a child: there was a real risk that the mother, or baby, or both would become infected: yet few matters are more fundamental to many women, many men, and many couples.

The question of grants to enable artificial insemination had been raised at an early stage in May 1988.[411] Following an initial decision in July 1988 that no such payments would be made, further discussion, and the lack of a “clear consensus on the matter of principle”, led to the position that individual cases were considered on an ad hoc basis.[412] Thus, in the early 1990s the Macfarlane Trust did make some payments to couples wishing to have a child without risk of infection to the mother: typically, a contribution towards the cost of donor insemination treatment.[413] In other cases it did not. By November 1994 there was clearly some discomfort at this position, with the trustees recognising that “there was no valid way to treat different applications on individual merit and that a decision on principle was needed.” The minutes of the board’s meeting record the rejection of “any consideration other than strictly financial” and on this basis the trustees voted “4-4 on whether the Trust should regard such payments as a high enough priority for use of Trust funds.” No application for assistance having at that stage been approved for a considerable period, the chair voted that this was the status quo and gave his casting vote for no change.[414]

At some point in the course of 1995 the Trust “suspended”the making of any such payments.[415] In March 1995, John Williams explained the Trust’s decision to make no grants. He gave two distinct reasons: the second reason was financial (“With a constant need to look to the future and ensure the maintenance of resources for emergency care, the Trustees are most reluctant to accept any open-ended commitment”) but this was, he said, less important than the first reason, which he explained in these terms: “For the Trust to give universal help would be in effect to imply total endorsement of the principles involved. Not only are the Trustees less than unanimous on this point, they also fear that automatic support may in practise nudge more people into making a decision which they might not have made if left to themselves, and which some might sooner or later regret.”[416] By way of comment, this explanation is not consistent with the minutes from the board’s November 1994 meeting, which had rejected any consideration other than the strictly financial. It is also patronising.

The issue of whether the Trust should fund assistance with conception was then discussed at the UK Haemophilia Centre Directors’ Organisation (“UKHCDO”) meeting in September 1995, where a third reason emerged. Dr Andrzej Rejman reported on that discussion to colleagues within the Department of Health: “The Trust had pointed out that it did not have unlimited finances, and questioned whether producing more children which would lead to greater costs for the Trust in the long term was appropriate. One of the Haemophilia Directors pointed out that the Trust would then need to support the children that they had helped to be born ... It was felt that individual Directors should write to the Macfarlane Trust giving their views about whether this was an appropriate use of money.[417]

In October 1995 Amanda Beesley, whose husband Andrew had been infected with HIV through the treatment he received whilst at Treloar’s, wrote to the Trust regarding its policy not to provide grants towards the costs of assisted conception. Her letter powerfully expressed the position she, and others, found themselves in:

“One of the most distressing aspects of living with HIV is the inability of couples to have a family without risking wives and off-spring becoming infected. This is not simply about couples wanting a baby as some sort of possession but is about bringing a sense of purpose to life, of seeing a continuation of self, of keeping pace with peers. (The latter point may seem trivial but the isolation a couple can experience when all their friends have children should not be under-estimated ...)”[418]

She referred to techniques being pioneered in Italy (involving sperm washing)[419] and its associated costs, pointing out (rightly) that “None of this would have been necessary if my husband had not contracted HIV from infected blood products”, and appealed to the Trust “to help wives like me to feel we could have some chance of sharing the joy of parenthood with the partner we have shared so much suffering with.[420]

The minutes of the trustees’ meeting in November 1995 reported that they “again considered the subject of assistance with conception ... most of the reservations previously expressed still applied.” However, trustees accepted that the subject continued to be raised, and favoured a “firm policy ... which could delineate what the Trust would or would not do without involving itself in any ‘judgmental’ differentiation between one case and another and which could therefore be defended in public should this be necessary.[421]

John Williams thus wrote to Amanda Beesley in December 1995 to explain that trustees had not come to a final decision on the question of assistance with conception at their November meeting. He hoped a decision would be made before the trustees’ next meeting, but thought any change to “their earlier exclusion” was unlikely to include any treatment outside the UK.[422]

At the trustees’ February 1996 meeting, Dr Elizabeth Mayne informed fellow trustees that her inquiries had revealed that, contrary to expectation, artificial insemination had a very low success rate and that sperm washing could possibly be considered as an alternative. She said “the more she talked to different people, the more she realised that our members did need help.”The trustees voted to change their policy and contribute towards the cost of private assisted reproduction treatment, provided such treatment was approved by the Human Fertilisation and Embryology Authority and available from the NHS, but not to support experimental treatments or treatment outside the UK.[423] This excluded sperm washing which was not then available in the UK.

John Williams wrote to Amanda Beesley in April 1996, explaining that whilst trustees had “moved some way forward to a more positive response to this type of request, I am afraid there are still some reservations in this respect and I have been attempting some further discussions.” He explained that assistance towards the costs of sperm washing would not “fall into the Trustees’ criteria ... the Trustees are concerned that to give financial support implies an acceptance/endorsement of the process if not an actual recommendation, and they are therefore reluctant to be involved with anything experimental, particularly if it is not accepted by the National Health service. (or in this case by the Human Fertilisation Embryology Authority either)”.It is clear that he was sympathetic towards the request: “your views are entirely tenable even though they do not coincide with the present views of the Trustees ... All I can promise for the moment is that we will raise the matter again with the Trustees and see if we can persuade them to widen (rather than move) the goalposts.”[424]

Amanda Beesley wrote again to the Trust on 16 April 1996, expressing frustration both at the length of time the trustees were taking to consider these matters and at the substance of their position:

“I was of course disappointed to read that the Trustees were still not agreeing to help couples who wished to go to Dr. Semprini’s clinic in Milan, especially as it has taken six months for them to reach this decision during which time, my husband’s health has deteriorated. I think that the committee need to keep to the forefront that they are dealing with requests from a population who do not have time on their side ... We do not have the time available to wait for Dr Semprini’s procedure to be adopted by the NHS, we have to proceed NOW whilst my husband is still alive. Why can the Trustees not treat me as an adult capable of assessing risk to my health and support me in taking what I consider to be the safest option of conception? ... The drive to have children is very strong in many women, possibly in the majority. Women who know they are likely to lose their partners early in life are perhaps more strongly driven than others. This is because we know we are in a race against time and because we desperately want to have a child who will enrich our time with our partners and will continue to be a living testament to them after they die ... I believe that women who are desperate to have children can become desperate enough to take risks (indeed I have met some who have). The Trustees need to accept that this is the case and help couples wanting to be treated by Dr. Semprini rather than contributing to the likelihood of risk taking by refusing to support attempts to conceive more safely.”[425]

A trustees’ meeting in May 1996 discussed correspondence received from three wives (including, no doubt, the above letter) regarding the Trust’s policy. The minutes record that “Discussion on these called into question whether the current Trust guideline was adequately formulated or would be only theoretically a help to anyone, and also on whether ‘sperm-washing’ was or was not gaining acceptance within the UK as an acceptable treatment as opposed to an experimental process.” The Trust agreed to take up an offer by Dr Mark Winter to seek expert advice.[426]

Following that meeting, Reverend Tanner wrote to Amanda Beesley to the effect that the trustees “did not agree to extend the terms under which they are prepared to assist with the costs of reduced-risk conception.” The letter explained that the decision “ultimately rests on what the Trust could and can do with its limited resources” and that “One call on Trust resources that has never been accepted is for medical treatment of any kind, either for people registered or for members of their families.” This latter point was plainly incorrect, as the policy agreed in February 1996 did– in principle at least – agree that contributions could be made towards the cost of some assisted conception treatments.[427]

The position remained unchanged[428] and unreviewed until, prompted apparently by a letter from Dr Winter, the Trust looked at the position again in September 1998. The minutes of this meeting recorded that a number of centres in the UK were now providing treatment that made it possible to use the infected partner’s sperm with a significantly reduced risk of the infection being passed on to mother or child. “Trustees discussed issues raised and felt that legal advice would be necessary on whether or not Trust funds should continue to be used ‘to create more Trust dependants’. It was suggested that there was a fundamental right to have a family and that it was therefore a choice that the Trust could enable Registrants to make.” The outcome was that the chair would report the discussion to Dr Christine Lee, as he understood that UKHCDO was considering the matter, that he would raise the matter with the Trust’s solicitors,[429] and that he would report back to trustees in November.[430] At the Trust’s November 1998 meeting, Dr Winter proposed taking a test case to a health authority for funding, and preferred to await the outcome of such a test before making recommendations to the Trust on future policy changes.[431]

In January 1999 Ann Hithersay expressed the view that “from the point of view of the Trust, I believe the issue is whether or not ‘to found a family’ is a valid ‘need’ to be met in accordance with the Trust Deed ... there is little doubt that our Registrants would consider this a valid ‘need’; as such Trustees will need to devote more time to this issue.[432]

In February 1999 (by which time sperm washing was available in London[433] and at a number of other fertility centres in the UK), the trustees again reviewed the position. Dr Winter reported that some health authorities would consider applications for funding such treatments and advised that the funding was the responsibility of the NHS; the minutes record that “It would be unwise for the Trust to take on the funding of treatments as such.” Trustees agreed that at the present time no further grants should be made for treatments.[434] No grants for sperm washing having been made at all by the Trust by that time, the agreement that no “further” grants should be made for treatments might suggest a reversal of the previous policy that grants could be made towards treatment involving donor insemination. Later documentation confirms that this was indeed the Trust’s position.[435]

In April 2001 the trustees decided against a change of policy relating to sperm washing, but recognised that the wish to have children was “an important issue”: the working group looking at Trust strategy would consider it and make further recommendations in due course.[436] A report produced by Claudette Allen, a social worker for the Trust, recommended that the Trust should start to provide financial support for sperm washing; she pointed out too that people did not have “the luxury of unlimited time, so getting funding is a matter of some urgency and importance.[437]

The matter was considered again by trustees in October 2001: it was agreed that Dr Winter would try to find out more about treatment success rates and health authority funding. The issue “would be deferred to the next meeting of the Trustee Board for decision.[438]

No decision on the issue of principle was actually taken at the next meeting. In May 2002 it was agreed that the Trust would write to each health authority to ascertain its policy on funding fertility treatment for HIV positive couples, and that it should also “put pressure on the Department of Health to provide funding for fertility treatment for Trust registrants and should call upon the UKHCDO and the Haemophilia Alliance to support this move”. The Trust should “be prepared to fund ancillary costs relating to treatment and should also assist couples to apply for Health Authority funding and to appeal against decisions not to fund”. However, it was agreed that a final decision would be taken at the next meeting in July.[439] A decision was thus deferred again.

In July 2002 Ann Hithersay sought approval for an annual budget for ancillary costs relating to fertility treatment.[440] On 30 July, having considered Ann Hithersay’s paper, trustees agreed that the ancillary costs of fertility treatment could be funded and that costs up to a maximum of £2,500 per couple would be met by the Trust.[441] It remained the Trust’s position that treatment costs should be funded by the NHS: the ancillary costs would cover expenses such as travel and subsistence.

In 2003 Hilary Barnard’s Long Term Review report recommended that there should be direct support to registrants for assisted conception “and lobbying for all parts of the NHS to recognise that funding of assisted conception for registrants and their partners is a justified claim that should be met from the public purse.[442]

By August 2004 it nonetheless remained the position that the Trust only funded ancillary costs. At a board meeting that month it was noted that any change in policy would be a “major shift in the nature of support given to the registrant community” and it was resolved to defer the matter for considered debate by the NSSC.[443]

That debate happened when, in January 2005, the NSSC recommended that the board should adopt a new policy on financial support towards assisted conception: that applicants should attempt to obtain through the NHS as many of the tests and procedures as available; that the NSSC would consider applications towards a maximum of three cycles of sperm washing at a maximum cost of £2,000 (sperm washing not being available via the NHS); and that the NSSC would consider applications for funding for other aspects of assisted conception where there was evidence that the NHS would not fund these or that there would be inordinate delays due to waiting lists.[444]

The board, however, remained unsure. Following a “lengthy debate” at its January 2005 meeting, which followed the NSSC recommendation, it was resolved in the first instance to ask the Department of Health for its attitude to the difficulties caused by the postcode lottery within the NHS, and to seek approval from the Department of Health regarding the proposal to support registrants in their attempts to “advance conception by assisted means.[445] Martin Harvey duly wrote to the Department of Health on 31 January 2005. William Connon’s response as Head of Blood Policy on behalf of the Department of Health was that providing additional assistance for registrants to undertake treatment programmes for assisted conception would not be appropriate.[446]

Notwithstanding the correspondence with the Department of Health, the NSSC at its February 2005 meeting reported that its policy recommendation had been agreed and that the Trust policy on assisted conception was as had been proposed in January.[447] This was reflected in the office guidelines for March 2005 which explained that grants could be made for a contribution towards the cost of sperm washing (maximum £2,000) and towards costs related to, but not including, treatment for assisted conception.[448]

Amanda Beesley’s reflection on the Trust’s approach, in her oral evidence to the Inquiry, was telling:“it’s just typical of their approach, really, that they were just a paternalistic organisation and they held so much control over what we could and could not do with our lives ... they just wanted to play God with us, you know, wouldn’t allow us to make our own decisions, you know, which we should have been able to.[449]

NSSC from 2008 onwards

In 2008 Neil Bateman, an experienced and effective welfare rights advisor, was asked to advise on a proposed welfare policy. His response was that it was very complicated, and effectively grafted another means test on top of others already undertaken for many welfare benefits. He commented: “as a general principle, it’s not a very good idea to have a separate means test for people who have already been means tested often to death by the DWP [Department for Work and Pensions]”; that he was also “concerned that they didn’t seem to – – it didn’t take into account the costs of children and the costs of taking paid employment. And, you know, there’s a substantial – – I mean, one of the things that should happen with any kind of means test, because it does inhibit people taking up paid work, is try to mitigate that as far as you can. And one way is sort of the costs of employment, travel, equipment, that kind of thing”, and “they were proposing sort of step payments, and the problem with step payments is that it creates a cliff edge effect for people. And we get this elsewhere – – we actually get this in places in the social security system, sort of a bit of all or nothing, and it creates terrible problems for folk.[450]

It was a while later that Roger Evans took over as chair. But he had been a member of the NSSC for several years, and recognised that its process was undesirable as it stood. He described how beneficiaries were essentially subjected to a means test: “in order to obtain even small amounts of money Applicants were required to complete a template in which they listed detailed family information, notably family income, spending habits and circumstances. The system was humiliating and intrusive ... it was not unusual for NSSC to ask for more information, delaying a decision for at least a month. Sometimes they were visited at home.[451] He understood that it was even suggested that photographs of beneficiaries’ homes should be taken.[452] The following exchange took place: “Q. Do you remember having any concerns about whether that was a fair and appropriate matter to be taking into account? A. Yes, I thought the whole thing was not the right way to go about it.[453]

Shortly before Roger Evans became chair, a further questionable policy was introduced. The principal criterion for assessing grant applications by the NSSC became one of “exceptional circumstances”.[454] According to Roger Evans, it adopted this approach without first seeking approval from the board, and “exceptional circumstances” were never precisely defined.[455] This lack of clarity and transparency in respect of exceptional circumstances, coupled with their lack of knowledge of what might be applied for by way of grant through the NSSC and how decisions to accept or refuse applications were being taken, caused unhappiness to beneficiaries. Roger Evans said that when he discovered this in 2012 he “very much agreed with them on it”.[456]

What Roger Evans says seems to imply both that the NSSC acted on their own initiative, without the knowledge of the board, and that there was no working definition of exceptional circumstances. Neither of these implications is correct.[457] As to the first, a consequence of the additional provision made after the Archer Inquiry report was that more money would be made available for “primary beneficiaries”, making it less likely that they would need financial help for expenditure to meet foreseeable needs. The chair (then Christopher FitzGerald) and Martin Harvey led discussion at a meeting of NSSC in November 2009 that agreed that although wider discretionary support might be made available in exceptional circumstances, this should not be made widely known.[458] In December 2009, the NSSC recommended that single grants to primary beneficiaries should end after March 2010,[459] (which would have meant that whatever the circumstances a “primary beneficiary” would receive no one-off support for any need, exceptional or otherwise) – but the minutes of the board are clear that as far as the board was concerned there remained room for them in circumstances which were unspecified.[460] In mid 2010 the board minutes went so far as to note that: “grants for the period were low because only the non-infected community could now apply, save for exceptional circumstances. The Chairman asked the NSSC minute taker to ensure that when a grant for a PB was agreed that the exceptional circumstance was noted.[461] Roger Evans was present at that meeting, as he was at a board meeting in October 2011 when the chair specifically reminded trustees that “one of the objects of introducing the policy for discretionary ‘top-up’ payments had been to remove the need both for one-off grants (other than in exceptional circumstances)’ and for ‘across the board’ seasonal payments.[462]

I thus cannot accept any implication from Roger Evans’ evidence that the NSSC acted without board knowledge and approval.

As to “exceptional circumstances” there was – eventually, in July 2012 – an agreed definition.[463] It was: “circumstances that have arisen or are threatened which, in the opinion of the NSSC/Board of Trustees, are unlikely to have been anticipated by a beneficiary in the ordinary course of events and/or it is unreasonable to expect a beneficiary to have to deal with the financial outcome from their normal income.

I cannot therefore accept Roger Evans’ evidence if it is read as his saying that there had never been a definition – but I do accept that there was no definition until mid 2012 and even then the definition as adopted still lacked precision.[464]

The NSSC had become quite bureaucratic in its approach.[465] Decisions were delayed. Roger Evans described it as having “introduced some of their own criteria[466] (and it led to complaints). Whatever had been the position as to office guidelines before 2011, by now at any rate they simply were not published. The dissatisfaction was such that it reached the ears of Dr Ailsa Wight, deputy director of Infectious Diseases and Blood Policy, at the Department of Health, who referred to it in an email to Roger Evans.[467] Once the board was aware that there was this dissatisfaction he said that they changed the NSSC membership, and established a Grants Committee to replace the NSSC.[468] Nonetheless, it took over 16 months for the Trust to introduce new guidelines for grants.[469] These replaced the previous office guidelines, but the document introducing them said at the start of the text that it was “intended for internal use only – it will not be distributed to beneficiaries. A summary of the key areas in which grants will and will not be considered will be produced separately as guidance for grant applicants.[470] In evidence Roger Evans could recollect no reason why the full document should not have been given to beneficiaries.[471]

By the end of November 2014, the office was given authority to assess income and expenditure individually, and staff referred cases to the Grants Committee where there was difficulty in establishing charitable need. “Exceptional circumstances” had been jettisoned as a criterion. However, it was unclear against what standards or criteria household income was to be assessed, and to what extent it was “disposable income”. It was unclear too quite what the impact of any assessment of disposable income was. There was no consistent practice as to the way in which the income of adults in a household other than the primary beneficiary was taken into account. It was “common sense, really” according to Roger Evans (in practice, therefore, the decision might vary with the views of the decision-maker).[472] Household income (whatever use was made of the term) was looked at when considering not only single grant applications, but when assessing regpay, both for primary beneficiaries and widows. When pressed upon the “two quote” principle maintained throughout his chairmanship rather than some more flexible system, he described the principles applied as “guidelines” which did not have to be followed to the letter.[473]

Jan Barlow’s evidence confirmed expressly that when she arrived she thought the process of funding single grants was very bureaucratic, that it could take many, many months for people to get a response to their grant applications and that there were difficulties with communications because the whole time people were being asked for more information.[474] She said that “exceptional circumstances” criteria were difficult to understand, such that this criterion was abandoned when the Grants Committee succeeded the NSSC; that census forms had to be completed each year – the purpose being to see if the income now fell in a different bracket than previously for the purposes of regular pay – and that people were treated as if they were in receipt of benefits which they had not applied for but would get if they did. Payments from the Skipton Fund (which most infected beneficiaries would have received, because most were co-infected with Hepatitis C) were brought into account in assessing income.[475]

One particular exchange between Counsel and Jan Barlow shows the degree to which decisions as to single grants were subjective and depended upon the view at the time of the decision-maker rather than being based on any policy or guidance:

“Q. So you had financial information about expenditure and income and outgoings and so on. Equipped with that information, how would the member of the office staff or those sitting on the NSSC assess if it was something that it was reasonable to expect the individual to pay for themselves or not?

A. I say, it was a kind of judgement based on the amount being asked for and someone’s financial position and disposable income.

Q. Was there anything by way of guidance as to how that judgement should be exercised?

A. As I said, it was a judgement in relation to the amount being requested in relation to people’s disposable incomes ...

Q. ... there wasn’t, as a matter of fact, any form of written policy or guidance to decision-makers about how to make that judgement?

A. No, not over what I’ve just described. And, as I say, the reason for that – because you couldn’t – it was almost impossible to give an absolute because the equation changed every time.” [476]

Her evidence was that the Macfarlane Trust had sympathy with the beneficiaries’ position in opposing Skipton payments being taken into account when assessing needs associated with HIV. She would have liked to change its policy. However, she thought it would need funds to do so, and when they were not forthcoming the policy simply did not change. In short, what was recognised to be an undesirable policy, likely to cause distress to many of those subject to it, was simply persisted with.[477]

As for taking account of welfare benefits, there was little appreciation of the fact that many such benefits are paid to meet specific needs and are calculated to give little more, if anything, than the minimum required to do so. Instead, child benefit, one such benefit, was taken into account in assessing income for the purposes of the Macfarlane Trust.[478]

Though Peter Stevens, Roger Evans, and Jan Barlow each accepted that the Trust’s system for giving grants should be transparent, consistent, and fair,[479] it was neither open, nor consistent. Because the decision-making was opaque and decisions were rarely given in sufficient detail to enable an applicant to know why they had failed,[480] nor were sufficient details given as to the appeal process, it cannot be said that they were necessarily fair. A strong suspicion must exist that individual decisions were unfair since they were reached by a process in which no consistent criteria were applied, and which left too much to the individual views of a staff member or trustee as to what seemed meritorious. On the face of it many of the decisions revealed by the evidence seemed to beneficiaries to be inconsistent with each other. If they were inconsistent they were unfair for that reason alone, whatever other charge of unfairness might also be levelled at them.[481]

It is not a necessary consequence of limited funds that the system for distributing them should be secretive. Though any criteria for distribution would have been open to debate, and their consistent application would have been bound to upset some, establishing them clearly and openly would have been far more satisfactory. The process would have been fairer. The result would have been as fair as the more general limitations[482] of the fund permitted.

Perceptions of an uncaring and dismissive attitude of those running the Trust

The (deliberate) lack of openness and the consequent lack of transparency not only helped to cause, but was accentuated by, the poor quality of personal relations between beneficiaries on the one hand and the chief executives (Ann Hithersay excepted[483]) and a number of the trustees on the other.

Partly, this may have been influenced by the lack of a voice on the board of trustees. Though the Haemophilia Society had a right of appointment of trustees, the early appointees were selected more for their financial acumen or previous public service than for lived experience of haemophilia or infection.[484] Trustees were volunteers, as is conventional, and the first administrator had a background in the armed services. There was only one “user trustee” (ie a beneficiary who was a member of the board) until Ann Hithersay successfully lobbied for their introduction in the early 2000s.[485] Prior to that, a “user trustee” was required to withdraw from trusteeship if they wished to receive any benefit from the Trust.[486] This meant that there was no one with lived experience to help the board.[487] The general evidence was that though some – Peter Stevens being one – made an effort to engage with beneficiaries, particularly in the early days of the Trust when weekends were arranged for beneficiaries to attend and for trustees to come and meet them, for instance over dinner, these fell away, in part through pressures on funding. Engagement after that was first through a Consultative Panel and then through a Partnership Group.[488] This was regarded poorly by at least some trustees,[489] possibly because it proved a conduit for complaints about aspects of the way in which the Trust was being administered.

Trustees, for their part, often felt that the beneficiaries did not appreciate that since distributions had to be made on the basis of individual need there had to be some of the elements of the scheme which reflected that.

Very generally put, the trustees and beneficiaries did not see eye to eye. Jan Barlow said that the beneficiary cohort found it difficult to agree amongst itself as to the appropriate approach. A consequence was that the Partnership Group ultimately fell into disuse. The Haemophilia Society again provided a neat summary of this in its submissions: “the support schemes rarely involved real consultation with those infected and affected, and never took into account the longer-term financial impact on families. Those people and families who were entitled to make claims should never have been made to feel like they were charity cases (as the evidence shows that many did).[490]

The absence of any organised feedback or conduit for concerns left individuals to respond in their different ways as between the Trust and beneficiary. For many beneficiaries, who might talk amongst themselves, this was influenced by the way in which some in authority in the Trust expressed themselves. Peter Stevens, in particular, tended to express the distrust he had of the behaviour of others in a forceful and disparaging manner. He recognises that he has made a number of totally inappropriate – indeed, disgraceful – comments, and described some of his longer verbal explosions as “rants”.[491] Beneficiaries may not have seen the wider picture which his evidence to the Inquiry coloured in: that he did not exclusively reserve expressing his sense of the shortcomings of others for them alone. He expressed it towards ministers and civil servants as well, politicians and doctors; and about the Government itself. Thus when it was mooted that although the MSPT1 (of £24 million) was non-discretionary and not a charity it should be administered by the Macfarlane Trust, and that the Trust be paid only £19 million up front, being reimbursed later for the shortfall, he described this suggestion by the Government in extreme terms as “an outrageous suggestion”, “absolutely laughable”, and later that it had come about “probably through political or official idiocy. I mean, it was ludicrous.[492] He recognised that he ranted, for instance over the Government giving no assurance of funding let alone enough money to be getting on with, in his view with the object of ensuring that beneficiaries blamed the Trust and not the Government for what was government wrongdoing.[493] He speaks (to this day) about them finding money “down the back of the sofa”; that “setting up an inadequately funded charity was the Government’s view of what to do about the people”; that the decision by Caroline Flint in 2006 to reject his business case calling for £7 million to be paid per annum was “absolutely outrageous; typical civil servant smokes and mirrors”.[494] He had to apologise to a civil servant for his rudeness, and said that he had expressed himself robustly to Caroline Flint in terms which the Inquiry was left to imagine, though he thought them to be language used in Parliament.[495] When he appeared to express distrust of the truthfulness of applications, to the effect that registrants would abuse the scheme unless there were safeguards, Counsel pointed out that it was usually the case they had to have the support of their clinicians. The reply was: “It would be nice to believe that clinicians were always capable of being objective.[496]

However, though he did not single out beneficiaries to be the sole target of his intemperate remarks, they did have a special place in his rhetoric. He referred to the Partnership Group as being a “lot of moaners”, and did not object to phrases such as “the great unwashed” being used to describe beneficiaries seeking to apply for assistance.[497] The irascibility of his responses was evident when Haydn Lewis sent a private email to him which Peter Stevens agreed was courteously expressed. Despite the email being headed “Private”, he forwarded it to Martin Harvey saying “Notwithstanding the heading, I thought you’d love to join me in starting the week with an insight into the thoughts of Haydn Lewis ... It is irritating that someboyd [sic] so thick can come up with such meddlesome suggestions.” He agreed this was totally inappropriate, and indeed went to Cardiff to meet with Haydn and his brother Gareth to apologise for his use of language.[498] He had added that, as a result of the letter “I shall never have a private Email from Haydn Lewis again. Oh happy day! ... Calloo! Callay!’ ... Otherwise, what a monumental waste of time – not just this afternoon, but all the previous hours spent nurturing that lot of moaners.[499] In the last document in the series he said in an email to Martin Harvey: “What’s with these people? Funnily enough, when you set it out as you have done, it makes one wonder why infected intimates are treated exactly as registrants since they do not have haemophilia to worry about. We might see if we can review that when we get round to looking at regpay at the NSSC (that would be a way of pissing off the Lewis contingent).[500] This he described as making “a throwaway remark to a friend.[501]

In March 2006, a letter he wrote to Clair Walton[502] led to a formal complaint against him.[503] Clair Walton had been receiving an additional payment for some three years. Martin Harvey then told her that this payment would stop. The letter includes a number of passages which are surprising, to the effect that Ms Walton had received considerable sums, that her frequent criticism of the Trust “appears to ignore this and to assume that we have unlimited resources that we can apply at each and every case – or, at least, to your own”, that “You are, of course, entitled to ask us for help. You are not entitled to receive it, any more than anybody else is ... I do suggest that you might give some consideration to the fact you are but one of some hundreds of people who look to us for assistance, many of whom are less articulate than you, do not have the benefit of owning any property, as you do, have dependent families, which you do not, and whose health is much more compromised than your own.

Christopher FitzGerald, having recently taken over the chairmanship, met Clair Walton to hear her complaints about the way in which she had been treated and said in a letter of 16 May 2007 that “whatever sense of frustration or exasperation may have been entertained ... the letter of 13 March 2006 was entirely misguided and misdirected in its tone and approach; in short it should never have been written at all.[504]

Comments such as those singled out above became known, and created a perception, especially among those beneficiaries who were in groups which supported each other, that trustees did not care, and did not respect them as individuals. Christopher FitzGerald was right to say what he did in his letter to Clair Walton. Peter Stevens’ letter should never have been written. The damage such comments caused to relations between Trust and beneficiaries was always thereafter likely to be difficult to repair. The fact that the processes adopted for applications for regpay or single grants were as described above, appeared to many beneficiaries to support the perception. They could be seen, with justification, as indicating a lack of care or appreciation for the ill health of beneficiaries, and the social and economic consequences which resulted: to require someone who is ill, or suffering from energy-sapping fatigue, to have first to ask office staff if their application has a chance, then to provide evidence that there are no other sources of support, get evidence that a clinician supports the application, obtain two or more quotes, retain receipts, and be means-tested more than once when they had “already been means tested often to death by the DWP[505] is liable to be seen by those who have already been stigmatised for being ill as being the manifestation of a callous indifference towards them.[506] This approach should not have been adopted.

This landscape undoubtedly influenced reports which reached the Haemophilia Society. Elizabeth (Liz) Carroll became chief executive of the Haemophilia Society in January 2014, without any previous experience as a CEO.[507] She discovered that there was “not much of a relationship” between the Haemophilia Society and the Trust. It was not in dispute that she and the CEO of the Macfarlane Trust, Jan Barlow, seldom met before the start of 2015.[508] What then happened is contentious.

At that time, the APPG had just published a report on the operation of the trusts and schemes.[509] Liz Carroll wrote on 10 February 2015 to the Minister, as instructed by the Society, to respond to the publication of their report. The letter recorded that the Society had had “a great deal of contact with people affected by contaminated blood” and occasionally met with the chief executive and the chairs of the Macfarlane Trust and the Caxton Foundation. It then said:

“Although we do receive mixed views on the organisations, the overwhelming experience of those we speak to is dissatisfaction, distress or anger at the way beneficiaries of the organisations are treated. Some of this is directed at the Department of Health in terms of the level of support provided, but much is focused on the lack of respect and understanding of the issues beneficiaries face by the staff of these organisations. This was also reflected in the many personal stories relayed by the MPs who spoke at the Back Bench Debate. The Haemophilia Societies [sic] own experience backs this up, including at a recent meeting between myself and the Chief Executive, Jan Barlow and Chair of The MacFarlane Trust Roger Evans, where they expressed the opinion that the Department of Health should wait before responding to Penrose so more people will have died and they will have less to pay out.”[510]

It is this last sentence which is contentious: did Jan Barlow and Roger Evans say what she recorded they had – that the Department of Health “should wait” for the reason given – at their “recent meeting” (it was on 29 January).

It is clear that neither Liz Carroll nor Jan Barlow found their meetings particularly easy and comfortable, and Jan Barlow said as much to Roger Evans.[511] For her part, Liz Carroll said that she and Jan Barlow “came at things from a very different perspective, and shared little ground when it came to our approach to matters despite serving the same community.[512]

Liz Carroll recollected that the meeting of 29 January had been called at the request of the Trust, and that it was not a formal meeting: there was no agenda. Surprisingly, though the meeting was not formally minuted, no note was taken of it, nor made immediately afterwards, by any attendee. What was said at that meeting therefore relies entirely on recollection. The anticipated report of the Penrose Inquiry was amongst the matters discussed. The controversial sentence relates to this.

The contentious statement first became public when Liz Carroll sent her letter of 10 February (12 days after the meeting), to Jane Ellison, Parliamentary Under-Secretary of State for Health, with copies being sent to the APPG, shadow health ministers, the Secretary of State for Health, and two other parliamentarians.

Contrary to what is in the letter, there is in fact no evidence that Roger Evans expressed any such opinion as the letter attributed to him. Liz Carroll said in evidence to the Inquiry that Jan Barlow did: but she did not say that Roger Evans said anything to express agreement with what she said.[513]

The first written account of what had been said during the meeting came in the minutes of a meeting of the Haemophilia Society board of trustees, held on 4 February, six days after the meeting. The minute reads:

“The possible implications of the Penrose report were then discussed and LC [Liz Carroll] stated that this will have an impact UK wide and might bring things to a head early in to the new parliament. The Haemophilia Society would keep the pressure on whoever is in government to make an announcement as quickly as possible. Jan then expressed her opinion that the DH should wait for as long as possible before making any decision as more people will have died and there will be less people to pay and fight for payment. LC did not comment on this point.” [514]

The trustees of the Society discussed this. They decided Liz Carroll should write to Jane Ellison, copied as above, stating the view that the current administration and system was not fit for purpose, and giving some examples why that was.[515] This led to the letter of 10 February. Nothing was minuted which called upon Liz Carroll to refer specifically to the statement said to have been made by Jan Barlow, let alone to imply that Roger Evans was complicit in it. Nonetheless, she chose to include it, and to imply that he had been. The draft letter was circulated amongst the Board. Her view now is that the Board backed her sending it as she had written it. Discussion amongst trustees followed by email, such that by 22 February Liz Carroll was able to report that the consensus was that the letter should be published on the website. That then happened, and wider publicity still was thus given to Liz Carroll’s account.

Liz Carroll not only wrote to Jane Ellison on behalf of the Society on 10 February. She also wrote on 13 February to Jan Barlow.[516] In this, separate, letter she said she would be writing to the Minister about “our whole conversation, including your thoughts on possible outcomes from the Penrose Inquiry and your possible plans to ... suggest the potential of merging the 3 charities to simplify the complex system currently in place” but said nothing about the alleged comment, nor that she had just alerted, or was just about to alert, the Minister, Secretary of State, the Shadow Secretary of State, APPG co-chairs and other MPs, to it, though proper practice would have suggested she should have done so.

The publication on the website provoked an angry call from Roger Evans. He first attempted to contact Bernard Manson, the chair of the Society with whom he understood he had a good relationship. When he was unavailable, he spoke to Liz Carroll. Her account of this call was given almost contemporaneously in an email to trustees.[517] She records that he was very angry, said the comment was libellous as the words had not been said, “and if anything was said it was him recounting an anecdote.” He threatened legal action unless the letter was retracted within 24 hours. In evidence, Roger Evans said he had no recollection of mentioning the words put in quotes above.[518] It remains a curiosity that he should contemplate having said something that was misunderstood, since despite the wording of the letter the evidence is clear at least on this – that Roger Evans did not say nor indicate anything to show his support for the contentious words, if indeed Jan Barlow spoke them.

What then followed were threats by the Trust to sue the Society for libel unless the statement was retracted. Under this pressure, Liz Carroll felt (she said) that the Trust should accept the unequivocal advice of their lawyers, which was to accept that Jan Barlow did not say what had been quoted and should apologise. Liz Carroll was instructed by the chair of the Society to follow that advice. A draft retraction travelled between solicitors, in the course of which the allegation was no longer referred to as being “incorrect” (the first draft) but ended up being described as “false”. The Society apologised unreservedly to the beneficiaries of the Trust; it accepted that Roger Evans, Jan Barlow and the Macfarlane Trust did not express the opinions attributed to them.[519]

The incident was undoubtedly public, and soured relations between the Macfarlane Trust and the Society. It further reinforced the negative views many beneficiaries had of the way in which those running the Trust regarded them. However, what actually happened at the meeting is impossible now to determine with any degree of certainty. Jan Barlow is emphatic that she did not say the words attributed to her; Liz Carroll is certain she heard what she heard.[520] I am inclined to accept that she believes she heard the words she now attributes to Jan Barlow: though I suspect that what is now certainty in her mind may have been developed by the way in which the comment was picked up in discussion at the Trust board.[521] It had not hitherto been a point of apparent central importance to Liz Carroll. Given the state of relations (cool) between the Society and the Trust prior to the meeting, and the difference of personal approach which Jan Barlow and Liz Carroll had, it is unlikely that an unguarded comment to the effect that policy should be one of saving money rather than supporting people with a just claim upon that money would have been made by Jan Barlow, in particular to the person whose job it was to represent most of the would-be claimants.[522] It is more likely that Liz Carroll came into the meeting with a view of the attitudes likely to be struck by Jan Barlow and Roger Evans, based upon the experiences of members of the Society as had been reported to her. Might she, in effect, have heard what (in good faith) she expected to hear, rather than what was actually being said?[523] Liz Carroll did not at that point act as a chief executive should. If the comment had been made, in the way she recounts, she should have challenged it immediately. She was, however, inexperienced. But there is nothing in her account which suggests she was so taken aback that it affected the rest of the meeting, as might be expected. Nor did it feature significantly in her account until a little while later when she ruminated upon it.[524] She should, then, have recognised the possibility that she might have misheard or misunderstood what was being said. The conversation was not being recorded nor minuted at the time. She should, if acting professionally, have raised the issue in either (preferably) an email or note to Jan Barlow copied to Roger Evans, to the effect “did I really hear that?” and at the very least, make some mention of it in the letter which she wrote to Jan Barlow on 13 February. This letter failed to mention the comment which she was reporting to the ministers and MPs. According to the minutes, she was not obliged to make any reference in her letter to MPs to that comment. Given the sensitivities, it would have been desirable that the Trust be contacted before the letter was made public, even if the conversation might not have been an easy one. There was no reason for assuming that because Roger Evans said nothing, he agreed with the comment attributed to Jan Barlow. Since Liz Carroll herself said nothing, the difference between her position and that of Roger Evans could only be that she assumed the position of Roger Evans was that he supported Jan Barlow, and this is a reflection of what she had heard from others rather than anything she recalls from his behaviour at the time.

A suggestion was advanced from some core participants, through Counsel to the Inquiry, that one possible reconciliation of the differing accounts is that Jan Barlow said something to the effect that the Government would probably want to delay to lessen their bill, rather than that was what they should do.[525] Too much depends on the word “should” for it to be reliable in these circumstances.

It may well be that what these core participants have suggested is what happened. However, I cannot say that that is the case: the evidence from Jan Barlow is that she said nothing that might have been mistaken. What can be said with greater certainty is that what happened was a sad and sorry episode. It caused further upset and irritation to many beneficiaries, seeming to many to justify the suspicion they had that neither Roger Evans nor Jan Barlow had their interests at heart. Liz Carroll did not act professionally. In other hands the matter would have been solved. If anything like the comment had been said it would have almost certainly then have been retracted or disavowed: if it had not, but had instead been maintained in the words Liz Carroll thinks she heard, then it both could and should have been called out – but there would then have been much more certain evidence of it. For his part, Roger Evans risked spending the funds of the Macfarlane Trust pursuing a legal action when it was not part of the charitable purposes of the Macfarlane Trust to do so, and it is not easy to see how to do so would benefit the beneficiaries, so as to come within the scope of ancillary powers sufficiently to justify the expenditure of charitable funds. Instead, the events and how they were handled added poison to an already damaged relationship.

Whether or not the comment was made forms part of the whole context. The only reason this incident, and the one word “should”, has merited the length of discussion it has in this Report is because it had assumed a significance beyond that which it deserved. It must remain uncertain whether or not the words were spoken as reported, though the likeliest scenario is that none of the accounts I have been given is entirely accurate, and what happened owed much to the way in which the protagonists thought of each other at the time.

Following the publication of the APPG report and parliamentary debate (and the fracturing of the relationship between the Haemophilia Society and the Macfarlane Trust after the letter of 10 February), the writing was on the wall for the continuation of the Alliance House Organisations. Jan Barlow was concerned to ensure that they continued to operate. Some 15 months after the report, however, Roger Evans decided to vacate his post. During that 15 months nothing was done, as it should have been, by the Macfarlane Trust to address the concerns which the APPG had highlighted. When asked whether the Macfarlane Trust put in place any kind of programme for analysing the criticisms and working out what to do to address them, he said that he did not recall what the Trust did. He said that Jan Barlow, as chief executive, would have been commissioned with carrying out the work to address the concerns, but could give no further detail. He accepted, however, that it would have been helpful to have worked through the various criticisms and drawn up an action plan.[526]

Relations with the Society were at a standstill. The Trust refused to accept any nomination of a new trustee by the Society. Roger Evans lost trust in Jan Barlow: she had a lengthy absence from work due to circumstances beyond her control, but Roger Evans felt that when he wanted to talk to her there was no contact. He assumed that she was deliberately avoiding responding to him.[527] There is little evidence that the Trust took any steps actively to address the concerns raised by the APPG. The impression left is that it was coasting, apprehensive as to the form in which the sums available for beneficiaries would be administered in future, and without the trust between chair and chief executive which was necessary if the Trust were to take any decisive steps.

In 2016 the Department of Health had reached the view that the Alliance House Organisations should, insofar as England was concerned, be administered as one scheme. In early 2017 it determined that the administration of the schemes would be brought in-house and would be done by the NHS Business Services Authority (“NHSBSA”).[528] A consequence of that, and of the decision that had already been taken in Scotland to establish a Scottish scheme, was there would be four separate schemes, one for each of the four nations, health being a devolved matter.

As a charity, and being separate from the government, the Macfarlane Trust had to decide how to dispose of such assets as it maintained. At a meeting on 31 July 2017, the board decided to pursue one of four options, namely to distribute reserves (expected to be approximately £1.4 million) through a targeted, time-limited grants programme, at the end of which the Trust would be wound up. It expected to do so before the lease on the Alliance House offices expired in February 2019.[529] Then beneficiaries were asked at the beginning of January to apply for a grant covering the cost of works (such as installing replacement boilers) before 26 February 2018. When Jan Barlow reported to the board at the end of March 2018, it appeared that there were 74 applicants, who between them had requested just under half of the reserves.[530] Alasdair Murray had taken over as chair when Roger Evans left.[531] His evidence was that there was no time to run another programme to run down the reserves by individual application: he accepted it would have been better if the applications process had been re-worked.[532] There had been no discussion about it with the beneficiaries.

By November 2018, because some of the allocation for grants which had been requested had not in the event been taken up by payments, there were reserves in total of £1,321,174. The majority of these were free reserves. Two separate donations were included in these sums, the “Honeycombe Memorial Fund” and the “Wilson Empowerment Fund”. The first had some £40,000 remaining. The original donation had not been restricted to any particular purpose, but had been designated by the trustees to provide support to widows and bereaved partners without children. £27,000 of the original capital remained. The trustees decided to remove the designation, and to add the £27,000 to the free reserves.

At its meeting on 1 November 2018, the Trust recorded the decision in respect of the Honeycombe Fund, and accepted legal advice that the funds and assets could be transferred to the Terrence Higgins Trust (“THT”). This would be subject to a restriction that the funds and assets transferred to the Trust were to be spent in line with the objects of the Macfarlane Trust’s deed and scheme of amendments – that is, that the use of those funds would be restricted to supporting the purposes set out in the scheme.[533] In practice, this means that the scheme administrator (THT) is obliged to deal with the funds for the same beneficiary cohort, under the same principles as applied when the Macfarlane Trust was the scheme administrator.[534] It did – and does – not give the THT freedom to use the money in support of those who are infected with HIV but would not have qualified as Macfarlane beneficiaries.

The souring of relations between many of the beneficiaries and the trustees was well known. It had arisen in large part because of the way in which the Trust had discharged its duties, in particular by its exclusion of beneficiaries both from involvement in policy, and from information about process. It is a pity that lessons had not been learned from this history such that beneficiaries were consulted meaningfully about the transfer of administration to the NHSBSA, and of reserves to THT. There was ample time to do so once the transfer of the schemes to the NHSBSA was announced in March 2017. This is probably because the trustees expected that their invitation for beneficiaries to apply for single grants from the remaining funds would exhaust the available funds. It might however have been foreseen that the funds would not all be used up in this way, and decisions would need to be taken as to what should happen if they did not. Had there been consultation, beneficiaries would have had the chance to raise the concerns which have subsequently been expressed. It may well be that after consultation and the further consideration to which that would have given rise that a different decision might have been reached. That opportunity was lost.

A consequence for many has been a perpetuated sense of grievance. What remains of the former Macfarlane Trust assets are now in the hands of the THT. These assets remain subject to the obligation upon the THT to administer them for the benefit solely of those who would have qualified from the Macfarlane Trust deed.

Commentary

The facts and evidence set out above speak for themselves. They tell a sorry tale of a payment scheme which had significant problems from the very start both in the way it was set up, and the ways in which it operated. The failings are obvious. They are failings of the State, the Trust (in so far as it can be seen as a body), and of individuals concerned in its management when they acted in ways they should not have done, or more usually failed to act when they should.[535]

Nonetheless, lest there be any doubt that I take the view that in these respects there were serious failings, they merit summarising here in a number of bullet points.

The worst aspect of this history, however, is its effect on the people who needed to be supported properly and were not. People whose suffering was supposed to be alleviated by the payment scheme instead had that suffering exacerbated: they felt kicked, and kicked again, when they were already down. They were repeatedly rebuffed in their attempts to argue that they deserved more and better from authority.

The way in which the Government responded to the infection of people with HIV by establishing this Trust, operated as it was in the ways described, added layers of suffering – psychological, economic, and social – to an already devastating disease.

The list which follows cannot do full justice to what happened – for which reference should be made to the text, and (for those who have time and inclination) to the underlying documents that support it. However, in brief:

  1. The Trust should not have been set up as it was:

In the light of the findings in previous chapters, it can also be said that the Government wrongly took the approach that the sole entitlement of any beneficiary should be to ex gratia payments, rather than a correct approach which would have been compensatory, but I want to make it clear that the conclusions of this chapter summarised here stand alone and apart from that. The wrongs reported in this chapter stand independent from (though additional to) that issue.

Many of the issues related to providing for the needs of beneficiaries were exacerbated by the trustees holding a reserve, which they were effectively obliged to do if they were not to rob the tomorrow of some beneficiaries to pay for the today of others. Thus, government having set the Trust up, with a low level of funds if looked at per capita, it should not have left it with no guarantees of, or plan for future funding, leading to insecurities about funding and an inability on the part of the Trust to develop coherent and sustainable policies aimed at reducing suffering. It took far too long (2002) for government to accept that the Trust would benefit from (indeed, needed) regular annual funding. Thus a reserve had to be built up. The Department of Health then used the existence of the reserve to justify withholding additional sums which were otherwise appropriate to meet the continuing needs of beneficiaries, at a time when (again) there were uncertainties of funding continuing.

  1. The Trust should not have been run as it was:

Furthermore:

In addition:

6.4 Government Response to HIV Infections through Blood or Tissue Transfer

This chapter describes the initial Government position that financial support for those infected with HIV should not be extended beyond people with haemophilia to people infected with HIV through blood or tissue transfer. It charts campaigning by some members of Parliament and the media to overcome this position.


Key Dates

November 1987 the Government announces a grant of £10 million to the Haemophilia Society to enable the Society to establish a special fund for people with haemophilia infected with HIV; does not include people infected through blood or tissue transfer.

July 1988 civil servants advise ministers against introducing a scheme for people infected with HIV through blood or tissue transfer.

December 1990 the Government agrees to settle HIV litigation for people with haemophilia; people infected through blood or tissue transfer are excluded.

February 1991 civil servants advise a line to take against payments for people infected through blood or tissue transfer.

April 1991 the Secretary of State agrees to “hold the line on these cases”.

May 1991 The Observer launches a campaign to “win compensation for the forgotten NHS victims of AIDS”.

December 1991 the Secretary of State writes to the Treasury proposing financial support for people infected through blood or tissue transfer.

February 1992 Government announces extension of financial support to people infected with HIV as a result of blood transfusion or tissue transfer.


People

Robin Cook MP advocated providing financial support to people infected with HIV through blood or tissue transfer

Strachan Heppell senior civil servant, Department of Health

John Marshall MP advocated providing financial support to people infected with HIV through blood or tissue transfer

David Mellor Chief Secretary to the Treasury

William Waldegrave Secretary of State for Health


Abbreviations

H(A) Sub-Committee on AIDS of the Cabinet Home and Social Affairs Committee


This chapter considers the Government’s response to the question of whether to make payments to individuals infected with HIV by blood transfusion or tissue transfer.[540]

It begins in late 1987, though much of the relevant evidence concerns the period from late 1990 to early 1992, when the Government decided to make such payments. The operation of the trust which ultimately resulted from this decision, the Eileen Trust, is discussed in the following chapter.

1987-1988: early consideration

On 10 November 1987, the Sub-Committee on AIDS of the Cabinet Home and Social Affairs Committee (abbreviated as “H(A)”) agreed to make £10 million available to people with haemophilia infected with HIV by blood products.[541] However, the Sub-Committee decided against including people infected by blood transfusion and transplants in this payment scheme. Its decision included several strands of reasoning that were to feature in discussions of this issue over subsequent years: in particular, attempts to distinguish people with haemophilia from others who had been infected by HIV, and an emphasis on the importance of ring-fencing payments to haemophilia patients.[542] It was explicitly recognised that certain other groups “had a very strong claim to be included in the scheme[543] but the Sub-Committee agreed that “the primary consideration should be that the scheme should be tightly ring-fenced.” It was decided that there should be further consideration, undertaken very quickly, by the Secretary of State or Health and Social Services (John Moore) in consultation with the Chief Secretary to the Treasury (John Major) as to whether, if the proposed scheme were to be extended to other groups, it could be ring-fenced to them alone, but that unless the Secretary of State and Chief Secretary were so satisfied, the scheme should be introduced, as proposed by John Moore, for people with haemophilia only.[544]

The precise extent of the further consideration which was undertaken is unclear. By 11 November the Secretary of State had decided not to extend the proposed arrangements to cover other groups.[545] Malcolm Harris, writing in June 1988, suggested that “Following the meeting of H(A) which discussed the haemophilia case in November, we gave thought to their view that non-haemophiliacs should be included provided that the ring fencing arrangements, which they regarded as ‘clearly vital’ were not weakened. It was our view at that time that the haemophilia ring-fence was not particularly robust and thus advised that it should not be weakened further by the inclusion of other groups.[546]

On 12 November 1987 the Secretary of State reported to the Cabinet that he had completed the consultations that H(A) had invited him to carry out with the Chief Secretary to the Treasury, and that it was proposed to announce the financial assistance for people with haemophilia the following week.[547]

On 16 November 1987, the Minister of State for Health, Tony Newton, announced the decision to make a £10 million ex gratia payment to enable the Haemophilia Society to establish a special trust to provide financial help to people with haemophilia infected with HIV and their families.[548] Transfusion recipients who had been infected with HIV were not included.

Limited further consideration was given to a scheme for transfusion patients the following year. In February 1988 it was noted that a number of MPs had written seeking special financial payments for those infected with HIV by blood transfusions in line with the ex gratia payments for people with haemophilia. The suggested line to take was that “After careful consideration” the Department of Health and Social Security (“DHSS”) concluded that the combination of circumstances applicable to those with haemophilia “does not apply to those who unfortunately have become infected with HIV through blood transfusion.[549]

On 16 May 1988 the Secretary of State met Robin Cook MP, who had been advocating some form of financial assistance for transfusion recipients, to discuss the issue: a background brief prepared for the Secretary of State recommended that he maintain the existing line to take.[550] Nevertheless, following this meeting, the Secretary of State asked officials to consider how financial help could be provided to recipients of HIV infected blood and organs.[551] A 25 July 1988 minute for the Minister of State for Health recorded that officials had worked up a scheme of financial help for blood transfusion and organ/tissue recipients with AIDS on the lines indicated by Ministers.[552] However, the author of the minute, Strachan Heppell, advised against introducing such a scheme, “although that may seem a harsh view to take”, for three main reasons: it could not be ring-fenced as the haemophilia scheme had been; reaching fair decisions would be “extremely difficult” (especially if extended to those who may have been infected overseas); and “the wider we extend help for those with HIV infection, the more we raise the general issue of compensation for NHS linked infection.[553]

That same day, 25 July 1988, John Moore ceased to be Secretary of State for Health. The DHSS was split into two separate departments: Kenneth Clarke took over as Secretary of State for Health, and John Moore became Secretary of State for Social Security. By 28 July 1988 the decision had been taken not to make any ex gratia payments to transfusion recipients infected with HIV.[554]

The focus within Government then shifted to the HIV haemophilia litigation and any active consideration of financial support for transfusion patients infected with HIV appears to have receded for the next 18 months or so.

HIV litigation settlement

On 2 November 1990, William Waldegrave (later Lord Waldegrave) was appointed Secretary of State for Health. Briefing material prepared for him soon afterwards highlighted the link between the HIV litigation and possible payments to transfusion recipients. It was suggested that, if liability against the Department of Health/NHS were established or implied, there would be “Immediate knock-on effects for those infected … with HIV through blood transfusion (up to 120 cases including transplants)”.[555]

By December 1990, and as discussed in more detail elsewhere in this Report, the HIV litigation had progressed towards settlement. On 11 December 1990, the Prime Minister announced that agreement to settle had been reached in principle.[556] In his written evidence to the Inquiry, Lord Waldegrave commented that, looking at the papers now, one effect of the December 1990 announcement was “to emphasise by contrast the case of those infected by blood transfusion.[557]

This observation is supported by an 18 December 1990 letter to William Waldegrave from a lawyer acting on behalf of infected transfusion patients in Scotland, suggesting that the “only adequate and reasonable solution” to their infection was a “settlement such as has been offered to the haemophiliacs who are unfortunately also infected.[558] Similarly, an 8 January 1991 letter from John Marshall MP drew attention to “the plight of the 200 or so NHS patients (other than haemophiliacs) who contracted Aids as a result of receiving infected blood” before commenting: “To argue that we are compensating haemophiliacs because their illness is hereditary but will not compensate others is bad morality, poor logic and bad politics.[559] Within the Department of Health, it was noted that “Pressure is mounting for something to be done for HIV infected blood transfusion recipients”.[560] Robin Cook, writing to the Secretary of State on 31 January 1991, expressed the view that the purported distinction was “wholly untenable … I could understand, although not accept, this distinction, if the group to whom liability was being denied was the larger group with a larger cost, but the continued refusal to accept responsibility in this case is all the more difficult to comprehend as the numbers involved are so few and the cost of settlement would be so much less than the amount already provided for the greater number of haemophiliacs.[561]

Early 1991: refusal to extend payments

Following John Marshall’s letter, Department of Health officials prepared a background briefing and line to take for the Secretary of State. This set out the number of reported cases of HIV infection by transfusion and described the reasoning for distinguishing between haemophilia and transfusion patients in the following way:

  1. “The payments to haemophiliacs have recognised their wholly exceptional circumstances, whereby they were doubly disadvantaged by their pre-existing haemophilia as well as the HIV infection.
  2. We have accepted from the outset the need to ‘ring fence’ haemophiliacs because of their special circumstances. People infected with HIV as a result of blood transfusion/transplants are no different in principle from other groups of patients harmed as an unfortunate side result of NHS treatment. For example, there are cases which fall into the category of those who acquired HIV through skin grafts or organ transplants.
  3. Any special treatment for HIV infected blood transfusion recipients would repercuss by exciting expectations which could be difficult to contain in other groups of patients harmed as an unintended by product of NHS treatment. The direct cost of conceding for UK transfused cases with AIDS would be around £1 million and if all HIV cases are included the cost could be around £5 million. The more exceptions that are made, the closer we move to ‘no fault compensation’ without discussing the rationale, and the greater the number of claims that would result from those who feel that they too are deserving.” [562]

The proposed “line to take” was: “Payments for haemophiliacs recognised their unique combination of circumstances. These do not apply to blood transfusion recipients.[563] This position was maintained publicly until 17 February 1992.

Negotiations over the terms of the HIV litigation settlement continued in the first few months of 1991. In evidence to the Inquiry, Lord Waldegrave suggested that there would have been very little prospect of widening the settlement to include transfusion patients.[564]

On 22 April 1991, as the negotiations neared their conclusion, the Secretary of State asked for a detailed note on the position of non-haemophilia patients who had been infected with HIV.[565] This was provided the following day, with an expanded “line to take”. The note argued strongly against expanding financial support to transfusion patients. It was said that people with haemophilia could be distinguished on the grounds that they were “doubly disadvantaged by the pre-existing haemophilia, which affected their employment, mortgage and insurance prospects, and by their HIV infection” and the “hereditary nature of haemophilia can mean that more than one member of the family might be affected.” The note further argued that “Any extension of compensation beyond haemophiliacs could result in the piecemeal introduction of general no fault compensation”. A covering note added that the Treasury “would strongly resist any further concession, and might well accuse us of bad faith in even considering it.[566]

At this stage, the Secretary of State accepted his officials’ advice. A response from his Private Office recorded his agreement “that we need to hold the line on these cases. He has added that we must emphasise the more complex history of what caused these tragic cases and say that the NHS cannot be pushed into taking general responsibility for cases like this.[567]

Meanwhile, in May 1991, a campaign was launched by The Observer to “win compensation for the forgotten NHS victims of AIDS”.[568] The Times reported that a group of patients had joined an action group, with a Merseyside solicitor involved in the HIV litigation, Graham Ross, commenting: “The government has compensated the haemophiliacs as an act of compassion. I cannot see why that well of compassion should suddenly run dry for transfusion patients whose tragedies are equally real.[569] The issue was taken up in Parliament by MPs “across the political spectrum. Nearly 100 have now signed an Early Day Motion calling on Health Secretary William Waldegrave to reverse his department’s ‘callous and illogical’ refusal to compensate the non-haemophiliac NHS victims.[570] The Observer commented that the delay in agreeing to provide payments to people with haemophilia had meant that many had died before they or their families received anything: “It will be deplorable if the same curmudgeonly and legalistic approach is adopted towards this very much smaller group. If, the newspaper added, ministers “wish to project the image of a caring National Health Service, they must face up to the consequences of past mistakes. No amount of money can erase the suffering of these NHS victims of AIDS. But it will be a disgrace if they are forced to appeal to the courts before they can secure justice.[571]

In written evidence to the Inquiry, Lord Waldegrave acknowledged that the Department knew that there were forceful arguments that transfusion patients should be treated in the same way as haemophiliacs. He added, however, that “having succeeded in winning the argument over settlement of that [ie the HIV] litigation, including gaining permission from the Treasury in the face of very considerable concern about setting a precedent for no fault compensation, there was little real alternative in practice other than, initially, to try to hold the line.[572]

The Government continued to give some consideration to the position of infected transfusion patients over subsequent months. For example, on 31 May 1991 the Secretary of State was provided with a note on the subject for discussions with colleagues.[573] This set out pros and cons of extending payments to transfusion patients. The advantages included that doing so would relieve “the political and media pressure at present on the Government”, would reduce the risk of “another round of embarrassing and costly litigation and criticism for ‘forcing’ people with a fatal infection to take this course”, and that the numbers and costs involved would be relatively small if the “concession” could be ring-fenced. The disadvantages focused on difficulties around maintaining a ring-fence and, if it could not be maintained, the resultant pressure to compensate other categories of patient (including people with haemophilia infected with hepatitis).[574] The note went on to outline possible options for a payment scheme, before concluding as follows:

“The ring-fence round the haemophiliacs is difficult to maintain. Finding another place to re-establish it is also difficult. If there is to be further movement then it might be possible to defend a ring-fence around all HIV cases infected in the UK by blood, organ and tissue donation undertaken as part of medical treatment. This further concession however would send the wrong signals to other groups already lining up to press their own case for compensation. Re-opening the no fault compensation issue would not resolve the immediate problem and could be unattractive on other grounds. It comes down to a question of where Ministers wish to take a stand against a claim for compensation.”[575]

A handwritten note from John Canavan on the minute of 31 May described the Secretary of State as “very twitchy … I think I’ll open a book on the date of the cave-in.[576]

However, as reflected in the Secretary of State’s answer to a parliamentary question, in mid 1991 the Government’s position remained that it would not extend the payments given to people with haemophilia to transfusion patients.[577]

Late 1991: change at the Department of Health

By November 1991, the Secretary of State’s view had changed.[578] He set out his position in a 2 December 1991 letter to the Chief Secretary to the Treasury, David Mellor. This noted that the Secretary of State and the Chief Secretary had discussed, at a recent Cabinet meeting, the “continuing campaign on behalf of non-haemophiliac patients infected by HIV in the course of treatment – blood transfusion, transplant or tissue transfer – in this country.” The letter suggested that, if the Government continued “to refuse any help there is a real prospect that the campaign will gather pace and become a damaging and running sore over the next few months.” It proposed that the Government should move to resolve the matter by “recognising the needs of these people and their families in the same way as we have recognised those of haemophiliacs.” This approach had an estimated cost of £12 million. The Secretary of State suggested that the Department pay a third of this amount, that the other Health Departments – ie those for Northern Ireland, Wales and Scotland – make a contribution in respect of cases arising in their countries and that the Treasury meet the balance from the Reserve. The letter was copied to the Ministers responsible for Northern Ireland, Wales and Scotland.[579]

Also on 2 December 1991, the most senior official at the Department of Health, the Permanent Secretary, wrote to the Secretary of State to support the misgivings about the proposed change of policy that had been expressed by Strachan Heppell. He commented that, “unless Government is prepared to draw a line and stick to it, it will end up with a de facto (very expensive) no-fault compensation system.” The Permanent Secretary added that the “ringfence around the haemophiliacs is bound to be attacked, but we are unlikely ever to find a better one if we abandon it … I advise long reflection before we move further in to no-fault compensation for medical accidents. Is this really the most pressing marginal case for the deployment of money from the health programme?[580]

This intervention led to the Secretary of State, on 5 December 1991, consulting his ministerial colleagues: Baroness Gloria Hooper, Stephen Dorrell and Virginia Bottomley (later Baroness Bottomley).[581] Baroness Hooper considered that the Department “should hold the line however difficult this may be.”[582] By contrast, Virginia Bottomley and Stephen Dorrell supported the Secretary of State’s position.[583]

While this debate took place, support for a change in the Government’s position was again voiced by a number of MPs.[584]

Treasury opposition

Meanwhile, Treasury officials advised the Chancellor and the Chief Secretary to refuse the Secretary of State’s proposal. A 3 December 1991 minute acknowledged that the line taken by the Department of Health on why people with haemophilia but not others were given financial support – that “they were doubly disadvantaged by an hereditary condition as well as acquiring HIV” – had “never been a convincing argument – anyone contracting HIV from infected blood is going to derive little comfort from not also being haemophiliac – and it has not gone down well in public. But we accept that it is difficult to come up with a better one.” Similarly, the minute advised that, at the time of the HIV litigation settlement, it was clear that “there is very little moral difference” between the case for people with haemophilia who had been infected and others, but it was “recognised that providing compensation to the second group would take a further step down the slippery slope towards no-fault compensation for medical (and possibly other) claims.[585]

Consistently with this advice, on 13 January 1992, the Chief Secretary, David Mellor, responded to the Secretary of State, refusing his request. He explained that he had “serious reservations about whether it would be possible realistically to ring fence any such compensation” and commented that, by “compensating those acquiring HIV from blood transfusion, we will be taking a further long stride towards no-fault compensation in general.[586]

The Treasury’s opposition was significant. Even if the Department of Health wished to create a payment scheme without additional funds from the Reserve, it could not do so without approval from the Treasury.[587]

In oral evidence to the Inquiry, David Mellor suggested that there was never any likelihood that payments would not be extended to transfusion patients, and no merit in the distinction between people with haemophilia and transfusion recipients infected with HIV, but that “there needed to be a bit of grief along the way … people can’t have easy wins. If you are the Treasury you have to lose in a tough minded way”.[588]

Notwithstanding the Treasury’s response, Department of Health officials and the Secretary of State continued to consider the issues, including how the money for a payment scheme could be found.[589] On 27 January 1992, the Secretary of State responded to the Chief Secretary, disputing the link the latter had made between an extension of payments to transfusion payments and a separate issue concerning overpayments to doctors and dentists.[590]

Treasury officials subsequently provided the Chief Secretary with three options for his response to the Secretary of State, recommending that he maintain his existing stance. Two other options outlined in the minute, which were not recommended, were to provide the extra £6 million sought by the Department of Health, or to refuse access to the Reserve but allow a payment scheme to be established from the Department’s own resources.[591]

While this debate took place, the Department of Health’s public position remained that financial support for those infected with HIV would not be extended beyond people with haemophilia.[592]

February 1992: involvement of the Prime Minister

In early February 1992, a significant step towards the extension of financial support to transfusion patients took place. On 3 February, ahead of a meeting with John Marshall, the Prime Minister, John Major, was provided with a Department of Health briefing.[593] It was clear in its support for the existing ring-fence round people with haemophilia. However, the Prime Minister also received a cover note on the issue from William Chapman, his Private Secretary. Having noted that the Secretary of State had “still not given up hope of extending help” but was “meeting Treasury resistance”, William Chapman commented:

William Chapman added that the “Government’s position seems increasingly untenable.[594]

In addition, the Treasury’s position had by this time begun to change. A 5 February 1992 minute recorded the Chief Secretary’s decision that he “would be willing to agree to Mr Waldegrave proceeding with compensation if it was agreed that no further groups would be given similar treatment; and if Mr Waldegrave found all the necessary funds.[595]

On 7 February 1992, following the Prime Minister’s meeting with John Marshall and other MPs, the Secretary of State wrote to him to make the case for extending financial support to transfusion patients infected with HIV. In doing so, he acknowledged that the Government had to “recognise the risk of weakening our general opposition to no fault compensation” and suggested that it should make plain that it was responding to “very special circumstances”. He also addressed a proposed division of funding between the Department and Treasury.[596] Lord Waldegrave told the Inquiry that he involved the Prime Minister as “Without his support, I could not have introduced the scheme extension.[597]

On the same day, the Chief Secretary wrote to the Secretary of State to communicate the Treasury’s change of position. While reiterating his concern about ring-fencing and moving towards no-fault compensation, he explained that he was “willing to withdraw my objection provided you are able to give a firm assurance that you and your department will be prepared to draw the line at this group and to face up to requests from other groups.” He further asked that the Department of Health find the necessary funding without any contribution from the Treasury Reserve.[598]

Further correspondence between the Prime Minister’s office, the Department of Health and the Treasury continued on the details and timing of the Government’s announcement that it would be extending financial payments.[599] On 12 February 1992 the Secretary of State responded to the Chief Secretary, referring to the difficulty in drawing “watertight borderlines” in this area and commenting that “a borderline covering all those infected with HIV by NHS treatment in the UK involving whole blood/blood products and organ transplants would be more defensible.” As for funding, the Secretary of State noted that he would have to review his overall programme to seek to find the necessary funding within the Department.[600] As foreshadowed in this correspondence, the payment scheme was ultimately funded without a contribution from the Treasury Reserve.

Announcement of the change

The change in the Government’s position became public on 17 February 1992, when it was announced that financial support for people with haemophilia infected with HIV would be extended to those infected as a result of blood transfusion or tissue transfer in the UK. The scheme would include spouses, partners and children to whom infection may have been passed on. The announcement explained that the circumstances of each infected person would need to be considered individually to establish that treatment in the UK was the source of their infection and that a small expert panel was being set up to consider cases where necessary. It was noted that “Further detailed work needs to be done on the machinery for handling individual claims for the payments; but payments will be made as soon as possible.” The estimated cost was £12 million but the Department of Health could not be certain about this as the number of valid claims was not known.[601]

Three days later, on 20 February 1992, officials sought the Secretary of State’s agreement to the outline of a payment scheme. The submission explained that many aspects of the proposed scheme were modelled on the equivalent for people with haemophilia infected with HIV but that there would be “particular problems over the validation of claims from blood and tissue recipients and we shall need an expert panel to sift the available evidence and make decisions which will be difficult in some cases.” This was said to mean that “the process of making payments is likely to be more protracted than for most haemophiliacs.[602]

As for the scope of the scheme, it was proposed that it would cover those people who had been infected with HIV in the course of receiving medical treatment; as well as recipients of infected blood transfusion and tissue transfer, this would include people without bleeding disorders infected with HIV through treatment with fractionated blood products. The submission explained that applying a cut-off date after the introduction of HIV screening in October 1985 would be difficult because infection could still be transmitted from a donor who was in the “window period” at the time of testing. Instead, “claims of infection from blood or tissue after 1985 would have to be examined particularly closely in view of the safeguards then in place.[603]

As for validating claims, where the status of the donation could not be firmly established, it was proposed that the case be considered on the balance of probabilities: “this would include the timing of the transfusion/tissue transplant; clinical history of the case and limited consideration of lifestyle, eg is there a record of treatment for drug abuse; questions could be asked about associations with high risk countries.[604]

The submission also discussed access to “special needs payments”, as had been created for people with haemophilia through the Macfarlane Trust, and which was said to be necessary in order “to make a clean break with the problem of the blood transfusion/tissue cases”. This could be done either by extending the remit of the Macfarlane Trust[605] or by setting up a new charitable trust. Either way, it was “likely that some money, say £½ M, would have to be found to endow a new trust or to avoid the appearance of diluting the haemophiliac fund”.[606]

As well as agreeing to the outline of the scheme, the Secretary of State was asked to confirm that he was content for officials to begin discussions on it with the various interested parties.[607]

The Secretary of State confirmed his agreement to the approach proposed by officials on 2 March 1992.[608]

Commentary

A number of factors contributed to the Government’s eventual change of position on payments to individuals infected with HIV by blood or tissue transfer. In written evidence to the Inquiry, Lord Waldegrave commented that media coverage helped the Government to see that its policy of distinguishing transfusion patients from people with haemophilia infected with HIV was failing to convince.[609] Similarly, he stated that the “combined increased pressure in Parliament (questions, motions and debates), from the media campaign and from allied correspondence, led me to judge that the government’s position was not sustainable.[610]

Two features of this decision-making process stand out. First, the decision-making process took too long. Second, despite some politicians being responsive to the claims that people who had been infected with HIV by their treatment should be given financial support, civil servants remained determined in their opposition to this.

As to the first, when in November 1987 it had been decided to provide ex gratia support for people with haemophilia who had been infected with HIV, a Cabinet Sub-Committee concluded that transfusion recipients had a very strong claim for inclusion in any payment scheme – although any scheme should be ring-fenced.[611] It might have been thought that an obvious ring-fence could have been infection by treatment on the NHS with the AIDS-causing virus. Ultimately, this was the ring-fence for ten years before Hepatitis C infections were also recognised as demanding support.

From at least December 1990 and certainly by January 1991, the weakness of the distinction the Government sought to make between people with haemophilia and people infected by blood or tissue transfer had been made clear by campaigners.

Lord Waldegrave’s evidence to the Inquiry was that it took until February 1992 for the Government to change its position because “it took that length of time to overcome the arguments of precedent, which were real.[612]

Similarly, in his written evidence, Sir John Major commented that the “Government is sometimes like a great tanker and takes time to turn around; an example of this is with regard to payments to non-haemophilia patients who contracted HIV through a blood transfusion.” He added that the Government “does have to go through arguments on precedent, need and affordability before alighting on the right policy. Treasury caution on expenditure cannot be lightly set aside because their responsibility to control overall expenditure is crucial to both the economy and the taxpayer.[613]

In oral evidence, Sir John Major added that “the concern about no-fault compensation and the direction in which that could go was a genuine worry with the Treasury, at a time when other budgets were being chopped because of the inflationary spiral that we were seeing in the early ’90s, and more expenditure would mean more reductions elsewhere.” He explained that he would not “argue with the argument that it could have been done sooner. I can only say in retrospect you could often see things a little more clearly than you can when you have a dozen other things in front of you at the same time and perhaps that was true of everyone involved.[614]

I accept the general point that policies which require significant expenditure may need to be developed incrementally rather than all at once. There is also little doubt that fears about a precedent being set were real, though as already pointed out once a decision had been taken to establish the Macfarlane Trust the obvious ring-fence was around the nature of the disease transmitted by NHS treatment rather than the condition which caused people to seek treatment in the first place.

However, while these considerations were no doubt real, they do not justify the lengthy period it took for the Government to change its position. Sir John Major was right to accept that he would not argue against a conclusion that this could have been done sooner.[615] David Mellor’s suggestion to the Inquiry in oral evidence that there never was any likelihood that payments would not be extended to transfusion patients, but (in effect) that they had to fight for it[616] underscores this point as to delay, for the policy he described amounted to a deliberate refusal to pay earlier than could have been the case so that others, with different cases to propound, might be more easily fended off. In essence – “we are going to pay; you should be paid; but not just now – later.”

The significance of this for present purposes is that context was crucial: patients had been infected several years earlier with a life-altering virus, with consequences as serious as they were well-known. Treatment possibilities were extremely limited. Patients and their families did not have time on their side. The Government should have recognised that its position was logically unsustainable (as it might be thought David Mellor indicated he realised) and should have changed course significantly earlier than it did. If any group was to be kept waiting, it should not have been this one.

As to the second feature, briefing notes from the Department of Health demonstrate repeated concern about the risk that payment to the (relatively small) group of those who had suffered HIV as a result of transfusion might set a precedent for no-fault compensation; John Canavan spoke of a change of mind as being a “cave-in”.[617] Strachan Heppell expressed misgivings about Lord Waldegrave’s change of policy.[618] The Permanent Secretary argued that “we are unlikely even to find a better [ring-fence] if we abandon [the one around haemophilia]”[619] Treasury officials took a similar course – though describing the then current justification for limiting financial support for people who had suffered HIV infection from treatment under the NHS to people with haemophilia as never having been convincing, they urged that there should be no extension.[620] There is a strong sense that departmental officials were keen throughout to advise their ministers of the risks, rather than the justice, of a change in policy.

Whilst the Government deliberated, those infected with AIDS through transfusion were suffering and dying. Two cases will suffice to reinforce why it was so important for a decision to be taken sooner than it was. The first is described in the supplementary report of the Inquiry’s intermediaries:

“One family described their mother’s deep distress that no financial support was available to her although she had been infected with HIV through a transfusion. At that time, financial support was being offered only to people with haemophilia. She was understandably embittered about this as she desperately wished to give her children some financial foundation for their future. She had no savings and was unable to work.”

She died without receiving any such support.[621] The second case involves a young woman who received a two-unit blood transfusion following the birth of her first child in 1982 and was infected with HIV as a result. Her second child was infected in utero.[622] She died in 1986 from AIDS, aged just 21 years old, and her child died at the age of three. Her husband was also infected with HIV. He told The Observer in May 1991 that he only had a limited amount of time left. “The Department of Health should give financial help to those who need it so they don’t have to go to court and waste the rest of their lives trying to get a few thousand pounds. People shouldn’t have to go cap in hand trying to prove they are entitled to compensation. Everybody knows we are morally entitled to it.[623]By August 1994 he too was dead. Only the first child was left alive, having lost his mother, sister and father as the consequence of one transfusion.

6.5 Eileen Trust

The Eileen Trust was established to provide funds to people who were infected with HIV as a result of receiving infected blood or tissue. This chapter compares and contrasts the Eileen Trust with the much larger Macfarlane Trust and considers the relations between trustees and beneficiaries and the funding of the Trust by the Department of Health.


Key Dates

29 March 1993 the Trust formally begins with initial capital funding of £500,000.

August 1993 the Trust pays regpay to registered beneficiaries.

January 1994 the Trust increases the amount of regpay to registered beneficiaries.

March 1994 a health-related supplement is included in regpay.

1998 widows and widowers with children of qualifying persons start to receive regpay.

1999 first handbook for registrants produced.

23 May 2007 Peter Stevens provides evidence to the Archer Inquiry that successive governments have failed to provide adequate funding to the Trust.

March 2008 Trustees note “intense disappointment and dissatisfaction” with the “substantial reduction in their means of meeting the objects of the Trust”.

May 2009 the Government announces that it will increase funding in response to Lord Archer’s report.

1 November 2017 the Trust ceases functioning and decides to distribute the remaining funds between registered beneficiaries.


People

Peter Stevens chair, Eileen Trust (2000 - 2018)

Reverend Alan Tanner chair, Eileen Trust (1993 - 2000)


Abbreviations

Regpay regular payments made by the Trust to beneficiaries


People who became infected with HIV as a result of receiving infected blood or tissue but who did not have haemophilia were beyond the scope of the Macfarlane Trust. Although they suffered from the same infections, with similar consequential effects, as did people with haemophilia, the Government did not recognise them as meriting ex gratia support. It changed its mind in response to media pressure, and pressure from politicians.[624] Its response was to establish a charity with initial capital funding of £500,000.

On 10 April 1992 the Secretary of State for Scotland established a scheme of payments for those “infected with HIV through blood or tissue transfer”. The scheme for England, Wales and Northern Ireland was established on 24 April 1992, a fortnight later. The schemes provided for the payment of fixed sums to people infected and people indirectly infected[625] in different categories, depending on whether they were adult or younger, were married, and whether they had dependent children.[626]

The Eileen Trust formally began on 29 March 1993. The object of the Trust, as established by a deed of that date, was “to relieve those qualifying persons who are in need of assistance or the needy dependants of qualifying persons and the needy dependants of qualifying persons who have died.[627]Qualifying person” was defined as “a person who has received or is entitled to receive a payment … under the scheme of payments for those infected with HIV through NHS blood or tissue transfer … other than an infected intimate as defined in that [either] scheme.[628]

It was envisaged initially that there would be five trustees. Three trustees were appointed by the deed of March 1993: Reverend Alan Tanner, Alan Palmer and Dr Elizabeth Mayne. At the first meeting of the trustees, Reverend Tanner was confirmed as chair. The turnover of trustees was low.

The administration was in the hands of a secretary, a role taken by the chief executive of the Macfarlane Trust. That position changed after Martin Harvey was succeeded by Susan Daniels, who had worked for beneficiaries of the Eileen Trust[629] as an independent financial adviser and as a case worker. She had been recruited to that role by Peter Stevens, who succeeded Reverend Tanner as chair. The Eileen Trust had a social worker and benefits advisor. These staff were (broadly) shared with the Macfarlane Trust for ease of administration, and to take advantage of established experience.

The numbers were small by comparison with the Macfarlane Trust. The total number of registrants remained in the region of 20 to 30 at any one time, though it varied from year to year. New registrants emerged from time to time; but the number was rather lower than the number the Government had supposed would be likely to make a claim on the Trust as having been infected with HIV by blood transfusion or tissue transfer.[630] This may in part have reflected the fact that some had already died before the scheme was even established.

Although the Eileen Trust was administered by the same staff who administered the Macfarlane Trust, its board made the decisions which it thought best for the Eileen Trust.[631] It paid regpay[632] (from August 1993 onward) with increases in January 1994 and a health-related supplement from March 1994. Widows and widowers with children received regpay by at least 1998.[633] Indeed, the board preferred beneficiaries to have regular income from the Trust to avoid the necessity to apply for single grants, and to afford them greater personal control over their expenditure.[634]

Following a Macfarlane Trust “Away Day” in 2006 after which it was reported to the Eileen Trust board by Peter Stevens that the advice had been that “financial need is an absolute prerequisite for any disbursement by a charity”,[635] the Eileen Trust adopted receipt of income support and the earning of a minimum wage as reasonable indicators of financial need. Following increased funding provided by the Government in response to Lord Archer’s report,[636] the board decided to adopt a minimum level of income which registrants should have, determined by taking into account whether they were single, lived with a partner and had children.[637]

Single grants were applied for and provided on a case-by-case basis, on the basis of either financial or health need.[638] No record of income or expenditure was needed in order to make an application. A handbook for registrants was not produced until 1999.[639] Regular contact with office staff and case workers allowed registrants of the Eileen Trust to know what they could apply for and there were newsletters which Sue Phipps told the Inquiry she had been involved in making less dense and more accessible.[640]

Commentary

The Eileen Trust did not suffer to the same extent from the difficulties which beset registrants of the Macfarlane Trust. There was a similar lack of information given to beneficiaries and a similar degree of subjectivity in the assessment of individual grant applications, but the relations between the trustees and the beneficiaries did not give rise to similar problems.

A principal problem was identifying those who might benefit, one which was far less of a problem in the case of the Macfarlane Trust. The Eileen Trust did not have the staff or resources to conduct a publicity campaign to advertise its existence. Moreover, to do so might be to expose applicants for membership to the risk that it might become known that they were infected with HIV. Such had been the stigma attaching to those infected with HIV or living with AIDS that this would have created reluctance to apply. Perhaps indicative of this, as at 31 March 1994, 57 people were known to have qualified under the schemes for lump sum payments at the outset, but of those only 24 (less than half) had actually made contact to register with the Trust.[641] The trustees arranged that the Department of Health should contact potential beneficiaries who had not yet registered. The Trust wrote to “medical and social work staff at hospitals and to contacts in voluntary organisations connected with HIV giving information about the Trust and inviting referrals”. The staff took action where they could identify someone who might be a registrant who had not yet applied. Yet the numbers of those who claimed remained low.[642]

Unlike the Macfarlane Trust, the board did not consider that support from the Eileen Trust should necessarily be secondary to that from state benefits.[643] A further contrast is that in 2017, when the Eileen Trust was to cease functioning as the four national schemes took over, its trustees decided that until the handover on 1 November 2017 grants would continue to be made as usual, but that any funds remaining after that would be distributed between the registrants.[644]

A second problem, arising from the way in which the Trust was set up initially, resembled that which so beset the Macfarlane Trust: the problem of inadequate funding.[645] But in the case of the Eileen Trust it was subtly different. The numbers of beneficiaries of the Macfarlane Trust who had been directly infected reduced over time; by contrast, the numbers of beneficiaries of the Eileen Trust increased as more individuals became aware of its existence.

There was very little problem with knowledge of the Macfarlane Trust scheme for those entitled, because of the communities of people with haemophilia which had naturally grown up around their treatment centres, the membership of many in the Haemophilia Society, and the familiarity of treating clinicians with the existence of the Trust gained from the numbers of their patients who would be eligible. By contrast, people infected with HIV by transfusion had no such community of fellow sufferers, nor clinicians to whom the existence of the Trust was familiar. Their comparative isolation was no doubt exacerbated by knowledge of the stigma which HIV sufferers attracted, and this may have played a part in an individual being reluctant to come forward to seek a form of recognition as someone infected with that virus.

Though numerically the increases were small in comparative terms,[646] proportionally to the total they were significant. They did however hold in common with beneficiaries of the Macfarlane Trust the increasing needs caused by the infection as they grew older. Thus the disbursements made by the Eileen Trust increased.[647] Yet as Peter Stevens recorded in his evidence to the Archer Inquiry: “the DoH have shown no understanding of, or willingness to increase ET’s funding for, increases in the number of ET [Eileen Trust] registrants.[648] He finished his written evidence by saying:

“Successive Governments have chosen not to provide levels of true compensation that would match their responsibility; they have instead opted to provide ongoing support through ET whose Board of Trustees are charged with the duty to relieve the needs of its beneficiaries. They cannot perform that duty unless adequate funding is provided.

The Government must recognise both the fundamental change brought about by the long-term survival of victims and their families, and the fact that the number of ET registrants is growing and is likely to continue to grow. A commitment to substantially increased funding for the Trust and to substantially enhanced capital payments for its registrants is not just essential but also morally irrefutable.” [649]

The context was a failing of government not even to provide a cost of living increase in the amounts given to the Eileen Trust, let alone provide the same per capita amount for each new registrant as had been given to those who were already registrants, so that each had the same average amount devoted to their support should they need it.[650]

The approach taken by successive governments was of the same kind as that taken when first funding the Macfarlane Trust: it was one which did not reflect in any meaningful way on the individual needs of any of those beneficiaries it was meant to support. It was instead an arbitrary sum, not linked directly to any true assessment of need.[651]

One of the principal reasons for the greater satisfaction which, broadly, registrants of the Eileen Trust felt when compared with beneficiaries of the Macfarlane Trust was that it dealt with a smaller number of people. An alternative way of expressing this is that the ratio of staff, trustees and caseworkers per head was higher, facilitating a more personal approach for each registrant and a more relaxed approach for each trustee.[652]

The registrants had also not been brought together in small local groups or a national organisation before becoming involved with the Eileen Trust (as Macfarlane Trust beneficiaries had by their common experiences of haemophilia). Nor was there an established society, such as the Haemophilia Society, to which many had previously belonged.

The fact that the operation of the Eileen Trust gave rise to fewer difficulties than the other Alliance House Organisations should not, however, obscure the fact that the ex gratia payments which it was able to make still fell far short of providing meaningful compensation to those infected with HIV through transfusion.

Richard Titheridge whose late wife, Patricia, was infected says “The Eileen Trust was essentially a charity … and I’d rather not have charity, it doesn’t sit well with me. If they had originally paid proper compensation … it would have saved money and dealt with the problem properly.[653]

Another man, infected after his mother was given a blood transfusion during her pregnancy with him, says: “I was very disappointed with the level of financial support I received from the Eileen Trust and I would liken it to ‘having pennies thrown at me’. I remember giving up trying to obtain even £5 towards my travel to hospital due to the fact that I was made to feel as if I was a criminal who was begging for money … Proper compensation is both just and due … Our infections have destroyed chances for us in life that others simply take for granted”.[654]

6.6 Government Response to Hepatitis C Infections

This chapter details the Government’s reluctance over a number of years to provide financial support to those infected with Hepatitis C through NHS treatment. It charts the reasoning which underpinned this reluctance and how pressure from campaigners and MPs helped overcome it. It considers too the significance of events in Scotland and the role those events played in bringing about a change of position in 2003.


Key Dates

17 February 1992 Government announcement of financial support for people infected with HIV through transfusions does not extend to Hepatitis C infections.

December 1994 civil servants within the Department of Health warn that Hepatitis C has moved from being “a problem on the horizon to a highly political and volatile policy issue”.

March 1995 the Haemophilia Society launches its campaign for financial help for those infected with Hepatitis C; Gerald Malone agrees to consider the position of those suffering from the worst complications of Hepatitis C.

June 1995 Ministers agree to maintain the status quo.

December 1995 John Horam expresses willingness to consider proposals from John Marshall MP.

October 1996 Department of Health refuses to make any form of payment to those infected with Hepatitis C.

July 1998 Secretary of State for Health Frank Dobson decides not to set up payment scheme for Hepatitis C.

2001 Manor House Group, Haemophilia Action UK and Haemophilia Society intensify campaigning.

October 2001 Scottish Parliament’s Health and Community Care Committee calls on the Scottish Executive to provide financial support to all infected with Hepatitis C as a result of NHS treatment in Scotland.

September 2002 Expert group under Lord Ross recommends payment of compensation for people infected with Hepatitis C through NHS treatment in Scotland.

November 2002 Alan Milburn tells Malcolm Chisholm that it would be a “grave mistake” and “slippery slope” to offer support for Hepatitis C.

29 August 2003 John Reid announces ex-gratia payments: equivalent announcements made in Scotland, Wales and Northern Ireland.


People

Virginia Bottomley Secretary of State for Health (1992 - 1995)

Malcolm Chisholm Minister for Health and Community Care, Scotland (2001 - 2003)

Frank Dobson Secretary of State for Health (1997 - 1999)

John Horam Parliamentary Under-Secretary of State for Health (1995 - 1997)

Gerald Malone Minister of State for Health (1994 - 1997)

Alan Milburn Secretary of State for Health (1999 - 2003)

Dr John Reid Secretary of State for Health (2003 - 2005)

Tom Sackville Parliamentary Under-Secretary of State for Health (1992 - 1995)


The early 1990s

When, in 1992, the Government (with some reluctance) agreed to make ex gratia payments to transfusion and tissue recipients infected with HIV, it did so on the basis that the line would be drawn at this group and that further groups would not receive similar treatment.

For over a decade it maintained that line, refusing to provide any form of financial assistance or ex gratia payment to those infected with Hepatitis C through blood or blood products.

In the early 1990s parliamentarians raised the issue on behalf of constituents, but were met with repeated firm refusals.

Tom Sackville was the Parliamentary Under-Secretary of State for Health between April 1992 and November 1995. His responsibilities included “blood”.[655] His “overall perception” was that “key decisions had been taken by my predecessors, and would continue to be taken by my ministerial superiors[656] and the top officials in the Department; in the case of authorising new expenditure, by the Treasury or even Cabinet.[657] He “inherited” a clear and established policy that any claims for compensation should be pursued through the courts.[658] When questions were raised by MPs on behalf of constituents or in Parliament, he set out the Government’s position – namely that there were no plans to extend the HIV payment scheme to those infected with Hepatitis C – in his replies.[659]

On 18 January 1994 a minute was provided by Dr Andrzej Rejman and John Canavan to Tom Sackville and to Dr Jeremy Metters (Deputy Chief Medical Officer “DCMO”), which noted that “it is always open to Ministers to make ex gratia or other payments where the special circumstances warrant it”.[660] Arguments for and against special ex gratia payment arrangements were outlined and ministers’ views were sought on whether the principle of ex gratia payments should be further considered. Following a meeting with Dr Metters, Dr Rejman and John Canavan, the Parliamentary Under-Secretary of State “did not approve the principle of ex-gratia payments, noting the arguments against such a special arrangement set out in the 18 January 1994 paper.[661]

A few months later, in June 1994, correspondence was received from David Porter MP asking whether there was any prospect of the Department of Health reconsidering its decision not to offer one-off settlement payments to Hepatitis C sufferers to match the payments made to those infected with HIV. Noting that this was “A tricky one: if HIV, why not Hepatitus [sic]”, Tom Sackville asked for advice and a line to take.[662] In response he was advised that the Department’s concern was to ring-fence payments to those infected with HIV: “Each time a concession is made it becomes more difficult to establish a credible ring fence to prevent further movement towards a general no fault scheme for medical accidents.” The justification for making “special provision”in the first place had been the double disadvantage of HIV and haemophilia; this was extended to those infected with HIV through transfusion because “they too were a very special case.”The line to take provided to him was “no plans to extend the settlement scheme for haemophilia patients with HIV to those who may have been infected with hepatitis.[663]

In November 1994 The Independent newspaper reported that the Haemophilia Society was considering seeking redress from the Department of Health for people infected with Hepatitis C;[664] the article also reported that another 3,000 adults and children who received blood transfusions “may also have been infected … but are unaware of their condition.[665]A background note and line to take maintained the Government’s position. The line to take asserted that “patients who may have been infected with hepatitis C … will have received the best treatment available in the light of the medical knowledge at the time.[666]

On 25 November 1994 the Permanent Secretary at the Department of Health, Graham Hart, called a meeting to consider the current policy that the Government would not be making payments to people with haemophilia infected with Hepatitis C. There was discussion about how this line compared with the scheme for those infected with HIV, the line being taken in relation to those who contracted CJD through human growth hormone, and the scheme for people suffering from vaccine damage. It was agreed to request from officials a reasoned argument as to why the Department of Health regarded the case of those infected with Hepatitis C differently from those infected with HIV in a similar manner, and to pursue a “positive strategy in respect of haemophiliacs and others who might have been infected with Hepatitis C.[667]

In response to this request, on 9 December 1994 Roger Scofield (the head of the Department of Health’s Corporate Affairs Operational Policy Unit) sent an update to senior officials (copied to the private offices of the Chief Medical Officer and the Permanent Secretary) to warn that there had been “increased interest” in Hepatitis C and that “we can expect the campaign for compensation for those infected through NHS treatment to be stepped up over the next few months.” Hepatitis C had, he said, moved from being “a problem on the horizon to a highly political and volatile policy issue”. There was increased media interest (a Panorama programme was due to be screened in January), a campaign for government action, “a stream of PQs, EDMs and PO cases”.[668] The pressure was “building up.[669]

Referring to the Permanent Secretary’s meeting on 25 November 1994, the minute recorded that “On the basis of the experience of HIV it was important to think ahead how this campaign might develop and to decide in advance what positive action might be taken and to develop a robust and defensible line for Ministers.[670] As for the proposal for a “positive strategy in respect of haemophiliacs and others who might have been infected with Hep C”,[671] what was contemplated by officials was a package of initiatives that the Department of Health could take “short of an ex gratia payment scheme.” In the meantime ministers had been advised to take the line that there were no plans to make payments.[672]

This was followed by a submission to the Parliamentary Under-Secretary of State for Health on 22 December 1994. The submission set out the Department’s understanding that about 3,000 people with bleeding disorders and a further 3,000 who had transfusions before September 1991 were believed to have been infected with Hepatitis C as a result of NHS treatment. The principal focus of the submission was whether a lookback exercise should be undertaken, but it was also explained that it had been known for at least five years that some people would have been infected through NHS treatment and that the Department had “expected at any time a campaign to be mounted along the lines of that for HIV”.[673] Notably the submission recorded that counsel’s advice had not yet been sought on whether any case existed for negligence: rather “Officials have taken the line throughout that everything has been done that could have been and that they acted on the advice of the Advisory Committee on the Virological Safety of Blood … which was set up specifically in order to provide Ministers with advice on blood safety.[674]

In January 1995 a reply to an MP’s query about the possibility of compensation reiterated that the Government had never accepted the case for no fault compensation “for medical accidents.[675]A briefing note for a parliamentary written answer to be given on 30 January by Baroness Julia Cumberlege, the Parliamentary Under-Secretary of State for Health in the House of Lords, confirmed further that the Government was concerned by the potential costs of a Hepatitis C payment scheme.[676]

An email from Roger Scofield on 8 February 1995 to Dr Rejman and others, attaching a draft paper which attempted to sketch out a payment scheme for Hepatitis C “on a contingency basis”, observed that “Ministers have clearly got the wind up and don’t feel that we have a good defence.” It was acknowledged that “the Government might have to reconsider its position if determined cross party support were to emerge, especially if this was fuelled by a major Press campaign.[677] On 10 February he wrote to the Permanent Secretary, noting that ministers had “publicly stated that they are against making any payments to those infected but are concerned that the arguments we have given them for defending such a policy are unconvincing.[678]An official within the Department of Health’s finance division minuted the Permanent Secretary’s Private Office in response to Roger Scofield’s submission, stating that past experience was that obtaining Treasury agreement was not an easy matter and was somewhat time consuming.[679]

On 6 March 1995 the Permanent Secretary held a meeting with officials to discuss whether it would be appropriate to prepare options for some kind of payment scheme for those infected with Hepatitis C as a result of NHS treatment. The note of the meeting records that there was considerable political pressure against the current line. The conclusion was that there were three options “worth considering as possibilities”: maintain the status quo, set up a Hepatitis C payment scheme along the lines of Roger Scofield’s submission, or set up a more general scheme, possibly for those infected with diseases through blood and blood products, or through materials of human origin.[680]

In practice the status quo was maintained for the next eight years.

The Haemophilia Society’s campaign

On 14 March 1995 the Haemophilia Society launched its campaign for financial help for those infected with Hepatitis C. Reporting that over 40 people with haemophilia had died, a statement from the Reverend Tanner explained that:

“Over 3,000 people with haemophilia have been infected with this potentially life-threatening virus through treatment with clotting factor concentrates before 1986 … People with haemophilia were infected with the hepatitis C virus through contaminated blood products … Many were not told that there was a risk of hepatitis when they were given the treatment. They were infected in exactly the same way as over 1,200 people with haemophilia contracted the HIV virus – through treatment with contaminated blood products. Yet while those infected with HIV receive financial help from the government those with HCV receive nothing … The government have said that they do not intend to provide financial help for people infected with hepatitis C. I would ask the government how many more should die before they decide that HCV is an immediate threat to people with haemophilia … parliamentarians are taking the subject seriously. I would like the government to take it seriously as well and would make the plea for them to accept their moral responsibility and act swiftly and decisively to provide help for people with haemophilia infected with this dreadful disease.”[681]

On 30 March 1995 John Marshall MP, who had been instrumental in the efforts to obtain assistance for transfusion recipients infected with HIV, and who had been raising the matter in Parliament, met the Minister of State for Health, Gerald Malone, to discuss this question. This intervention plainly had some impact upon the Minister, because he agreed that the Department of Health should give very careful consideration to whether those suffering from the worst complications of Hepatitis C might be granted ex gratia payments.[682]

This willingness on the part of the Minister of State simply to consider John Marshall’s proposal gave rise to consternation in the Department.

Roger Scofield wrote to colleagues the same day as follows:

“You will wish to see that [the Minister of Health] has come out in favour of making payments to haemophiliacs and others infected by HCV. He has yet to convince his Ministerial colleagues. I understand that Dr Metters has advised Perm Sec to go for a meeting with Minister rather tahn [sic] try and cover it in the margins of [the Top of the Office meeting]. This might mean a meeting next week rather than this. Either way I shall move swiftly to get papers round for comment.”[683]

The Secretary of State, Virigina Bottomley, in her oral evidence to the Inquiry described how, in light of the report on Gerald Malone’s meeting with John Marshall, “alarm bells started to ring. Mr Sackville, the responsible minister, although junior minister, evidently thought ‘This is going to end in tears’, and the Permanent Secretary ... sort of canters over the horizon to say ‘I would urge great caution’, or, you know, ‘You’ll never find a more comfortable ringfence’.”She described Gerald Malone as having “overspoken”and having “got a bit carried away.[684]

In early April 1995 a paper was produced in response to a request from Gerald Malone. Roger Scofield cautioned that such a scheme was, “the exact opposite of the position that the Government generally and Health Ministers in particular have taken to date.” The terms of the advice sought to steer the Minister firmly away from any such scheme. The Government’s opposition to no-fault compensation was set out; it was suggested that those infected might access “the full range of health, social and security services provided by the government” as a “‘safety net’ ”; it was positively asserted that “Those patients who were infected were given the best treatment available at the time”; special factors were said to apply to the HIV settlement; the Treasury would strongly resist a claim for funding and thus “any money spent on a hardship scheme would probably be at the direct expense of direct health care”; and the Minister was warned that there would need to be a “clear policy justification for establishing a special payments scheme … this would need to be argued, initially with the Treasury and probably the cabinet as a whole, as well as be defensible before the PAC[685] if such payments were challenged.[686]

The Permanent Secretary, Graham Hart, was also highly doubtful about a scheme, suggesting that there would be “great resistance to any weakening of the line”, that any “concession towards Hepatitis C victims would be very difficult”, and that “Ministers will certainly wish to discuss this very fully with officials before reaching a view.[687]Ahead of a ministerial meeting to discuss the position, Graham Hart wrote to Gerald Malone on 12 April 1995:

“I do not need to repeat the difficulties that would arise over any decision to concede on payments to those infected with Hepatitis C by blood transfusions or blood products. Those are difficulties of principle as well as practice – and I find them pretty compelling. I recognize, of course, that the political pressures could become too great but I think the prospects of persuading other Departments, especially the Treasury, that we had to move now are not at all good.”

He added that it would be useful to have a full discussion of the pros and cons before any decision was reached and that in the meantime “we must avoid giving any hints to anyone that our line could weaken. That could be fatal.[688]

Baroness Cumberlege was also firmly opposed, writing on 11 April 1995 that it would be “a great mistake to concede payments for Hepatitis C victims. It was a mistake to concede the HIV victims but the scheme was at least clearly defined … It is too easy to slip into no fault compensation which would be financially and principally disastrous, not only for the NHS but to other areas of Government.[689]

Whether as a result of the firm advice from the Permanent Secretary, or the opposition of ministerial colleagues, or otherwise, Gerald Malone changed his mind. On 1 May 1995 he wrote that he would “firmly and enthusiastically support a strategy to resist compensation payments” and that a “logical and defensible distinction can be drawn between HIV sufferers and Hepatitis C sufferers.” He added that if payments were to be resisted it would be “catastrophic to cave in to any subsequent pressure” and that “Number 10 must be taken along at all stages and alerted both to the likely vigour of the campaign and to the fact that the PM could be faced with a powerful deputation at what might be a difficult moment.[690] Virginia Bottomley agreed, commenting that “there will always be new examples” and that a consistent line must be held. She asked that the Department “establish the views of the territorials”and that the senior departmental official “talk Carolyn Fairbairn from No 10 through the issues.[691]

In accordance with the Secretary of State’s request, the views of officials from Scotland, Wales and Northern Ireland were sought,[692] and Number 10 was alerted to the issue.[693] A meeting of ministers was arranged for 7 June 1995. The views of the “territorials” on compensation for those infected with Hepatitis C through blood transfusion and blood products were set out in an update in advance of the meeting. The view of officials in Scotland was that “while the no-compensation’ position is becoming increasingly untenable, proposals to link payments to social needs and the degree of harm suffered would be difficult to establish and the (clinical) judgements required would make it costly and complex to administer.”Legal advisers in Wales were of the view that “it would be difficult to sustain rejection of claims for compensation on the grounds of a distinction between those infected with HIV and HCV.” They agreed that clinical assessment of the effect of Hepatitis C on individuals would be difficult due to its variability. In Northern Ireland, officials’ view was that “it is difficult from point of view of equity to resist comparisons with HIV compensation.” All expressed a view about costs and indicated that the views of ministers had not yet been sought.[694]

Notwithstanding these views from “the territorials” as to the difficulties of reliance on a distinction between HIV and Hepatitis C, all those present at the meeting on 7 June 1995 – which included Gerald Malone, Tom Sackville, Dr Metters, Graham Hart and Carolyn Fairbairn – “were agreed that it would be desirable to maintain the status quo and not extend the principle of no-fault compensation either to those infected with Hepatitis C or CJD. The precedent of payments to those infected with HIV/AIDS through blood and blood products was not helpful in this context but it was agreed that a justifiable distinction could be drawn between HIV/AIDS and other viruses.[695]

The following day, 8 June 1995, Alf Morris MP tabled an Early Day Motion calling for financial assistance, to which the Department of Health’s line to take remained “We have great sympathy for those affected, but have no plans to make special payments.[696] A briefing for the Prime Minister dated 9 June 1995 reiterated both the lack of plans to provide compensation and that patients received “the best treatment available in the light of medical knowledge at the time.[697]

John Marshall therefore turned his attention to Number 10. He asked to bring a deputation to see the Prime Minister, John Major, to discuss the position of people infected with Hepatitis C from blood products.[698] The advice from the Department of Health was that it would not be appropriate for the Prime Minister to meet this delegation, health ministers having recently met and decided to “maintain the current line.[699] That “current line”was the expression of “great sympathy”, followed by the Government not accepting “that there has been any negligence”and an assertion that patients infected with Hepatitis C “received the best treatment available in the light of medical knowledge at the time.[700]

Stephen Dorrell, who became Secretary of State for Health on 5 July 1995 (succeeding Virginia Bottomley), gave evidence before the Health Select Committee on 19 July 1995, where he was questioned by John Marshall. His position, which he believed “very strongly to be true”, was that “any patient who undertakes a course of medicine must accept that there is a risk attached to modern medicine and in cases where a patient is damaged but without any fault, I do not believe that it is a sensible use of NHS resources to provide compensation in those cases … Where there is no fault, I am not in favour of compensation as a principle.” He acknowledged that there was an “illogicality” between the position of those with HIV and those with Hepatitis C, but asserted that “the haemophiliac who contracted AIDS as a result of blood transfusion was provided with compensation in contravention of the principle which I enunciated.[701]

On 31 July 1995 the Secretary of State wrote to Sir Edward Heath MP, who had raised the Haemophilia Society’s campaign on behalf of a constituent, stating that there were no plans to make payments to those infected with Hepatitis C.[702] This letter both reflected the Department’s established position and provided Stephen Dorrell “with an opportunity to clarify my own view early in my tenure as Secretary of State.[703]

John Marshall and other MPs renewed their request to the Prime Minister to receive a small delegation in September 1995.[704] The Prime Minister was “unconvinced” and a briefing was sought from the Department of Health, “to include a summary of the line he might take in such a meeting.[705]The briefing provided expressed confidence that patients received “the best treatment available in the light of medical knowledge at the time”and characterised the MPs’ request as being for compensation “for patients where, tragic though their circumstances are, no fault and no negligence on the part of the NHS has been proved.[706]In January 1996 the Prime Minister declined to meet with John Marshall: he wrote that the “compensation” previously provided “reflected the very special nature of the HIV virus” and there was nothing to be gained by further discussion.[707]

Another junior minister tries to reconsider the policy

In December 1995 the Haemophilia Society had published a report which it had commissioned to examine the needs of people with haemophilia and Hepatitis C.[708] A note prepared for the Secretary of State and for John Horam (later Lord Horam), the new Parliamentary Under-Secretary of State for Health, suggested that it was reasonable to suppose the published evidence was “emotively and selectively used”. Some criticisms were said to be of failings of clinical management by doctors and other healthcare professionals. It was further observed that from the early 1970s onwards it had been appreciated that haemophilia patients were at risk (“and indeed some were becoming jaundiced following treatment”). This was said to be “an accepted side-effect at that time taking into account the benefit.[709] By way of comment, the note seems aimed at disparaging the report. It does so unfairly.[710]

At an adjournment debate on 13 December 1995, John Horam, whilst asserting that “The patients we are now discussing received the best treatment available in the light of medical knowledge at the time”,[711] indicated that he would like to read the Haemophilia Society’s report thoroughly and that he would be interested to hear details of the “relatively modest and restricted proposal” made by John Marshall during the debate.[712]

Just as his predecessor Gerald Malone’s willingness to consider the possibility of a shift in policy had caused consternation within government, so too did John Horam’s.

A Treasury official wrote to the Department of Health, expressing concern about what had been said: “The Government has a firm and agreed policy on such issues. Consistent with that policy, and for the avoidance of doubt, I should indicate that the Treasury would be strongly opposed to what Mr Horam termed ‘the relatively modest and restricted proposal’ made by Mr John Marshal [sic] MP.[713]This letter was seen by John Horam for the first time when preparing his statement for the Inquiry: he expressed concern at the letter and surprise that it was not drawn to his attention by officials within the Department of Health.[714]

John Horam’s proposal of a modest amendment to the Department’s standard line, to add the words “‘at present’ ” to the words “‘we have no plans to make special payments’ ”, led to an expression of alarm by civil servants: “we fear that if we were to qualify the existing line in correspondence as suggested, it would be taken as indicating a weakening of the Government’s position, and imply that compensation is being considered and further continued pressure would lead to concessions.”It was suggested that the Minister discuss the proposed additional wording with the Secretary of State.[715]

It is clear that in making this suggestion officials were hoping that the Secretary of State would curtail John Horam’s willingness to look afresh at this issue. No doubt with the same aim in mind, the minute was forwarded to the Permanent Secretary with the following note:

“The Permanent Secretary may wish to be aware of the attached minute. I mentioned to him the other day that PS (H) [Parliamentary Under-Secretary of State for Health] was clearly not happy with the firm line Ministers have taken up to now on compensation for haemophiliacs infected with hepatitis C. It is quite clear that he is trying to change the line, little by little. He has had plenty of briefing (written and oral) on the subject, but his sympathy for those concerned is clearly uppermost in his mind. Cost comes second – hence his readiness to consider proposals for a scheme limited to those who have actually developed chronic illness, rather than extending to all who have been infected.”[716]

On 12 January 1996 John Horam requested a submission setting out costed options for compensation. His Private Office explained that:

“PS(H) has been giving further thought to the issue of awarding compensation to haemophiliacs who contracted hepatitis C before routine screening of blood products was introduced. He is well aware of our current position on this issue and the reasons for this. However, against a background of mounting political pressure, he would like to explore the options for offering compensation, if only to assure himself that we have done all that is feasible.”[717]

In the meantime, but without John Horam’s knowledge, the Permanent Secretary, Graham Hart, expressed the view that:

“if pressure continues, we shall eventually be forced to concede. It would be nice to do so in an orderly manner, but, in practice, the Treasury would be unlikely to budge until such time as the political situation became so untenable that the Prime Minister decreed that something had to be done. For the time being, therefore, we should continue to hold the line firmly … it would probably be wise to undertake some contingency work on the sort of scheme favoured by John Marshall so that we can move quickly if necessary.”[718]

Lord Horam told the Inquiry that he did not see this minute at the time, was surprised to read that the Permanent Secretary’s view was that the Department of Health would eventually be forced to concede and was concerned that this information was not shared with him at the time.[719]

That officials believed that John Horam was stepping out of line is also apparent from a minute of 9 January 1996:

“The new PS(H) John Horam wishes to appear is [sic] sympathetic to the situation of haemophiliacs who contracted Hepatitis C and open to receiving and considering any information put forward. However no commitment to making any such payments has been made. Officials fully understand the financial and precedent implications of introducing even some form of limited ‘compensation scheme’ and will continue to make these clear to Minister as opportunity arises, as they did when briefing for the debate in question … Officials will of course continue to keep a watch on the relevant correspondence etc. And of course PS(H) cannot alter the Department’s policy without agreement of SoS who – recent correspondence suggests – retains a firm line.”[720]

On 19 January Kevin Guinness asked his colleague preparing a first draft of the options paper requested by John Horam to include reference to it being a “Slippery Slope” and to stress that any payments “would have to come from less money being available for patient care.[721]

On 9 February 1996 the submission requested by John Horam setting out options for compensation of people with haemophilia with Hepatitis C was provided. It recorded that people infected through blood transfusion “would have as good cause as haemophiliacs for access to a compensation scheme” and that in the view of officials “if anything” the case for people infected through transfusion “is stronger because some were infected after tests were known to exist.[722] The submission clearly sought to steer the minister away from support for a scheme.[723] In his oral evidence to the Inquiry Lord Horam expressed a degree of puzzlement at this document, describing it as “overkill”. He had not been trying to overturn the Government’s entire stance on no fault compensation, but to examine whether a more modest scheme could be introduced, focusing on those with cirrhosis.[724]

On 20 February the Haemophilia Society issued the final version of the report which it had commissioned on Hepatitis C and haemophilia.[725] Officials’ line to take in response to it remained that there were no plans to make payments, “these patients” having received the best treatment available in the light of medical knowledge at the time. It was however acknowledged that John Horam would be meeting the Haemophilia Society the following month.[726]

Having considered the submission of 9 February, John Horam was still keen to consider the options and to keep an open mind in advance of his meeting with the Haemophilia Society. He asked for more information about the likely costs of a scheme limited to those who developed cirrhosis.[727] The Permanent Secretary counselled “extreme caution”, telling the Minister that “The unfortunate truth is that this is a very slippery slope. Our present stance is uncomfortable, but any movement from it, however slight, is likely to start something we won’t be able to stop.”[728]

The meeting between the Minister and the Haemophilia Society took place on 26 March 1996. The Haemophilia Society sought to emphasise “the social, psychological, economic and medical impact on individuals and their families”: it believed that there was a “clear moral case”for financial recompense.[729] Following the meeting the Haemophilia Society provided further information about their proposals to the Department of Health.[730]

In Stephen Dorrell’s written evidence to the Inquiry, he suggested that during the period when John Horam “devoted considerable time and energy to reviewing options for dealing with these issues”, the records showed that the civil servants, including the Permanent Secretary, “engaged with ministers for a serious review of the options available to the government”.[731]I do not agree that the records show the Department engaging in a serious review of the options. Rather they show a Department determined to steer John Horam away from even a modest adjustment to the existing line.

In late April 1996 the Secretary of State met John Marshall and explained that “whilst he was very sympathetic towards haemophiliacs with Hepatitis C, he did not consider that no-fault compensation of £40m would be an appropriate use of health resources.”[732]

A briefing note prepared in advance of that meeting included a reference to Stephen Dorrell’s evidence to the Health Committee in July 1995 which “acknowledged that payment to the HIV group was illogical.[733] This led Charles Dobson to write to colleagues on 23 April 1996 noting that the precedent set by the HIV scheme was “indeed a problem, but I didn’t think we had ever gone so far in public!” He suggested:

“If ministers are having serious worries about the precedents caused by the HIV scheme there is an alternative handling option … that is to admit that our legal case in the HIV litigation was not 100% watertight. In other words, we could (at this distance in time) suggest that the government agreed to the HIV scheme not because there was anything special about the plight of haemophiliacs, but on a straight calculation of the balance of risk that the court would in fact have found it negligent if the case had come to trial. This preserves the “purity” of the government’s stance on no-fault compensation”[734]

It is unclear whether this was a suggestion that the Government should say that the reasons for the establishment of the HIV scheme were something other than in fact they were; or whether Charles Dobson was saying that this was the real reason, as opposed to the reasons which the government had been articulating since 1990. Either way, viewed through the lens of candour, this is a concerning communication. Furthermore, it may be thought to illustrate the Government’s determination to avoid any payment scheme for those with Hepatitis C, come what may.

Responding to Charles Dobson’s email, Paul Pudlo acknowledged that the Secretary of State had consistently opposed any form of no-fault compensation but interpreted his position as being that it was preferable to live with the anomaly of the HIV scheme than to remove it by making it the norm. This “candid” position was said to be difficult to defend publicly “since it could be taken as a suggestion that the HIV infected patients are not deserving of the compensation they receive.” Paul Pudlo referred to a tacit recognition that, with the benefit of hindsight, the distinction made between the plight of HIV and Hepatitis C infected people with haemophilia was “looking increasingly tenuous. It is now known that HIV is not as rapidly fatal as was thought at the time of the settlement but HCV is worse than predicted. This erosion of the clinical difference between the groups has weakened the proposition that HIV was a special case.”Paul Pudlo was not in favour of running the argument suggested by Charles Dobson, querying whether it was consistent with “the HIV legal view at the time”. He was also unconvinced that the Department of Health could argue that the legal position vis a vis Hepatitis C was “so much better”.[735]

Commenting on this in his written statement to the Inquiry, Stephen Dorrell confirmed that his evidence to the Health Committee set out his view clearly: “I did not (and do not) support the principle of no-fault compensation payments to NHS patients who suffer as a result of the inevitable risks associated with medical treatment.[736] The implicit characterisation of the transmission of deadly viruses – HIV and Hepatitis C – as “inevitable risks associated with medical treatment” is surprising. It is also wrong.

At his April 1996 meeting with the Secretary of State, it had been suggested that John Marshall’s best course of action might be to seek funds which had not been allocated for health purposes. This led to John Marshall appealing directly to the Prime Minister again. He asked whether help could come from the contingency fund rather than the Department of Health’s existing budget.[737] The Prime Minister’s response suggested that the Government had given the question of compensation “very careful consideration, including the Irish scheme.” “Great sympathy” was expressed but the Prime Minister said that it was “better to spend money provided for health care, from whatever source, on treating patients than on payments to people who received the best possible treatment available at the time.[738]

On 25 June 1996 John Horam met John Marshall and stressed that it would be very difficult to justify “payments of this magnitude with so many competing demands on the health service.”He also indicated that it was extremely unlikely that the Treasury would agree to the cost being met through the Government’s contingency reserves.[739]

On 29 July 1996 judgment was delivered by the High Court in a case involving the transmission of CJD by human growth hormone. John Horam’s private office asked officials if there was anything in the judgment that might affect the terms of the still outstanding reply to the Haemophilia Society regarding those infected with Hepatitis C. Kevin Guinness suggested that the cases were “very different in one way, in that, with hepatitis, it was known by all (including the patients) that infection was being transmitted, though it was not necessarily thought to have long-term consequences”.[740] This was repeated in advice provided to the Minister in September 1996, which asserted that the judge found the Department of Health negligent “primarily on the grounds that neither treating physicians nor recipients of human growth hormone (HGH) treatment were made aware of the risk of contamination at the earliest opportunity and that action to reappraise the HGH programme was not taken as urgently as it should have been once that risk was known.” Hepatitis C was very different because “the risk of infection via blood products was known to all concerned – including the patients. The problem was that there was no reliable test available to screen the blood. The Department is satisfied that action to introduce screening of blood for Hep C was taken as quickly as possible once a reliable test had been identified.[741]Lord Horam, in his evidence to the Inquiry, acknowledged that it did not occur to him to question how a civil servant could state with such confidence that all patients knew that infection was being transmitted, adding “it puzzles me that he could know that.[742] The evidence which this Inquiry has received establishes that, contrary to officials’ assertions, the risk of infection via blood products was not known to all patients.[743]

The decision not to make any form of payments for those infected with Hepatitis C was communicated to the Haemophilia Society in October 1996. The terms of the refusal repeated that there had been no negligence on the part of the NHS and that “Tragic though it is that the very treatment designed to help those patients infected should have caused them harm, there can be no question that they received the best treatment available at the time. That treatment was essential for their survival.” Other reasons included the belief that this would “very quickly” develop into a general no-fault compensation scheme and that it would involve the expenditure of substantial sums of public money that was best used in direct patient care.[744] In his response, as well as expressing deep disappointment, Reverend Tanner reiterated that the Haemophilia Society’s request had been for a “compassionate approach to the strong moral arguments involved”, which would not set a precedent for no-fault compensation. He pointed out that many had lost their jobs and more than 60 people with haemophilia had already died because of Hepatitis C infection.[745]

On 7 October 1996 the World In Action documentary Tainted Blood was broadcast. It included John Horam stating “Remember they are alive first of all, I mean they’ve had the gift of life from the blood products they received, and in addition some of them have indeed got hepatitis C. But first of all they are alive and secondly the onset of hepatitis C, while very severe, in the case of probably one in five, undoubtedly, indeed leading to cirrhosis of the liver and death, er in many others is not so severe. So lets [sic] look at it in perspective.”It also recorded Professor Howard Thomas explaining that “the patient with hepatitis C is equally deserving [as the patient with HIV] just because it takes a longer time for him to develop symptomatic disease doesn’t mean it’s any less serious.[746]

Alf Morris took up the issue with the Prime Minister, referring to the “anguish and disbelief” at the Government’s position and seeking a meeting.[747] The Prime Minister was advised to, and did, decline, emphasising that the Government saw “a clear distinction between the plight of those who contracted HIV as a result of NHS treatment and those infected with hepatitis C.”[748]

In a powerful speech in Parliament on 11 December 1996 John Marshall raised the question of compensation again: “it seems to me fundamentally wrong that individuals who suffer as a result of treatment given on the national health service should be ignored by society.”He emphasised that many would die from Hepatitis C, and that for many others “the quality of life will deteriorate dramatically, and they will suffer severe physical and economic hardship”.[749] He was indeed right, as the evidence which this Inquiry has heard attests. John Horam, in response, maintained the government line.[750]

In February 1997 Alf Morris again raised the question of compensation, urging the Secretary of State to “act now”. He said that “In none of the campaigns I have been closely involved in here over the years – among them those for the thalidomide victims, for children with dyslexia and autism, for war widows and for haemophiliacs infected with HIV – have I had so strong a sense that no campaigning should be necessary to right such an obvious wrong.[751]

The appeal to the new Government

On 1 May 1997 a general election was held, a new government, under Tony Blair, came in, and a new Secretary of State for Health, Frank Dobson, was appointed. The Haemophilia Society renewed its efforts to persuade the Government to establish a financial assistance scheme for those infected with Hepatitis C. It wrote to the Secretary of State on 12 May 1997, asking the new Government to act quickly to review the previous Government’s policy.[752] It also wrote to Baroness Margaret Jay, who had been appointed as Minister of State for Health, on 23 May 1997, reminding her that she had previously spoken in support of financial recompense for those infected with Hepatitis C in the House of Lords.[753] On 16 June 1997 a minute to the Secretary of State’s office strongly recommended that the Secretary of State agree to review the issue.[754]

An issue that was also being considered within the Department of Health at this time was the question of compensation for those infected with CJD from human growth hormone, which was the subject of litigation. A minute dated 28 May 1997 regarding the setting up of a meeting to discuss that issue bears this handwritten note to the Permanent Secretary: “I think MH(PH) would like to give more compensation to haemophiliacs but officials are trying to steer her away.[755] MH(PH) was the Minister of State for Public Health, Tessa Jowell.

On 10 September 1997 the Haemophilia Society met the Secretary of State to press their case.[756] The advice from officials to the Secretary of State in advance of the meeting referred to a recent decision not to provide compensation to patients infected with CJD through human growth hormone treatment and suggested that:

“In the light of the decision relating to CJD, it would seem unlikely that SofS [Secretary of State] would wish to take a contrary line in relation to haemophiliacs and hepatitis C. The meeting is, however, principally an opportunity for SofS to listen to the Society’s views, which he can then consider further. We would recommend that SofS indicates to the Haemophilia Society at the meeting that he will not be making a decision immediately, but will need a short while to consider the matter further. If, having heard the Society’s representations, SofS wishes to reconsider the compensation issue afresh, officials will shortly provide fuller advice.”[757]

The Secretary of State was also advised that if help were given to people with haemophilia, it would be difficult to justify not extending it to other people infected with Hepatitis C through blood and blood products, as had been the case for those infected with HIV through transfusion.[758]

Frank Dobson agreed to consider the Haemophilia Society’s points most carefully and said that he would write shortly.[759] Following the meeting his private secretary requested a note on “the broader considerations surrounding both the compensation and Factor VIII issues including a draft reply for SoS to send to the Haemophilia Society.[760]

A meeting took place between the Haemophilia Society and Baroness Margaret Jay at the Labour Party conference at the end of September 1997, following which the Haemophilia Society sent her a note from Professor Eric Preston referring to “clear and unequivocal evidence that there is an emerging risk of mortality from liver disease and liver cancer in the UK haemophilia population in both HIV-infected and HIV-uninfected.[761]

There was a delay in officials providing the Secretary of State with the information which he had requested due to issues relating to the emergence of variant Creutzfeldt-Jakob Disease (“vCJD”).[762] He had also been considering the introduction of recombinant Factor 8 and by February 1998 had decided that he would like to be able to announce its introduction. The belief of officials appears to have been that he would “also be saying ‘no to Hep C compensation’ at the same time”,[763] and a submission to the Secretary of State on 16 February 1998 recorded that it had been “assumed on the hepatitis C ‘compensation’ issue, given the considerable implications to the wider NHS of agreeing to any such scheme, that you would wish to continue with the policy line which the Government has so far taken in response to representations from other groups ie to refuse such requests”.[764] On 24 February 1998 a further submission provided a draft response to the Haemophilia Society which “tried hard to be as sympathetic as possible in refusing compensation, without repeating too many of the standard arguments which have been put to them on many occasions in the past.[765] Contrary, however, to the assumption of officials, the Secretary of State had not yet reached a decision: a handwritten note from him asked for “a short letter on ‘recombinant’ etc & say I’m still looking at the other issues.[766]

On 4 March 1998 the Secretary of State decided to write to the Prime Minister on the question of whether some form of compensation should be offered to people with haemophilia infected with Hepatitis C. This alarmed officials. With echoes of the departmental response to former ministers Gerald Malone and John Horam, they sent a minute the next day to Dr Graham Winyard, the DCMO, “expressing concern that while SoS accepts that the Government could not afford a large compensation package, he feels that a small hardship fund like the MacFarlane Trust would be possible. Officials are concerned that significant funds would need to be diverted from patient care to fund it and that Treasury remain fundamentally opposed.[767]

Alarm continued to be expressed: on 6 April 1998 a minute recorded that “We are in a rather difficult position in respect of those infected with hepatitis C through NHS treatment, because SofS seems inclined at present, contrary to the public Government line so far … to consider making some form of special payments to haemophiliacs in this group.[768]

On 8 May 1998, in response to Frank Dobson’s request two months previously for a letter to send to the Prime Minister, civil servant Christine Corrigan wrote that there were a number of issues that needed to be determined before the letter could be prepared. A series of questions were set out and a meeting was suggested.[769] Dr Winyard wrote to the Permanent Secretary (Chris Kelly) on 12 May expressing his concern:

“Secretary of State’s wish to pursue the possibility of compensation for Haemophiliacs damaged by Hepatitis C raises some major policy questions both about no fault compensation and the potentially even more elastic concept of ‘a moral liability’ of Government to compensate individuals and groups who have been damaged however inadvertently[770] by its actions … It seemed to us that there are very real dangers in moving from specifics to general policy issues as is happening at present, even more so because apparently the Haemophilia Society are aware of Secretary of State’s intention to ‘write to No 10’.” [771]

On 18 May 1998 Baroness Jay met officials to discuss the issue. She asked for a note to send to the Secretary of State: her own “clear position” was that “we must hold the line that the HIV decision was the ‘aberrant’ one and that we must resist this pressure for compensation.[772] A note was duly produced and sent by the Minister of State to Frank Dobson on 1 June 1998. The note sought to persuade the Secretary of State against a scheme for people with haemophilia infected with Hepatitis C, which was not “feasible” for a number of reasons. These reasons included that there would be immediate pressure to extend the scheme to transfusion recipients (as to which “it would be very hard on equity grounds to resist”), the costs would be considerable (“We can imagine the likely response from Treasury!”) and (“most significant”) the wider implications of similar claims from other patient groups relating to harm from NHS treatment where negligence had not been proven in the courts. Baroness Jay’s advice was to “hold the line and resist the pressure for such payments” and that it was very important:

“if patients are to have realistic expectations of the NHS, that they are encouraged to accept that virtually any treatment involves risk, and that while known risks will be drawn to their attention, and the NHS will always do its best for them, success cannot always be guaranteed. There may be an adverse outcome of any treatment, either in the short or longer term. The inescapable fact in this case is that, while it is undoubtedly very unfortunate that these patients contracted hepatitis C through their NHS treatment, without that treatment many – if not most – of them would not be alive today.”[773]

A handwritten note on a copy of the submission of 8 May records:

“I know Drs Metters & Winyard are really concerned about setting a precedent for no-fault compensation in the NHS. We did avoid it with HIV payments, but there’s a risk that – if we move on this – we’ll have to pay out on HTLV, nvCJD etc. The problem is explaining to the haemophiliacs with HIV & Hep C why we paid for one & not another. The answer proposed here is HIV was then thought to mean very short life span & very rapidly declining health. My feeling is that was illogical, but we could make things worse by allowing another special case. Maybe we resist this & pursue making the blood supply as safe as possible”.[774]

A meeting to discuss the issue subsequently took place between Frank Dobson and Baroness Jay on 13 July 1998. A later document describes that “MS(L) said that she felt personal discomfort with having to resist the plea but nevertheless felt it should be resisted.[775]It appears to be at this meeting that Frank Dobson agreed to maintain the existing policy: a minute from the Secretary of State’s Private Office recorded that the Secretary of State and Minister of State recognised that there would be criticism of the “choice not to follow the HIV/AIDS scheme but are prepared to defend the position on the grounds that the HIV decision was taken on the basis of the understanding of the disease progression at that time.[776]

That decision was communicated to the Haemophilia Society on 28 July 1998. The Secretary of State explained that the Government had decided not to set up any form of payment scheme for the “inadvertent harm” of people with haemophilia infected with Hepatitis C.[777] The decision was announced in Parliament on the same day.[778] Thus Frank Dobson joined the small group of ministers (Gerald Malone, John Horam) who had seemingly wanted to make some provision for someHepatitis C sufferers at least but who encountered resistance within the Department and ultimately continued the existing departmental line.

Government attempts to hold the line

The Haemophilia Society did not let matters rest there. Advice to Baroness Helene Hayman (who had become Parliamentary Under-Secretary of State for Health in the Lords on the day of Frank Dobson’s announcement) in November 1998 explained that the campaign was being renewed and the Haemophilia Society was challenging each of the points in Frank Dobson’s letter through parliamentary questions and correspondence, as well as requesting a public inquiry.[779] There was no change of policy on the part of the Government, however.[780] Thus, for example, Baroness Hayman maintained the line in Parliament on 15 June 1999[781] and was advised to do so in correspondence.[782]

She appears to have had some doubts, however, about the claimed distinction between HIV and Hepatitis C.[783] Her statement explains that she “clearly felt uneasy about the decision not to introduce a special payment scheme for haemophiliacs infected with Hepatitis C through NHS treatment.[784] By 1999 advances in treatment meant that it was more difficult to justify the difference in treatment of the two groups: “I imagine I struggled with the existing policy that these two groups of people should be treated differently, given that they had received the same treatment with comparative levels of severe consequences.[785]

It is clear that the Government was finding it increasingly difficult to justify the distinction between HIV and Hepatitis C. Indeed it was this which led to Baroness Hayman’s uneasiness. On 24 May 1999 Lord Alf Morris queried the suggestion that had been made on behalf of the Secretary of State that the social stigma of HIV and the danger of infecting partners were important considerations in granting special payments for HIV, and asked Baroness Hayman to point to where that was officially stated when the Major Government announced its HIV scheme.[786] Baroness Hayman sought advice on how to respond and in the internal correspondence it was suggested that the Secretary of State had been “giving the view of the current Government, not attributing reasons to a past Government.[787] That is not, however, consistent with the speaking notes prepared for Baroness Hayman which stated “The special payment scheme for those infected with HIV … was introduced in 1988. At that time there were very strong public attitudes to HIV – of stigma, and widespread fear of a new and untreatable fatal infection which was sexually transmitted.[788]These notes clearly suggest that the reasons at the time the scheme was introducedrelated to stigma and transmission to partners. An internal email queried whether it was the case that “we thought we were on weak legal ground in the HIV case … When it comes down to what was or may have been said publicly I suspect that it is difficult to find any difference in the merits of the groups themselves ie between then and now.[789]

Following a further written answer which referred to the very high level of stigma,[790] the Haemophilia Society wrote to Baroness Hayman taking issue with what was being said, on the basis that it did not represent an accurate explanation of the Government’s decision in 1987 to introduce a special payments scheme for those infected with HIV. Karin Pappenheim said that the Government’s decision in 1987 “was far more to do with the pressure of legal actions then being pursued, the large number of deaths from AIDS within the haemophilia community, the high profile of HIV in the media and all party pressure from within Parliament.[791]

Lord Philip Hunt took over from Baroness Hayman in July 1999 and in September attended a briefing with officials regarding the Hepatitis C issue. He was advised that ministers had taken a clear decision not to award a special payment scheme but that there was continued unhappiness and lobbying from the Haemophilia Society and some MPs and that the position was being reconsidered in Scotland by Susan Deacon Minister for Health and Community Care.[792]

A line to take drafted for ministers in November 1999 sought to justify the difference between Hepatitis C and HIV on the basis that the decision to make special payments for the latter was an exception by the previous Government “in circumstances where the only prospect for these patients was early death.[793]

In March 2000 Lord Hunt asked about the scope for doing more for people with haemophilia infected with Hepatitis C and requested an outline costing of a hardship fund. This advice was provided on 27 March and said that such a fund would be unlikely to be acceptable and that there would be a continuing demand for parity with the HIV scheme.[794]

In April 2000 Charles Lister, providing advice to Lord Hunt regarding the Hepatitis C litigation against the National Blood Authority, noted that settlement of that litigation (or an award of damages by the court) would give rise to “inevitable claims of inequity from the Haemophilia Society, especially as the 400 or so haemophiliacs still alive with HIV also have HCV and signed an undertaking when they received their financial settlement not to take legal action on HIV or HCV.[795] Lord Hunt provided a note to Alan Milburn (who had succeeded Frank Dobson as Secretary of State) and Gisela Stuart (Parliamentary Under-Secretary of State in the House of Commons) in June 2000 regarding settlement of the Hepatitis C litigation, in which he noted that this had “significant presentational difficulties given that we are refusing financial assistance to haemophiliacs infected with HCV through blood products prior to 1985.” He wanted to ensure “a clear and defendable distinction between settlement of this litigation and our continued refusal to compensate haemophiliacs infected with HCV through blood products on the basis of non negligent harm.[796]

In October 2000 Lord Hunt sought advice on what could be offered in terms of a package of care for those who had contracted Hepatitis C from blood products – with it being suggested that he was hoping to seek the permission of the Secretary of State “to work up something more for HCV.[797] Officials provided him with a proposed pulling together of elements of a co-ordinated approach to problems associated with Hepatitis C treatment, observing that “with the spotlight on Government compensation for people with variant CJD, and the NBA contesting HCV litigation in the Courts, it would be politic to announce an increased priority to the services for all those with HCV.[798] At this stage it was understood that the Scottish Executive was still seeking to maintain the common UK position against a payment scheme for those infected with Hepatitis C.[799]

The reference to compensation for vCJD reflected the fact that, following publication of the report of the bovine spongiform encephalopathy (“BSE”) Inquiry on 26 October 2000, which recommended financial support for those with vCJD, the Government announced that it intended to put in place a compensation scheme for vCJD sufferers. Officials now sought to explain why the issue of compensation for people with haemophilia infected with Hepatitis C was different from vCJD.[800] The lines to take included the particularly distressing nature of vCJD (total absence of treatment, incurable and inevitably fatal), and sought to emphasise that the vCJD payments were not no-fault compensation but “ex-gratia payments for a group of people who, because of exceptional circumstances, have endured and are enduring a particularly harrowing ordeal.” This was distinguished from the position of those infected with Hepatitis C from blood products, on the ground that the products were heat treated as soon as the technology was available and there was thus no legal liability to justify compensation.[801] The plight of individuals and families affected by vCJD was described as “the result of a unique set of circumstances for which society as a whole must bear a moral responsibility.[802] The Secretary of State wrote to Baroness Jay on 22 November 2000 explaining that he was “convinced” that both decisions (ie to make ex gratia payments to people with vCJD and the continued refusal to compensate people with haemophilia infected with Hepatitis C) “are perfectly defensible on their own merits.[803]

In 2001 there was a further intensification of the campaign for financial assistance, with requests from Lord Morris and Edward O’Hara MP to meet the Prime Minister,[804] campaigners from the Manor House Group and Haemophilia Action UK staging a protest march demanding compensation;[805] an adjournment debate in the House of Lords; repeated parliamentary questions from Lord Morris; an Early Day Motion from Dr Brian Iddon MP; and the Haemophilia Society commencing its “Carpet of Lilies” campaign in May. Moreover on 26 March 2001 the judgment of Mr Justice Burton in A and Others v National Blood Authority was handed down.[806]

In July 2001 the Parliamentary Under-Secretary of State for Public Health, Yvette Cooper, requested a position paper in light of the High Court judgment, setting out options. The submission provided to her noted that although the judgment only placed a legal obligation to make payments to those awarded damages, “it introduces further questions of inequity and increases the moral pressure to do so.[807] The submission recognised that further instances of payment for non-negligent harm in the NHS “will not necessarily erode the general rule” although it would be important to “re-emphasise the Government’s own parameters for such payments to contain any impact on the NHS.[808] The range of options identified included lump sum payments and/or a hardship fund for all or some people with haemophilia infected with Hepatitis C. The advice from officials was that if ministers wished to consider payments, the recommended option was a hardship fund solely for people with haemophilia whose Hepatitis C had caused severe liver disease.[809]

In early July Yvette Cooper approved an amended line to take in response to an Early Day Motion regarding the Carpet of Lilies campaign, indicating that ministers were “reviewing the case for compensation” in light of representations from parliamentarians, the Haemophilia Society and other lobby groups.[810]

In responding to questions raised by Yvette Cooper, Charles Lister advised that it would be difficult to provide payments to people with haemophilia without also making payments to those infected through blood transfusion. Reference was made to other groups seeking compensation; however Hepatitis C could be distinguished as exceptional as a “devastating, debilitating disease” which could lead to cirrhosis and liver cancer.[811]

In September 2001 a meeting was held with the Minister of State for Health, John Hutton, who did not think that offering compensation was an option but asked officials to look into providing a social care support package similar to that of the vCJD scheme.[812]

Shortly thereafter, at the beginning of October 2001, the Scottish Parliament’s Health and Community Care Committee published its report, calling on the Scottish Executive to provide financial support to all who were infected with Hepatitis C as a result of blood transfusion or blood products in Scotland.[813] The report further recommended that the level of financial assistance awarded should be determined on the basis of need. A briefing prepared for the meeting of the Joint Ministerial Committee on Health (involving ministers from across the UK) on 22 October 2001 recognised that the existing line would be difficult to sustain in the rest of the UK if the Scottish Executive “commits to the Scottish Parliament report.[814]

On 13 November John Hutton agreed to hold the policy line that no payments would be made in respect of Hepatitis C infection through blood and blood products except where awarded by the courts.[815] The next day, responding to an adjournment debate, and whilst acknowledging that the issue of compensation was “the most difficult decision of all,[816] he reiterated the policy of successive governments (“that compensation, or other financial help to patients, is paid only when the NHS or individuals working in it are at fault”) and his belief that the NHS had not been at fault.[817] The same day he spoke to Susan Deacon, explaining that he was “holding the line on compensation.” He told her that there was “anxiety” that a new administration in Scotland might opt for a “different and conscious change of position”, which would “create significant difficulties for us if people in Scotland can be compensated but those in England cannot.” Susan Deacon indicated that she was not planning to do so (although she recognised that she could not predict the position “further down track”) and that the Scottish Executive wanted to look at the issue from a UK perspective (“this is an issue which shouldn’t have a different approach north and south of the border.”)[818]

By February 2002 the decision had been taken in Scotland to establish an expert group under the chairmanship of Lord Donald Ross to report on the question of compensation. In May 2002 Charles Lister advised Yvette Cooper that “Until late last year, Scottish Ministers were taking the same line as us on the hepatitis C compensation issue. Under pressure from the Scottish Parliament, this can no longer be guaranteed.” It was also noted that Michael Connarty MP[819] had made a request for papers relating to Frank Dobson’s consideration of the compensation issue, which had been made “under the assumption that a detailed analysis would have been undertaken by the Department.” Charles Lister advised that the papers showed this not to have been the case, and that the debate had been focused around concerns that such a scheme would open the floodgates to further claims. Further, if the papers were released, “they will show that Frank Dobson was minded to support a scheme limited to haemophiliacs with hepatitis C but was persuaded from this by officials and Margaret Jay.[820]

Yvette Cooper met the Manor House Group on 15 May 2002, at which those in attendance explained that clinicians and the medical community had not given people with haemophilia all the information they had at the time so that patients could make a fully informed decision about which treatment to use. The minutes record the Minister agreeing to ask officials to refer to the papers from the period to get a fuller picture of what the known risks were, suggesting that clinicians might not have emphasised the seriousness of Hepatitis C as a risk factor because it was not fully appreciated until at least the late 1980s.[821] The existing government line regarding compensation was repeated. The following month Hazel Blears, who had succeeded Yvette Cooper, met the Haemophilia Society and Michael Connarty and advised that officials were looking at the compensation proposals recently submitted by the Haemophilia Society.[822]

Following the production of the preliminary report of the expert group chaired by Lord Ross in September 2002,[823] the Secretary of State for Health, Alan Milburn, remained unequivocal in his opposition to a Hepatitis C scheme, and agreed a line that “The Department of Health in England has advised that it has no intention of initiating any scheme for compensating this group.[824]

On 4 November 2002 Malcolm Chisholm, the Minister for Health and Community Care in the Scottish Government, called Alan Milburn to inform him that the expert group under Lord Ross was about to publish a preliminary report calling for financial and other practical support for all people infected with Hepatitis C through blood, blood products and tissues, and that Scottish ministers felt that they “had to offer something”.[825] It was intended that an announcement would be made on 6 November. The Secretary of State suggested that this would be a “grave mistake”, “a slippery slope to payments running into millions across the UK” and that Malcolm Chisholm MSP should “tough it out.[826]

The question was raised as to whether this was truly a devolved matter, and the Secretary of State was “very clear that we need to find some way of showing that the Scots don’t have the devolved power to go it alone on this, and thereby prevent them going ahead with any kind of announcement on [6 November].[827] In response Charles Lister, after speaking to the Department for Work and Pensions, provided a submission on 5 November 2002 which recorded legal advice that the scheme could arguably be a social security rather than a health issue (and thus not within devolved powers). He advised that this should be raised with Scotland’s First Minister, Jack McConnell, and that the Secretary of State should request that Scotland not give any public indication that they were exploring a financial package until this issue had been resolved.[828]

In the Scottish Executive’s news release welcoming the report on 6 November 2002, Malcolm Chisholm did not commit to the recommendations but indicated that there were complex medical, legal and financial considerations to take into account and that the Executive was looking at “the interface with the social security system”.[829]

On 29 January 2003 the Scottish Executive Cabinet agreed that £25,000 be paid to those currently alive with Hepatitis C and a further £25,000 to those who developed cirrhosis. A review of costings by Scottish officials led to a decision that the figures would be £20,000 and £25,000 and this was reported to the Health and Community Care Committee in a statement from Malcolm Chisholm. It was subject to resolution of the issue regarding devolved powers, in relation to which the advice of Law Officers was sought.[830] Charles Lister emailed Hazel Blears’s Private Office alerting her to this announcement and setting out the current media line that the Government’s position remained that “a special financial assistance package for this group is not justified.[831]

In April 2003 advice was provided to Hazel Blears by the blood policy team regarding a response to the Haemophilia Society’s proposals. It was recommended that the position remain that compensation was not payable. Law Officers’ advice was still awaited on the devolution issue. The conclusion of the submission noted:

“the position remains that there is no further funding available over the next three years. There is also a major concern that any compensation payment made to haemophiliacs with hepatitis C could open the floodgates for other groups who are currently seeking compensation … SofS has consistently held that compensation is not payable to haemophiliacs infected with hepatitis C and that an exception cannot be made to the general rule that compensation or financial help is only given when the NHS or individuals working in it have been at fault.”[832]

Handover notes prepared in May 2003 by Charles Lister for his successor recorded the current position that:

“Ministers here are sticking strongly to the no compensation line but Scottish Ministers have weakened … SofS asked us to see if a way could be found to stop this. The result was a legal challenge saying that any payment scheme to haemophiliacs would be a social security scheme and therefore outside Scotland’s devolved powers. This issue is currently with the law officers for a determination and we are expecting them to give a view very soon.”[833]

The decision, finally, to make ex gratia payments to those infected with Hepatitis C

On 13 June 2003 John Reid replaced Alan Milburn as Secretary of State for Health and on 17 June 2003 Richard Gutowski, who had taken over from Charles Lister, provided a background note and a line to take for the Secretary of State in anticipation of approaches from Malcolm Chisholm and Jack McConnell. The note described some recipients of blood products having been “inadvertently infected” prior to the viral inactivation of blood products in 1984 and the introduction of donor screening in 1991. Officials saw no justification to move away from the existing line to take.[834] A few days later the Law Officers’ opinion was received confirming that this was a devolved matter.[835] The effect of this was that the UK Government had no power to stop Scotland proceeding with its proposed scheme.

By 23 June the new Secretary of State had formed the view that “given both the precedent on HIV and the likely Scottish decision to now go ahead, it looks as though we will on the basis of fairness have to go down the compensation (ex-gratia) route.[836]A meeting with the Chief Secretary to the Treasury and the Secretaries of State for Scotland and for Work and Pensions took place on 25 June, at which it was agreed that “Wales and Northern Ireland will also need to be brought on board”. The Chief Secretary to the Treasury was “very non-committal” on the financing of an English scheme.[837]

Further discussions took place between officials and ministers over the following weeks about how a scheme could be structured and what payments should be made.[838] As at 31 July 2003 a UK wide scheme was favoured, but Wales and Northern Ireland had not yet been informed of developments.[839]

On 29 August 2003 John Reid announced that England would have an ex gratia payment scheme, a decision made “on compassionate grounds”.[840] Similar announcements were made in Scotland, Wales and Northern Ireland. As described in the following chapter, it took until July 2004 for the Skipton Fund, as it was to be called, to be set up.

Thus ten days after taking up his position as Secretary of State, John Reid reversed the line that had been adhered to for over ten years, and opted for a form of financial support for Hepatitis C sufferers infected through blood and blood products (albeit one that still fell far short of being compensatory in nature).[841] Asked how he came to take this decision (and to do so quickly), Lord Reid told the Inquiry:

“my recollection is that, well, to put it simply, HIV sufferers had obviously gone through terrible traumas, pain, anxiety, and so on. But so had sufferers from hepatitis C. And you could distinguish – – and I think in documentation it illustrates that people did try to distinguish between those suffering from HIV and those suffering from hep C, HIV tended to be younger, they died quicker, and so on and so forth. But to me, they were people suffering, you know, maybe not identically, but suffering in the same sort of way. The anxiety, the fear, the deaths – – and I didn’t find the distinctions between HIV and hep C sufferers – – it didn’t persuade me that they were justified. Secondly, the cause of that suffering, for both those groups of people, was the same route. It was infection through blood products or blood transfusions supplied by the state. And, thirdly, I wasn’t persuaded by the argument that there is no legal liability. I didn’t believe there was a legal liability but that, in my view, shouldn’t – – the obligations of the state go beyond legal liability. There is a moral compulsion on the state to protect its people … and when an agency of the state, which is the National Health Service, by its conduct, whether culpable or otherwise, results in the suffering of a lot of people, I thought that they should be treated in a manner that was just. And that’s basically what I remember of my thinking.”[842]

He told the Inquiry that he did not take this decision on the basis the Scottish Government had done so – rather the decision of the Scottish Government was, he said, the catalyst for prompting these discussions and making him think about it. Lord Reid added “if the line is wrong, you change the line.[843] He was not troubled by the argument that this would be the slippery slope to no-fault compensation, identifying three factors in his evidence on this point. The first was that the argument “if you change this, then you might have to change something else”could be used against any change in policy. The second was that these were to be ex gratia payments, such that “the argument about the legal liabilities leading to a cascade are overcome.” The third was that infection with HIV or Hepatitis C through blood, provided by an agent of the state, was “a sufficiently unique characterisation … you could circumscribe that as a group.[844]

Commentary

The events described above reveal a deep institutional reluctance within government to, and the lack of an open mind to, the provision of financial support to those infected with Hepatitis C through blood and blood products. A line was adopted, and adhered to for over a decade, for reasons that do not, on analysis, stand up to scrutiny. Those ministers who, from time to time, voiced the wish to make some (albeit limited) provision were firmly steered away from that course by civil servants in the Department of Health.

Three factors predominated in the decision-making of the Department of Health on this issue. The first was the fear that the making of payments to people infected with Hepatitis C would be a major step on the slippery slope to a general system of no fault compensation. The second was the belief that those infected had received the best treatment available at the time, and that there had been no-fault or culpability or mistakes in the way in which they had been treated. The third was the attempt to distinguish the position of those infected with HIV through blood or blood products, from the position of those infected with Hepatitis C through the same route.

The fear that the making of payments to those infected with Hepatitis C would, or might, lead to no-fault compensation more generally was a misplaced one. It was illogical. An action only sets a precedent if the facts are sufficiently similar. The establishment of the Macfarlane and Eileen Trusts had not led to the floodgates opening or to a general no-fault compensation scheme. It was implausible to think that the establishment of a similar scheme for Hepatitis C would do so. If it was necessary to establish a ring fence, that could easily have been done with a scheme where the relevant cohort was those infected through blood, blood products or tissue.

As for the belief that those infected had received the best treatment available, whilst it is understandable why such a belief might predispose ministers against making payments, the difficulty with the Department of Health’s position is that, as set out elsewhere in this Report, it was simply wrong to view the treatment in that light.[845] The Government’s decision making was based on the perception that nothing was done wrong (indeed that everything had been done right),[846] without there ever having been any comprehensive or balanced investigation into, and assessment of, what had happened. Other ways in which officials and ministers characterised what had happened included “medical accident”, “accepted side effect”, “the inevitable risks associated with medical treatment”. The use of such terms to describe the transmission of viruses with high mortality rates and few if any treatment options[847] was a mischaracterisation of the reality of what had happened. So too was the belief that all patients knew the risks (they did not).

There was no proper basis for saying that those people who were infected by their treatments were given the best possible treatment in the light of available medical knowledge, let alone to say it repeatedly, let alone for over a decade. There was no proper basis for saying that as soon as a screening test for Hepatitis C was available it was put into use. Both these claims assert superlatives. The starting point ought to have been that it was recognised, within the Department of Health, and thus in ministerial briefings, that claims to perfection might possibly be justified but that as a matter of simple human experience they are much more likely to be overstated. Such claims have to be adequately justified. Since it is plain from the earlier chapters of this Report that they were wrong, these claims could never be. Yet they kept on being used to justify not giving those who had been infected with Hepatitis C even the modest sums that were first given through the Skipton Fund.

The attempt to hold the line by distinguishing the position in respect of HIV and Hepatitis C involved the Department of Health in searching for differences[848] rather than dispassionately considering the similarities: those who contracted it from treatment were infected in the same way, from the same sources, with viral conditions that had similar consequences. Both could be debilitating and lead to death. It is plain in any event from the narrative above that those within the Department of Health were well aware of the difficulties of maintaining this distinction. Thus Tom Sackville observed, this was “a tricky one: if HIV, why not Hepatitis”,[849] officials in Scotland considered that “the ‘no-compensation’ position is becoming increasingly untenable”;[850]in Wales the view was that “it would be difficult to sustain rejection of claims for compensation on the grounds of a distinction between those infected with HIV and HCV”;[851] officials in Northern Ireland thought it difficult “from point of view of equity to resist comparisons with HIV compensation”;[852] Departmental officials tacitly recognised in 1996 that the distinction was “looking increasingly tenuous”;[853]in 1999 it was described as difficult to explain logically. Rather than face these difficulties, the Government clung to this distinction in the mistaken belief that the sky would fall in – in terms of no-fault compensation – if it did not.

The Government became so fixated on holding that line, maintaining that ring fence, that it lost sight of the desperate circumstances of those whose lives had been and were continuing to be devastated as a result of their treatment by the NHS. The question of moral responsibility (or moral compulsion, to use Lord Reid’s description), and the compelling need for a compassionate response, did not feature in the Government’s thinking until a combination of factors – the campaigning of the Haemophilia Society, of other campaign groups and of individuals, the events in Scotland (themselves the product of the actions of campaigners), the High Court judgment in A and Others v National Blood Authority,[854] and a change of Minister to one who was unpersuaded by the Department – brought about a rethink and a change of direction.

That mounting political pressure might eventually render the maintenance of the policy untenable and force the Government to concede was recognised within the Department of Health by the mid 1990s. It should also have been apparent that if Government waited until that point, almost certainly towards the start of the 2000s there would inevitably be individuals who had died, in desperate circumstances and without any financial support other than social security (which was not designed to provide for the needs of those with this debilitating illness), in the intervening period.

The fact that it took until 2003 for any form of payment to be announced for those with Hepatitis C and no payment actually to be made until 2004 deprived those individuals, and their families, of support. It prolonged and exacerbated the suffering of those who survived. And it further entrenched deep feelings of injustice.

There is a lesson to be learned from this account. It is that where a government realises that there is a moral compulsion to provide justice for people who have been injured by actions for which it is ultimately responsible it should take immediate steps to provide it. Waiting – for another study, or another day – before doing so adds to the injury. It adds to the hurt. It adds to the numbers who may die without seeing it. It adds to the injustice.

Repeating the errors of the past by waiting, by delaying, to do what seems inevitable should be done, is to be avoided. Delaying when experience shows that payment is inevitable, not only adds to the overall financial costs on the government but leads to loss of the confidence in government and its civil service which it must hope citizens should have, and ultimately comes at a cost to that justice which a state should guarantee to its citizens.

6.7 Skipton Fund

This chapter describes the operation of the Skipton Fund, focusing on the particular constraints within which the Skipton Fund operated.


Key Dates

29 August 2003 announcements in each of the nations of the UK of financial assistance for people infected with Hepatitis C.

June 2004 announcement that the Skipton Fund will begin processing applications on 5 July 2004.

2006 first fund administrator Keith Foster found to have defrauded the Skipton Fund; requirements for documentation from applicants are tightened.

October 2006 first meeting of the Appeals Panel.

May 2007 Skipton Fund Agency Agreement is signed.

2017 Skipton Fund closes and is replaced by the national support schemes.


People

Nicholas Fish administrator, Skipton Fund

Richard Gutowski head of blood policy, Department of Health

Mark Mildred chair, Skipton Fund Appeals Panel

Peter Stevens, Elizabeth Boyd directors, Skipton Fund

Professor Howard Thomas medical director, Skipton Fund


On 29 August 2003 John Reid, the Secretary of State for Health, announced that a financial assistance scheme was to be established for people who had been infected with Hepatitis C as a result of being given blood products by the NHS in England. The payments were explicitly ex gratia, and the decision was said to be made on compassionate grounds. While “blood products” was the term in the press release, the discussion of financial implications in the submission shows the intention was to support people infected through “contaminated blood transfusions and blood products.” On the same day there were similar announcements in Scotland, Wales and Northern Ireland by the appropriate minister.[855]

The previous chapter set out a detailed account of the decision-making which culminated (finally) in the decision to establish such a payment scheme. However, readers looking for a short synopsis of what led to this announcement will find one in the next section of this chapter. Later sections explain the remit of the scheme and how it operated.

Events in Scotland leading to this announcement

This announcement was precipitated by events in Scotland. In 1999, the Haemophilia Society alleged that the NHS in Scotland had been negligent for failing to introduce heat-treated Factor 8 capable of inactivating Hepatitis C until some time after England had done so. The BBC proposed to run a story about these allegations. In August that year word of this reached Susan Deacon[856] who was newly in post as Minister for Health and Community Care in Scotland. She ordered an inquiry into whether people with haemophilia in Scotland had been exposed to unnecessary risk of Hepatitis C through infected blood products in the mid 1980s.[857] This was to be conducted internally within the Scottish Executive.

Separate developments in England

In separate developments affecting England, in March 2000, a Westminster Hall debate addressed the subject of people infected with Hepatitis C through blood products.[858]

Lord Philip Hunt was the Minister with responsibility for blood and blood products within the Department of Health at that time.[859] He met the Haemophilia Society, other groups, patients and their families. These meetings “were troubling and vividly brought home to me their suffering and the need to help them as much as possible. I looked for ways to do that, but it is a matter of great regret that it took so long for successive Governments to achieve this.[860] Following the debate, and also in March 2000, he asked for and received a briefing on options for “doing more” for people with haemophilia who had contracted Hepatitis C from their treatment.[861] These focussed on the provision of counselling, but also touched on a hardship fund, analogous to that provided for people with HIV. He was advised that the cost was likely to be unacceptable. Further, the Secretary of State for Health, Alan Milburn, was opposed to a compensation scheme or payments, largely on the basis that they would set a precedent, especially since his view was that no fault had been demonstrated.[862]

Next developments – mainly in Scotland and in the High Court of England

To return to events in Scotland: in April 2000, the report which Susan Deacon had requested was delivered to her in draft by departmental officials. They sought to steer her “very firmly in the direction of not agreeing to compensation or special priority treatment for HepC sufferers who may have been infected by NHS treatment”, keeping in step with her English counterparts.[863]

Such considerations did not trouble the Health and Community Care Committee of the Scottish Parliament, which in June and September 2000 considered the Haemophilia Society petition calling for a public inquiry, and a second petition from a person who did not have haemophilia but who had contracted Hepatitis C as a result of a blood transfusion during a routine operation in 1989.[864] These petitions were to lead the way toward further consideration of compensation.

In 22 October 2000, the Scottish Executive published its report on whether people with haemophilia in Scotland had been exposed to an unnecessary risk of Hepatitis C through infected blood products in the mid 1980s. It found no evidence of fault.[865] However, political pressure mounted. The Haemophilia Society responded that the report was a “very thin, incomplete piece of work which does not represent the full inquiry we were seeking”.[866] The Health and Community Care Committee called Susan Deacon to give evidence on 25 October 2000.[867]

Adding to the pressure, the High Court (in England) judgment in A and Others v the National Blood Authority[868] considered claims on behalf of claimants who had suffered Hepatitis C as a consequence of transfusion during NHS treatment. Mr Justice Burton regarded the main issue for his judgment as “whether the public at large would legitimately expect that different steps would have been taken by way of safety precautions and in particular that: (i) the anti-Hep C assay would be introduced earlier than it was”and“(ii) surrogate tests would be introduced in the UK by March 1988”.[869] In resolving these issues he concluded that routine screening ought to have been introduced by 1 March 1990,[870] and surrogate testing should have been in place by March 1988.[871]

The Secretary of State for Health, Alan Milburn, told the Treasury that the legal advice for the Government was that there was a very limited chance of success and the decision should not be appealed.[872]

A consequence of the court’s ruling was that the Scottish Executive began “considering constructively the implications” of it.[873] As a result of this consideration plans developed to enter into discussions in Scotland with Scottish litigants who had been in the same position as those in England and Wales, with a view to settling their actions under the Consumer Protection Act; this was however after Susan Deacon had written unsuccessfully to Lord Hunt to urge the Department of Health/National Blood Authority to seek permission to appeal.[874]

In the meantime, the Health and Community Care Committee of the Scottish Parliament had continued to gather evidence and to consider the petitions before it. In its report published on 3 October 2001, it recommended that the Scottish Executive establish a mechanism to provide “financial and other appropriate practical support to all hepatitis C sufferers who have contracted the virus as a result of blood transfusions provided by the NHS in Scotland, or which involved blood or blood products produced by the SNBTS [Scottish National Blood Transfusion Service].” This support should be available “regardless of whether negligence in the individual case can be proven or not.[875]

The Scottish Executive did not accept the recommendations of the Health and Social Care Committee as they stood, but announced that an expert group, to be chaired by a Court of Session Judge, Lord Donald Ross, was to be set up to look at the pros and cons of a system of financial and other support for those harmed by health service treatment where the NHS was not at fault.[876]

Up until now, the governments of the devolved administrations had adopted the Westminster line that there should be no financial assistance for people who had been injured in circumstances in which the NHS was not at fault.[877] However, it began to emerge that it was likely that Lord Ross’ expert group would call for financial help. In September 2002, Lord Ross presented preliminary recommendations to the Scottish Executive. He proposed initial lump sum payments and a discretionary trust making ex gratia payments to all those who had probably received blood, blood products or tissue from the NHS in Scotland and who had become infected with Hepatitis C.[878] Scottish ministers felt they should offer something. Alan Milburn, thinking this a grave mistake and a slippery slope, sought to persuade Malcolm Chisholm, the Minister for Health and Community Care, not to proceed with any announcement to this effect in Scotland.[879] There now began a disagreement between the UK Government and the Scottish Executive as to whether making payments to relieve financial hardship arising out of health care treatment was a matter in which the Scottish Executive had any right to legislate: it was thought it might not be a devolved issue and that if it were not, it would not be within the competence of the Scottish Executive to consider it.[880]

Although the Scottish Executive considered that the levels of financial assistance recommended by Lord Ross were too high, Malcolm Chisholm made it clear to Westminster that he wished to introduce a payment scheme. On 29 January 2003 he said he would make £20,000 available for those diagnosed with Hepatitis C, with a further £25,000 paid to sufferers who developed conditions such as cirrhosis and cancer of the liver.[881] As The Scotsman promptly reported, this put him “on a collision course with Westminster which has ruled out making payments south of the Border. Now the Department of Health is expected to obstruct payments in Scotland, arguing that the Executive does not have the power to make such decisions.[882]

The question of legislative competence then had to be resolved. By the summer of 2003 it became clear that the question of whether to introduce a compensation scheme as proposed by Lord Ross was within the competence of the Scottish Executive to determine.[883] A significant change also occurred in England. Dr John Reid (later Lord Reid) became Secretary of State in June in succession to Alan Milburn. Although he was advised by the civil servant who had principal responsibility at the time for blood and blood policy, Richard Gutowski, that financial assistance for people infected with Hepatitis C through blood or blood products was not justified,[884] Dr Reid developed a firm view that a scheme to provide financial assistance was the right thing to do.

Thus it was that on 29 August 2003 it was announced in each of the nations of the UK that a financial scheme to support those who had been infected with Hepatitis C as a result of their treatment by infected blood, blood products or tissue would be established. The detailed proposals emerged a little later. It is to the story of how, bit by bit, the parameters of the scheme were established that this account now turns.

Parameters of the Skipton Fund

A few weeks before the announcement, a meeting was held between the civil servants who were progressing the scheme on behalf of the Scottish Executive, and their counterparts from the Department of Health.[885] It was envisaged at that stage that:

“Those qualifying would receive a £20,000 payment, followed by a further £25,000 should their disease progress to a medically defined trigger point … [People coinfected with HIV] would be eligible to claim the £25,000 award should their condition progress to the trigger point. Eligible patients who cleared the disease spontaneously (approx 20%) would receive no payments, those who cleared after treatment would receive the £20,000 payment only and those who receive a liver transplant would receive both awards.”[886]

If this had been applied, then anyone who cleared at any stage, but had not had treatment (often described as a “natural clearer”), would not receive any payment.

Following the Secretary of State’s agreement to the various component parts of the scheme,[887] a Scottish intervention threw into doubt payment for people who had cleared Hepatitis C following treatment.[888] The Haemophilia Society had also stated that “they could not accept” such a scheme and the Secretary of State agreed that there should be further discussion with the Society and Macfarlane Trust.[889]

Initial discussions led to a response from the Haemophilia Society which, as well as conveying the Society’s overall disappointment with the actual sums of money to be offered, expressed four outstanding concerns about the scheme as then proposed: that people co-infected with HIV were to be excluded until the onset of cirrhosis; that bereaved dependants of an infected person who had died would get nothing; that people suffering advanced liver disease without cirrhosis would not receive the higher payment; and that people who had cleared HCV following treatment were not eligible.[890]

This in turn was followed by a plea direct to the Department of Health from Dr Paul Giangrande[891] who had been part of a working group which had produced a report about an appropriate payment scheme for the Haemophilia Society in June 2002.[892] He said they “strongly felt that some form of payment should be made to patients who have simply tested positive for the HCV antibody, even if they subsequently cleared this and did not have abnormal liver function tests”; that it was “grossly unfair” that people coinfected “should not receive additional compensation”;and that “Equally, we feel it grossly unfair that compensation should not be offered to the relatives of those who died from hepatitis.[893]

The Guardian in an article on 29 October 2003 added its weight to these influential pressures, focussing its support on the first two concerns the Haemophilia Society had raised;[894] and Michael Connarty MP, chairman of the All-Party Group on Haemophilia, then met the Parliamentary Under-Secretary of State for Public Health, Melanie Johnson. As a result of that meeting, she asked her civil servants to estimate the costs of extending the proposed scheme to cover people who were coinfected, those who had cleared Hepatitis C following treatment, and dependants.[895] On 10 November 2003 Richard Gutowski responded to the Minister by recommending that both the first two of these groups be made eligible; but that extending the scheme to dependants “would at least double the cost of the scheme and remains unaffordable within the existing budgets of all the four Health Departments.[896] His submission showed that initial estimates had included people who were coinfected and those who had cleared Hepatitis C following treatment so their inclusion would not involve any additional cost to that already budgeted.

By December the Secretary of State confirmed that he was content that both people who were co-infected, and those who had cleared the virus after treatment, should be included in the scheme.[897] The parameters as then proposed were confirmed in a submission to the Secretary of State on 6 January 2004 and announced on 23 January 2004.[898]

The position on natural clearers was “No payments to those who have cleared the virus spontaneously[899] but this was changed after a personal intervention by an individual, in an email addressed to Richard Gutowski, in early February 2004. This described how the writer had cleared the virus without treatment, but had carried it in a chronic active state for some 20 years.[900] The email said:

“All its illnesses, the loss of income, the loss of the possibility of gaining any kind of life insurance, the loss of company pension, the stigma that surrounds this infection, Themental stress and worry that came with it for both myself and my family, and the fact that I had to move home because of my fears for my families safety … All doctors in this field who I have spoken with have stated that … it is likely that because of the long period of time I was carrying this virus in it’s active form, I am likely to have sustained some liver damage. Could you clarify, if someone like myself will be included or excluded from this payment?”[901]

The civil servants sought medical advice from within the Department of Health, which said it was feasible that he had cleared the virus even after 20 years. This prompted a rethink, to leave the way open “for those who have cleared the virus way down the line, such as [the author of the email].”[902] This personal intervention thus succeeded where other efforts had not.[903] A press release on 3 June 2004 announced that the Fund would begin processing applications on 5 July 2004 and it confirmed that people who had cleared the Hepatitis C virus spontaneously “after a period of chronic infection” would be covered by the scheme.[904]

The structure of the scheme

The Skipton Fund, as the scheme was called, differed from the two grant-giving charities (the Macfarlane Trust and Eileen Trust) in that it was not a trust, but set up as a corporation. Nor was it charitable as such. Nor was it independent of the Department of Health: it was set up specifically as an agent of the Department of Health. Nor was it dealing with HIV infection and its aftermath, as both Macfarlane and Eileen were. Its focus was Hepatitis C. Being set up formally as neither a charity nor a trust, it had a board of directors, not trustees. A further and important point of distinction was that appeals against the refusal of an application were not addressed internally to the same body as had made the determination, as happened in the Macfarlane Trust, but to a body set up to be independent of the Skipton Fund and, it follows, of the government. Though Nicholas Fish, who was for most of its time in operation the administrator of the Fund, provided support to the Appeals Panel, this role was administrative only and was neither advisory nor decision-making in nature.

Though the Skipton Fund began operations in 2004,[905] the Agency Agreement under which it operated was not finalised until the first version of it was signed on 22 May 2007.[906] Though this was described as an “agreement”, it was open to the Department to make changes to its terms should it wish to do so[907] because the essential relationship between the Skipton Fund and government was that of agent and principal.[908]

The Skipton Fund operated on a UK-wide basis until its closure in 2017, when its functions were transferred to separate blood payment schemes administered by the respective nations.[909]

Administration of the Fund

A secretary and administrator ran the Skipton Fund, supported in part by a financial team shared with other Alliance House Organisations.

Payments by the Fund

There was no discretion as to the amount to be paid. “Stage 1” lump sum payments, initially of £20,000, were made to applicants who could prove on the balance of probabilities that they had “contracted the hepatitis C virus because of receiving blood, blood products or tissue from the NHS prior to September 1991 or, in certain circumstances … from a person who has received such treatment.[910] This expressly included everyone with haemophilia who had “developed” Hepatitis C after being treated with Factor 8 or Factor 9 concentrates, cryoprecipitate or Factor 8 inhibitor bypass activity (“FEIBA”) or plasma (including fresh frozen plasma) or anyone treated with whole blood or any blood component, albumin, bone marrow, intravenous immunoglobulin, or “DEFIX” Factor 9 concentrate.[911] A person was eligible whether or not also infected with HIV.

A further “Stage 2” lump sum of £25,000 was payable to a qualifying person who “has an advanced stage of illness due to hepatitis C virus because of receiving blood, blood products or tissues from the NHS prior to September 1991. In this context, persons with cirrhosis or primary liver cancer and those who have received, or are on the waiting list to receive, a liver transplant are eligible to apply.[912]

The issues which took centre stage for the Inquiry were those of qualification for these two payments. Qualification for Stage 1 payments was a necessary step not only towards receiving such payments but also towards qualifying for Stage 2 payments. Whereas refusal of an application for a Stage 1 payment precluded any payment, a refusal for a Stage 2 payment was much more a “not yet” decision, since it was likely to be on the basis that though the applicant’s liver had deteriorated it had not yet done so to the degree necessary to trigger the payment. Thus this chapter looks first at general qualification for any payment, before considering access to Stage 2.

Qualification for a Stage 1 payment

Not every person infected with Hepatitis C from blood, blood products or tissue as set out above was eligible. A “qualifying person” had to have been alive on 29 August 2003 and to have been treated before September 1991.[913] People who acquired Hepatitis C but had also “spontaneously cleared the virus in the acute stage” and never developed chronic Hepatitis C infection were also ineligible for payments.[914] Though a common understanding of acute illness may be that what makes it “acute” is that its symptoms are particularly severe, in this context “acute” is not linked to “severity”. It is defined by time. An infection is “acute” for six months after which it becomes “chronic”, even if the symptoms during those first six months are mild or even not apparent at all.

The way the scheme was drafted, the burden of proof that an infection had become chronic rested on the applicant.

People were also eligible if, on the balance of probabilities, they became infected by transmission of the virus from a qualifying person. This applied if, at the time of transmission, the person infected was a spouse or civil partner, cohabitant, mother, or son or daughter of the mother from whom the virus was transmitted. The infection must have occurred as a result of sexual transmission, transmission from mother to baby, accidental needle stick injury (limited to the relationships set out, and excluding shared drug use) or by some other route verified by a medical practitioner, again within the relationships set out.[915]

The estate of a person who had died after 29 August 2003 could make a claim in respect of the infection of that person. There was nothing in the documentation to say that that person must have died wholly or partly because of Hepatitis C. However, until 12 January 2006 no payment could be made in respect of any person who had died after 29 August 2003 but before 5 July 2004.[916]

Those bereaved by the death of a qualifying person had no claim as such: they would receive only their entitlement, if any, under the deceased’s estate.

It should be noted that qualification for, and the amount of payment to be made, did not depend on any assessment of the severity of the effects of their infection, apart from whether the applicant had cirrhosis for Stage 2. Though the consequences of infection, generally, were what led to ex gratia payments being thought appropriate, no distinction was made, save as between Stage 1 and Stage 2, between those more seriously affected physiologically, nor any account taken in the scheme itself as to the presence or degree of psychological distress, social or financial disadvantage that resulted.[917]

Application process

In order to apply, the applicant first had to complete an online registration form, providing contact details, bank details and details of any registration at a haemophilia centre. A paper form would then be sent out. This had to be completed by the applicant’s “Hospital Doctor or General Practitioner”. The purpose was to “confirm that the patient has been chronically infected” and also “that the infection most probably arose through treatment with NHS blood or blood products”.[918] There was therefore no opportunity in the application form or process for applicants to provide any direct evidence themselves as to whether they had received blood or blood products prior to September 1991.[919]

The scheme administrator would determine whether the application form had been completed sufficiently (if not, it would be returned to either the applicant or completing clinician) and then either they or one of the directors would determine whether it was successful. No payment was made without the signature of a director.[920]

Part of the reason for this process was that the first administrator of the fund, Keith Foster, was found in 2006 to have defrauded the Fund of some £400,000. After that, security checks were strengthened. Applicants had to provide both (a) their NHS numbers to check that they actually existed as real people, and (b) copies of medical records confirming both their Hepatitis C status and that they had received contaminated blood or blood products within the NHS prior to September 1991. A check was made to see that the doctor’s signature was genuine, and a requirement was imposed upon a successful applicant to furnish a signed receipt. Martin Harvey, who was a director of the Skipton Fund as well as chief executive for the Macfarlane Trust, would carry out random checks.[921]

The consequence of this was that a heavy emphasis was placed upon having records available to show that an individual had received a blood transfusion from which, in the absence of other more likely sources, that person had become infected with Hepatitis C.

Though it was the dishonesty of an employee of the Skipton Fund which led to these precautions, and there had been no criticism of the integrity of any applicant, the result was significant additional hurdles for all applicants to overcome. This was on top of the difficulties people already experienced from Hepatitis C, including (for example) brain fog and excessive tiredness.

Applications accepted and rejected

The following picture emerges from the papers available to the Inquiry:

Number of Cases[922]
applications for a Stage 1 payment 6,712
total applications approved 5,529
approved by the Skipton Fund 5,309
declined by the Skipton Fund and not appealed 622
declined by the Skipton Fund and appealed 443
of those appeals: approved
of those appeals: declined
220
223

It follows that around one fifth of applications were declined; around 80% succeeded. There were a number of reasons why applications were declined.[923] The principal reasons were that the individual was a “natural clearer” (at least 200[924] of those initially declined); that there was a lack of evidence of transfusion and/or lack of medical records (which had been destroyed or were unavailable); that there had been, or was thought to have been, intravenous drug use, and to a lesser extent, that the implicated blood product or transfusion occurred after 1 September 1991. There was a handful of other reasons, none of which occurred in any substantial number: anti-D (an immunoglobulin used to prevent Rhesus disease) injection; the source of Hepatitis C was not NHS blood or blood products; needlestick injury; the infection was not Hepatitis C; the transfusion had occurred overseas; the transmission was by sexual intercourse or it came from being tattooed; or there was a problem with the application form or with time limits.

Of those declined both by the administrator and on appeal, the reasons given for refusing the application differed in nearly a fifth of the cases as between the Fund and the Appeals Panel.[925] This was accounted for by an increase in the number declined because of a lack of evidence of receipt of a transfusion or blood product, and an almost corresponding decrease in the number declined because medical records were destroyed or unavailable; broadly, the other reasons remained the same.

Problems in qualifying for payments

The first problem is a lack of knowledge. When the Fund was first established in 2004, many potential applicants would not have realised that they were infected with, and were suffering from symptoms of, Hepatitis C.[926] The insidious nature of the disease, with symptoms evolving only slowly over time, of a non-specific type when seen in isolation, saw to that. To claim, they would have to be aware, too, of the possibility that a transfusion might have been the cause of their infection. They would not necessarily draw a link between events some 20 or even 30 years before and a diagnosis only recently made, and their GP may well have attributed a diagnosis of hepatitis to alcohol or a fatty liver, or “lifestyle choices” rather than a transfusion. The only evidence there had been a transfusion might have been the patient’s recollection: there might well have been no record of it; if so, a doctor consulted by someone infected would have nothing particular to prompt her or him to ask the patient if she or he had ever had a transfusion.

Those who were aware (a) that they had Hepatitis C, and (b) that they might have been infected by transfusion or transplant, may then have been inhibited by some of the criteria for application. They had to have been infected prior to September 1991. They may have been deterred by the application process. It did not allow, in the first instance, for them to set out their own account. An application form had to be completed by their doctor, except for brief personal details supplied by the applicant. This not only meant that the clinician had to be satisfied that the transfusion was likely to be the cause of the hepatitis infection which had become apparent, but had (after the early stages of the Fund, and after the fraud of the first administrator) to provide records which showed there had been a transfusion.[927] The patient would not routinely be shown a copy of what the clinician had to say. Applicants had to be alive on 29 August 2003, and (at least initially) to have applied for payment from the Skipton Fund during their lifetime, if their estate was to have any claim.[928]

To suffer from “hepatitis” as a consequence of treatment was insufficient. Hepatitis B was excluded. This exclusion is particularly unfair. It persists in the national support schemes to this day. The reason for this was articulated by William Vineall in his evidence: “we think the testing regime that was established, I think in about 1972, for hepatitis B was sufficient to ensure that people with hepatitis B wouldn’t be, you know, subject to the risk of infected blood, and that’s why it’s never been part of any scheme.[929] It is certainly right that in 1972 blood donations were first screened for Hepatitis B throughout the UK. However, the screening tests used then were imprecise,[930] and there is ample evidence from the literature and from the evidence before the Inquiry, that Hepatitis B not infrequently continued to be transmitted by blood at least until the early 1980s when screening tests became much improved.[931] Moreover, the availability of screening was not the only precautionary measure. Avoiding unsatisfactory or risky donors was another.[932] So too was ensuring that transfusions were given only when needed,[933] and then only in no greater quantity than actually required. When a person developed Hepatitis B after a transfusion, there could and should have been a check back to see from whom the donation had come. Records were frequently inadequate for this purpose, or were missing.[934] Considerations such as these are persuasive of the need for any sufficient scheme to include support for those with Hepatitis B as a result of their treatment.[935]

Another exclusion from potential benefit was the limitation to NHS treatment. In the 1970s and 1980s many members of the armed forces served abroad, and they and their families were entitled to the benefit of treatment by military hospitals which were under UK control. Whether they qualified was for a while uncertain, but was later clarified through appropriate wording being added to the scheme.

First issue: did the applicant have a qualifying infection?

This may seem a simple, medical question. In many cases it was, once there was a reliable test for infection with Hepatitis C. But in two particular cases an infection did not qualify for further consideration, whatever its cause might be.

(1) The “cut-off” date

A “bright line rule” (such as that in relation to the date of 1 September 1991 for the Skipton Fund) is often desirable. It may make for administrative efficiency. It is easy to understand by those subject to it, even if they may not like the result. It makes for consistency between would-be applicants.[936] It means, however, that the deserving but exceptional case has no remedy. That is the inevitable result of falling on the wrong side of the line, no matter how much it might generally be agreed that a case has individual merit. That is why many “bright line” arrangements also allow for some discretion to be used to permit the truly exceptional case to succeed. The Skipton directors should have been allowed to exercise discretion for the truly exceptional case. Screening will pick up viral loads only beyond a threshold minimum. In the early stages of incubating a virus, that threshold might not have been reached. If screening for Hepatitis C occurred at that time, it would not reveal the lurking infection and the donation would be accepted. A virus in a donation made during this “window period” would then continue to incubate and to replicate. If the blood donation in which it does this is then transfused, it may then manifest itself eventually in infection. One way of trying to avoid it is ensuring that a “quarantine period” should be allowed for, but the scope for this is limited since blood for transfusion as such has to be used within six weeks at the outside.[937] Further, organs and tissue for transplant were not so easily and readily screened as was blood; and a secondary transmission from someone infected within the period that resulted in a later diagnosis should have, but did not, come within the scheme. A “bright line rule” excluding any donation made after 1 September 1991 as a cause of a person’s Hepatitis C could not accommodate such a case, however deserving it might be.[938]

(2) “Natural clearers”

Whether a person qualified for relief under the fund had to be determined by the administrator and his team and one of the directors.[939] The first question was (a) whether the applicant was infected with Hepatitis C; and (b) whether the cause of that infection was “receiving blood or blood products from the NHS”.[940] In addressing the first of these questions it was not enough to ask if applicants “had ever been infected”, for as a result of the changes made as the outline scheme moved towards implementation it was, rather, “have they been infected for longer than 6 months after the relevant treatment?[941]

Self-reports of symptoms consistent with hepatitis which had lasted more than six months might also be consistent with a number of other conditions, whether temporary or more permanent: but the Skipton application form did not provide any space for applicants themselves to explain what they had suffered, and why they related it to a transfusion or blood product. Situations such as this call for careful review. This suggests a case-by-case consideration. It also calls for a detailed account by the applicant to explain why the infection (as they see it) lasted beyond six months.

Unfortunately, it seems that on first looking at an application in the Skipton office it was often the case that broad generalisations were applied rather than individual focus brought to bear on a particular case. Too heavy a weight was placed on there being a clear indication in medical records that the applicant had shown signs and suffered symptoms[942] after six months from the presumed date of first infection. Some applications were thus most probably rejected because of what tended to be a “one size fits all” approach. It was, perhaps, easier to assume that the medical advice that in general most people who cleared did so within the first six months of infection was applicable to all.[943]

The evidence of Professor Howard Thomas[944] was that some 20-30% of the infected cohort cleared the virus naturally within three to six months of infection. Statistics suggested that only 1% did so after that.[945] Accordingly, if the evidence available to decide an application showed only that the applicant had once been infected, but no longer was, it is – viewed as a matter of statistics alone – more likely that the applicant was one of the 20-30% group than the 1%. It would be 20 to 30 times more likely that the individual never had a chronic infection. In the absence of some evidence of symptoms beyond the six month cut-off, no individual – even if belonging to the 1% – would hope to succeed.

There is a conceptual problem in taking this approach. The underlying assumption is that the 1% cohort typifies applicants to the Fund just as it typifies the generality of those who are infected with Hepatitis C. Yet this misses the fact that there is an important distinction: those who applied to the Fund would have to have had a reason to cause them to apply. The rest would not have had that reason. To be an applicant, there must have been something that sparked them into making that application. If they had suffered nothing remarkable in the way of symptoms, there would have been nothing to alert them to the possibility they may have had Hepatitis C, let alone that it was linked to a transfusion in their past.

Focussing upon the fact that the applicant thought, or had been told, that they might well be entitled to a payment from Skipton, why would they think this? Many would not have experienced symptoms within the first six months. Often the initial symptoms of Hepatitis C infection are unspecific, and might be caused by a number of common conditions – as a result, an individual could suffer all the symptoms of Hepatitis C, and never become aware of the fact that all their symptoms had a single, viral cause. So, usually, there would have been little to alert the individual to the possibility that they might have had Hepatitis C. Yet at some stage before making their application they must have been alerted to that possibility. By definition they would not have been tested for the virus after the six-month watershed between acute and chronic infection until they had a test which showed both signs that they had had an infection, and no sign it was still active. If they had been tested after the six-month watershed, and had proved then to have an active infection, it is plain that no question mark would hang over whether they were natural clearers or not. They would have suffered a chronic infection, even if it no longer remained active. They would be one of the small number of “late clearers”.

The chances are heavily against individual applicants learning there might be money to be had, thus arranging to be tested to see if they had ever suffered from the infection that triggered payment, and then managing to persuade their own clinician that it was likely to be the case that they had had symptoms which persisted for more than six months after a relevant transfusion. The “something that sparked the application” might indeed be the fact that they had been tested and realised that at some time previously they had been infected by Hepatitis C. This might be the consequence of seeking to donate blood, and then being told of the possibility of past infection. But otherwise a clinician would have had to arrange for such a test to be done and that clinician would have had some basis to suspect that Hepatitis C infection might be a possibility, even if only to seek to discount it as the explanation of some current problem: else why test for it, especially since such tests were not routine? A factor in a clinician’s decision to ask for such a test might well have been an applicant’s own retrospective realisation that they had suffered adverse effects after the six-month watershed, had wondered if these might be the result of some infection, and asked their doctor. In either case, there would have been some reason suggestive of continuing infection to seek the test.

Although applicants are thus necessarily to be distinguished from others who suffered Hepatitis C and had ceased to do so, by the simple fact that they were applicants, there was no space in the application for them to say what it was that had prompted them to apply.

The effect of the practice in respect of natural clearers was thus to exclude any prospect of payment to a whole group, even though it was known that a minority of that group would probably have suffered chronic infection. Evidence that might have helped the individual establish this (such as evidence of symptoms indicative of a continuing infection) might have made the difference. It would have had to be put into the balance against the percentage of natural clearers.

This introduced a difficulty for clinicians who had to certify answers to questions asked of them in Part 2 of the form of application.[946] The first question in Part 2 was (a) “Has an HCV antibody test ever been positive?” asking for a YES/NO answer.[947] It then asked: (b) “Is the applicant currently PCR positive?”again seeking a YES/NO answer.[948] If that was answered “YES” it would be clear that the applicant was eligible providing that they had incurred the infection through their treatment. It is the next two questions which combined with the first two created problems. Essentially, they asked whether the applicant tested negative as a result of past or ongoing interferon-based treatment, and whether there was evidence (radiological or pathological) that they were chronically infected after the first six months of the illness had passed.[949]

This had the potential to eliminate those who had cleared the virus from their system after more than six months, but had been left with devastating after-effects from it: one such example was someone whose eligibility for Stage 1 was in doubt but who qualified for Stage 2 since they had developed cirrhosis of the liver.[950]

The problem was taken up by Peter Stevens who had been charged with the responsibility of helping to get the Fund up and running. He became concerned about an inconsistency of approach within the Fund on this issue. One of the directors of the Fund, Elizabeth Boyd, who worked at the Royal Free as a welfare rights officer, had spoken there to Professor Christine Lee. Professor Lee apparently had told her that no one who was PCR negative but had not been treated would have raised liver function tests, evidence through liver histology or radiography, other symptoms of chronic Hepatitis C, or been previously considered for treatment.[951] Elizabeth Boyd was not, therefore “passing any ‘natural clearers’ ” whereas Peter Stevens as a director had passed “quite a lot”of “natural clearers” (ie those who had cleared the virus without receiving treatment, but had done so after the first six months had passed since the initial infection). The Fund directors had thus been adopting an inconsistent approach.

Peter Stevens proposed to Richard Gutowski that the distinction between those who cleared viral infection following treatment and others who cleared naturally should be abandoned.[952] He understood that the reason Professor Lee was not passing any spontaneous clearance applications to the Fund was that she believed “the whole attempt to exclude them to be logically or scientifically flawed.[953] Other haemophilia centres took a different approach; some echoed the Royal Free’s position on it.[954]

A teleconference was arranged by the Department of Health to discuss the inconsistency in the reviewing of natural clearers by clinicians. It took place on 21 September 2004.[955] Professor Lee spoke about her concerns regarding inconsistency in the reviewing of natural clearers. Clear instructions were needed to eliminate the disparity. She recalled a case where one of her patients had taken 25 years to clear, with samples fluctuating between positive and negative throughout. She thought the patient was ineligible. However, the group disagreed: the individual must have cleared in the chronic phase and so was eligible. It was suggested that doctors who were now completing the forms were unlikely to have been treating the applicants at the time they were infected, and so would be unable to report accurately as to whether their patient had shown any signs or reported symptoms consistent with ongoing infection beyond six months – and then, as recorded in the notes of the meeting, that “asking the patient is not viable given the £20,000 at stake.[956] This is open to the criticism that it assumed patients would not be straightforward. Further, it does not seem to have been suggested that appropriate questions might have helped provide answers from the applicant, which would help a decision-maker to determine the issue. This was a missed opportunity to improve the quality of information given by the forms.

However, the overall message from the meeting appears clear from the record. It emphasised that acute stage clearers were not eligible[957] whereas chronic stage clearers were eligible. It was decided to reiterate to Professor Lee that patients who cleared in the chronic phase were eligible for payment.[958]

This might be thought to have sorted the problem. However, when Richard Gutowski emailed Peter Stevens to explain the conclusions that had been reached he said“As far as spontaneous clearers are concerned … our position remains unchanged. They do not come within the scope of the Scheme.[959] This was inaccurate, since it did not reflect the distinction, clear to a reader of the note of the meeting, which was to be made between those who had cleared viral infection during the acute phase (the first six months) and those who had cleared later, as stated on the application form.[960]

An email exchange followed. Peter Stevens responded to Richard Gutowski that there were about 80 applications in which the answer to the fourth question on the application form (“Was there evidence that they had been chronically infected after the acute phase had passed?”) had been yes and that unless Professor Lee advised her fellow directors differently that they would “presumably have to fail the lot.[961]

There followed further correspondence between Richard Gutowski and Peter Stevens in which the former said at one stage “Ministers have made their decision[962] and Peter Stevens pointed out that a number of centres considered that the distinction between spontaneous clearers and others was ill-founded and so would not “attest” to the evidence the Department of Health required.[963] This episode[964] ended when Peter Stevens was able to write to Dr Mark Winter that “Gutowski was leaping up and down and telling us to pay the natural clearers with chronic stage infection evidence at once … I am about to call Gutowski to say that we will do what we’re told … So your discussions [at the United Kingdom Haemophilia Centre Doctors’ Organisation] might need to focus on what to do about those left out.[965]

The Agency Agreement under which the Skipton Fund operated was not finalised until the first version of it was signed on 22 May 2007. This defined the position in respect of “natural clearers” in these terms: “People who acquired hepatitis C but spontaneously cleared the virus in the acute stage and did not develop chronic hepatitis C infection are not eligible for payments under this scheme.[966] Since it also defined people as eligible if they “became infected with the hepatitis C virus, and developed chronic infection”the dividing line is clear. The problem remained a factual one: had the individual applicant continued to suffer infection for more than six months after the causative treatment?

This account reveals three problems. First, the uncertainties around natural clearers were such at the start of the Fund’s operations that a number of applicants were not put forward by their doctors, but would qualify under the rule as clarified. There is no record of any orchestrated attempt to invite them to re-apply; the opportunity will almost certainly have been lost for good. Second, although in the main those who cleared Hepatitis C would statistically be likely to do so within the first six months there was no opportunity for a person to explain why they considered that they had continued to suffer Hepatitis C infection beyond six months, nor could the Fund examine their evidence on the point.[967] This feature was a function of the design of the Fund, and the way in which the Department of Health set out to operate it.[968] It represents a significant drawback. Third, attention was drawn during the to-and-fro about natural clearers to cases in which psychological or psychiatric damage had resulted, though no physiological damage may have accompanied it. One example was a case (“S”) of one of the claimants in A and Others v the National Blood Authority, in which a 17 year old who was infected at age 7 had been awarded compensation by the court for an adjustment disorder;[969] and Professor Lee had recorded her concerns from her experience of her own patients about the psychological effects of the uncertainty of their knowing whether they had, or had not, cleared the virus before tests became available to show that they had.[970] Thus long-lasting effects, and their consequences, will have been suffered by some, but were left unrecognised by the Fund in its final form.[971]

Second issue: the cause of the infection

A more difficult question than whether an applicant had been infected was knowing, and then being able to prove, the cause of the infection. Since, first, the onset of infection was typically not marked by any symptoms indistinguishable from a short-term cold or bout of flu, or repeated tiredness, before the range of symptoms became increasingly serious and concerning, and requiring of immediate attention, and, second, the transfusion (if that were the cause) typically was given some 20 years or more before it might lead to cirrhosis, it might well be that a sufferer would not necessarily link the two. Records which identified a particular blood transfusion were rare; and even the fact of having had a blood transfusion would often go unrecorded in such records as survive.

As can be seen from the figures quoted above, the majority of applications were accepted. However, what is troubling is that out of those who appealed after refusal by the administration (“the Office”) very nearly half (49.6%) succeeded.[972] This suggests that refusals were correctly made only half of the time. It indicates serious flaws in the way in which the system operated. There are three possible reasons for this: that the Appeals Panel was more generous than perhaps it should have been; that the decision maker first time round was misapplying the tests; or that information was available on appeal which was not considered first time round. The Inquiry had the advantage of hearing both from Nicholas Fish, who was responsible for the first line decision, and Mark Mildred who chaired the Appeals Panel throughout. Their evidence leads to the conclusion that it is likely to have been a combination of the second and third factors mentioned above.

Nicholas Fish is not personally to be criticised for this. He began working for the Skipton Fund in November 2004 as a temp. He was the assistant to the then administrator, helping to write letters, gather evidence, answer emails and carry out general administrative duties.[973] When the first administrator was found to be defrauding the fund in 2006, the need for some continuity meant that Nicholas Fish succeeded to the job. The systems he operated were those he inherited, and had experience of applying.[974] For him, it was largely a case of conducting business as before.[975] He did not ask many searching questions about whether the process he adopted was correct, nor how appropriate his decision-making was, largely because he understood, generally, that these were what the Department of Health expected of someone in a position such as his. The Skipton Fund was an agent of the Department, and was expressly forbidden in the Agency Agreement to raise matters of policy with the Department. It was left to his judgement whether or not to discuss any given case with a director. In those circumstances, he did as had previously been done.[976]

The application form required the clinician who was completing most of it to specify any records which substantiated the transfusion upon which the claim was based, to provide a “YES/NO” answer to the question “If the date of infection cannot be proved, do you believe infection occurred before 1 September 1991?”, and it finished with the “roll-up” question: “In your view is it probable that the infected person’s HCV infection was acquired in consequence of NHS treatment received before 1 September 1991?[977]

For both people with haemophilia and others what was required was proof – on the balance of probabilities – that NHS treatment was the cause of infection by Hepatitis C. In the case of an applicant with haemophilia, the assumption could more easily be made that the most likely cause of hepatitis was the receipt of coagulation replacement therapy by blood product. For other people however, the way in which causation had to be proved in practice was flawed. The test was that the applicant’s doctor not only had to say that they had seen records but, in the aftermath of Keith Foster’s fraud being uncovered, they were also expected to provide a copy of the relevant parts of the records, if they existed.

There were three problems with taking this approach. First, records were not always available or had been lost or destroyed. In a number of cases, the hospital where the treatment was said to have been administered no longer operated, and the records were unlikely to be traceable if they ever existed. Second, where GP records for the time were available, they may have included discharge letters which may have referred to transfusions, but equally may not.[978] Third, an applicant would be unlikely to know about and apply to the Fund unless they believed that they had had a transfusion.[979] Yet there was no place on the application form for applicants to set out the reasons why they thought this was the case – for instance, what they had themselves experienced, or friends or family might have reported to them and might be able to substantiate, or from what they recollected a nurse or doctor had said to them at some stage during their treatment.[980] Further, the guidelines for staff assessing applications did not permit them even to consider it as evidence, though it plainly would be taken into account in any legal context.

A standard of proof on the balance of probabilities is a deceptively simple test. Is the event more likely to have happened than not? That is to be determined by the evidence. What a witness has to say is evidence: it may often be overlooked that a person who is witness to their own treatment is therefore capable of giving evidence about it themselves. They are a witness, even if not independent. Unless their evidence is not capable of holding belief (for example, it is inherently improbable, there are particular reasons for not believing it or the witness giving the account, or there is evidence to the contrary which on balance is stronger) that evidence is sufficient to satisfy the standard of proof. The recollection of someone who was there, who recalls at the time having understood for good reason that they had a transfusion, is likely in most cases to outweigh the fact that the available records do not mention any such transfusion as having taken place.

The eventual decision is to be reached not by taking a view as to whether the approach should be permissive or restrictive, but strictly by reference to whatever evidence there is. If there is, truly, no evidence that there was a transfusion then the burden of proof cannot be satisfied. A “50-50 situation” does not tip the balance of probability in favour of a transfusion being the cause. If, however, there is some evidence, then it becomes a question of whether there is any evidence to counter it, and if so how strong that is. It cannot be assumed that applicants are telling untruths because they stand to benefit.[981] Indeed, they will all have satisfied the criterion of showing that they have a diagnosis of Hepatitis C. It came from some cause. What they had to show was simply[982] that a transfusion was more likely to be the cause than any other factor.[983]

Skipton operated two policies in practice: the first that, in general, in the absence of medical records showing either expressly or by necessary implication that there had been a transfusion at a time which might conceivably give rise to symptoms when they first emerged, a claim would be rejected by the office. The approach of seeking medical records to substantiate a transfusion assumed that there should be such records in existence. This was a wholly unrealistic assumption. Some could be found; some could not. Some had been lost or destroyed through no fault of the applicant. It also assumed that the record would show whether there had been a transfusion or not. This, too, was an assumption of perfection, whereas the truth was known by at least some in the Department of Health to be different.[984] Some records did, but some did not. In the absence of any NHS transfusion records, reliance might have been placed on a discharge letter to a doctor. It could not, however, be assumed that such a letter would refer to a transfusion. It was unrealistic to suppose that every detail of treatment would be recorded in such a letter. This also assumes that a letter sent to a GP, as discharge letters were, without a copy being sent to the patient in those days, would necessarily find its way into the medical notes. This did not always happen.

In short, the combination of placing reliance on the existence of records of a transfusion, whilst in practice excluding (and not requesting) whatever evidence the applicant could offer to show that one had been given, was indefensible: a person infected by a failure of treatment from the state was now faced additionally with a failure of record keeping by the state, which led to a failure of their claim because of the inadequacy of the system set up by the state.

The second policy which operated was to regard some material as excluding a claim altogether, without exception. There were two main examples of this. One was where it was apparent that the applicant had used recreational drugs in the past. Where this involved intravenous drug use the claim was rejected almost as a matter of course. However, some applicants who admitted to intranasal or oral drug consumption, but not to injection, were also denied on the basis of intravenous drug use, even though their medical records contained no reference to any such use.[985]

The second example of note was where the claim was for hepatitis caused by the administration of anti-D. This too was likely to be rejected unless there was also evidence of blood transfusion.[986]

These two exclusions, applied as though they were absolute bars to a claim, relied upon the way in which two expert reports were interpreted: respectively the Ramsay Report in respect of intravenous drug use, and two letters of advice from Dr Patricia Hewitt of National Blood Transfusion Service in respect of anti-D.

As to the former, Dr Mary Ramsay of the Health Protection Agency Centre for Infections was asked for advice by Nicholas Fish, acting as secretary to the appeals panel, on the extent to which science and statistics showed that injecting drug use for less than two years was likely to be a cause of an Hepatitis C infection, where the sufferer also had a history of blood transfusion. She reported on 19 March 2007. Her conclusion was that:

“Overall, the risk of hepatitis C infection with short term injecting in the UK is poorly documented, and is likely to have varied geographically and over time. Although data on one-off or casual injectors is absent, evidence from many countries supports the belief that the risk of acquiring hepatitis C in the early period of injecting is high. The estimated probability of transmission from single episodes of needle and syringe sharing also appears to be substantially higher than the risks associated with a single transfusion of unscreened blood. On an individual basis, it will be difficult to assess the risks associated with single episodes of injecting where sharing is denied, but recent studies suggest that the incidence of hepatitis C in injectors who deny sharing is around half of that observed in those that do report such behaviour.”[987]

This material gives pause for thought. Although it is clear that studies suggest that having ever injected drugs is a risk factor for Hepatitis C, a simplistic conclusion that any drug use would always be the more probable cause of an infection than a transfusion overlooks the qualifications in her summary and would inevitably be unfair to some applicants.[988] Intravenous drug use rightly had to be factored in to any assessment of probability. But fairness also places central importance upon the assessment of the quality of recollection of the individual concerned. It is difficult to see how such an assessment could be done fairly on paper (for instance, where an applicant insisted that they had always used a fresh needle, or had injected on one occasion only, well before the very first symptoms of hepatitis were apparent) if the likely conclusion from the application as it stood on paper was that the account should be rejected. Rather, fairness would call for a short hearing during which the individual would be invited to give an account, and the panel would assess its reliability. Unfortunately, at no stage during the Skipton Fund procedures (either when the application was first considered by the Office, or secondly, if appealed, on appeal) was there any room for an account to be given personally.[989]

As to anti-D, Dr Hewitt wrote to Keith Foster on 24 February 2005. She said that anti-D immunoglobulin produced within the UK “has been used over many years and has an unparalleled safety record with regard to transmission of viruses. There are no established reports of infection transmission by the intramuscular product produced within the UK since treatment began.” She went on to note, on the other hand, that there had been well-documented transmission episodes from anti-D produced outside the UK. The most well known of these involved anti-D prepared by the Irish Blood Transfusion Board during the 1970s and early 1980s. It had transmitted Hepatitis C to a large number of women treated with anti-D after childbirth. She commented that they involved a “completely different method of manufacture from that used within the UK” and that they were intravenous preparations. Since some Irish anti-D had been imported into the UK and used on a named patient basis on a small number of women, she added “There may be a few women who received product manufactured outside the UK, which might have presented a risk of hepatitis C infection. In order to totally exclude this scenario, it would be necessary to know whether there are any reasons to believe that non-UK product was used. This would only have been in exceptional circumstances and not for routine treatment during and after pregnancy.”[990]

On 15 July 2010, Dr Hewitt wrote again to Nicholas Fish. She reported that prior to universal Hepatitis C screening of blood and plasma donations being introduced (ie prior to September 1991, the cut-off date for claims to the Skipton Fund) “more than one half of the intramuscular preparations of immunoglobulins contained detectable HCV RNA.” Despite that, she said that transmission of the virus had not been documented as having arisen from the intramuscular preparation prepared according to the Cohn fractionation process used in UK manufacture. This was different from the manufacturing process for intravenous immunoglobulin. She went on to describe “an unfortunate experience”. This was the arrangement by the Blood Products Laboratory (“BPL”) of a comparative study of intramuscular immunoglobulin and intravenous intramuscular immunoglobulins. Both had been manufactured by BPL. All 12 patients who received the intravenous preparation had previously received intramuscular therapy without apparent ill effect. Nevertheless, all 12 developed non-A non-B Hepatitis soon after starting the intravenous treatment. None of those receiving intravenous muscular product did so. The consequence was that BPL thereafter ceased making intravenous immunoglobulin preparations.[991] There may have been some occasions when IV preparations prepared in Ireland (which were risky, just as the BPL product had been) were given, but these appear on available material to have been few in number.

Neither the Ramsay Report nor either of the two letters from Dr Hewitt were offered to applicants whose applications were rejected on the basis of their contents. They were thus ignorant of the detail of the reasoning that had led to the rejection of their claims, and unable to challenge that reasoning. Nicholas Fish told the Inquiry that if they had asked for copies of the letters and reports, they would have been provided.[992] It remains unclear why the onus was placed on a disappointed applicant, who was by definition suffering from the effects of Hepatitis C,[993] to ask for copies rather than on the Fund to provide them in the first place.

Stage 2 payments

Someone who already qualified for a Stage 1 payment met an essential requirement for one under Stage 2. They had shown that they probably suffered chronic Hepatitis C as the result of relevant NHS treatment. The Agency Agreement said that a Stage 2 payment would be made to such a qualifying person who had “an advanced stage of illness due to hepatitis C virus because of receiving blood, blood products or tissues from the NHS prior to September 1991.” What precisely amounted to “an advanced stage of illness”? It was said: “In this context, persons with cirrhosis or primary liver cancer and those who have received, or are on the waiting list to receive, a liver transplant are eligible to apply for a stage 2 payment.[994]

These categories were the result of advice from an advisory group on hepatitis which reported in 2003 to the Department of Health. Professor Thomas was one of the members. The note of the meeting recorded that “the experts were asked for their initial thoughts on the medical trigger for the second (higher) payment. It was felt that this should be a recognised stage of the disease, rather than subjective symptoms of illness.”[995] In his oral evidence to the Inquiry Professor Thomas said “we were looking for objectivity, really, something that would allow whoever to implement this with a solid break-point, really, when you move from stage 1 to stage 2.”[996] It was also felt that there would be something of a marked change once cirrhosis developed. This understanding was slowly overtaken by developments in medical knowledge. He said that realisation dawned on two matters: first, that a number of those without cirrhosis developed depression and brain fog, and, second, that the trigger point should not be left too late, because, once cirrhosis began, there would be an enhanced risk of liver cancer even if the underlying infection were then cleared.[997]

As a consequence of these improvements in understanding the nature of the progression of the disease, what had seemed like a logical bright line rule was no longer so justifiable. It could now be seen as ruling out claims from those who were symptomatic, but who did not yet have cirrhosis. In not distinguishing between the symptomatic and the asymptomatic it seemed to have become unfair. Moreover, those whose infection had been diagnosed but who were pre-cirrhotic often underwent treatment. Until the 2010s, this usually involved interferon, often pegylated[998] and more often than not this was coupled with ribavirin. There is no doubt that this treatment gave rise to serious, often close to horrific, side-effects in most cases. Yet it was often ineffective.[999] Usually the treatment had an immediate negative impact, and often gave rise to persisting problems. These were not merely physical, since there was also the psychological impact of having undergone a lengthy period of treatment[1000] suffering very difficult side-effects, seeing its effect on partners, family, close friends and work, only to learn it had all been futile. Though the disease itself might not yet have resulted in significant fibrosis, for anyone treated who had the persisting after-effects of treatment with interferon, or interferon and ribavirin, highly unpleasant and sometimes devastating symptoms remained. The reasons for thinking that a clear line could be drawn between Stage 1 and Stage 2 in terms of symptoms and effects on life could no longer be maintained. It was far more a matter of degree. The Agency Agreement was slow to reflect these developments, by recognising that a distinction should be drawn between the levels of payment for those who were comparatively asymptomatic, or whose symptoms were limited, and those who, though not (or not yet) cirrhotic, had significant symptoms. It was amended in 2012, though the amendment was relatively limited: the definition of when a Stage 2 payment should be given now included the infected person developing B-cell non-Hodgkin’s Lymphoma where that had arisen after the person contracted Hepatitis C.[1001]

The Archer Inquiry report[1002] led to a significant uprating of the payments to be made. The Secretary of State announced in January 2010 that:

“Under new arrangements that we will introduce, this second stage payment will increase from £25,000 to £50,000 … In addition, we will also introduce a new, annual payment of £12,800 for those with hepatitis C who reach this second stage. This is the same amount as those who were infected with HIV receive. Those infected with both HIV and hepatitis C from contaminated blood will now receive two annual payments of £12,800 if they meet the stage 2 criteria – one payment for each infection – along with the respective lump sums. All annual payments that are made, both to those so infected with HIV and to those with hepatitis C, will now be uprated annually in line with the consumer prices index to keep pace with living costs.”[1003]

He also announced that a posthumous claim of up to £70,000 could be made on behalf of those infected with Hepatitis C who died before 29 August 2003. Previously, they had been excluded from the scheme.

Thus far, the Fund as it operated in each of the four nations of the UK was essentially the same. However, a further amendment followed in 2016.[1004] This now made specific clauses applicable to each nation. Scotland now decided to provide a top-up payment of £30,000 for those at Stage 1. To qualify for this a person had to have been alive from 1 April 2016 and not be “eligible for a Stage 2 payment of any sort”. Scotland also provided for a Stage 2 payment of £50,000 to be made to a person co-infected with HIV if they had not already received a Stage 2 payment.[1005] England and Wales provided a bereavement payment of £10,000 if a contributory factor to the person’s death was Hepatitis C (or HIV if co-infected).[1006]

Annual payments were extended to people who had received Stage 1 payments as well as Stage 2.[1007]

The difference in payment levels between nations meant that it became more important to identify the nation responsible for the payment. The relevant country for the purposes of determining which payment a claimant was entitled to was, in summary, the country in which the claimant was treated (ie with the blood or blood product which was causative of the infection), with the proviso that where there was insufficient evidence to identify which country that was, it was the country in which the claimant first presented for treatment.[1008]

Apart from Scotland, therefore, none of the jurisdictions tangibly recognised the developing understanding of the severity of the symptoms suffered by those who had not yet developed cirrhosis. Their livers may have been slowly beginning to decompensate, but no additional payment was forthcoming.[1009]

It was also recognised only slowly that for those who were not, or not yet experiencing cirrhosis, the single payment was insufficient support. What was, in effect, a third category was necessary, a special appeal mechanism, which became known as the Special Category Mechanism. This was not, however, introduced during the time when the Skipton Fund operated.[1010]

Eligibility for a Stage 2 payment

Eligibility generally required the establishment of criteria which were objective rather than subjective. This was seen as a clinical question. To establish that there was indeed cirrhosis, rather than there being increasing fibrosis of the liver which had not (yet) reached the level of cirrhosis, might most accurately be assessed by a biopsy. However, biopsy procedures are invasive, may often be painful, and take time to arrange: the results cannot be as quickly determined as those of other more readily funded and quickly available tests. Professor Thomas told the Inquiry that (absent biopsy) the ideal way of determining whether the Stage 2 threshold had been achieved was to use data already collected for the patient’s care.[1011] This enabled the determination of the patient’s Aspartate Aminotransferase to Platelet Ratio Index (“APRI”) score. This score is determined by the relative levels of Aspartate Aminotransferase (“AST”) in the blood (as the liver deteriorates, more AST, which is a protein, is discharged into the bloodstream and so levels of AST increase measurably). At the same time, where cirrhosis is present, the number of platelets in the bloodstream[1012] decreases. The numerical measure of the APRI score is obtained by using the platelet count as a divisor for the level of AST in the blood. If the AST increases, and the platelet count decreases, the APRI score rises. This can be combined with a second relative test: the ratio of AST in the blood to Alanine Transaminase (“ALT”). Where there is cirrhosis, the AST level increases more than the level of ALT. The change in ratio is thus indicative.

Further information to support a diagnosis could be obtained from ultrasound or CT scans which had already been performed on a patient, and had been recorded in their notes; and where there had been an endoscopy this could show whether there were varices in the gullet. If these were present, they indicated portal hypertension, probably caused by a developing fibrosis of the liver.

Fibrosis is a state of scarring. Scarring by its nature is not flexible. As internal scarring increases, so the flexibility of a liver diminishes. A cirrhosed liver is stiff, whereas a normal liver is pliable and soft. When fibroscans became available, which measured the degree of stiffness in a liver, they were therefore also useful diagnostically. A fibroscan produced a numerical value.[1013]

Before Professor Thomas became a director,[1014] later to be joined by Professor Geoffrey Dusheiko (from 2013 onwards), Nicholas Fish sought advice from Elizabeth Boyd and her contacts at the Royal Free Hospital as to medical issues including whether cirrhosis was present.[1015] His practice was either to accept a claim showing that cirrhosis was established on a balance of probabilities, or to defer it (pending further material showing that there now probably was cirrhosis). Where their applications were deferred, applicants were told that if anything changed, and if they had further tests to rely on, they were welcome to reapply.[1016]

As noted above, where a person infected with Hepatitis C had died, their estate would be entitled to payment if that individual had reached Stage 2 before dying. Since that person might not have been assessed for the presence of cirrhosis during their lifetime, the Fund had to develop a means of determining whether this had probably happened. With the help of Professor Thomas the Fund created a model to help it do this. It distinguished between people who were infected solely with Hepatitis C, on the one hand, and those who were co-infected with HIV on the other – the model estimated the likely speed of progression from infection to cirrhosis, which was faster in the latter group. In March 2013, as fibroscans became more commonly used, the Department indicated they were satisfied with the model of progression which Professor Thomas had created. Some 40 applications from the estates of co-infected people, which had already been determined on the basis that cirrhosis had probably not yet developed, needed to be reviewed in the light of the adoption of the model.[1017] The likelihood is that many had been declined when they should have been accepted.

In summary, the assistance provided through the Skipton Fund to those with Hepatitis C who were not co-infected with HIV was limited.[1018] Progressive changes in the level of payments made to beneficiaries through the national blood support schemes since the Inquiry began, implicitly recognise this.[1019]

The Skipton Fund Appeals Panel

A body independent of Skipton was set up as an appeal body to reconsider decisions made by the Skipton Fund. The Skipton Fund Appeals Panel held its first meeting on 3 October 2006. It was chaired by Mark Mildred. He was an experienced solicitor who had previously been involved in the litigation brought by people with haemophilia who had contracted HIV, and had informally advised the claimants’ legal teams in litigation concerning Hepatitis C and variant Creutzfeldt-Jakob disease, as well as having fulfilled a number of part-time judicial roles.[1020]

The terms of reference for the Appeals Panel notified to Mark Mildred as part of the information pack he received prior to appointment said:

“The role of the Appeals Panel is to reconsider the cases of any claimants who appeal against individual decisions made by the Skipton Fund. The Panel will look at how the decision was reached and examine all available evidence, or seek further written evidence where necessary, in order to either confirm or change the Skipton Fund’s decision. In considering the evidence the Appeal [sic] Panel will look solely at the written evidence and will not seek personal attendance. The Panel will not be able to consider appeals against the ex-gratia payment scheme itself, but only examine the process to determine the claims within the terms of the scheme.

Appeals may be made against decisions concerning both stage 1 and stage 2 payments. For stage one appeals, the Panel will need to determine whether, on the balance of probabilities, chronic hepatitis C infection resulted from receipt of NHS blood or blood products, and for stage two appeals, the likelihood, on the information provided, that the claimant has developed cirrhosis or primary liver cancer.” [1021]

The Panel was to consist of five members: a legal professional, three medical members (GP, haematologist and hepatologist) and a lay member. Initially the medical members were Dr John Dracass (the GP member), Dr Hewitt, and Professor David Mutimer. The lay member was Annie Hitchman.[1022]

Mark Mildred was not initially given, nor did he ask for, a copy of the Agency Agreement under which the Skipton Fund operated under the Department of Health.[1023]

It was open to the Appeals Panel to receive evidence over and above that considered by the Fund itself. In contrast with the Fund, it took evidence from applicants, though it did so only in writing: the terms of reference set out above precluded oral testimony. It was not limited to asking whether the decision of the Fund had been reached by an appropriate process but instead exercised its own judgement as to whether, on the evidence available, a claimant appealing against an adverse decision in respect of a Stage 1 payment had probably been infected with Hepatitis C as a result of receiving blood or blood products from the NHS, and whether a claimant appealing against an adverse decision in respect of a Stage 2 payment had probably developed cirrhosis.

In general overview, the Skipton Appeals Panel worked well. It had no hesitation in reaching a conclusion different from that reached by the Office. Indeed, in around half of the cases it did so. The process was relatively informal for an appeal, to its advantage. It was set no targets. It had no budget to which it had to conform. There were no time limits for appealing. There was no set application form by which to do so. The information which was given to it could be added to. The panel met quarterly. A guidance note was provided to applicants.[1024] It made it clear the panel welcomed a personal statement (the Skipton Fund itself did not do so) and allowed for evidence from any witnesses who could give contemporaneous evidence of a transfusion, or its immediate reporting, such as relatives or hospital visitors. The guidance note referred to advice which was said to show that the chance of getting Hepatitis C from even the smallest degree of intravenous drug use was many times greater than the risk of getting Hepatitis C from a transfusion. It did not, however, indicate that a copy of that advice might be obtained from the Office, let alone provide a copy. Nor did it do likewise in respect of intramuscular anti-D.

A particular weakness of the scheme (for which the Appeals Panel itself was not responsible) was the fact that it would not hear evidence from the individual personally.[1025] A further weakness was the habit of the panel giving only short reasons for a refusal. Mark Mildred was accustomed from his work in other contexts, to giving more detailed judgements, but was told by Nicholas Fish when he began work and asked what sort of decision was wanted, to provide “A letter, keeping it as brief and simple as you can.[1026] Sometimes such a letter lacks the detail which makes it possible for an individual to put matters right if part of the reasoning is clearly and demonstrably in error.

In general, however, within the constraints imposed upon it, the independent Appeals Panel acquitted its task well.

Commentary

This chapter has focused on the particular constraints within which, once established, the Skipton Fund operated. The delay in establishing any form of financial support scheme for those infected with Hepatitis C is considered elsewhere in this Report, as is the inadequacy of the approach of successive governments to the question of compensation.

As set out in the narrative above, there are a number of features of particular concern regarding the application process to the Skipton Fund for the Stage 1 payment.

First, there was no opportunity in the application form or process for applicants to provide any direct evidence themselves (or evidence from friends or family) to demonstrate that they had received blood or blood products prior to September 1991.

Second, a heavy emphasis (which, unfairly, became more onerous still following the fraud perpetrated by the Fund’s first administrator) was placed upon there being records available to show that an individual had received a blood transfusion from which they had become infected with Hepatitis C. The reliance on medical records disadvantaged applicants whose records had been lost or destroyed through no fault of their own and failed to recognise that the absence of a record of transfusion did not mean that no transfusion had taken place – rather it reflected the practical reality that records of transfusions were often not made and/or often not reflected in a GP discharge letter.

Third, this lack of records will inevitably have led to applications being declined when they should not have been, because of a lack of evidence of transfusion or lack of medical records. Although the appeal process worked reasonably well, that was no substitute for a system which ensured that all relevant evidence could be considered by the Fund in the first instance, and there are likely to have been applicants who did not pursue an appeal but whose applications would have succeeded had the right approach been taken to evidence. There was, moreover, a central flaw in the appeal process, which was the lack of any scope for any kind of oral hearing, which was unfair.

Fourth, in practice the Fund operated a policy which regarded any possibility of intravenous drug use as excluding a claim altogether, in reliance upon the Ramsay Report. This was unfair in two respects: firstly, there was no scope for the individual to be invited to a short hearing where their evidence about possible drug use could be evaluated, and secondly, unsuccessful applicants were not given a copy of the Ramsay Report. This left them ignorant of, and unable to challenge, the detail of the reasoning that had led to the rejection of their claims. The failure to provide Dr Hewitt’s letters, on which the Fund relied, to reject anti-D claims, was likewise unfair.

The criteria for qualifying for the Stage 2 payment were, as originally applied, too narrow, with the focus being on a recognised stage of liver disease. They ruled out claims from those who were symptomatic, but who did not yet have cirrhosis, and those who although pre-cirrhotic had undergone treatment which had not only had dreadful side-effects but often gave rise to persisting problems. There was in short insufficient recognition of the severity of the symptoms suffered by those who had not yet developed cirrhosis.

The exclusion of people who had been infected with Hepatitis B was wrong. So too was the exclusion of claims from the bereaved and from estates of those who had died before the scheme was announced. The bright line rule involving a cut-off date of September 1991 was unduly restrictive and unfair without there being the ability to consider exceptional cases. The approach to natural clearers was disjointed and lacking: there was no opportunity for a person to explain why they considered that they had continued to suffer Hepatitis C infection beyond six months, nor could the Fund examine their evidence on the point. Instead too great an emphasis was placed on there being a clear indication in medical records of such signs or symptoms, with an overemphasis on signs. The uncertainties around natural clearers were such at the start of the Fund’s operations that there was not only an inconsistency of approach between the Fund’s directors for a period of time, but a number of applicants who might have qualified were not put forward by their doctors; and the approach to natural clearers failed to provide for cases in which psychological or psychiatric damage, rather than physiological damage, had resulted.

The responsibility for these failures rests with the Department of Health and not those involved in the day-to-day administration of the Fund which was merely the agent of the Department.[1027]

6.8 Government Response to the Archer Inquiry

The Archer Inquiry was an independent, non-statutory inquiry into the supply of infected blood products and its consequences. This chapter examines how the Government reacted to the recommendations of the Archer Inquiry and in particular to the recommendation that there should be financial relief equivalent to that in Ireland.


Key Dates

February 2009 Archer Inquiry Report is published.

May 2009 the Government publishes its formal response to the Archer Inquiry.

May 2009 Haemophilia Society criticises the Government response.

July 2009 Minister reiterates that Ireland is different because a judicial inquiry there concluded that wrongful acts had been committed.

August 2009 campaigner Andrew March issues judicial review proceedings in respect of the Government’s response.

April 2010 ministerial statement brings forward the review of Skipton Fund to as soon as possible this year.

April 2010 Andrew March’s claim for judicial review is successful.

October 2010 Anne Milton’s ministerial statement rejects Lord Archer’s recommendation 6(h) that levels of payment here should match those made in Ireland.

January 2011 Secretary of State announces increase in stage 2 Skipton Fund payments, annual payments for those who reach stage 2, and the establishment of the Caxton Foundation.


People

Lord Peter Archer House of Lords (1992 - 2012), chair of Archer Inquiry

Andy Burnham Secretary of State for Health (2009 - 2010)

Dr Rowena Jecock head of blood policy, Department of Health

Gillian Merron Minister of State for Public Health (2009 - 2010)

Anne Milton Parliamentary Under-Secretary of State for Public Health (2010 - 2012)

Dawn Primarolo Minister of State for Public Health (2007 - 2009)

Liz Woodeson director of Health Protection Division, Department of Health


Recommendations of the Archer Inquiry

The Archer Inquiry was an independent, privately funded, non-statutory inquiry, which was set up, under the chairmanship of Lord Peter Archer, in light of the refusal of successive governments to hold a statutory public inquiry.[1028] Its powers and resources were, in consequence, limited, but its work and findings were nonetheless important. Its report was published on 23 February 2009.[1029] Amongst its conclusions were: that a full public inquiry should have been held much earlier to address the concerns of the haemophilia community;[1030] that there had been “procrastination in achieving national self-sufficiency to avoid the use of high-risk blood products from overseas”;[1031] and that “Commercial priorities should never again override the interests of public health.[1032]

The Archer Inquiry made a number of recommendations for future action. These included: the establishment of a statutory committee to advise on the management of haemophilia in the UK; the issue of cards to those who had been infected entitling the holder to benefits not freely available under the NHS; funding for the Haemophilia Society; the making of some provision to ensure patients access to insurance;[1033] and the undertaking of a lookback exercise to identify, as far as possible, individuals who might have been unknowingly infected by infected blood products and who might still not be aware of this.[1034]

Of particular importance was the Archer Inquiry’s recommendation that there should be provided “Direct financial relief” for those infected and for carers who had been prevented from working. It was proposed that this scheme of financial relief should take the form of an initial capital sum, followed by prescribed periodical payments; that there should be no distinctions dependent upon the reason for the treatment with blood or blood products; that the anomalies which applied according to the age when the recipient was first infected, or when the infection took place or, in the case of dependents, the date of death of the original patient should be rectified; and that “payments should be at least the equivilant [sic] of those payable under the Scheme which applies at any time in Ireland.[1035]

Department of Health internal briefings on how to respond to the Archer report

The Department of Health did not have sight of the report in advance of publication.[1036] The day after it was published, on 24 February 2009, Dr Rowena Jecock, who was the head of blood policy within the Department of Health, sent a note to the Minister of State for Public Health, Dawn Primarolo.[1037] The note summarised Lord Archer’s recommendations and set out the policy team’s “Initial Reactions” to each of them. On the question of payments, the note stated that a review of the payments system would need to be carefully considered and costed: “However, the financial implications are enormous if we were to operate in line with the Irish system, as Archer recommends. (An initial estimate applying the average Irish payment to our 4-5,000 cases would be £3-3.5 billion. We need more work to properly quantify these recommendations.)”. The recommendation regarding access to insurance would be discussed with the Association of British Insurers. If the recommendation for a further lookback exercise were to be implemented it was proposed that this should be managed by the United Kingdom Haemophilia Centre Directors’ Organisation (“UKHCDO”).[1038]

The £3-3.5 billion estimated cost to achieve parity with Ireland was a “very rough estimate”and a “sort of ballpark idea”.[1039]

The strong recommendation was that there should be no immediate commitment to a timetable for response, and that the necessary consultation, costing of options, and decision time “may require three months.[1040]

The note also included the policy team’s general commentary on the report, saying:

“There is a suggestion that a secure supply of safer products could have been provided earlier by a faster drive towards self-sufficiency. However, it is debatable how much contamination could have been avoided, given that domestic products could not have been safeguarded against risk of HIV and hepatitis C any sooner than they were.”[1041]

The Minister of State for Public Health’s Assistant Private Secretary, Morven Smith, annotated the note, adding information on the sums given to the Macfarlane and Eileen Trusts to date and suggesting that, “In terms of what would be reasonable to give as a one-off additional payment to the funds; for Macfarlane it would be £7.5-8m.” She also commented at the bottom of the note that:

In relation to the first of these comments, this reason for distinguishing the position in Ireland (that the Irish Government “did accept blame and thus offered compensation”) became a central refrain in the Government’s response to the Archer report. In relation to the second comment, it is surprising to read that “no information [was] held” about the reasoning of the Government of the day for not accepting blame – the Department of Health seems to have forgotten that much of the documentation about the Government’s resistance to the HIV litigation should have illuminated this, even though some had gone missing. As for the third point, that officials were seeking legal advice on the effect on the Department of Health of apologising and using the term “health disaster” suggests that a primary focus of the Department of Health was the reputational consequence for the Department rather than the position of those whose lives, and the lives of those close to them, had been devastated by infection.

Dawn Primarolo read and annotated the note, commenting, “This Report is poor I think.[1043] Her evidence to the Inquiry was that this comment referred to Dr Rowena Jecock’s report and not to the Archer report itself; she felt disappointed and frustrated by the options provided by officials in response to Lord Archer’s recommendations.[1044] She gave a handwritten instruction to Morven Smith, asking for a note to cover: a brief history of patients being infected; any payments made to them directly; information about the setting up of the Macfarlane, Eileen and Skipton Trusts; the attitude of the Government of the day; how to respond immediately to the request for an apology; how to respond immediately to give additional resources to the Macfarlane and Eileen Trusts (“How much?”); and how to take forward consideration of other recommendations. She wrote, “It is clearly not acceptable in such tragic & unique circumstances for DH to claim no liability and no more money to Trust.”[1045] A note from around this time, which Baroness Primarolo identified as written by her Private Secretary documenting a discussion between them, recorded similar sentiments including, “Proper Report ASAP, what’s in place 2 never happen again?”and “much clearer how much + why fund.[1046]

In contrast to the Minister’s instinctive initial reaction, the view of Liz Woodeson, director of Health Protection in the Department of Health, was that the Department of Health should “aim to do only a brief response and get it out as quickly as possible”, setting out “our side of the storyall the steps taken to make the blood supply safer as soon as it was recognised there was a problem” and all the services provided for people with haemophilia and “the compensation schemeanything else positive we can say about waht [sic] we are already doing”, in order to “politely reject the specific recommendations”.[1047] It is clear from Liz Woodeson’s email that she was advising the rejection of the recommendations when she had not in fact read the Archer report.[1048]

Dr Ailsa Wight replied saying that she thought money rather than services would be the “main issue, and that she suspected that the Minister “will want to offer something.[1049]

On 25 February 2009 Morven Smith responded to Dr Rowena Jecock’s initial note, asking for the information set out in the Minister’s handwritten instruction and explaining that:

“MS(PH) [Minister of State for Public Health] has seen this report and is very concerned about the contamination of NHS blood and blood products during the 1970s and 1980s. She is particularly concerned about how this issue has been handled.

The Minister feels that it is clearly not acceptable in such tragic and unique circumstance for DH [Department of Health] to claim no liability and to give no more money to the Trusts.” [1050]

As requested, Dr Rowena Jecock supplied a further note the following day on 26 February 2009.[1051] She said that the Archer report was critical of the speed of response of the NHS and government to the threats of contamination of blood and blood products, adding that “We do not accept all his criticisms, but official documents do show problems at various times in the development of UK capabilities for manufacture of blood products” and acknowledging the judgment in A and Others v National Blood Authority, where the judge “commented that the UK could have introduced screening or surrogate tests for hepatitis C earlier than it did.[1052]The Minister’s questions were addressed and a limited chronology provided.[1053] It was suggested that a statement “expressing this Government’s regret at the events that occurred and the consequences for those affected”could be drafted,[1054] and that although “the term ‘health disaster’ is too strong a term, as if the available blood products had not been employed, patients may have died even earlier than they did”a form of wording such as “a tragedy for those affected”could be offered.[1055] The briefing also noted that an intention to review “perceived anomalies”between the three Trusts could be announced at an early stage “ahead of the Government’s substantive response to the report.[1056] Dr Rowena Jecock provided a draft note to be provided from the Minister to the Secretary of State summarising the suggested response,[1057] which the Minister subsequently annotated with the comment, “What about more money?[1058]

Dawn Primarolo met officials from the Health Protection team working on blood policy on 2 March 2009.[1059] Following the meeting, the team were tasked with providing further information and analysis in order to formulate a response to the Archer report.[1060] Amongst other things, the Minister wished to have a reassessment of the argument not to have a public inquiry and to know “How is the ROI [Republic of Ireland] scheme going? why [sic] did they decide to accept liability”and “An idea of what money would be reasonable to give to MFT [Macfarlane Trust], ET [Eileen Trust] and Skipton Fund.[1061] In relation to the latter, it was noted that, “MS(PH) has grave concerns about the long term implications of a final settlement figure for these schemes.[1062] Baroness Primarolo told this Inquiry her concern had been that final settlements may not take account of future health and support requirements.[1063]

Political pressure to respond

Meanwhile, there was a degree of external pressure on the Department of Health to provide its response. On 3 March 2009, Edward O’Hara MP tabled an Early Day Motion: “That this House welcomes the publication of the Archer Report on the use of contaminated blood and blood products in NHS treatments and hopes that the victims of the use of such products will receive swift and appropriate recompense; and calls on the Government to make a full and speedy response to the report’s findings and to make a commitment to implement its recommendations as soon as possible.”[1064]

On 5 March 2009, Baroness Glenys Thornton, Parliamentary Under-Secretary of State for Health in the Lords, answered a Parliamentary Question from Lord Alf Morris about when the Government expected to respond to the Archer report:

“we take this issue very seriously. We will respond when we have given the report of my noble and learned friend Lord Archer the consideration that it deserves. While successive Governments have acted in good faith, the serious infections inadvertently contracted by those patients as a result of their treatment have had tragic consequences. I am deeply sorry that this has happened. These events were the subject of long-concluded legal proceedings, and the Government have established three schemes to provide financial assistance to those affected.”[1065]

The reference to infections being “inadvertently contracted” was no doubt intended to suggest that this was something unavoidable, for which the Government could not be held responsible.

Similarly, on 6 March 2009, Dawn Primarolo answered a Parliamentary Question in the House of Commons from Danny Alexander MP about whether compensation would be paid to people with haemophilia infected with Hepatitis C and HIV by outlining the existing schemes and saying, “The Department is giving Lord Archer’s report the consideration it deserves and will respond as soon as it has done so.[1066]

Meeting between Lord Archer and ministers on 11 March 2009

The Secretary of State for Health, Alan Johnson,[1067] together with Dawn Primarolo, met Lord Archer on 11 March 2009. In advance of the meeting, Dr Rowena Jecock and her team provided a briefing.[1068] It set out the Government’s position as including the following: that while “this is a tragedy and there is every sympathy for those infected, the treatment given to people with haemophilia “was the best available at the time and action was taken in good faith”; technologies to improve safety (heat treatment and testing) had been introduced as soon as available; that in relation to Hepatitis C the “very severe long term consequences of infection were only fully recognised by the scientific community during the late 1980s”, special payments had already been set up; and there had been no admission or finding of negligence by the state.[1069] The briefing noted that several of Lord Archer’s recommendations were based on measures that had been implemented in Ireland, and stated that:

“The situation in the UK is different to that in Ireland, where it was acknowledged that action to reduce the risk could have been taken earlier. The Irish Blood Service issues an apology acknowledging ‘failures’ in the past and their payment regime reflects this admission of mistakes.”[1070]

Lord Archer’s recommendations were not supported, save to the extent that the recommendation regarding access to insurance was to be discussed with the Association of British Insurers.[1071] The costs of various options for changing the trusts and schemes were outlined.[1072]

The Government’s line that patients received the best available treatment at the time, and the line that testing was introduced as soon as available, are discussed elsewhere in this Report: but in short, neither was true.[1073]

Baroness Primarolo’s evidence to this Inquiry was that she was “extremely disappointed”by the suggested responses to the Archer recommendations,[1074] and her contemporaneous handwritten annotations on the briefing include comments suggesting she was frustrated with the lack of positive options; “no pension because couldn’t work low income clearly identifiable need.[1075]

At the meeting with Lord Archer, he summarised the three main recommendations from his report as being: establishing a new committee to advise the government on haemophilia, providing funding to keep the Haemophilia Society afloat, and reassessing financial relief for those affected.[1076] A summary of the discussion produced after the meeting recorded that:

“SoS [Secretary of State for Health] would need to be convinced that current financial arrangements were insufficient before he considered any adjustments to the compensation system. Lord Archer explained that many patients suffered financial hardship but MS(PH) [Minister of State for Public Health] said it was important to distinguish what financial pressures were a consequence of infection, as opposed to being the consequence of the illness which had caused the patients to need transfusion in the first place i.e. haemophilia.”[1077]

In his written evidence to this Inquiry, Alan Johnson stated that in saying he needed to be convinced, he was not ruling out increased funding but “sounding a note of caution” in the context of a difficult financial climate.[1078]

Following the meeting, ministers requested further advice from officials on the eligibility criteria under the different schemes, including options to rationalise the schemes, options for insurance provision, funding for the Haemophilia Society, and the possibility that the Haemophilia Society could be given a wider remit as an alternative to adopting Lord Archer’s recommendation to establish a new committee.[1079]

On 17 March 2009, an amendment to the Health Bill tabled by Lord Morris and Lord Robin Corbett to establish a committee on haemophilia as recommended by Lord Archer was debated.[1080] The amendment was withdrawn but Lord Morris stated his intention to raise it again at the report stage in late April.[1081]

Further internal discussions on the Government’s response

On 19 March 2009, Dr Rowena Jecock provided ministers with the briefing requested.[1082] The briefing advised that addressing anomalies in the eligibility criteria in the Skipton Fund would cost in the order of £56m, and that rationalising the Macfarlane and Eileen Trusts and removing the discretionary element would cost around £100m.[1083]

Baroness Primarolo’s evidence to this Inquiry was that the sums involved were higher than she had anticipated, and she knew that, given the financial constraints to which the Department of Health was subject, a cost of £50m or £100m was not achievable.[1084]

In relation to the Haemophilia Society, the briefing advised that the Society could be provided with a development grant of £100,000, but that “We do not believe it would be appropriate to simply prop up the Haemophilia Society through ongoing core funding.” Dawn Primarolo annotated this recommendation, “Disagree. Haem. Society is unique we should fund.[1085] In relation to Lord Archer’s recommendation for a new committee to advise on haemophilia, the suggestion was that “We explore further the options for involving the Haemophilia Society more formally in advising on safe and effective use of blood products.[1086]

On 24 March 2009, Morven Smith emailed an official in the Health Protection Division with an outline of Dawn Primarolo’s thinking; she wished to give recurrent funding to the Macfarlane and Eileen Trusts and do away with discretionary payments but leave the Skipton Fund alone, “with a caveat that we will review the situation of the SF in 2014 which is ten years after inception.[1087]

Dr Rowena Jecock and her team provided a further briefing on 31 March 2009. The briefing noted that the Minister’s preferred approach was to replace the discretionary element in Macfarlane and Eileen Trust payments, harmonise the level of lump sum payments made by these Trusts, and increase the level of funding to the Trusts. This was estimated to cost £19m as a one-off sum and then an additional £2.1m per year. Bringing the eligibility criteria for the Skipton Fund in line with the two Trusts by including dependents bereaved before the inception of the Fund was estimated to cost £54m and would require approval from the devolved administrations. The Treasury would not provide any additional funding.[1088]

The Minister was unhappy with this submission[1089] and on 6 April 2009, Morven Smith wrote on her behalf to Dr Rowena Jecock and Liz Woodeson requesting a set of proposals giving options of how to approach each of Lord Archer’s recommendations “in the most positive way possible.[1090]

Liz Woodeson authored the next submission on the topic, on 17 April 2009, which did as requested address each of Lord Archer’s recommendations with one or more positive options, if not a straightforward acceptance, included in response to each of them.[1091] In relation to the Haemophilia Society, additional options of maintaining core funding, or offering five years’ core funding, were included.[1092] The Minister preferred the latter option.[1093] In relation to the Skipton Fund, it was noted that the Minister had already decided that this should be left alone pending a review in 2014.[1094] However, the possibility of correcting the anomaly in eligibility for partners and dependents bereaved prior to the establishment of the Fund was included as an option, albeit with the caveat that the £54m costs was “a very large sum and reaching agreement with [the Treasury] and the [Devolved Administrations] would be challenging.[1095] In relation to the Macfarlane and Eileen Trusts, options to increase annual payments to either £10,000 or £12,800 per year were laid out.[1096] Dawn Primarolo preferred the latter option.[1097]

In giving her evidence to this Inquiry, Dr Rowena Jecock agreed that the figure of £12,800 was arrived at on the basis of what was affordable and politically the ministers could “live with”; there was no assessment of need and in that sense the figure was arbitrary.[1098]

Ongoing pressure to respond and submission to the Secretary of State

Meanwhile, there continued to be pressure on the Government to provide its response to the Archer report. On 2 April 2009, Dr Rowena Jecock had provided a briefing for Dawn Primarolo explaining the difficulties that Lord Archer’s report created for the passage of the Health Bill, in particular that “in the absence of any indicative Government response to Lord Archer’s recommendations, the Government risked losing a vote on Lord Morris’ retabled amendment in the House of Lords.[1099]

On 21 April 2009, Jenny Willott MP asked a parliamentary question on the timetable and mechanism for responding, and Dawn Primarolo replied that the recommendations were “receiving very careful consideration, and we will respond in due course.[1100]

On 23 April 2009, there was a debate in the House of Lords on a motion proposed by Lord Morris, “To call attention to the findings of the Independent Public Inquiry headed by Lord Archer of Sandwell into the infection and deaths of patients with HIV and hepatitis C by contaminated National Health Service blood and blood products.[1101] On 28 April 2009, Lord Morris moved his amendment to the Health Bill during its report stage.[1102] He agreed to withdraw it upon Lord Ara Darzi, Parliamentary Under-Secretary of State for Health in the Lords, undertaking to do everything possible to ensure that the Government responded fully to Lord Archer’s recommendations before the Whitsun recess.[1103]

The Minister provided a formal minute to the Secretary of State on 23 April 2009. Amongst her suggested responses to Lord Archer’s recommendations were:

She noted that this package of measures would not satisfy Lord Archer and his supporters entirely, and in particular there might be significant criticism from the Hepatitis C community of the decision to make no changes to the Skipton Fund, but that it would show they were “doing all we realistically can.[1106] Baroness Primarolo told this Inquiry that the sole reason why the anomaly in the Skipton Fund was not addressed was the cost.[1107]

On 25 April 2009, the Secretary of State annotated the minute, “Agreed. Good outcome if not all that Lord A would want.[1108]

Government report in response to the Archer Inquiry

The Government’s formal report in response to the Archer Inquiry[1109] was notified to Lord Archer on 19 May 2009,[1110] and published with a written ministerial statement[1111] on 20 May 2009.[1112] The report responded to each of Lord Archer’s recommendations in accordance with the position agreed by ministers:

Payments made by the Republic of Ireland are a matter for them and were in response to particular circumstances in Ireland relating to the use of blood products. The situation in the UK was different. Action was taken as soon as possible to introduce testing and safety measures for blood and blood products as these became available. The introduction of heat treated product in 1985 was a key factor in protecting our supply. The establishment of the ex-gratia payment schemes in the UK was in recognition of the special and unfortunate position of those who were inadvertently infected.[1120])

In the section of the response titled “Support and services for those affected – the future”, it was stated that, “We have carefully considered Lord Archer’s recommendations, and are responding in as positive a way as possible at the current time, bearing in mind the constraints on public funds.”[1123]

In his judgment in a subsequent legal challenge to the Government’s response, Mr Justice James Holman commented in relation to this passage that “Peeling away the jargon, that is the government saying that they are proposing to pay as much as they judge, as a matter of policy and politics, they can currently afford to allocate to this particular need.”[1124]

Reactions to the Government report

On the same day the report was published, Chris James, chief executive of the Haemophilia Society, issued a press release fiercely criticising the response to the Archer Inquiry, saying that “by not implementing the recommendations in full, [the Government] shows its contempt for the victims”and calling the proposals “a collection of half measures.[1125]

Dawn Primarolo convened a meeting with civil servants on 21 May 2009 to discuss the reaction to the Government’s response.[1126] An email summary of the meeting written on the same day recorded, amongst other points:

Lord Archer replied by letter of 22 May 2009. He wrote:

“While some of the Government’s proposals were, frankly, disappointing, for example the absence of any increase in financial relief for beneficiaries of the Skipton Fund until 2014, the indifference to the limitations in the entitlement of widows, and the suggestion that after five years, the Haemophilia Society ‘will be expected to have in place an effective strategy to meet its future funding plans’, as though it were a commercial enterprise, some of the proposals are more positive, and I would have hoped that they could have been presented in a more positive setting.

When Parliament re-assembles I hope to conduct discussions between the various parties in a less emotive and confrontational atmosphere, which will also ensure that the Government receives some credit for its recognition of the hardships suffered by the patients.” [1127]

Baroness Primarolo’s written evidence to this Inquiry was that “In some ways, the negative reaction to the Government’s response to Lord Archer’s Report was helpful because it gave me a lever to try to see if more could be done.[1128] She added in oral evidence that her continuing objective in the period after the response had been published was “to find the best possible solution within all the constraints that of course exist for a minister and a department.[1129]

On 1 June 2009, Dr Rowena Jecock and her team provided a briefing on “Government response to Lord Archer – next steps”.This noted the reaction to the package announced in response to the Archer report had been “limited, but negative.” Three highlighted areas of criticism were: the level of payments to HIV patients; absence of any uplift for Hepatitis C patients; and that in respect of both “The level of payments should be closer to the amounts paid in Ireland which are claimed to be an average of £1m per person ... and up to £5m per person in some cases”. The briefing advised that the situation in Ireland could be distinguished on the basis that “The Government here has never accepted any liability. We believe that people were offered the best treatment available at the time and that as soon as blood screening tests were available they were implemented.” The projected costs of making annual payments to Skipton Fund claimants in a variety of ways were also set out.[1130] Morven Smith replied to this submission on Dawn Primarolo’s behalf asking for more information, and in particular regarding the substantive reasons why the situation in Ireland was thought to be so different from that in the UK.[1131]

Dr Rowena Jecock followed up with a further submission on 2 June 2009. This gave further details, stating that “In Ireland also, the State did not explicitly admit liability”but that a judicial inquiry, the Finlay Inquiry, had concluded that “wrongful acts were committed”in respect of failure to prevent Hepatitis C infections.[1132] Officials’ recommendation was to “hold... the line” and not make changes to the Skipton Fund.[1133]

Change of ministerial team in the Department of Health

However, before Dawn Primarolo had made any decision on the 2 June 2009 submission, she was moved to become Minister of State at the Department for Children, Schools and Families in a reshuffle that followed the local and European elections on 4 June 2009. She was replaced by Gillian Merron (later Baroness Merron). At the same time, Alan Johnson became Home Secretary and Andy Burnham replaced him as Secretary of State for Health.[1134]

A new minister brief on the Archer report was prepared for this handover.[1135] The key concerns for interested stakeholders were said to be that the increase in funding for the Macfarlane and Eileen Trusts was too little; that there would be no review of the Skipton Fund until 2014; and that there was “still no support to those who died before 29 August 2003 who currently cannot claim (an anomaly the widows were campaigning to be rectified)[sic]”.[1136]

In respect of the recommendation for parity with Ireland, the briefing advised that:

“Lord Archer’s recommendation to mirror the payments to those made by Ireland is a little misleading as the circumstances there were different, but campaigners have nevertheless latched onto these significantly larger sums.

The Government here has never accepted any liability. We believe that people were offered the best treatment available at the time and that as soon as blood screening tests were available they were implemented. There were attempts to bring litigation against the Government by those infected with HIV in the early 1990s but these were withdrawn following legal advice to the plaintiffs that they were unlikely to win their case. However as a gesture of goodwill, the Government established the Macfarlane and Eileen Trusts at that time for those infected with HIV – and the Skipton Fund in 2004 for hepatitis C. Payments from all these funds are ex gratia goodwill payments only.

In Ireland also, the State did not explicitly admit liability. However, contrary to the position in the UK, the Irish Blood Transfusion Service (IBTS) was found, by a judicial inquiry, to have been responsible on two occasions (1977 and again in 1991) for failures which resulted in the large-scale contamination with hepatitis C of a blood product used to treat pregnant women”.[1137]

On 10 June 2009 Chris James of the Haemophilia Society wrote a letter to the new Secretary of State, raising the issue of the Government’s response to the Archer report. He expressed the Society’s disappointment and its belief that the action announced did not come “even close”to discharging the Government’s moral responsibility. He requested an urgent meeting.[1138] Also on 10 June 2009, Gillian Merron was sent a further briefing from Dr Rowena Jecock and her team which advised that her predecessor had sought information on what might be done sooner to help Skipton Fund beneficiaries, “but any of these options would be costly and Treasury approval would be needed for any new expenditure above £5m.”[1139]

The following day, 11 June 2009, Gillian Merron met Liz Woodeson, the director of the Health Protection Division, to discuss the briefing.[1140] There was a subsequent discussion about lines to take in correspondence; the Minister wished to include a sympathetic paragraph in each response extending her sympathy to patients and families who had suffered, but had also expressed the “desire to stick to the Government line and close down this issue.[1141]

On 19 June 2009, Dr Rowena Jecock and her team provided a briefing for the new Secretary of State. This briefing highlighted two aspects of Lord Archer’s recommendations. The first was whether the level of financial relief should be based on the much higher level of payments made in Ireland. The briefing advised that in Ireland the Blood Transfusion Service was found to have been at fault, which was “not the case here.” The second was the recommendation to include surviving spouses whose partners infected with Hepatitis C died before the Skipton Fund was established, in line with the eligibility criteria for the HIV Trusts. Previous ministers’ decisions to make no change to financial relief for Hepatitis C was “essentially because of affordability”; the cost estimates were set out.[1142] Andy Burnham gave evidence to this Inquiry that this was an “incorrect line, and he thought the starting point ought to have been, “what’s happened to people? What is the impact on their lives? What do they need?[1143]

On 3 July 2009, Lord Morris wrote to the Secretary of State at his constituency address, asking Andy Burnham to meet him and Lord Archer to discuss the Government’s response to Lord Archer’s report “in keeping with Privy Council terms”, by which he meant “unannounced and held in strict privacy”. He warned that “the issue could become an explosive one unless we can make some move now toward closure”.[1144]

Public statements comparing the UK with Ireland

On 23 June 2009, Gillian Merron answered a topical question in the House of Commons from Dr Brian Iddon MP asking why Lord Archer’s recommendation regarding parity between Hepatitis C and HIV sufferers “as in the Irish Republic and several other countries” had been rejected.[1145] She replied:

“I deeply regret that patients have contracted serious infections as a result of NHS treatment 20 or more years ago. However, it is the different circumstances of patients that are reflected in the different financial arrangements. We will review the Skipton fund, which was set up for those infected with hepatitis C, in 2014, 10 years after its commencement. I cannot accept the comparison with Ireland, because the Irish blood transfusion service was found to be at fault, and that was not the case here.”[1146]

On 1 July 2009, there was a Westminster Hall debate on the Archer Inquiry.[1147] During the course of this debate, Dr Brian Iddon asked the Minister about her previous reply, suggesting that contrary to her stated position “the Irish paid out without liability and before any tribunal had met to discuss the position.[1148] Gillian Merron answered:

“I stand by the points that I made. Furthermore, a judicial inquiry in Ireland found failures of responsibility by the Irish blood transfusion service and concluded that wrongful acts had been committed. As a result, the Government of the Republic of Ireland decided to make significant payments to those affected ... that was not the case with the blood transfusion service here.”[1149]

This answer reflected the briefing with which the Minister had been provided.[1150] She was also provided with the draft of a speech, which asserted that before concentrates became available the life expectancy of someone with severe haemophilia was less than 30 years; that although there were warning voices about the risk from infection, “the consensus both within the scientific and haemophiliac communities was that the risk was low and worth taking”; and which described the treatment as “The best available treatment at that time.” It asserted also that “If governments, doctors and other experts had known then what we do now, we could have prevented perhaps the greatest tragedy in the history of the NHS. But the fact is, they did not.[1151] I do not criticise the Minister herself for these assertions: she was relatively new in post, this was a speech written by officials, and she was dependent on those officials for an accurate and balanced briefing. However, what officials told her to say was partial and misleading. The reference to life expectancy wholly ignored the contribution to life expectancy made by cryoprecipitate.[1152] The reference to a consensus with the haemophilia community glossed over the fact that people cannot agree that a risk is low and worth taking unless they have been individually advised of the risks and benefits: the evidence before this Inquiry overwhelmingly establishes that they were not, and there is no evidence that the Department of Health took steps to inform itself as to the position such that it could properly brief the Minister that this was the case. The repeated line to take about best available treatment was flatly wrong, and is considered elsewhere in this Report. Finally, the suggestion that governments, doctors and other experts did not have the information to take preventive steps was also wrong – as this Report demonstrates – but what is of particular concern in relation to this briefing is that officials felt able to make this confident statement without a proper evidential basis for doing so. They made it so that that assertion would be relayed to the public. The public were thus always at risk of being misled, and in the respects identified above, they were.

Correspondence with members of the public

Meanwhile, members of the public also wrote to the Government regarding the response to the Archer report.[1153] An illustrative example is the letter from Stephen Wintle, whose wife Colette had been infected with Hepatitis B and C, dated 16 June 2009. He wrote to the Secretary of State about their family’s consequent financial difficulties, and stated that:

“Lord Archer’s inquiry has made recommendations that would allow those victims who remain alive, and widows of the deceased to remove the financial hardship they have been battling with for many years, allowing them dignity and the ability to get on with, what is left of their lives. It is for these reasons that Lord Archer recommended compensation on a parity with Erie [sic] as a starting point.”[1154]

A reply was sent from the Department of Health’s Customer Service Centre, reflecting the Department’s standard lines[1155] to take on the topic:

“This Government deeply regrets that patients acquired serious infections as a result of NHS treatment some two or more decades ago, and extends every sympathy to the patients and their families who have suffered as a result of the very treatments that should have transformed their lives for the better.

The Government understands the sense of grievance that some people may feel as a result of what has happened, and that there are deeply held opinions on the appropriateness and timeliness of decisions and actions taken many years ago. In his report, Lord Archer did not find the government of the day to have been at fault, and did not apportion blame.

The Department is committed to ensuring that people with haemophilia, and others who have been infected with hepatitis C and/or HIV from blood and blood products, are well cared for, supported in their communities and fully informed about how best to look after their health. The Department gave very careful consideration to Lord Archer’s recommendations to see what more it could do, and has made as positive a response as possible.” [1156]

Andy Burnham’s evidence to this Inquiry was that he would not personally have had sight of correspondence of this kind with a member of the public. On reading the response in the course of preparing his evidence, he (rightly) considered it was incorrect to say that the Government had made “as positive a response as possible” to Lord Archer’s recommendations.[1157] He further stated that while it was not the fault of the individual correspondent in the Department of Health, the approach of replying with prepared standard lines was “defensive”and “stonewalling, reflecting an overarching “financial exposure concern, which is fundamentally the wrong way in which to address an issue that has caused such devastation to British families.[1158]

On 19 June 2009, a protest took place outside Andy Burnham’s constituency office in Leigh, which increased his awareness of the issue soon after taking up his new role.[1159] He later replied personally to a letter from David Tonkin, chair of the Manor House Group, which had been handed to him at or after the protest.[1160]

The Andrew March judicial review

Campaigner Andrew March issued judicial review proceedings in respect of the Government’s response to the Archer Inquiry on 20 August 2009.[1161] In particular, he challenged the Government’s reasoning for failing to adopt Lord Archer’s recommendation 6(h), that “payments should be at least the equivalent of those payable under the scheme which applies at any time in Ireland.” He argued that Gillian Merron’s responses to Dr Brian Iddon, first in reply to his oral question on 23 April 2009 and second in the debate in Westminster Hall on 1 July 2009, revealed that the Government’s reasoning was based on a material error of fact as to the situation in Ireland.[1162] He contended that contrary to the Minister’s statements, the Irish Government decided to make payments at a full, compensatory level for compassionate reasons before, and therefore not because of, any finding of fault had been made.[1163]

Andrew March had written to the Department of Health on 5 June 2009, stating that he was unhappy with the proposed level of payments from the Macfarlane Trust. He wrote:

“This proposal is diametrically opposed to the regaining of financial independence for beneficiaries described in the Archer Report. The proposal misses entirely the essence of Recommendation 6, where it is stated that payments should be at least the equivalent of those payable under the Scheme which applies at any time in Ireland ... My campaigning for full equality with Ireland ... will continue”.[1164]

He received a letter in response which reflected the Department’s standard lines. In relation to the question of parity with Ireland, the reply stated:

“You refer to Lord Archer’s recommendation that payments should be at least the equivalent of those under the scheme which applies at any time in the Republic of Ireland. Payments made by the Republic of Ireland are a matter for that country and were introduced following a judicial inquiry which found failures of responsibility by the Irish Blood Transfusion Service and concluded that wrongful acts were committed.

The situation in the UK was different. Action was taken in 1985 to introduce heat treatment, which removed the risk of both HIV and of hepatitis C from blood products. Testing of all donations for HIV was introduced in 1985, and for hepatitis C in 1991 when suitable, effective tests became available. The establishment of the ex-gratia payment schemes in the UK was in recognition of the special and unfortunate position of those who were infected.” [1165]

Deborah Webb, working in the Health Protection Division, provided a written statement in response to the judicial review claim on behalf of the defendant Secretary of State for Health.[1166] She said the rough initial costing for replicating in the UK a scheme with equivalent compensation to Ireland was £3-3.5 billion.[1167] This referred to the very first briefing by Dr Rowena Jecock on 24 February 2009, referred to above.

Further internal discussions in the Department of Health in 2009

On 28 August 2009, Deborah Webb provided a briefing to the Secretary of State in advance of a planned meeting with Gillian Merron and Baroness Thornton (Parliamentary Under-Secretary of State for Health in the Lords) to discuss the Government’s response to Lord Archer’s report.[1168] Officials advised that the Ministers should maintain the position set out in the Government’s response published on 20 May 2009. It was noted that:

“This is a sensitive issue, which although it has not received a high level of media coverage, has support from parliamentarians in both the Commons (especially Jenny Willott, secretary to the APPG on haemophilia), and the Lords (especially Lord Morris, President of the Haemophilia Society). It is likely that you will be lobbied about the Government’s response, which is viewed as inadequate by those affected by HlV/hepatitis C and their supporters. In addition, we have also received notice of an application for a judicial review of the Government’s response to Lord Archer’s recommendation on financial relief for those affected.” [1169]

The main areas of criticism were identified to be:

Lord Archer’s recommendation to increase payments to a level reflective of those paid in Ireland was said to be “misleading as the circumstances there were different, but campaigners have nevertheless latched onto these significantly larger sums”; it was recognised that the state in Ireland had not explicitly admitted liability but repeated that the Irish Blood Transfusion Service had been found by a judicial inquiry to have been responsible for failures which resulted in a blood product used to treat pregnant women being contaminated with Hepatitis C.[1171]

The three ministers met on 10 September 2009. A summary of the meeting shows that they were “keen for some work to be done on the smaller points we can address”such as improving benefits forms in liaison with the Department for Working and Pensions.[1172] The record went on:

“Generally, speaking Ministers wanted the Department to be more on the front foot and take credit for the things the Government had done in this area (eg the setting up of the Skipton Fund in the first place). They wanted better handling plans, putting out positive messages/finding good new [sic] stories to announce on this issue, rather than being passive and defensive.”[1173]

Andy Burnham’s evidence to this Inquiry was that at this time the ministers were “beginning the process of saying to the Department, ‘This can’t stay where it is’ ” and querying the line agreed by the previous ministers, but that officials were reluctant to reopen the issue.[1174]

Dialogue between ministers and politicians campaigning on infected blood issues

Gillian Merron attended a meeting with Lord Archer and cross-party MPs (Jenny Willott, Alistair Burt and Dr Brian Iddon) regarding the Government’s response to the Archer report on 21 October 2009, at which the level of payments, proposed date for review of the Skipton Fund, and the issue of parity with Ireland were discussed.[1175]

Andy Burnham met informally with Lord Morris in or around September 2009, which he says compounded his feeling that the issue could not be left as decided by previous ministers.[1176] He also met with Paul Goggins, Dr Brian Iddon and affected haemophilia patients and their families in January 2010,[1177] which he describes as having had a profound impact on him.[1178]

Lord Morris laid a Private Members’ Bill, the Contaminated Blood (Support for Infected and Bereaved Persons) Bill, in the House of Lords on 19 November 2009.[1179] The Bill had its Second Reading in the Lords on 11 December 2009. During the course of the debate, Lord Morris challenged the Government’s previous statements to the effect that the level of compensatory payments in Ireland was responsive to a finding of fault. Baroness Thornton responded that “the situation [in Ireland] is quite different from the situation here in the UK.[1180]

On 5 January 2010, Baroness Thornton provided a written answer in response to a follow-up parliamentary question from Lord Morris, in which she reiterated that “The compensation scheme in the Republic of Ireland was set up in light of evidence of mistakes by the Irish Blood Transfusion Service Board.[1181]

Lord Morris’ Bill passed through the House of Lords on 21 January 2010 and had its first reading in the Commons on the same day, sponsored by Edward O’Hara. On 23 February 2010, Gillian Merron wrote to Lord Morris and Edward O’Hara inviting them to meet.[1182] The response on behalf of Lord Morris invited the Minister to correct the parliamentary record vis-à-vis her statement to the House of Commons on 1 July 2009 distinguishing the situation in the UK from that in Ireland.[1183] This elicited a holding response, together with a renewed invitation to meet.[1184]

The Minister did meet with Lord Morris on 11 March 2010.[1185] She also met with Edward O’Hara, together with Sylvia Heal MP, on or shortly before 12 March 2010.[1186] The question of comparability with Ireland was raised again at this meeting.[1187] Following the meeting, the Minister requested “a definitive explanation of the Irish position”, with a view to providing a briefing note for MPs.[1188]

Bringing forward the review of the Skipton Fund

In or around late January 2010, the Secretary of State held a meeting with Gillian Merron, the Permanent Secretary Hugh Taylor, and other senior officials in the Department of Health to discuss contaminated blood issues during which, among other matters, he pushed for the planned review of the Skipton Fund to be brought forward from 2014.[1189] Following this meeting, or perhaps a similar discussion around the same time, Gillian Merron’s Assistant Private Secretary asked Dr Rowena Jecock to provide options for bringing forward the review of the Skipton Fund.[1190]

This resulted in a briefing paper from Dr Rowena Jecock and her team dated 3 March 2010, which advised against bringing the review forward on the basis that the Department of Health was already over-committed on funding for 2010-2011. The risks of taking this approach were emphasised. An alternative option, of providing access to personal health budgets, without providing extra money to those affected, was suggested instead. The note concluded, “If you wish us to identify funding for this, then cuts will be required in other priority programmes.[1191]

Despite this discouraging briefing, Gillian Merron requested further advice on options to bring forward a review of the Skipton Fund, as well as more detail on the possibility of personalised budgets for people with haemophilia. This request was met with a briefing authored by Deborah Webb, which did outline three alternative options. These were: bringing forward a full review, undertaking a review subject to pre-identified finite non-recurrent funding, or addressing anomalies in the scheme without a formal review. However, officials again strongly advised holding the existing line.[1192]

The Minister’s Private Office replied saying that, “SofS [Secretary of State ] and MS(PH) are keen to take this forward and has asked for a meeting as soon as it can be arranged.[1193] This meeting, between the Secretary of State, the Minister, Dr Rowena Jecock and Deborah Webb took place on 24 March 2009. The Secretary of State’s Assistant Private Secretary sent a follow-up email confirming that the Ministers’ clear preference was to bring forward a full review of the Skipton Fund.[1194] Gillian Merron subsequently agreed this plan with Nicola Sturgeon, then Deputy First Minister of Scotland and Edwina Hart, Minister for Health in Wales.[1195]

On 6 April 2010, the Minister issued a written ministerial statement bringing forward the review of the Skipton Fund to “as soon as possible this year.” The statement read:

“Further to the Government’s response to Lord Archer of Sandwell’s report on NHS-supplied contaminated blood and blood products, which we published on 20 May 2009, I wish to inform the House that we have decided to bring forward a review of the Skipton Fund, which makes ex-gratia payments to those infected with hepatitis C as a result of their treatment.

The unintended and tragic consequences of these treatments have seriously impaired the lives of many people, together with those of their families. We have listened carefully to the views of those infected, their families, carers and many in this House, who have told us that our intended review date of 2014 will be too late for many of those affected. Consequently, we have decided that the review will begin as soon as possible this year.

It will be an independently chaired review. The terms of reference, membership and conduct of the review will be agreed in conjunction with the Devolved Administrations.

I would also like to take this opportunity to confirm payment of £100,000 to the Haemophilia Society, as promised in our response of 20 May 2009.

I would like to reiterate this Government’s sympathy for those affected by these treatments many years ago, before screening tests and methods of viral inactivation became available. We remain fully committed to supporting them in the best way we can.” [1196]

The General Election was called on the same day and Parliament was dissolved on 12 April 2010.

Outcome of the Andrew March judicial review

The judgment in the judicial review claim was handed down by Mr Justice Holman on 16 April 2010.[1197] The judge found that the Irish scheme: was fully compensatory in design; was ex gratia in nature; had existed on a non-statutory footing prior to the Finlay Report; and was not limited to women infected through anti-D (investigated by the Finlay Tribunal).[1198] He therefore concluded that the Government’s approach to Lord Archer’s recommendation 6(h) had been “infected by an error”,[1199] and the claim for judicial review succeeded. Recognising the limitations of judicial review, he also observed that: “the allocation of resources is entirely a matter for the government. They have said, in effect, that they cannot afford to pay more; and that is entirely a matter for them, as to which I neither express, nor have, any opinion or comment whatsoever.”[1200]

A briefing was provided to the Secretary of State on 15 April 2010, advising that leave to appeal should be sought.[1201]

Change of ministerial team following the May 2010 General Election

On 6 May 2010, the General Election took place, resulting in the formation of the Coalition Government. The new Secretary of State for Health was Andrew Lansley. Anne Milton became Parliamentary Under-Secretary of State for Public Health, with responsibility for blood and blood products.

On 26 May 2010, a briefing note was provided to Anne Milton recommending that the Government should not appeal Mr Justice Holman’s decision.[1202] This would entail reconsideration of Lord Archer’s recommendation 6(h) for parity of compensation with Ireland, with a new decision being taken. Anne Milton agreed with that approach.[1203]

On 4 June 2010, Deborah Webb provided a further briefing.[1204] This advised the Parliamentary Under-Secretary of State to oppose Lord Morris’ Contaminated Blood Bill, which he had reintroduced since the General Election.

Re-making of the decision on Lord Archer’s recommendation 6(h)

On 8 July 2010, Deborah Webb sent Anne Milton a submission on how to approach making a new decision in respect of Lord Archer’s recommendation 6(h) for parity of compensation with Ireland.[1205] She noted that the Minister was due to meet with campaigners and hear their evidence on 15, 20 and 22 July 2010, and that a final decision should be made after that. However, the recommendation was made at that point – even before these meetings had taken place – to reject the recommendation “on the basis that it is unmeritorious, on grounds of both: (i) the factual difference between RoI & UK; and (ii) affordability.[1206] In respect of the first, the findings of the Finlay Tribunal in Ireland were again relied upon as a relevant distinguishing factor, notwithstanding the outcome of the judicial review claim. In respect of the second, the rough initial costing of £3-3.5 billion to achieve parity was said to be “an underestimate.[1207] An international comparison of contaminated blood compensation schemes was provided in an annex to the briefing.[1208] The briefing also suggested that the Minister should reconsider the previously announced decision to bring forward the review of the Skipton Fund; as the review had not yet commenced, the Minister could decide whether it should proceed.[1209]

Anne Milton held meetings with campaigners and other interested parties, as referred to in the briefing, including representatives from the Haemophilia Society, the Hepatitis C Trust, Tainted Blood, the Manor House Campaign and the Contaminated Blood Coalition.[1210] Christopher FitzGerald, chairman of the Macfarlane Trust, had written to her soon after her appointment, urging her to consider increasing funding to the Trust.[1211] She met Christopher FitzGerald, together with Peter Stevens, chair of the Eileen Trust and the Skipton Fund, on 15 July 2010.[1212] On 22 July 2010, the Minister met Colette Wintle, who had been infected with Hepatitis B and C in the course of treatment for haemophilia,[1213] and Carol Grayson, who had lost her husband, Pete Longstaff, as a result of his exposure to contaminated blood products.[1214] They spoke of their personal experiences and their research and campaign work.[1215]

On 11 August 2010, Deborah Webb provided an updated version of her previous submission. The advice remained that Lord Archer’s recommendation regarding parity with Ireland should be rejected; officials now also recommended that the review of the Skipton Fund should be put on hold while the Minister considered evidence from the July meetings with campaigners.[1216] Anne Milton’s response was that she wanted to make only one announcement on contaminated blood, did not want to say anything about recommendation 6(h) until all the other issues had been resolved, and wanted solid legal advice on how to achieve this and “still stay on the right side of the law.” She also wanted exploration of the possibility of reviewing the Skipton Fund at a lower cost.[1217]

On 6 September 2010, Benjamin Cole provided a follow-up submission continuing to recommend that an announcement should be made rejecting Lord Archer’s recommendation 6(h), but at the same time, a review of wider issues (not limited to the question of a Skipton Fund review) should be instigated.[1218] A further submission on 16 September 2010 noted that Anne Milton had agreed to undertake this review, and provided preliminary costings of the main options the review would be considering.[1219]

On 30 September 2010, Andrew Lansley wrote formally to the Deputy Prime Minister, Nick Clegg, seeking Home Affairs Committee clearance to publish a written ministerial statement rejecting Lord Archer’s recommendation 6(h).[1220] His stated reasons were twofold. The first was the distinction between the UK and the “very specific events and failings that occurred in Ireland that were unique to that country, which he contrasted with there having “never been any findings of fault here in the UK. The second was the estimated in excess of £3 billion financial cost. He wrote that“a financial commitment of that size would require significant reprioritisation of other essential programmes.”[1221]

The reason for there not having been “any findings of fault here in the UK” was, of course, because successive governments had refused to establish a public inquiry, and had settled litigation.

More details about the proposed terms of reference and conduct of the proposed review into other matters were contained in a submission from Dr Rowena Jecock dated 7 October 2010.[1222] The review was to cover England only and focus on identified anomalies in financial relief afforded to those infected with Hepatitis C in comparison to those infected with HIV; the level of payments under the HIV Trusts would not be revisited.[1223] Approval having been granted by the Home Affairs Committee,[1224] on 14 October 2010, Anne Milton published a written ministerial statement:

“Having carefully compared the circumstances pertaining here and in the Republic of Ireland during the period when most of the infections occurred, and having taken account of the fact that this tragedy similarly affected many other countries; I do not consider there is a case for accepting Lord Archer’s recommendation 6(h) that levels of payment here should match those made in Ireland. Every country must make its own decisions on financial support for those affected, taking account of its own particular circumstances, and affordability. The scheme in Ireland was set up on that basis, and has not been replicated in any other country, as far as we know. However, our ex-gratia payment schemes for HIV compare well with those of other countries.

In addition, it is estimated that implementing a similar scheme to Ireland’s here in the UK, would cost in excess of £3 billion.” [1225]

Review of support available to those infected and their dependents

The review was undertaken with detailed options presented to Anne Milton by a submission dated 7 December 2010,[1226] and a report produced in January 2011.[1227] This resulted in some additional measures being announced on 10 January 2011 by the Secretary of State: an increase in stage 2 Skipton Fund payments (from £25,000 to £50,000), an annual payment of £12,800 for those infected with Hepatitis C who reached stage 2 (the same amount paid to those infected with HIV), and the establishment of what became the Caxton Foundation.[1228]

Commentary

The conclusions of the Archer Inquiry – that a full public inquiry should have been held much earlier to address the concerns of the haemophilia community;[1229] that there had been “procrastination in achieving national self-sufficiency to avoid the use of high-risk blood products from overseas”; and that “Commercial priorities should never again override the interests of public health”– were justified.[1230]

The response of the Department of Health had been to avoid endorsing the Archer Inquiry. Though it provided documents this did not amount to an unfettered access to the Departmental files. It did not facilitate the appearance of witnesses. It did not waive legal professional privilege. The Archer Inquiry lacked the powers available to a statutory inquiry, or the resources necessary to conduct a full investigation. As a result its conclusions were always likely to fall short of a full picture of what had happened, and why.

The Department of Health did however consider the recommendations which the Archer Inquiry was able to make, and they had some influence on what then happened.

For perhaps the first time a distance began to be drawn between the repeated assertion that the best available treatment had been provided and the current Government: thus Morven Smith recorded that the Government at the time (1980s) did not accept that there was a case to be answered and did not accept blame; she herself reported that the reasons why government had taken that approach were now unknown.[1231] It also appears to have marked something of a turning point in that Dawn Primarolo started to ask questions about what had happened, and then persisted in this; and it led to Dr Rowena Jecock reporting that “official documents” showed problems at various times in achieving self-sufficiency.[1232] There seems to have been a shift away from a blunt refusal to accept that any wrong had been done to at least contemplating that some might have been.[1233]

However, the analogy Sir John Major used in evidence – that sometimes changing government policy was akin to the time it takes for a great tanker to turn around[1234] – is demonstrable too. Thus, repeatedly, officials assert that there was no proper comparison with Ireland because the government there had accepted blame, and had been found at fault. They had been told this was not so, yet it took a further court case (of judicial review) to confirm it.[1235] Linked to the Irish issue was a reluctance to accept the financial recommendations the Archer Inquiry made.

The officials in the Health Protection Division were concerned about resource issues, which was to an extent understandable in the context of the financial climate at the time.[1236] However, this meant that they looked for reasons to reject Lord Archer’s recommendations rather than regarding the needs of the recipients of infected blood and blood products and their families as the starting point.

This approach made it more difficult for ministers to understand and assess the merits of the recommendations, and to balance financial resource with other relevant factors.

The timing of the June 2009 reshuffle and May 2010 election meant that new ministerial teams came into post. Each was unfamiliar with the nuances of the issues and highly dependent on officials’ advice, especially at the start of their tenure. The Department of Health stuck rigidly to its lines to take. In the case of its line on parity with Ireland, this led to decision-making that was found to be unlawful. A retaken decision largely relied on the same erroneous position.

Although the belief that nothing wrong had been done, that there was no fault, and that the best available treatment was given was waning it was nonetheless proving hard to shake off. Its influence is clear in the Department of Health’s response to the Archer Inquiry and in its persistent belief in the difference between the UK and Ireland.

Though the Archer Inquiry had begun to change the perception of many politicians, and the government was to respond within a further seven years with recognition that wrong may have been done, then that it had been, and to accept that there should be a public inquiry – and finally in 2022 to recognise at least a moral case for compensation – the response to the Archer Inquiry was too concerned with the financial consequences that might follow. The events highlight how civil servants repeatedly took care to steer ministers away from anything that might involve expenditure, or be an implicit acceptance of fault. If there had been such an acceptance, expenditure would be bound to follow. They also show how long it may take for government to take a fresh look at evidence to see if the facts do indeed support some of its views, or to look again at practices hallowed by their repetition repeatedly over years.

It is disappointing that government missed an opportunity for reflection, and for challenging its internal beliefs and lines.

What is, however, most disappointing about the response to the Archer Inquiry is the sense it leaves that government was looking to see what was the least that was required of it.

6.9 Caxton Foundation

This chapter describes the establishment of the Caxton Foundation, the function of which was to provide discretionary payments to those who had received Stage 1 payments from the Skipton Fund. It examines why the Foundation served only a small proportion of those entitled and looks at reasons for delays and shortcomings in processing payments.


Key Dates

March 2011 Caxton Foundation is established by a deed of Trust.

October 2012 Caxton’s National Welfare Committee reports that in the first six months of active operation a third of applications were left undecided because more information was needed.

March 2013 Ann Lloyd and Jan Barlow express concerns about Caxton’s administrative processes, its staff and the communication with beneficiaries.

February 2014 the Department of Health rejects the business case submitted by Caxton for funding for 2014/15.

December 2014 Caxton newsletter provides very limited information in terms of guidelines or support for which beneficiaries can apply.

2014 the Skipton Fund contacts people who have received a Skipton Stage 1 payment, but with whom there has been no subsequent communication. The number of Caxton beneficiaries rises by nearly 60%.

2014/15 the pressure on funds is such that the annual fuel allowance is reduced.

January 2015 APPG Report is critical of the Caxton Foundation.


People

Jan Barlow chief executive (from 2013)

Martin Harvey chief executive (until 2012)

Charles Lister director and vice chair (2011 - 2015)

Ann Lloyd chair (2013 - 2015)

Christopher Pond chair (2015 - 2018)

Peter Stevens chair (2011 - 2013)


Abbreviations

APPG All-Party Parliamentary Group

NWC National Welfare Committee, Caxton Foundation


People who contracted Hepatitis C from NHS treatment were entitled to set payments from the Skipton Fund, but not to further one-off payments to meet particular needs as and when they arose. The Archer Inquiry gave focus to the considerable difficulties this could cause. Partly in response to its report in 2009, the Government decided to set up a scheme providing for such grants in the case of need.[1237]

This was achieved by a Trust deed of 28 March 2011 establishing a charity, for which the first trustees were to be Peter Stevens, Roger Evans, and Charles Gore.[1238] Its purpose was to “provide financial assistance and other benefits to meet any charitable need” of individuals who had received a Stage 1 payment from the Skipton Fund, with the exception of those who were beneficiaries of the Macfarlane Trust or the Eileen Trust, and those who received infected blood, blood products or tissue from the NHS but outside England.[1239] In addition to these “primary beneficiaries”, the partners, parents, carers, children and dependants of primary beneficiaries, living or deceased, were also entitled to be considered, irrespective of the date of death. The trustees had the power, with the consent of the Secretary of State for Health, to add to the class of primary beneficiaries those who had received the relevant treatment in Scotland, Wales or Northern Ireland as well as in England and duly did so.[1240] In due course, the trustees decided to exercise their power to appoint a corporate trustee. The individuals who would otherwise have been trustees then became, technically, directors of the company which was the corporate trust. The chief executive of the Caxton Foundation (“Caxton”) thus became a director.

Due to the terms of the deed, qualification for consideration for a grant was established by a third party, the Skipton Fund. It was not necessary to prove that the registrant had hepatitis: that had been done through the Skipton Fund assessing eligibility for a Stage 1 payment. However, a substantial number of those who had applied successfully to the Skipton Fund did not make any application to Caxton. This was an early concern of the Board.

Governance

Peter Stevens was chair of Caxton from 2011 until 2013. Ann Lloyd then became chair.[1241] She began in February 2013, and stood down as chair two years later[1242] when she considered that to continue might conflict with a role she had just accepted in the Welsh Health Service. Jan Barlow became chief executive in January 2013 in succession to Martin Harvey. She was also chief executive of the Macfarlane Trust at the same time. Whereas Roger Evans had seen a conflict between his being chair of the Macfarlane Trust and remaining on the Board of the Foundation, she saw no conflict in being chief executive of both charities,[1243] nor that there would be any particular difficulty in the Caxton Foundation being the nominal employer of all the staff working for both.[1244] It was arranged that the Caxton Foundation would employ all of the staff working at Alliance House.[1245] The aim was to save money and potentially make more available for beneficiaries,[1246] by spending less on the administration, though some of the complexities of having staff who could be directed to serve different bodies whose interests did not necessarily coincide necessitated a Joint Liaison Committee being set up.[1247]

Charles Lister was a director and vice chair of the Caxton Foundation from August 2011 to April 2015. He was a member of the committee which allocated grants, called the National Welfare Committee (“NWC”), from September 2011 until March 2012, and then chair of it until March 2014.[1248]

Caxton decided against having a user as a director: a paper authored by Peter Stevens and Charles Lister set out their view that the problem with appointing a “beneficiary trustee” was “the absence of a ‘neutral’ outside body with rights of appointment, which means that beneficiary volunteers for the Board would most likely come from activist groups. Such people are likely to have difficulty with the requirement that they should not represent anybody or any cause outside the charity, but should at all times and only act in the best interests of the charity itself, not of its beneficiaries nor of any outside interest such as a campaign group; they might also find it difficult to accept that anything trustees learn about the charity should be confidential.[1249]

This view – in effect, saying anyone who was a user keen to advance the interests of other beneficiaries could not be trusted – is consistent with Peter Stevens’ distrust of the motives of Macfarlane beneficiaries.[1250] In this extract, by saying that the trustees should act “in the best interest of the charity itself, not of its beneficiaries” an entirely false demarcation was drawn: a charity’s purpose is to serve its beneficiaries in accordance with its objects. The best interests of the beneficiaries of a charity, taken as a whole, now and in the future are coterminous with those of the charity. The extract quoted above may simply have been a clumsy way of expressing that the trustees should have a broad rather than sectional view of the beneficiaries, but the words are set out as they were used, and as expressed they are objectionable. Charles Lister acknowledged in his evidence to the Inquiry that this was “very badly worded” and that there was a “certain arrogance” about this paper: he thought that they could have found a way of having a beneficiary trustee.[1251] He was right on this.

Underlying problems

Many of the problems the Macfarlane Trust had in 2011 beset Caxton too. To some extent that was because the proposed structures and governance arrangements were established in large part by Roger Evans and Peter Stevens. Because of their familiarity with the ways in which the Macfarlane Trust operated, they chose to set up Caxton to operate in a similar way.[1252] Many of the complaints by beneficiaries which followed echoed those made by the beneficiaries of the Macfarlane Trust. Save in respect of the ways they were organised there was, however, little if any overlap between the two charities – those who were beneficiaries of the Macfarlane or Eileen Trusts were excluded from benefits under Caxton, even though they were entitled to claim on the Skipton Fund.

It is telling that the different beneficiaries of Macfarlane and Caxton reacted in similar ways. This owed a lot to the policies, the structures, the organisation and those staff who were common to both. Before turning to the problems caused to relationships between the Foundation and its beneficiaries by the way the Foundation ran in practice (a topic which deserves rather fuller treatment), it must be acknowledged that it had underlying challenges to grapple with.

Central challenges were:

  1. Attracting those eligible. Ensuring that those who were registered with the Skipton Fund were aware of and took advantage of the further assistance they could get from Caxton. The likelihood is that a very large number of these potential beneficiaries had significant need: this was demonstrated by an early survey of those who actually did register. Each was given a census form to fill in. Just over half of those who registered and returned the census had income which fell below what was recognised as the poverty line.[1253] The likelihood must be that those who had not yet applied would be the same.[1254] After Ann Lloyd became chair efforts made to let more potential applicants know of Caxton began to bear fruit: she brought energy and focus to the efforts to let more potential applicants know of the Foundation, putting together the proposal for Department of Health funding for the Skipton Fund in addition to extensive talks with the Hepatitis C Trust and Haemophilia Society.[1255] However, the fact remains that throughout its short life Caxton actively served only a small proportion of those who were entitled to its support.[1256]
  2. More might have been achieved if the Government had made arrangements for the Skipton Fund to inform people who had registered with it about the existence of Caxton from the beginning.[1257] The Skipton Fund was, after all, an agent of the government, and could have been directed appropriately. Had this been done, there would have been no breach of data protection principles, and privacy would be preserved, for the choice of whether a beneficiary of the Skipton Fund then chose to have their details given to Caxton was in the beneficiary’s power alone. The probability is that some more applicants would have come forward. The fact that Ann Lloyd’s efforts bore some fruit leads to an inference, too, that more might have been done by the early trustees. Though in mitigation it must be borne in mind that those trustees had a lot to do in setting up the Foundation, nonetheless a primary responsibility was ensuring that as many as possible who might wish to make an application were enabled to do so, and an obvious route was to find a means of arranging that the Skipton Fund told successful applicants for awards from Skipton that there was a foundation specifically set up to fund further needs, and to offer to forward their details to it;

  3. Its relations with the government. Since the government was in effect the sole funding agency, Caxton had the same feeling of unease as did the Macfarlane Trust at pressing its case for additional funds from government too strongly, and in particular in public. Though technically independent as a charity, it was expected to account for its expenditure to the government. It was not allowed to retain a reserve, which meant that its funding was treated as if it were a local authority dependent upon an annual budgetary round. This uncertainty of capital availability made long-term planning difficult. Not only that, it was understood that Caxton would report to the Department of Health that it had achieved the government’s “policy objectives” by the way in which it had spent the government’s money.[1258]
  4. Staffing levels.These were barely adequate at the start. This was compounded in the early period of Caxton’s operation by the illness of the chief executive, Martin Harvey, who ultimately became unable to work any longer. However, the lack of sufficient staff able to perform necessary tasks, let alone to have time to consider improvements, underlay many of the operational problems which beset Caxton almost from its inception. Jan Barlow, when she became chief executive, set out (successfully in the eyes of Ann Lloyd)[1259] to overhaul the organisation to provide a more effective service to beneficiaries: she noted that when Caxton had been introduced “there had just been one additional staff member who had been brought on to the team to deal with, if you like, the daily administration, and things hadn’t been looked at in the round.[1260]; and
  5. Dealing with each beneficiary with sensitivity. The chances were that each registered beneficiary would be as likely as those registered with the Macfarlane or Eileen Trusts to be aggrieved by the fact that they had received treatment which had resulted in serious life-limiting infections without any advance warning that that might be a consequence. To a significant extent, they had already seen their economic and social aspirations put out of their reach. Yet they were now to be seen as objects of charity rather than being deserving of compensation. A reluctance to apply for this reason – itself a by-product of the way the scheme was set up – was clear to Charles Lister, who thought that people applied rather reluctantly because Caxton was the only system available to provide support; like “coming with a begging bowl[1261] and his view seems consistent generally with the evidence the Inquiry has received from applicants.

Problems in the running of Caxton

First year of operation: 2011-12

Caxton lacked an effective chief executive at the outset. Martin Harvey was ill, and went on to request early retirement in 2012.[1262]

Grants were initially paid by means of a “voucher system”. This not only carried an implication that recipients of relief could not be trusted with money to spend for the purposes claimed, but also exposed those using a voucher to the risk that they would be identified as suffering from Hepatitis C.[1263] Many were fearful of the consequences. In the popular imagination, Hepatitis C was linked with intravenous drug abuse, and with prostitution or promiscuity. It had overtones of HIV infection: and the stigma which people living with HIV had endured was notorious. Rightly, vouchers as means of grant aid were phased out after Jan Barlow took over as chief executive in early 2013.[1264]

By the end of 2012, the evidence as to the position of the Caxton Foundation was all one way. The Foundation was not working effectively. It took far too long to process applications. A dramatic illustration of this was given by Caxton’s National Welfare Committee (“NWC”) which reported that between September 2011 and March 2012 (the first six months of active operation) a third of applications were left undecided because more information was needed.[1265] By the end of the next six months the situation had only marginally improved. Still more than one in five applications were left undecided. Over the first year, just over £2.25 million had been sought by way of grants; just over 30% had been granted, just over 40% declined and just under 30% left undecided.[1266] The audited accounts, however, submitted to the Charity Commission at the end of the year show a different picture – it might be inferred from them the amount left unspent was some 25% (a quarter rather than a third).[1267] It is unnecessary to resolve these differences (although it would be surprising that they should exist if the organisation were well run), since witnesses were in agreement that it took far too long to process early applications.[1268] Money left unspent at the end of the financial year did not roll over into the sums available for the next year, so delay simply added to the difficulties of making finance available.

The reasons given for postponing a decision on an application were generally that there was a need to seek further information, usually financial. Before Jan Barlow took over as chief executive, Caxton had acquired detailed financial information from all beneficiaries by means of an annual census to help the Foundation determine the outgoings and income of those who registered as beneficiaries.[1269] She queried why this was necessary. For instance, grants such as winter fuel payments were not means tested.[1270] The census was scrapped until a regular payment system was introduced.[1271] Charles Lister accepted in evidence that extracts were taken from census forms (while they lasted) to inform the NWC when it considered grant applications but the weakness of this was that it did not provide sufficient clarity.[1272] So long as census forms lasted and yet further information was required, beneficiaries felt they were being repeatedly quizzed about the same essential details of their income and expenditure. The consequence of this was that although over half the applicants were recognisably in poverty, and (by definition) had a chronic infection, they still had to provide more details, and then sometimes further details, and then wait.

Subsequent years

Jan Barlow recognised that she had inherited a serious problem of delay in deciding on grant applications. She gave evidence that just one additional staff member had been brought onto the team to deal with the daily administration;[1273] and it had become obvious that there were a lot of beneficiaries on low incomes who needed regular support from Caxton.

Charles Lister also accepted that initially it had not been clear enough to beneficiaries what they might apply for. The website should have been more explicit. The annual report to the Charity Commissioners setting out the overall picture was not sent to beneficiaries.[1274]

Two months into Ann Lloyd’s term of office, Jan Barlow and she expressed concerns to the Government that Caxton needed to develop a vision and strategy, to review the administrative processes and the competence and capability of staff, to improve communications with beneficiaries, and to better understand what their needs were.[1275]

It therefore became clear during the first 18 months of the Foundation’s operation that the organisation was not working effectively, and in particular that beneficiaries were not being shown the sensitivity they merited.

Apart from occasional responses to issues raised by individual campaigners, there had been no formal dialogue with beneficiaries about what Caxton could deliver and how. This was in part due to the fact that there was no forum in which beneficiaries could meet either the staff or directors of the Foundation before the creation of the Partnership Group in 2013 and the newsletter did not start until December 2014.[1276]

Complaints were raised with the Parliamentary Under-Secretary of State for Public Health, Start for Life and Primary Care (then Anna Soubry) by a number of beneficiaries.[1277] She in turn raised those with Caxton. It was said that the Caxton Board appeared to be aloof and out of touch.[1278] The Minister was told that Caxton forms were excessively long and unnecessarily complicated. (It had used a form modelled on that used by the Macfarlane Trust).

In June 2013 there was the first meeting of a “Partnership Group”.[1279] It agreed that there should be a wider annual forum to which all beneficiaries should be invited. This never happened. Jan Barlow explained that was because the Partnership Group had been “slightly changed” because it had been primarily campaigners and “we were aware that there were a lot of beneficiaries who weren’t involved in campaign groups and, you know, who told us they didn’t feel represented by the campaign groups, so we ended up actually broadening membership of the group so that we had beneficiaries who weren’t campaigners involved”.[1280]

As late as June 2013 still nothing was made available to beneficiaries in terms of guidelines or information about support for which they could apply.[1281] In the summer of 2014 some very limited information was published on the website,[1282] but this did not set out the amounts that were likely to be awarded. Some limited information was also published in the newsletter in December 2014, but again, this did not set out the likely awards that would be made.[1283] No proper or sufficient explanation was given to the Inquiry as to why Caxton needed to be so secretive.

Just over three years after it had begun operations, the All Party Parliamentary Group (“APPG”) Report in January 2015 added both further objective criticism and further weight to existing criticisms of its operation. It commented on “many respondents’ dissatisfaction with the general demeanour of some trust staff, which they see as cold, dispassionate and unsympathetic”.[1284] Asked in evidence if she had any comments on this observation by the APPG, Jan Barlow said “No, not really.[1285] This seemed an expression of resigned acceptance of the force of what was being said: it was certainly not a repudiation of the view. Disappointingly she did not describe it as a call for urgent action, nor apparently see it as a reason to apologise. Even more disappointingly, when then asked if she took any practical steps in response, she did not recall. In short, where there should have been remedial swift action, there was no evidence that there was any. Though I have not lost sight of the fact that shortly after this Jan Barlow suffered a lengthy period of ill health, it was still her responsibility to see to such action being taken as best she could. She said nothing to satisfy the Inquiry that she had actively discharged that particular responsibility.[1286]

It was clear from the evidence that more should have been done to tell beneficiaries what they could apply for. As was the case with the Macfarlane Trust, the staff had guidelines to which they could refer (initially borrowed from the Macfarlane Trust).[1287] The reason advanced for restricting this to staff (given to the Partnership Group in June 2013) was that it might be misleading to publish it to beneficiaries: the fear was that beneficiaries might think this was all that was available, and not understand that they could make a claim beyond the categories mentioned in the office guidelines, which if they did would be considered (by the NWC).[1288] This was a poor reason. The office guidelines could have been published together with a statement explaining that was the case. Not to do so, however, left beneficiaries in the position that they were invited to register with a body which would give them money, but would not tell them how much they might get or what they might get it for. It is true that beneficiaries could contact the staff to ask them, and many did: and that the staff would be helpful as to what might be applied for when this happened. However, this had three drawbacks: first, it required a beneficiary to be proactive in finding out what might be the subject of a successful application; second, the staff, who were already hard pressed in dealing with applications, would have further demands on their time and goodwill; and third, much would depend upon the clarity and accuracy of the information given by the individual staff member, and this might have varied.

When an application was rejected, the absence of any clear published criteria for granting it in the first place meant that there were “no fixed criteria in relation to household income, but each case was considered on its individual merits, and overall household income and expenditure levels, and disposable income, were reviewed … beneficiaries were always advised as to the reason if a grant application was turned down, and the reason almost always related to an inability to determine charitable need.[1289] There was no information circulated in the office about appropriate levels of disposable income, nor were the beneficiaries told the maximum figures which were set out in the office guidelines. There was a general policy, however, that if there were “in excess of £3,000 in grants, or more than four grants exceeding £3,000, then the request will be presented to the NWC.[1290] Asked what the NWC was supposed to do with the information, Jan Barlow’s evidence was that it might inform other considerations.[1291]

In the absence of any fixed point of reference, consistency must have been difficult to ensure. In part this was mitigated by staff attending meetings to remind the NWC members of previous cases, with a view to ensuring some consistency. However, this system was hit and miss. Where a grant-making power has to be exercised in respect of people whose entitlement is equal, fairness towards those individuals requires the consistent exercise of discretion against established standards and principles. It is difficult to avoid the conclusion that although those involved were undoubtedly well meaning,[1292] the system as operated tended to unfairness.

An advantage of regular payments is that they may avoid the need for repeated applications for small sums. Another is that they may speed up the ability of an individual to respond to an urgent need; and a third that they are likely to be given upon a clear basis, so that they are not open to a challenge of inconsistency as between individual cases.

Though Caxton had determined at first to set up what could be seen as a regular payment scheme – £500 per winter as a fuel allowance – this was limited to a particular period of the year and intended for a particular purpose.[1293] It began to operate a broader regular payment scheme in 2014/15. The payments were designed to top up the income of a beneficiary to 60% (later 70%) of a median income.[1294] However, funds were severely restricted. Only 19% of the beneficiaries and the bereaved received such payments during that financial year.[1295] Pressure was put upon the funding levels by a rise in the number of beneficiaries between whom the annual financial allocation was to be shared. This rise came about because about a third of the way through the 2014/15 financial year the Department of Health asked the Skipton Fund to attempt to contact anyone who had ever received a Skipton Stage 1 payment, but with whom there had been no subsequent communication. The result was that the number of Caxton beneficiaries rose by nearly 60%.[1296] For 2014/15 however, the pressure on funds was such that the annual fuel allowance had to be reduced from the £500 beneficiaries had been promised to £350 in the winter: this was later to be topped up by £150 in March the following year. Since government funding was year by year, this experience of an expected (and promised) benefit not being paid in full increased feelings of financial insecurity for the following year, although the annual report did say that the regular payment scheme would continue.[1297] It should be one of the great advantages of a regular payment scheme that the regular receipt of money enables the recipient to make longer-term plans. The experience of finance not being available to cover fully the winter fuel allowances, coupled with the fact that the budget ran from year to year and might be determined finally after the year had already started, meant this advantage was less than it might have been: there could not be confidence that the expected amounts would actually materialise, especially if additional beneficiaries were again to come forward. It was not known how many would, so this could not easily be planned for.

One of the priorities which Ann Lloyd had set herself when she began as chair was identifying new beneficiaries,[1298] so that Caxton could serve an unsatisfied demand. Under the Trust deed establishing Caxton, it said: “Under the Skipton Fund Agreement (2) and at the request of the Trustees, the Skipton Fund is (subject to compliance with data protection laws) required to notify the Trustees of the identity of the Primary Beneficiaries.[1299]

When asked about this, Ann Lloyd said she had never been given a copy of the Trust deed and did not believe that the Caxton trustees appreciated what was said in it.[1300] There had been discussions with Skipton, and the chief executive had discussed the matter with Skipton. The Skipton Fund had not raised any issue of data protection as a reason for not providing information, but had relied upon staffing.[1301] Ann Lloyd, who described herself as “always a bit impatient to get things done”, thinks that perhaps she should have pushed harder to increase the numbers who applied.[1302] She did have some success. When she first came to the Caxton Foundation 555 primary beneficiaries were registered. By the time of the annual report of 31 March 2015, 1,080 beneficiaries were registered.[1303] The number had doubled in two years, and was increasing.

Increasing numbers of those entitled implies a need for greater funding to be available if those now coming forward are to have the same level of support as those who have previously benefited from the same Foundation. That might be thought to demand further commitment of resources by the government. Jan Barlow had made a request of the Department of Health for additional funding once it had become clear that Skipton were going to contact their beneficiaries to inform them about the Foundation. She was told that there was no additional funding and the Foundation would have to manage within its means.[1304]

A business case was accordingly prepared with a view to increasing the funding available for 2014-15.[1305] The business case was rejected in a letter of 19 February 2014. The letter said, simply:

“Ministers have decided that this is not the right time for an uplift in allocation, whilst they continue to consider how best to address a range of issues about the system of support available to those affected by contaminated blood, many of which were highlighted during the Westminster Hall debate on the topic on 29 October 2013. I am also sorry that I am not yet able to confirm the Caxton Foundation allocation for 2014/15 as ministers are still considering the overall apportionment of spend across the whole of the health system.” The letter ended with: “I would be happy to meet with you, if you would find it helpful to discuss your plans for 14/15.” [1306]

The business case submitted by the Foundation for funding for 2014/15 was thus rejected. No further funding was to be forthcoming for its proposals, and there remained uncertainties about the allocation for the Caxton Foundation. In consequence, amendments had to be made to the regular payments scheme which had been proposed – regular payments could be made to those whose income was less than 70% of median income, rather than the 80% which had been proposed; the scheme could not take account of any more than two children in a household; and it had to take into account any regular payment made at Skipton Stage 2, which meant that those who “were the illest, the most unwell, would, in all likelihood, not obtain a regular payment from the Caxton Fund [sic]”.[1307] Ann Lloyd described how she had been worried that “we simply would not be able to maintain a regular payment scheme and all the additional beneficiaries within our allocation”.[1308]

Charles Lister wondered (very much in retrospect though) if perhaps being fully funded by the Department of Health made the Board less inclined to challenge the level of funding.[1309]

In April 2013 an incident occurred. A number of members of the Contaminated Blood Campaign visited Alliance House, wishing to see Ann Lloyd and Jan Barlow. They understood they had a standing invitation to do so.[1310] They had no specific invitation for that date, and were seen by the staff to have barged in, in numbers sufficient to be intimidatory. This led to aggressive correspondence, initiated by Caxton officials who had not themselves been present and who expressed views about what had happened which were derived as hearsay from second-hand recollection, with little or no attempt to speak to those said to be directly involved.[1311] The significance of the incident is that it reflects the poor state of relations between those running or working for Caxton and people who were meant to be helped by it. Ann Lloyd told the Inquiry that she made an apology for this.

Commentary

In summary, the difficulties which beset the Caxton Foundation, and contributed to poor relations between beneficiaries and the Foundation, were principally:

  1. an absence of a user trustee (although Charles Gore had experience of Hepatitis C and Margaret Kennedy was appointed in 2014 as someone who could represent the user voice[1312]);
  2. the close links with the Macfarlane Trust where dissatisfaction had been expressed by beneficiaries;
  3. the failure to take more proactive steps to ensure that those who would be eligible to apply to Caxton were aware of its existence;
  4. the poorer practices during Caxton’s first year of operation;
  5. the initial shortage of staff to achieve a proper turnaround of applications;
  6. the frequent referral back to applicants for further information;
  7. the feeling of many that they were supplicants rather than applicants;
  8. a lack of any clear information as to what might be applied for, and on what basis an application was determined, coupled with uninformative rejections of applications; and
  9. the absence of any developed forum for an exchange of views between the Board and the beneficiaries.

The report of the APPG mentioned above recognised this at the time.

To Caxton’s credit, it was proactive in supporting beneficiaries dealing with debt. Charles Lister, and the Board, recognised that simply giving grant aid to an individual attempting to service mounting debt might achieve little in the long run. It was proactive in taking steps to provide the services of Pennysmart, Jayne Bellis, and Neil Bateman, to advise beneficiaries who wanted their help how they might access other sources of funding, and manage those they had: the debt counsellors were able to act as advocates for some of the beneficiaries and arranged to manage their debt on favourable terms.[1313] Caxton’s success in doing this deserves to be recognised as an achievement.

Much of this chapter has been critical of Caxton, in part because of the way in which the Government set it up, in part because the Government did not provide sufficient funds to meet the reasonable needs of the disproportionately poor membership of the class of beneficiaries and bereaved, and in part because of failures in organisation, administration and attitude. However, there was no lack of desire on the part, in particular, of Ann Lloyd and Charles Lister to do their best for a badly disadvantaged group.

6.10 Medical Records


The importance of maintaining accurate medical records, along with unhampered patient access to them, is explored in this chapter. It outlines the legislative and policy provisions for retention of records over time and gives examples of failures of these. It describes individuals’ concerns about the quality and content of their medical records and the resulting difficulties with claiming support.

Key Dates

1952 WHO identifies record keeping as key to reducing the risks of hepatitis.

1961 onwards guidance and circulars issued containing advice as to the retention and disposal of medical records.

2019 haemophilia patients informed that paper forms had been archived but not entered when digitising the National Haemophilia Database.

2024 latest iteration of the General Medical Council Good medical practice which sets out the professional obligations on doctors in relation to record keeping.


People

Professor David Armstrong Medicine and Sociology, King’s College London; member, Public Health and Administration Expert Group, Infected Blood Inquiry

Rob Behrens Parliamentary and Health Service Ombudsman, England

Professor Charles Hay director of the National Haemophilia Database


Abbreviations

UKHCDO UK Haemophilia Centre Doctors’ Organisation

WHO World Health Organization


One of the pillars on which the reduction of risks from serum hepatitis was based, as identified by the Expert Committee on Hepatitis of the World Health Organization (“WHO”) in 1952, was the keeping of accurate records (and the reporting which would come with it).[1314] As this section shows, the UK failed in achieving this. So widespread was its failure that many of those who would have expected record-keeping to be at least more or less accurate and reasonably complete, even if not perfect, have wondered whether in the case of their particular infections the reason is more than the effects of pressures of work, muddle and incompetence.

The destruction and disappearance of medical records has caused both practical difficulties and significant anxieties for individuals who were infected and their family members. The lookback exercises for both HIV and Hepatitis C have been severely hampered by difficulties with medical records.[1315] Practically, where medical records have been destroyed or could not be obtained from hospitals, GPs and health boards, individuals have struggled to evidence the source of their infection for the purposes of the financial assistance schemes.

Emotionally, for adults who were infected as children there is a particular desire to understand what happened to them as children. For family members of deceased individuals there is also a desire to understand family members’ treatment and what caused their death, particularly so for children seeking to reconstruct what happened to their parent or parents who were infected. The emotional toll of trying to obtain the records has been significant for some people.

The responses to people who have tried to obtain their records have been very varied with some hospital trusts and boards failing to respond or providing vague replies while others have been better equipped to provide a speedy, substantive response. For others there have been long delays and hard work involved in obtaining records.[1316] Cressida Haughton, whose father was infected with Hepatitis C, described trying to obtain her late father’s medical records as “like a battle of wills”.[1317]

Over time the legal framework that applies to medical records has changed with guidance being issued over the years requiring records to be kept for specified retention periods. Nevertheless, accessing records has continued to be problematic. A fundamental difficulty lies in the fact that there was, and remains, no central system where medical records are held. Therefore, individuals have to apply to specific NHS trusts, health boards or GP practices. For those patients with complex health needs, who have received treatment over a number of years, from a number of hospitals and/or have moved throughout England, Wales, Scotland or Northern Ireland over the course of their lives, this is particularly challenging. Changes to the NHS, with the closure of a large number of hospitals, particularly maternity hospitals, have brought other challenges as individuals have found that hospitals have long since closed down and medical records have been destroyed without any prior notification to patients.

For some hospitals there have been environmental issues that have led to the loss or destruction of records: floods, fires, sewage leaks. For many others, the administrative difficulties of keeping track of large volumes of records, patients’ name or address changes, or their movement across different departments and clinicians through the hospital have proved too much and records have been lost. The transition from paper records to electronic records (via microfiche records in some cases) has also resulted in a number of records disappearing, although going forwards the use of electronic records may well avoid many of the issues identified here.

These explanations address the majority of the cases where records have not been found despite requests, being either lost or destroyed. However, some examples that have been provided to the Inquiry raise concerns that records may have been destroyed or amended intentionally for malign purposes or, at the least, to avoid difficult questions.

The legislative and policy framework for retention of medical records

Each of the four nations had different legislative provisions but they were broadly similar in what they sought to achieve. In England, the Public Records Act 1958, as amended by the Public Records Act 1967, provides that records of NHS organisations are public records.[1318] The Secretary of State for Health and Social Care and all NHS organisations have a duty under the Act to make arrangements for the safekeeping and disposal of all types of records. Following the enactment of the Government of Wales Act 2006, the Public Records Act continues to apply to the records of health service hospitals in Wales pursuant to section 148(1)(e) of the Government of Wales Act 2006.

In Scotland, in 1937 the Public Records (Scotland) Act was passed.[1319] Section 12 of that Act provided that regulations could be made regarding the disposal by destruction of records “which are of insufficient value to justify their preservation”. In 1940, a set of regulations were passed which appear to have required the Lord Justice General, the Lord President and the Secretary of State to produce schedules of those documents considered to be of insufficient value to be retained by the Keeper of the Records of Scotland.[1320] One such schedule the Inquiry has located dated July 1958 and entitled The Scottish Hospital Service Destruction of Records[1321] provides that hospital records (including blood transfusion records) must be kept for six years after the patient’s treatment at the hospital, or three years if the patient dies at the hospital. This is a minimum period: the memorandum accompanying the schedules makes this clear – it “merely sets out the minimum period at the expiry of which hospital authorities may destroy certain classes of records, but it places no obligation upon them to do so, then or later.[1322] This guidance was not updated until 1 December 1993.

The guidance across time is summarised as follows:

Document name and date Adult records Obstetric records Paediatric records
England
1961: Retention and Disposal Schedule HM(61)73[1323] 6 years after the conclusion of treatment or 6 years after the death of a patient. Summaries of clinical notes should be preserved.
1980: Health Services Management: Retention of Personal Health Records (for possible use in litigation) HM(80)7[1324] 8 years after the conclusion of treatment or 8 years after the death of a patient. 25 years Until the patient’s 25th birthday or 8 years after the last entry, whichever is longer.
1999: For the record: Managing records in NHS Trusts and health authorities HSC 1999/053[1325] 8 years after conclusion of the treatment or death. 25 years Until the patient’s 25th birthday or 26th if the young person was 17 at the conclusion of the treatment, or 8 years after the patient’s death if death occurred before the patient was 18.
2006: Records Management Part 1[1326] and part 2.[1327] Hospital records 8 years (except clinical trials). GP records 10 years after patient died or had permanently left the country.Patients diagnosed with Creutzfeldt-Jakob disease, retention for 30 years from diagnosis, including for deceased patients. Oncology records should be retained for 30 years. 25 years Until the patient’s 25th birthday or 26th if young person was 17 at conclusion of treatment, or 8 years after death. If the illness or death could have potential relevance to adult conditions or have genetic implications for the family of the deceased, clinician advice should be sought on longer retention.
2021: Records Management Code of Practice for Health and Social Care[1328] Usually 8 years retention. Where “pioneering or innovative treatment” is involved, long term preservation should be discussed. GP records for deceased patients retained for 10 years. After 10 years of no contact and no transfer request, GPs should check the Personal Demographics Service for indication of death or other reason for no contact.[1329] Where no reason is apparent, records must be kept.[1330] Retention, including midwifery records, up to 25th birthday, or 26th birthday if the patient was aged 17 when the treatment ended.
Wales
1980: Welsh Circular WBC(80)9 8 years after the conclusion of treatment or 8 years after the death of a patient. 25 years Until their 25th birthday or 8 years after the last entry, whichever is longer.
1999: Welsh Health Circular WHC(99)7 Preservation, Retention and Destruction of GP General Medical Services Records Relating to Patients[1331] 10 years after conclusion of treatment, the patient’s death or after the patient had permanently left the country. 25 years Retention until the patient’s 25th birthday or 26th if an entry was made when the young person was 17; or 10 years after death of a patient if sooner.
2000: For the Record: Managing Records in NHS Trusts and Health Authorities WHC (2000) 71[1332] 8 years 25 years Retention until the patient’s 25th birthday, or 26th if the young person was 17 at the conclusion of treatment; or 8 years after the patient’s death if death occurred before the 18th birthday.
2022: Records Management Code of Practice for Health and Social Care 2022: A Guide to the Management of Health and Social Care Records WG44221[1333] and circular WHC (2022) 008[1334] 8 years. GP records for deceased patients: 10 years. Oncology records: 30 years, or 8 years after death. Creutzfeldt-Jakob disease: 30 years or 10 years after death. Long-term illness, or illness that may reoccur: 20 years or 10 years after death. Blood bank register: 30 years minimum. 25 years Up to the patient’s 25th or 26th birthday.
Scotland
1993: Guidance for the Retention and Destruction of Health Records MEL(1993)152[1335] 6 years from the date of the last recorded entry or 3 years after the death of the patient. Consideration to be given to longer retention for patients with genetic disorders. For GP records held by health boards, retention for 3 years after the death of the patient. Retention for 6 years or some other agreed period where the patient had left the country temporarily with an intention to return. Oncology records for 3 years after their death. Clinical trial records to be kept for a minimum of 15 years. 25 years after the birth of a child. Retention until the patient reached the age of 25, or 3 years after death if this is earlier.
2006: Management, Retention and Disposal of Administrative Records HDL (2006) 28[1336] Confirmed the continuation of the 1993 guidance.
2008: Scottish Government Records Management: Health and Social Care Code of Practice[1337] 6 years after the date of the last entry, or 3 years from the date of death if earlier. Donor records (blood and transplantation) 30 years after donation. GP records to be retained for the lifetime of the patient and until 3 years after their death. Oncology records: 30 years. Until the person’s 25th birthday, or 26th if they were 17 at the conclusion of the treatment, or 3 years after death. Consideration to be given to longer retention if the illness or death could have relevance to adult conditions or genetic implications.
2020 version of this Code of Practice.[1338] Retention periods remain the same. Retention periods remain the same. Retention periods remain the same.
Northern Ireland
1962: Northern Ireland Hospital Authority Circular HMC 75/62[1339] 6 years after the conclusion of treatment and 3 years after the patient’s death if they died in hospital. Blood transfusion service lab records retention for minimum of 1 year after death of donor.
1983: Department of Health and Social Services Circular HSS (OS)1/83[1340] (not including Central Services Authority records) 8 years after the death of a patient or conclusion of treatment. 25 years Until 25th birthday or 8 years after the last entry, if longer.
1996: Health and Social Services Executive Circular (SE) 3/96 Retention of Personal Health Records (for possible use in litigation) HSSE (SC) 3196[1341] 8 years after the last entry. 25 years Until patient turned 25, or for 8 years after the last entry or their death, whichever was longer.
2000: Health and Social Services Circular (PCCD) 1/2000 Preservation, Retention and Destruction of GP Records[1342] 10 years after the conclusion of treatment, the patient’s death or the date on which the patient permanently left the country. Patient records should be held within the Central Services Agency when a patient dies or goes to live permanently in another country. 25 years Until the patient’s 25th birthday or 26th if an entry was made when the young person was 17; or 10 years after death of the patient if sooner.
2004: Good Management, Good Records 218/2004[1343] (not including GP records). 8 years after the conclusion of treatment. Until the 25th birthday (or 26th birthday if they were 17 at the conclusion of treatment), or 8 years after death if death occurred before the age of 18.
2011: Good Management Good Records.[1344] Applicable to all health and social care records 8 years after the conclusion of treatment or death. GP should retain their records until the patient dies or is no longer a patient of the GP. Records should then be sent to the Health and Social Care Board[1345], which should retain for 10 years after the person’s death or they have left the country permanently. Until 25th birthday (or 26th if they were 17 at the conclusion of treatment or 8 years after the last entry, whichever is longer), or 8 years after death if death occurred before the age of 18.

Table 1. Summary of medical records retention guidance

It should be noted that these are the specific pieces of guidance dealing with the retention of medical records. Other parts of legislation form a wider legal framework that addresses a range of important issues such as the right to access health records,[1346] the requirement to keep clear, accurate, and legible records,[1347] the requirement to keep certain information confidential[1348] and to abide by data protection laws,[1349] and of course freedom of information.[1350]

The Inquiry obtained evidence from a sample of NHS trusts and health boards across the UK which showed that while trusts and boards were able to confirm that they currently follow national guidance and provide current policies on document destruction,[1351] and they believe that guidance was followed historically,[1352] copies of older policies were generally unavailable.[1353] In Lancashire, the Trust’s procedural documents – not medical records – were themselves subject to a retention period of ten years “after which time the items were destroyed both electronically and in paper format.[1354] This position changed in 2018 and all procedural documents are now held electronically.[1355] University Hospitals Birmingham NHS Foundation Trust was able to provide retention policies from 1999 onwards.[1356] The 1999 policy mirrors the national guidance. Although Cardiff and Vale University Health Board were unable to find policies in place prior to 2013, they found a letter to all clinicians dated 18 August 1999 confirming that a policy had been approved for implementation in 1999 allowing for the destruction of records of patients who had not attended for treatment in over eight years, or 25 years for obstetrics and paediatrics.[1357]

The existence of retention policies providing for destruction after a period of time does not mean that records were necessarily destroyed. One man who contacted the hospital for his medical records says: “by chance I knew the woman who was dealing with my request. She said ‘you’re lucky as they should have been destroyed three years ago but we actually still have them.’ I paid the fifty pounds to obtain my records, which included evidence of my blood transfusions.” This was significant because until then he had been told that there was no evidence to suggest he had ever had a blood transfusion. Once he had been provided with copies of his medical records, he was successful in his application to the Skipton Fund.[1358]

Another man was unable to obtain a full set of medical records despite these being requested by his treating clinician. The man then made two formal complaints to the hospital, and was initially told that his records had been shredded because they related to the pre-1991 period. He was then told that his records were in fact in the hospital’s archive on microfiche.[1359]

The onus that has frequently been placed on those who are infected and affected to request, correspond, chase and complain in order to access medical records has been weighty and unnecessary. It has caused a number of people to feel that the system is against them, and perhaps hiding things from them.

Issues identified by NHS trusts, health boards and clinicians

From the sample of evidence the Inquiry has received from NHS trusts and health boards in the UK, and from clinicians, a number of themes can be identified in relation to the destruction and retention of medical records in addition to the application of retention policies.

Firstly, reorganisations within the NHS have resulted in a large number of records being destroyed. Alistair Tough, former archivist at Glasgow, states that following the creation of NHS trusts in 1993/94, there was widespread destruction of non-current clinical records, particularly those dating to the 1950s, 1960s and 1970s.[1360] A similar point is made by Louise Williams, archivist at the Lothian Health Services Archives.[1361] Suzanne Rankin, chief executive officer of Cardiff and Vale University Health Board, acknowledges that “In the 1970s, documents stored at the Cardiff Royal Infirmary were moved to the University Hospital of Wales as part of the Health Board’s restructuring. In this move, it is possible that some documents and records may have been lost or destroyed.[1362]

Records were transferred to microfilm and microfiche from “legacy organisations”, that is hospitals that no longer operate in Northern Ireland, with hard copy documents being destroyed.[1363] There was a particularly complex process for the transfer of documents when the Royal Liverpool Hospital opened in 1978 and when the Royal and Broadgreen Hospitals amalgamated in 1995:

“Prior to the opening of the Royal Liverpool Hospital (RLH), I understand that the closing hospitals in Liverpool were allocated a new RLH number to each convert their records to the same numbering system. This resulted in some patients having more than one number in the RLH … The non-current records at the opening of the [RLH] which needed to be retained were microfilmed, and if a patient presented to the (new) RLH their microfilmed records were copied under their old case-note number and another volume of records was commenced. Once discharged, the record was then microfilmed and then filed behind the first volume microfilm, then second volume etc. The Royal and Broadgreen Hospitals amalgamated in 1995 and it is understood that the same process was followed.”[1364]

Secondly, records management in some locations was previously managed locally by services, for example in Glasgow[1365] and Belfast,[1366] resulting in different practices in respect of both the destruction and the recording of the destruction of documents, leading to further uncertainty about what has happened to records. In addition, the local management of records means that there may be multiple locations where records are held in separate repositories, and where transfer from localised to centralised records management has taken place then documentation may be limited as to what was and was not transferred.[1367]

Thirdly, the changes from paper records to electronic records, sometimes via microfiche, have also caused some losses. In Swansea, Dr Saad Al-Ismail, consultant haematologist from June 1982 to February 2018, explained that:

“up to 1980, all the blood transfusion documents, that is blood and blood products on part of haemophiliacs, were actually paper documents, and they were since, being many years, been lost. Then between 1980 and 1984 we acquired the computer system called TelePath, and -- oh, maybe before that we acquired a computer system. Anyway, so, at 1985 that was changed. It may be changed to TelePath, and we were told that the previous computer system we -- would be microfiched and stored. And -- but that actually -- it was microfiched but it was unrecoverable, I was told by the head of blood transfusion, when the first request from the Infected Blood Inquiry came to the Chief Executive. In 1985 to [1991] was TelePath, and this is the one which was microfiched. And then after 1991 until 2003 we changed to another system, called ACT, and when that laboratory system moved to another system called MasterLab, in 2003, all the documents were transferring to MasterLab. So anything really which was in TelePath -- if you like, you would not be able to get any documentation after 1991 from our computer system, unfortunately.”[1368]

Fourthly, different names of patients have caused difficulties, as have patients being seen in multiple departments. In Belfast “In a number of other instances, it emerged that ‘known’ names or middle names had been used to register patients, rather than the patient’s actual forename.[1369] This is an experience mirrored by the evidence of those infected and bereaved family members who have struggled to find records because of name changes and spelling errors in names. David Armstrong, professor of medicine and sociology at King’s College London, highlighted that patients were meant to have one set of notes but when they were seen in different departments there would be “lots of sets of notes that were circulating in the hospital under these different consultants and, now and again, an attempt would be [made] to pull them all together into a unified system, but it depends on how many visits the patient was making … it became very, very difficult to carry through those notes to follow the patient.[1370]

Fifthly, in many haemophilia centres, patient records were kept separately to the main hospital records. Dr Gerard Dolan, consultant haematologist at the Queen’s Square Medical Centre, Nottingham, from 1991 until 2015, has told the Inquiry that when he arrived at Nottingham “there had been a significant issue with case records” and “some consultations were recorded on discrete hospital out patient paper and some of these did not get filed.”[1371] The use of separate records was partly pragmatic to ensure easy access should a patient attend a haemophilia centre during the night. In addition, Professor Gordon Lowe of Glasgow Royal Infirmary told the Inquiry:

“every patient had case records, obviously. For a severe haemophiliac, these could become several volumes, several feet high, over the years from the number of submissions that they had. And we always wanted to keep all the records available in the haemophilia unit. Now, as you know, records can be destroyed at intervals by managers and records departments just wanting to keep their shelves clear, but there was a general recommendation by the UK Genetic Disorder Society, or whatever it was called -- I can’t remember -- that it was preferable that these records not be destroyed. And there was a very good reason for that in patients with haemophilia because, as you will know, it’s transmitted by female carriers, and it skips generations. So if a patient, say, dies and the records department say, ‘Well, that’s that’, and destroy the records, the problem is that 40 years later some granddaughter becomes pregnant and wants to know if she is a carrier and what kind of haemophilia was it. So in general we tried to keep all the records in the haemophilia centre, and the number [of] filing cabinets increased from about I think one, when I arrived in 1975 -- at last count I think it’s about 20 filing cabinets.

If a patient died, we would put [the records] in a locked cupboard within the haemophilia centre, because we occasionally had the problem that the records department said seven years, or whatever is the current policy, and would destroy them. So we tried to retain them as much as we could. But, in practical terms, we had a small folder in the unit, as I think many other centres did, which listed the basic details of the patient and what treatment they were on and information like the family tree and the UKHCDO [UK Haemophilia Centre Doctors’ Organisation] registration number, so that if a patient turned up in the middle of the night and for some reason the case sheets had gone missing, they had attended another clinic, they had gone to a [surgical] ward for operation, we had the essential information that was needed to know what kind of haemophilia it was and what the treatment would be.” [1372]

Similarly, Dr Al-Ismail stated that prior to the proper establishment of the Swansea Haemophilia Centre medical records “would have been in the general records [and] would not be in the haematology department. It’s only when we moved to Singleton that we kept the haemophiliac notes in the Haematology Department.[1373]

Moreover, some HIV-positive patients treated in haemophilia centres had parts of their records kept separately to their haemophilia records. For example in Cardiff, Professor Peter Collins stated that when an audit of medical records was undertaken:

“the only key documents that were missing which came up in the audit by Dr Hill was that the people’s HIV results were filed -- they were all filed together, separate from the notes. As far as I’m aware, those are the only key documents that were not in the notes that one would have expected to be in the notes. When I arrived in Cardiff, all of the notes of the people who had died of HIV were in a cupboard in the office that I inherited and we have kept those notes ever since.” [1374]

In addition, a number of patients treated by Professor Christopher Ludlam have raised concerns that Professor Ludlam kept a separate file regarding patients’ HIV/AIDS infections.[1375] Professor Ludlam has stated that:

“For those patients who were anti-HTLVIII positive I kept short ‘thumbnail’ sketches of pertinent clinical information along with laboratory findings … I kept a small number of notes (no more than a single sheet of paper for each patient) separate from the main hospital case records in relation to people with haemophilia who came to see me early in 1985 in response to the December 1984 meeting, the circular letter written to all patients and the encouragement of the haemophilia staff to inquire about their anti-HTLVIII status. These notes were kept separate because as a team we decided at this time that we would not make any record related to HTLVIII or AIDS in the patients’ notes because of discrimination against positive patients even within the hospital.”[1376]

The multiplicity of locations for the storage of records inevitably increased the difficulties in obtaining records and identifying whether or not they had been destroyed.

Finally, some individuals have simply been unable to establish what has happened to their records – there has been no explanation of what has happened to them or where they might be. For example, Derek Harrell obtained a record from his GP confirming his admission to and discharge from hospital to undergo a procedure on his nose in August 1981 at the Queen Mary’s Hospital in Roehampton. However, when he attempted to obtain a complete set of his medical records, he received a letter stating that “despite extensive searches we have been unable to trace your medical records relating to your stay here in 1981.”[1377] Rosamund Cooper was treated at the Manchester Children’s Hospital, the Manchester Royal Infirmary, the Withington Hospital and the Queen Elizabeth Hospital, Birmingham. After being diagnosed with Hepatitis C, she wanted to identify when she was tested for it so she tried to get copies of her records from the Manchester Children’s Hospital with the help of her specialist nurse. “However, having said, ‘yes, no problem, leave it with me,’ she then rang us back to say my notes had, ‘gone down a black hole’ and she could not understand it.[1378]

Environmental destruction

Environmental factors have been put forward on a number of occasions as an explanation for unavailability of records. It is clear that there have been a series of environmental incidents on some hospital, or record storage, sites over the years.

For example:

However, it is also clear that while some infected individuals and their affected family members have been told that records have been destroyed due to environmental incidents, some trusts or health boards are now unable to confirm that this is what happened. For example, Edward Massey was treated at the Manchester Royal Infirmary during the 1960s to 1980s and applied for his medical records shortly after his diagnosis with Hepatitis C in 2005. He was told that most of his records: “had been destroyed and that they had experienced a flood in the past. I also applied to Lancashire and South Cumbria Agency for my medical records and was informed they had also been destroyed.”[1385] The Trust has been unable to confirm the existence of a flood: “Despite enquiries made with Manchester Royal Infirmary (MRI)’s senior management team, Clinical Governance team, Estates & Facilities team, Subject Access Request team and Medical Records team, we have been unable to verify whether such an event occurred. This is due to the passage of time since the alleged event and the present day.[1386]

Nevertheless, one long-standing staff member could recall “a series of floods at MRI that affected the medical records library, which used to be in the basement”. However, “due to the passage of time, this member of staff cannot recall exactly when the floods occurred but does believe they were around the time in question (mid-1980s).[1387] The Trust confirmed that no records – either patient case notes or other records that would reference a flood – exist from that time because of the Trust policy on retention, which means that these records have been destroyed.[1388]

There are numerous other examples of an individual being told, often verbally, about an environmental incident destroying records but the Trust has been unable to find any documentation about it.[1389] Whereas in other contexts such an absence might suggest that the postulated event never actually happened, in the case of medical records it cannot be taken as evidence that a patient’s memory is wrong. Incomplete though it may be, it is often the only evidence there is to resolve any question about the patient’s treatment or infective status. It may be hearsay, but if there is no evidence to the contrary it will be sufficient proof.

Alasdair Cameron who was infected with Hepatitis C from a blood transfusion during an ileostomy, states that:

“There are unfortunately no medical records available from the time of my operation. I am aware from Sheila’s line of work [his wife is a retired consultant clinical scientist in virology] that medical records were poorly stored in Scotland in the 1970s, with mould and water damage not being uncommon. The staff in the Gastroenterology department on Level 7 of Gartnavel did unsuccessfully make enquiries in an attempt to discover any medical records from the time and believe they were routinely destroyed after a set period.”[1390]

Richard Titheridge’s wife was infected with HIV through blood transfusions during surgeries for ulcerative colitis and septicaemia in 1984 and 1985. When she was diagnosed in 2003, Dr Patricia Hewitt attempted to trace the records of the transfusions on behalf of the National Blood Service and the hospital located microfilmed medical notes. Richard then tried to access her records in 2007 and was told they had been destroyed in a sewage leak before 2003. He tried again, and explained that the records had been accessed on microfiche in 2003. The response was then that medical records were routinely destroyed after 15 years. His MP also tried to assist but did not succeed in accessing the records. Richard reflected: “She was the first person to have a Caesarean section and total colectomy at the same time. Her consultant even asked her to speak to his students in an auditorium because she was such an important case. Why would you destroy those records?[1391] The healthcare trust told the Inquiry that they had made attempts to locate information about a sewage leak and that whilst it appeared that a flood may have occurred, corporate records were only retained for seven to ten years and therefore no information was available.[1392]

The lack of a record of such environmental incidents is often because there has been no historic requirement, either nationally or as part of individual trust or health board policies, to record and evidence environmental destruction of medical records. Sometimes it is because the documents recording such incidents have themselves been destroyed under retention policies. [1393]

Concerns relating to the quality and content of medical records

A number of concerns have been raised about the quality and content of medical records when records have been obtained by individuals. In particular, concerns relate to inconsistency between what is recorded in the notes and the information that was given, or not given, to a patient; and inaccurate information being recorded in the records.

The Inquiry has heard substantial evidence about the differences between what individuals recall being told, or not told, orally and what is recorded in their medical records. This is discussed further in the chapter on People’s Experiences. However, in addition, there are examples of matters recorded in medical records which simply have been wrong. For example, a man suffered a traumatic operation as a child and received a blood transfusion and blood products. He was later diagnosed with Hepatitis C and describes finding out that his medical records contained “many falsehoods” such as that he was “married; had two kids; false teeth and was an intravenous drug user!” He states that his request that these references be “expunged” from his records was granted in 2007.[1394] A widow whose husband died in 2013, has found an entry in his records dated 11 December 1981, which set out a “Flare up of symptoms” around two weeks after he received NHS concentrate. However, an identical entry is recorded in her father-in-law’s medical records. The two men shared the same name.[1395] In her oral evidence to the Inquiry the witness put it in these terms: “How can you have two separate patients with exactly the same comments? That’s my question.” She further stated: “It looks like this entry has been cut and paste like a piece of paper over the top of it which concerns me too because I didn’t get the originals, I had scans. So I couldn’t look and investigate that any further.”[1396]

Valerie White’s son Martin was diagnosed with HIV as a teenager after receiving infected Factor 8. She sought his medical records:

“There are absolutely no notes in Martin’s medical records to say that he was being tested, when he was being tested, when he was diagnosed, or when we were informed of his infections. It seems as though one minute he was normal and the next minute his notes report that he was HIV positive. When I applied for them, I had hoped that Martin’s medical records would clarify what had happened to Martin for me, but to my disappointment, they did not.”[1397]

The accuracy, or otherwise, of references to alcohol use has been of particular concern for very many witnesses, particularly for those with Hepatitis C. There were numerous examples in the evidence of this[1398] including Annette Hill-Stewart, whose husband died in 2013 and in whose medical records there were references to his alcohol intake, who said:

“I was horrified when I read that. I have never, ever seen Angus with a beer in his hand, a spirit in his hand. We have -- he was not a pub visitor. He hated pubs, wine bars, nightclubs, and indeed when we used to go on holiday we would frequently fall out because I would want to go to something special after and he would be adamant, ‘No, we’re going back to the room by 10.30’, and there we would be in the most exotic location and he wanted to go back to the room. In the whole time that I knew Angus he would like a glass of wine, we’d cook together and have a glass of wine and go out for meals and have a glass of wine but he was not the type of person that would go out drinking, not at all.”[1399]

Ruth Spellman, whose late husband Bill was infected with Hepatitis C through blood transfusions, says: “I am really quite shocked at the mention of excessive alcohol in Bill’s medical notes as it does not sound true to me. I lived with Bill for 30 years and I never recall him drinking to such levels. I do not see how it is possible that Bill was recorded as alcohol dependant and do not know whether he ever had the opportunity to review his notes. He was doing a very responsible job and we had three young children.[1400]

Gideon Bullock’s father Kenneth died from Hepatitis C. He described his last days as “unbearable to witness” but “In the wake of his death, we had no idea of the story which was about to unfold, and only a few weeks after his death, we discovered the misdirection.[1401] The GP records showed he had been diagnosed with non-A non-B Hepatitis in 1983 “in view of his exposure to blood products[1402] but “this diagnosis was the first and last mention of contaminated blood. Every single report and update on the state of his health by the St. Thomas’ clinical team at The Haemophilia Centre over that 16 years stated acute alcoholism as the cause of his liver disease.” Not knowing that his mother had obtained the GP records, St Thomas’ told them: “At no time has Guy’s and St. Thomas’ suggested that Mr Bullock was an Alcoholic.[1403] Guy’s and St Thomas’ NHS Trust did not offer a response when contacted by the Inquiry. In April 2017, in his last speech in Parliament,[1404] Andy Burnham MP read from a letter Hazel Bullock, Kenneth’s wife, had written about her husband: “he was refused a liver transplant … and left to die still unaware of these appalling accusations. He did not drink alcohol … My husband died completely unaware of these accusations that have shocked family, friends and colleagues alike.[1405]

Doctors have generally responded to such criticism by defending their records as being an accurate representation of what they were told.[1406]

As a final note on the contents of medical records, it is not uncommon that the author of a record goes beyond matters of direct clinical relevance. They may express a personal view about the patient which has little to do with objective clinical observations, diagnosis or treatment. These may range beyond issues of the supposed alcoholism of a patient, to statements such as those of which Della Ryness-Hirsch complained (“neurotic mother”)[1407] which are gratuitous and have no proper place in the records.

Wayne Gathercole’s medical notes contain the observation that his infection with Hepatitis C “seems to be more of a problem for Wayne’s mum than it is for Wayne” and he recalls how his parents were talked down to and dismissed, particularly his mother when she questioned things.[1408] Such statements reveal attitudes of superiority which should have no place in what should, in principle, be a process of partnership in ensuring good care for the patient.

Gaps in records

The consequence of destruction policies is that where they are applied, only more recent documents may survive. The consequence of archiving documents in places which have been affected by environmental destruction is the same. Neither explains why there should be a gap between “old” records and “recent” records in which nothing is to be found. Yet it is this which a significant number of infected and affected people have reported. The reports are not all of the same kind. They are of missing records relating to particular procedures or appointments, to particular years or to particular types of record.

There are a number of examples:

Inaccuracy of UKHCDO records

People with bleeding disorders who have found gaps in their records have reviewed the data held about them on the UK Haemophilia Centre Doctors’ Organisation (“UKHCDO”)[1414] National Haemophilia Database to see if it would provide answers. However, it was collated over time from patient records[1415] and is riddled with inaccuracies despite the efforts of the UKHCDO. There are numerous examples including:

Clearly the UKHCDO records are only as good as the information provided to them by the treating hospital, which in turn is only as good as the record made by the clinician making the entry, and the person transmitting the data from the hospital to the UKHCDO. These serial opportunities for human error to play a part have resulted in significant inaccuracies in the records.

The possibility of human error did not stop when the data reached the UKHCDO. There also appear to have been difficulties in relation to the entering of the details into its database. Consequently, in a July 2019 letter a number of individuals were informed by Professor Charles Hay, director of the National Haemophilia Database, that medical records from paper archives had been missed out:

“on recent inspection of the paper archive we discovered that some details, from paper forms submitted to the database in the seventies through to the nineties, were archived but not entered into the electronic record. These forms were submitted many years ago by your Haemophilia Centre when the database was held in Oxford before paper reporting was phased out in 2000 … We apologise unreservedly that you were not sent all the information after your initial request and for any distress or difficulties this may have caused. Please be aware that some paperwork had other names on it in addition to yours, and therefore these parts of the records have been blacked out to preserve confidentiality.”[1421]

Significant interference in medical records

There are a handful of examples that raise serious issues of intentional interference in medical records. Unfortunately, due to the passage of time, it is difficult to reach any firm conclusions on what happened in these individual situations. Nevertheless, they do raise concerns that there may have been a closing of ranks in certain contexts with the result that someone thought it prudent to remove items from medical records.

Della Ryness-Hirsch has provided written and oral evidence to the Inquiry about her son Nick’s infection with Hepatitis C and his death in 2012. Nick was treated at Great Ormond Street Hospital (“GOSH”) from 1976 until 1985. He first received Factor 8 on 3 November 1980 due to a lack of availability of cryoprecipitate and notwithstanding his parents’ expressed concerns about the safety of American blood products. In 1985 GOSH wanted to switch his treatment to American Factor 8 and so his care moved to the Royal Free Hospital. His mother gives the following account:

“We returned to GOSH the same day but they refused to give us the file with Nick’s medical notes. I don’t remember who it was at GOSH that refused to hand over his records. However, about 2 weeks later a nurse from Great Ormond Street rang me at work and said if we’d like to meet her she would give me Nick’s file. She met us in the street. Although I recognised her at the time I can’t remember her name now. I took the medical records to the Royal Free. I thought they were complete but I couldn’t have known for sure. I don’t remember looking through them until we got to the Royal Free as I thought it was the right thing to do. We looked at the notes with the head nurse of the haemophilia department at the Royal Free whose name was Christine Harrington. There was a dated page with tramlines scrawled across, within which was written in large letters, ‘neurotic mother’. I recognised that this entry was from the day I kicked up such a fuss about refusing to allow Nick to be given American factor VIII in early 1980.”[1422]

After her son died, Della Ryness-Hirsch applied for his medical records but the “neurotic mother” note was missing. She states that she “rue[s] to this day that I wasn’t savvy and didn’t photocopy the notes.[1423] She only received the records after:

“a bit of a struggle but at least I managed to obtain them. It took several physical meetings over the course of a month to eventually obtain both sets of records. That is when I first realised entries were missing. I have not been able to trace any testing for hepatitis or HIV within the GOSH records however, within the Royal Free records it is very apparent that Nick was regularly tested for both.”[1424]

Paul Sartain was infected with Hepatitis B and Hepatitis C and recalls attending an appointment in the 1990s and reading a letter from a pharmaceutical company offering to donate money to the hospital charity if their product was used: “it was clearly on display in my file and I remember reading it upside down across the desk during a clinic review.” However, when he received his records, he was unable to find that letter.[1425] The Royal United Hospitals Bath NHS Foundation Trust confirms that it has not been able to find a copy of this letter in the witness’ medical records.[1426] There are no further details that are available about the circumstances in which it was removed, but there is an obvious motive for its deliberate removal if that is what happened.

One woman who received a blood transfusion on 23 May 1986 states that she was told by the ward sister that she needed a transfusion during the early stages of labour due to anaemia. She recalls that she had a cannula inserted and she was “hooked” up to blood and the transfusion was started. Her recollection is that the transfusion was then stopped by a nurse before it was finished and she was told she needed to go for an ultrasound. She was diagnosed with Hepatitis C in 2016.[1427] When she requested her medical records for the purpose of applying to the Skipton Fund she was told some of her medical records were missing:

“There are no records for the day of my transfusion, 23rd May 1986. There are doctors notes for the 19th, 20th, 21st, 22nd May and then for 24th May until I was discharged. There are no nursing notes for any part of the admission. There is nothing in my records which confirms that I had a blood transfusion on 23rd May 1986, or that I had an ultrasound on that day.

The discharge letter from my hospital admission in 1986 is ticked to say that I did not have anaemia. It is this that worries me most; I feel that the reason that I needed a blood transfusion has been hidden. It is as if they distorted the truth to cover up what they were doing.” [1428]

The witness made a complaint to the Trust and has explained that:

“I actually went up to the hospital in person, went to the reception desk and asked them to bring somebody down from the office to hand them my complaint letter and all a sudden they instantly found everything, except for the notes.

It took, all in all, about ten months from initial request for them to supply me with notes that they said they’d got and a letter to say that they thought that, due to the timescale and the building moves, that any letters from that time, except for the ones that I got either side of that, had been destroyed or lost and they’ve never come up with the day of the 23rd.” [1429]

In a letter, dated September 2017, the Trust has stated that a “thorough search and investigation” was undertaken to try and find “any additional and/or secondary filing which may contain information in respect of a blood transfusion” in May 1986. No documents were found.[1430] Therefore, the single day of records has not been identified.

Commentary

There is considerable material to show that patient records were not well kept, and had not been well kept for years before the periods of central interest to the Inquiry. Professor Armstrong said in his evidence that despite attempts to bring structure and coherence to medical records, removing what was extraneous continued to be haphazard“Everywhere”.[1431] He gave evidence about the poor quality of records systems and their generally patchy application in practice.[1432]

Given the evidence of the general poor quality of records systems across the whole of the NHS in the UK, the likelihood is that in the majority of cases the reasons why records which ought, in line with retention policies, to be available have not been found are probably a mixture of incompetence, a lack of proper systems, and the problems inherent in keeping paper records – the changing of patient names and addresses, the closing of hospitals, the occasional environmental problems which have arisen in storage facilities, and the difficulties of linking hospital and GP records as well as the records from one hospital department with those in another.

That said, the possibility that there may have been occasions in the past when records may deliberately have been left incomplete or have been filleted remains. There is clear evidence that on at least one occasion a patient has been deliberately tricked into having an unwelcome transfusion in circumstances in which at least some other health professionals have been complicit.[1433] Compared to deception like that, the filleting of records by some health professionals in respect of blood-borne infections would be much less difficult to achieve, may involve no other health professionals, and is thus perhaps easier to contemplate as having happened.

It has been the more recent need of many people, so as to secure registration with support funds, to first be provided with their historical medical records that has brought to light more examples of missing records.

Two particular series of allegations require particular examination. First, there are reports that there are some records missing which should be there – and these may also form a missing sequence in records which otherwise appear complete. Yet those missing parts are to the mind of the patient the critical periods for them being able to establish that their memories are accurate. Second, a number of litigants in the HIV litigation of the late 1980s and early 1990s report that the records of the critical period of their treatment can no longer be found.

Since the effects of general poor record-keeping, described above, would be expected to be random as between patients, times, and conditions, and these reports suggest something which instead of being random is linked to the particular patients, times, and conditions, there is reason to wonder so far as people with bleeding disorders are concerned if there is some feature linked to this litigation which is part of the explanation. Though this is a possibility, there is no documentary or oral evidence which suggests that records were legitimately removed because they had a part to play in the litigation and were never returned. It is to be expected that some hint of this would be documented. It does not seem to be the case. This reason must therefore be given only very limited weight. It can largely be discounted. In short, if there is a link between the litigation and a gap in the records, this is not for an acceptable reason.

Given the evidence of Professor Lowe, and the credibility of two points he makes – about the size and number of files accumulated by many people with haemophilia, and the need to have swift access at any time of the day or night if urgent treatment is needed – it seems likely that in a number of haemophilia centres there was a good reason to extract recent records specific to treatment for haemophilia from the patient files, and keep them ready to hand in the centre. However, if extracted for this purpose, such files should have been returned to their parent files afterwards.

It approaches probability that on some occasions, and in respect of some patients when the fear of AIDS was at its height, and clinicians were scared of the stigma, abuse and even physical attack some of their patients might suffer, details in hospital records which related to HIV infection or treatment were removed. The purpose of this would be concealment of the facts – but the purpose would have been to protect the patient. The records removed may have been stored where fewer people had access to them, where they would have stayed and because, once there, no-one thought to repatriate them with the main records they have then remained missing from those records.

If it happened that records were extracted in this way to protect a patient’s confidentiality, it should first have been discussed with the patient – but the evidence is persuasive that on very many occasions clinicians thought themselves entitled to take decisions about a patient for that patient. Whether that happened in any particular given case may well now be lost in the passage of time.

It also is not unreasonable to suppose that documents specific to haemophilia – testing, treatment, infection, research and diagnosis – which had been extracted from general storage in a hospital to be located at the haemophilia centre for the convenient efficiency of the centre may not have been repatriated to their parent files. The reasons for not being scrupulous about repatriation may have been a mixture of pressure of time, embarrassment that treatment at the centre had led to causing disease, worry about litigation, concern that gaps between test results and delivery of diagnosis might be too long, and a sense that the fewer people knew about a particular case of AIDS or hepatitis the better. Of these possibilities, only pressure of time comes close to being acceptable as a reason for not reuniting extracted records with their parent files in due course: the others are not.

If documents were selectively removed from files (and not returned) for any of the reasons just explored, they may not have been intended for destruction. However, such is the extent of the evidence that document retention was badly managed that it seems likely that over time these documents have in one way or another become irretrievable.

Though there are the reasonable possibilities discussed above, there is in general no way now of knowing in any individual case if it occurred, or whether records which are missing have been destroyed because it was thought to be policy to do so, or because there has been a failure of storage facilities to keep them safe and secure from flood, fire, pest or other inadvertent destruction. Or because there have been individual or concerted attempts to remove them in order to protect clinicians who may have felt they had failed their patients and wished to hide the evidence of that.

I have already commented upon the disappearance from Department of Health files of significant material relevant to parts of the litigation, and concluded that some documents were deliberately destroyed in the Department of Health. However, it would not be right to conclude that this sheds any light on what happened to individual medical records.[1434]

In summary, there are reasons for concern. The passage of time and the incomplete nature of the available evidence means that it is not possible to reach firm conclusions in any individual case. Although there is suspicion that some health authorities or individuals reacted in a similar manner to what was happening around them, by hiding, removing or destroying some records that might be an embarrassment, there is insufficient evidence to conclude that a finding to this effect is justified across the board. I have, though, noted that the retiring Parliamentary and Health Service Ombudsman, Rob Behrens, was reported as recently as 17 March 2024 as describing part of his experience over the last seven years as “having to confront a cover-up culture [within the NHS], including the altering of care plans and the disappearance of crucial documents after patients have died and robust denial in the face of documentary evidence”. He plainly had in mind cases the facts of which are not, as they are in this Inquiry, difficult to be more certain about because of the passage of time and the fading of memories. His words add strength to the reasons for concern about what may have happened in the case of infected blood and blood products.[1435]

The best way, perhaps, of summing up what the Inquiry has heard is that expressed by those infected and affected represented by Thompsons’ solicitors in their closing submissions to the Inquiry:

“The Inquiry has heard copious evidence about problems [that] have been experienced by patients/ parents/ patient representatives across the country in accessing medical records. This has had the effect of limiting the ability of patients or their relatives to gain a proper understanding of what happened to them or their loved ones. In many cases, missing or incomplete medical records have created a justifiable sense of injustice or, in many instances, suspicion about the fraudulent removal, destruction or concealment of records.”[1436]

As they put it, it is to be expected in these circumstances that many have suspicions. In that sense, their feelings of suspicion are justified: but because so many years have passed, and because the reasons for the loss or disappearance of records are so difficult to establish, it is not possible to reach any firm conclusions as to how well-founded those suspicions are.

What lessons are to be learned from this? On any view the destruction and disappearance of medical records has caused significant harm to individuals. This is its main effect. But it has also resulted in a loss of trust that is harmful both to patients and to the NHS more widely. It is critical to the future of the NHS that patients can generally trust what they are told, and trust that the NHS has their best interests at heart. Keeping accurate and complete records, and making them available on request, demonstrates the openness, transparency and rigour which patients and those close to them associate with a careful, caring system of healthcare. This has been sacrificed in the present case, such that patients have lost the trust they should have. It probably happened because good record-keeping was not given the status it requires. It will happen again if this does not improve. Steps must be taken to ensure it does not.

The same problem of poor quality record-keeping, and of the accessibility of data from them for purposes where that data can be kept anonymous, has been highlighted in the evidence of Professor Mark Bellamy, Professor James Neuberger and Dr Alison Cave (respectively the current chairs of the Serious Hazards of Transfusion Scheme, the Advisory Committee on the Safety of Blood, Tissues and Organs and chief safety officer of the Medicines and Healthcare products Regulatory Agency) that there has been a large level of under-reporting, so that data important for public safety is never recorded in any document or on any system even before questions of its retention or destruction arise.[1437] Professor Bellamy observed that: “For example, in the Trust where I work, blood transfusion does not feature in the electronic patient record. It is still prescribed, administered and recorded on paper, which then sort of disappears into some giant library somewhere and, in theory, gets scanned and put on the system.[1438]

For the future, there are clear advantages to the use of electronic records over paper records and a transition to such records is continuing across many NHS trusts and health boards.[1439] Although the process of moving to electronic records has resulted in some loss of records, there are considerable advantages over paper records including protection from physical deterioration of the records and providing audit trails for amendments and deletions of and within records. Difficulties remain however in relation to the integration and interoperability of records between hospitals and GPs and across different services within the NHS.[1440] Entry into the records, and maintaining the systems, still depends on human action. These are both points of vulnerability. Those involved (almost all health professionals) should be clear that any failure of record-keeping is likely to result in some loss of trust in the system they serve. The accuracy of their work is important. So too is ensuring that what ought to be recorded actually is. If an electronic record is to be produced, it may be assumed too readily at present that it contains all the important information about the patient’s past care that might be necessary for the future management of their care: it is plain that some matters which ought to be recorded may not be, those that are may not be accurate, and that the reader of those records may have to inquire as to whether there are any other records “out there” which may be relevant but are missing.

6.11 National Support Schemes

This chapter looks at how the need for reform of the Alliance House Organisations gave rise to four national support schemes. It considers how these national support schemes operated and the impact of the disparities between them.


Key Dates

2013 the Government considers reform of the AHOs.

November 2014 Prime Minister agrees to wait for the release of the Penrose Report before consultations on reform proceed.

January 2015 APPG publishes a report on the AHOs.

March 2015 the Penrose Report is published and the Prime Minister announces consultation into the reform of the AHOs and pledges up to £25 million in support.

March 2015 statement on behalf of the Scottish Government committing to review the existing schemes.

December 2015 Financial Review Group publishes proposals for changes to financial support in Scotland.

January 2016 Department of Health launches consultation on reform of AHOs.

March 2016 Scottish Government decides to establish a new Scottish scheme.

July 2016 Department of Health publishes response to the consultation and announces decision to have a single scheme administrator in England.

April 2017 SIBSS becomes operational.

November 2017 EIBSS, WIBSS and IBPS (NI) become operational.

December 2018 Scotland introduces self-declaration regarding impact of Hepatitis C

April 2019 Prime Minister announces additional funding for EIBSS.

January - August 2020 announcements of reforms to IBPS (NI).

March 2021 the Government announces changes to the schemes to address disparities.


People

Jane Ellison Parliamentary Under-Secretary for Health (2013 - 2016)

Vaughan Gething Minister for Health and Social Services, Wales (2016 - 2021)

Jeremy Hunt Secretary of State for Health and Social Care (2012 - 2018)

Penny Mordaunt Paymaster General (2020 - 2021)

Shona Robison Cabinet Secretary for Health, Wellbeing and Sport, Scotland (2016 - 2018)

Anna Soubry Parliamentary Under-Secretary of State for Public Health (2012 - 2013)

Robin Swann Health Minister, Northern Ireland (2020 - 2022, 2024 - present)


Abbreviations

AHOs Alliance House Organisations

APPG All-Party Parliamentary Group

EIBSS England Infected Blood Support Scheme

IBPS (NI) Infected Blood Payment Scheme for Northern Ireland

SIBSS Scottish Infected Blood Support Scheme

WIBSS Wales Infected Blood Support Scheme


The need for reform

Dissatisfaction with the Alliance House Organisations (“AHOs”) increased during the 2000s. Many of the problems identified in the previous chapters were being brought to the attention of politicians by their constituents. By 2013 reform began to be considered by ministers. Anna Soubry was by then Parliamentary Under-Secretary of State for Public Health. She attended a meeting at the House of Commons with the All-Party Parliamentary Group (“APPG”) and a number of campaigners on 17 April that year. Problems with the way people were treated by the AHOs were raised at the meeting. Anna Soubry “confirmed she had spoken to the various funds to make clear it is not acceptable and changes are happening. But she has major concerns over the set-up of some funds and the fact there are so many and the bureaucracy that makes people feel they are begging and beholden”; she expressed exasperation about the time it took “to sort anything out”; and heard that “the systems set up by successive Governments are divisive and people are being dealt with in an uncompassionate and ineffective way.[1441] She told the Inquiry that when briefed about the schemes she “could not understand why there were different funds or why they were so complicated and difficult for applicants to access. It struck me as illogical and profoundly wrong” and that “the ‘cap in hand’ nature of it was humiliating for the beneficiaries.[1442]

Anna Soubry then asked her officials to provide her with options for reforming the Hepatitis C payments system, although her recollection was that there was little political will to change the system.[1443] Jane Ellison succeeded Anna Soubry in her ministerial role in October 2013, and also sought advice on options for reform.[1444] It plainly came to the ears of David Cameron as Prime Minister, and when during the next month he met a group of people accompanied by Alistair Burt MP he came to believe “the system was not fit for purpose.”[1445] The meeting made the shortcomings “even plainer”.[1446]

A submission to Jane Ellison and to the Secretary of State for Health, Jeremy Hunt, in January 2014 suggested that there was no additional money available for reform and that “we will need to consider what might be done to reform the current system to address the key concerns of campaigners and MPs, within the current, or lower, budget envelope of the system.[1447] The submission noted that the payment levels under the existing system were “for the most part arbitrary, and, with some exceptions, not based on any assessment of impact or need.[1448]

By May 2014 ministers had agreed that there needed to be wholesale reform of the AHOs by rationalising them into one organisation, according to a chronology put together by the Department of Health.[1449] In February 2014 David Cameron was advised by his special adviser that “Doing nothing is no longer an option”;[1450] in June 2014 he was briefed that his special adviser was “pushing DH” to announce “a review of the whole system of financial support for infected individuals and bereaved relatives”,[1451] and in November 2014 was asked to approve a proposed consultation about the different schemes.[1452]

A view appears to have been taken that the necessary consultation on the shape of that reform would have to await the delivery of Lord Penrose’s report. It is not clear why this was, given that Lord Penrose was not considering the adequacy or otherwise of the financial assistance schemes. However, there may be some indication of the way the Prime Minister’s advisers thought: he received a submission on 24 November 2014 with the summary in bold: “The big question, with the Penrose review in Scotland being delayed and delayed, and very little attention focusing on contaminated blood, is what the political upside would be of drawing attention to it now. There are some policy calls to make too.[1453] The submission proposed holding “the package” until Lord Penrose reported: saying “Following [a constituency] meeting on 13th June, campaigners have recorded your commitment to ‘sort things out’ within 6 months ... But the decibel count is hardly high on the national register. There is little advantage to raising this issue pre-emptively in advance of Penrose reporting ... It raises an issue that is currently not generating negative coverage, and creates media moments (taking up grid slots) before the Election.[1454]This all suggests that presentation trumped proceeding with policy – at least for the time being. David Cameron agreed to await the Penrose report.[1455]

The APPG on Haemophilia and Contaminated Blood was not held back by the imminent publication of the Penrose Report. It published its report in January 2015 entitled “Inquiry into the current support for those affected by the contaminated blood scandal in the UK”, accurately describing the current position as “a haphazard financial support system, established piecemeal by successive governments”.[1456] The findings made by the APPG included that there was a low level of awareness of the support available to those who were eligible (especially those infected with Hepatitis C) and that there was widespread dissatisfaction as to the way the support was delivered and the way in which the AHOs were funded. Importantly many respondents did not consider the available support was sufficient to meet their needs. The report made a number of recommendations including that:

  1. the Department of Health should undertake a comprehensive review to consider measures to expand take-up of the support on offer.
  2. the Department of Health should explore simplifying the five-trust structure.
  3. a specialist service should be established to assist registrants to pursue lost medical records to assist in the registration process.
  4. a public health doctor should carry out a comprehensive assessment of the needs of the beneficiaries and work out what it would cost to meet those needs. The appropriate level of funding for the organisations delivering assistance should be set at a level that was commensurate with beneficiaries’ needs.[1457]

Reform of the Alliance House Organisations

On 25 March 2015 (the day of the publication of Lord Penrose’s report) David Cameron announced a consultation into reform of the AHOs. He pledged up to £25 million that financial year to support transitional arrangements to a better payments system as well as apologising for the infected blood scandal on behalf of the Government.[1458] That apology, however, was simply “for something that should not have happened.” It went no further.

The following day, on 26 March 2015 a statement was made to the Scottish Parliament by Shona Robison, the Cabinet Secretary for Health, Wellbeing and Sport who reaffirmed on behalf of the Scottish Government the commitment to reviewing the existing schemes, by working with the other UK countries (as well as forming a patients and families reference group), with a view to concluding that work in time for an announcement no later than World Haemophilia Day in April 2016.[1459]

A meeting of the UK health departments took place on 17 April 2015 to discuss infected blood payments scheme reform. The minutes of the meeting record the desire of the English, Welsh and Northern Ireland Health Departments to work towards a UK-wide approach, and although it was noted that some “affected patients” in Scotland favoured a Scottish scheme in Scotland, Shona Robison was said to recognise that a UK-wide scheme would reduce service delivery costs.[1460]

On 30 June 2015 Jeremy Hunt wrote to David Cameron, suggesting that it was “basically impossible” to bridge the gap between the expectations of families who had suffered “and what we can realistically afford.” Time was said to be pressing due to litigation from Hepatitis C sufferers who were making the case that the current arrangements favoured HIV sufferers over those with Hepatitis C: “Legal advice is that some are likely to succeed, and if the DH were ordered to recompense them, we would face a multi-million pound liability for compensation for them and others in similar circumstances.” He put forward three options. The first was an “austerity” option which “sticks to the £25m we promised before the election”, using that sum to offer around £20k to all surviving bereaved spouses; the letter noted that “Around 90% of bereaved families get nothing so they would benefit – but campaigners would be furious and consider it a slap in the face.” The second option was to offer one-off payments both to existing sufferers and to bereaved families and to close down the payment schemes, with no further funding thereafter. It included accelerated access to treatment for all the 2,500 people thought to have been infected, rather than the 800 presently receiving it.[1461] This option (costed at £480m) was said to be currently unaffordable to the Department of Health and would require additional Treasury funding. The third option was to find an additional £100m from Department of Health funds which would be used to fund accelerated access to new Hepatitis C treatments for those in the early stage of the disease. He recognised that this option, which would involve no additional monies for any payment scheme, “would not satisfy campaigners”.[1462] The Prime Minister’s senior policy adviser recommended that he should proceed with Option 1. The Prime Minister said “No.” He also firmly rejected a proposal to withdraw support from uninfected family members, such as widows of those who had died following infection. His overall response was “I don’t think these work. A scheme that is meant to help but actually takes money away from people who currently get it is hopeless. And I accept we don’t have £480m lying around. Surely there is a route where we increase the £25m to £100m or some such and fill in the worst payment gaps & merge all the charities into 1.[1463]

Following further deliberations,[1464] a submission to Jane Ellison and Jeremy Hunt in early August 2015 identified three different options, in the context of “two steers: to make as few changes as possible, and for no losers compared to the current scheme.” Option one was to reform the current schemes into one non-charitable scheme with no additional spend. It was noted that “The reputational risk of failing to make substantive changes to the scheme is high. Successive Governments have promised to address the concerns of beneficiaries for a number of years.” Option two was to reform the current schemes into one, using the £25m already agreed to provide £5m additional funding a year for the next five years, and option three was as per option two but with £25m additional funding a year for the next five years.[1465]

In November 2015 the Spending Review resulted in an increase in the overall funding for the NHS and agreement that a further £25m per year would be allocated from Department of Health central funds to the financial support schemes over the following five years.[1466]

Scotland: establishment of Scottish Infected Blood Support Scheme (“SIBSS”)

A report was published in March 2015 as a result of the survey that had been commissioned by the Scottish Government Health and Social Care Directorate in 2014 on the support needs of those infected by Hepatitis C. The report, entitled “Hepatitis C Virus (HCV) Contaminated Blood Scoping Exercise”, aimed to assist the Scottish Government in understanding more clearly the scope and scale of the unmet needs resulting from Hepatitis C infection and to detail the support required by those affected.[1467] It made a number of recommendations including that:

  1. financial recompense for elevated living costs that were attributable to Hepatitis C infection from contaminated blood, as well as loss of potential earnings over the life course, should be addressed.
  2. the outstanding recommendations made by Lord Ross’s expert group on financial support[1468] should be implemented.
  3. insurance/assurance products and services should be made available to people infected by Hepatitis C through contaminated blood at levels commensurate with the general public.
  4. Professional counselling services should be made available.[1469]

By June 2015 (some two months after the publication of the Penrose Report), the Scottish Government established a Financial Review Group to provide recommendations to Scottish Ministers on whether the current financial support schemes should be changed and if so what changes should be made and whether any of them should be retrospective. Importantly the Group included people infected and their family members together with Scottish Government officials and other interested parties.[1470]

In its final report published in December 2015, the Financial Review Group made a number of recommendations both about the level at which payments should be made, and to whom, including that the annual payments should be increased to reflect the Scottish full-time gross median income and that bereaved partners should receive a corresponding pension of 100% of the annual payment in the first year and 75% thereafter.[1471] The Group “favoured a new Scottish scheme that would not be constrained by UK-wide discussions/agreement[1472] which had been one of the difficulties the Scottish Government faced when seeking changes in levels of assistance from the AHOs, as any change required all four nations to agree and to identify additional funding.[1473]

The proposals made by the Financial Review Group were accepted by Shona Robison, Cabinet Secretary for Health, Wellbeing and Sport, in March 2016,[1474] confirming that “a new Scottish scheme will be established for people who became infected with HIV and hepatitis C after treatment in Scotland, and their dependents,[1475]with the result that the SIBSS was established, to be administered by the Common Services Agency for the Scottish Health Service,[1476] and began operations on 1 April 2017.[1477]

In common, however, with the AHOs, the new scheme expressly remained one for the making of ex gratia payments.[1478] They were not intended to be compensatory.[1479] The same is true for the other three national schemes, discussed below.[1480]

In mid-2017, however, a further review was undertaken in Scotland. Since this considered the English approach to a third level of support – one sitting between stage 1 and stage 2 as they had been under the Skipton Fund – before determining on an approach it considered better, the English approach needs first to be explained. It sits within the context of the England Infected Blood Support Scheme.

England: establishment of England Infected Blood Support Scheme (“EIBSS”)

Although Jeremy Hunt’s statement of 25 March 2015 had expressed frustration and regret that decision making had been subject to postponement whilst awaiting publication of the Penrose report (“We had hoped to consult during this Parliament on reforming the ex-gratia financial assistance schemes, considering, amongst other options, a system based on some form of individual assessment)[1481]it took until 21 January 2016 – ten months after the report was published – for the Department of Health to launch a consultation on the reform of the AHOs in England. The consultation document set out a number of proposals for a new scheme in England, and included a commitment of a further £100m of funding (additional to the £25 million committed by David Cameron in March 2015).[1482] It avoided an unpublished suggestion by the Department of Health that “stage 2” awards in the Skipton fund should be dispensed with, on the basis that these awards might incentivise people not to accept treatment, but allow their condition to worsen so that they received the money instead. To his credit, David Cameron responded by describing this view as “wrong” and that making that proposal was “CRASS” and “Deeply condescending”. He added “Slightly losing confidence in DH. And they have a dreadful reputation with sufferers on this. We want MORE where possible and not balanced by LESS for anyone. Come and explain if necessary.[1483]

Little notice of the consultation was given to the health ministers in Scotland, Wales and Northern Ireland.[1484]

On 13 July 2016, nearly 16 months after the Penrose Inquiry report had been published, the Department of Health published its response to the consultation, setting out its decision to have a single scheme administrator that would become operational in 2017/2018. It also announced the lump sum, annual and discretionary payments that would be made by the new scheme.[1485] The resulting proposals were applicable to England only, and announced by David Cameron on that day.[1486]

On 6 March 2017 the Department of Health announced that the NHS Business Services Authority would administer the scheme.[1487]

The Department of Health issued a further consultation on 6 March 2017 relating to a proposed special category mechanism (“SCM”).[1488] Six months later the Department of Health published its response announcing a new mechanism to enable a beneficiary with a stage 1 infection which was having a substantial and long-term negative impact on their daily lives, to apply for a higher annual payment. Each application had to be supported by medical evidence. Annual support payments were also to be uplifted and discretionary support harmonised under the single administrator.[1489]

On 1 November 2017, the EIBSS became operational.[1490]

Establishment of the Infected Blood Payment Scheme for Northern Ireland

Advance notice of the Department of Health’s consultation was not provided to Northern Ireland. Lines to take drafted for the Minister of Health Simon Hamilton following the publication of the consultation in January 2016 expressed disappointment “that my department was not given the opportunity to see the consultation document before publication so that any concerns could be addressed ” and stated that the outcome of the consultation would be awaited before any decision was taken.[1491]

Advance notice of the Department of Health’s response to the consultation was also not provided to Northern Ireland.[1492] A submission to Michelle O’Neill, the new Minister of Health, in July 2016 explained that the Department of Health (London) had informed the devolved administrations that no additional money would be available for them. The submission added:

“From 2014 it was agreed at Ministerial level that officials in England, Scotland, Wales and north of Ireland should work together to establish a consistent model of financial assistance across the UK with the aim of rationalising the current five financial assistance schemes for health service patients affected by infected blood under one single legal entity. However there have been difficulties with this working relationship, in particular with officials in the DAs being unsighted on a number of important announcements made by England on the issue. This includes the announcement of the consultation on scheme reform and now the government response, despite repeated requests from officials in Scotland, Wales and the north of Ireland for the information to be shared.”[1493]

The submission identified four options for the Minister of Health – to maintain the status quo and retain the pre-reform payment levels, to replicate the Scottish reform (described as “more costly to replicate ... than the English plans”, to increase and reform payments in line with England, or to design a bespoke scheme for Northern Ireland.[1494] The recommendation from officials was to continue the “current forms and levels of assistance, on grounds of affordability”.[1495] As at October 2016 the Minister was still considering the options and was pressed by officials on 17 October for an urgent decision to be taken “on whether enhanced payments will apply in the north of Ireland or whether the status quo should continue (previous recommended option).[1496]

After almost six months, the Minister decided that the new provisions being introduced in England should be replicated in Northern Ireland, though with no commitment to introduce a special category mechanism.[1497] She announced this by way of statement to the Assembly on 22 December 2016.[1498]

On 16 January 2017, the Northern Ireland Executive collapsed leaving the Department of Health without a minister for the following three years and limiting its ability to implement reforms.[1499]

When the Department of Health in England directed the NHS Business Services Authority to administer payments in March 2017, Lord O’Shaughnessy, the Parliamentary Under-Secretary of State for Health, wrote to the Head of the Northern Ireland Civil Service stating that the remit of the NHS Business Services Authority did not cover Northern Ireland, therefore it would not be able to offer scheme administrative services to Northern Ireland beneficiaries. The Health Protection Branch executives quickly submitted a Strategic Outline Business Case to the Director of Finance on 21 March 2017 suggesting the Business Services Organisation[1500] take the same role in Northern Ireland. It was noted that the additional funding for the scheme was an “inescapable pressure” and that administrative costs would be higher as there would be no shared services with the other UK health administrations.[1501]

Letters were issued on 11 October 2017 to beneficiaries advising them that the scheme would become operational on 1 November 2017 with continuity of payments.[1502]

Establishment of the Welsh Infected Blood Support Scheme (“WIBSS”)

Wales, like Northern Ireland, did not receive advance notice of the consultation or of the Department of Health’s response, and was left with little choice but to set up a Welsh scheme in consequence of the decisions and actions being taken to set up an English scheme and a Scottish scheme.[1503]

On 6 October 2016 Vaughan Gething, as Cabinet Secretary for Health, Well-being and Sport for Wales, made an announcement aimed at ending uncertainty about the level of support available from the Welsh Government. Noting that the UK wide nature of the schemes had “now fragmented through new schemes announced for Scotland and England”,he stated that as an interim measure payments for the remainder of the 2016-17 financial year would be at the same levels as England. He announced a consultation on the terms of the scheme from April 2017 onwards.[1504] He wrote to the 280 people in Wales who were being supported through the AHOs asking for their views on support in the future, and two workshops were held at which people could contribute their views.[1505]

The results of that consultation led to Vaughan Gething making a written statement on 30 March 2017 setting out the new arrangements for a Welsh scheme. This was to be administered by Velindre NHS Trust through the NHS Wales Shared Services Partnership. All beneficiaries would automatically transfer to the new scheme operational from October 2017. A new feature was payments to bereaved spouses and partners of 75% of the regular payments for three years after bereavement. Finally, the Welsh scheme offered a holistic advice service from implementation relating to healthcare services, home or travel insurance, other financial benefits or other public services.[1506]

Scottish approach to an intermediate category of payment

In mid-2017 the Scottish Government asked Professor David Goldberg (Health Protection, Scotland) to establish and preside over an expert group to assess the health and wellbeing of individuals, chronically infected with the Hepatitis C virus (those at stage 1) who had not yet progressed to advanced Hepatitis C (those who had been eligible for Skipton Fund “stage Two”). The expert group recommended that a further (kidney) condition should be added to the advanced Hepatitis C criteria, because it was a consequence of Hepatitis C infection which had a substantial negative impact on life expectancy.[1507] More significantly for many, it considered whether a “method, permitting the robust and rigorous assessment of the impact of hepatitis C on the individual who has not progressed to advanced liver disease, could be developed and command the confidence of both assessors (clinical staff) and assessees (patients).[1508]

It then examined the English model. To qualify in England, an individual had to answer two questions:

Yes/No and if Yes, occasionally/monthly/weekly/most days/daily

Yes/No and if Yes, occasionally/monthly/weekly/most days/daily”.

The attending hospital doctor or viral hepatitis nurse had to respond in the following way:

There was a general agreement in Scotland – involving a wider group than the Review Group itself, including clinical leads and/or Hepatitis C coordinators from Scotland’s NHS boards and Professor Goldberg’s Clinical Review group – that the English model should not be followed because it “i) did not take account of the past impacts of hepatitis C on the current and future lives of infected people and their widows/widowers/civil partners, ii) would likely have a deleterious effect on the doctor-patient relationship and iii) was not robust enough to allow assessment with any precision.[1510]

Having examined a range of alternative approaches, involving the establishment of thresholds of one kind or another, the group observed that “The complexity of the impacts of hepatitis C on the individual, particularly from a psychosocial perspective, was viewed as so considerable that it would be inappropriate to undertake any such individual assessment, no matter how sustained and rigorous it might be, on the grounds that the end result would often be an unfair one, subject to contestability.” It noted that any assessment which was just clinically-based would ignore the very considerable non-clinical impacts as described in its report.[1511]

On that basis, it unanimously favoured people with chronic Hepatitis C, including those who had cleared their virus through treatment, or their widows, widowers or partners who were eligible for support being asked to “self-declare hepatitis C impact in the following simple way.

This was entirely based on trusting the judgement of the potential applicant, and there was no need for a healthcare professional to be involved. It was thought optimal because it would be:

“simple to administer, it aims to ensure that those with the greatest need receive the greatest benefit, it avoids patient/healthcare professional conflict and any need for an appeals process, it reduces stress among applicants to a minimum, it is person-centred recognising that the individual’s perception of hepatitis C is critical, it promotes both individual and collective responsibility and it sends out a loud and clear message saying ‘you are trusted to make the appropriate declaration’.”[1513]

This was a bold, innovative approach to take. It is likely to have owed much to the presence of people with Hepatitis C infection amongst the members of the Review Group. It was adopted. Though it is challenging to assess whether all the assessments are fair, when the only way of judging that is to accept the judgement of the person making it, the feedback to this Inquiry has been that it seems to work well, as predicted, though some people found the self-assessment daunting. There has been no claim that the system has encouraged any overpayment.[1514]

Bill Wright, the chair of Haemophilia Scotland, which was heavily involved in the establishment of SIBSS, a significant campaigner, and a member of the Review Group summed it up:

“We ... focused on the lack of trust felt by survivors under existing schemes and a rather novel solution was proposed. On the basis that the mental health impacts were ‘incontrovertible’, provision should be made for those under the scheme as ‘Stage one’ recipients to self-assess as minimally affected, moderately affected or severely affected. We felt that this might restore a sense that the mental stresses were being recognised by those in authority.”[1515]

On the financial and clinical review groups he said: “I felt that the voices of the infected and affected had, for once, been listened to.[1516]

Changes since the start of the national support schemes

Changes have been made to all four schemes since their inception, often following dogged campaigning by those infected and affected. Among the more significant changes are:

  1. SIBSS: the introduction of self-declaration in Scotland, following Professor Goldberg’s review. This change was implemented in December 2018.[1517]
  2. WIBSS introduced a version of the special category mechanism in April 2019, called the Enhanced Hepatitis stage 1+ payment. This was for WIBSS beneficiaries with chronic Hepatitis C infection, at stage 1, who were experiencing significant mental health issues or post-traumatic stress related to their infection which were affecting their ability to carry out day-to-day activities. It included beneficiaries who had HIV and Hepatitis C stage 1 infections. Applicants were able to self-certify,[1518] and received the same annual payment as those who were eligible for the stage 2 payment.[1519]
  3. EIBSS: on 30 April 2019 the Prime Minister announced that £30 million of additional funding would be made available.[1520] This announcement coincided with the first day on which the Inquiry heard evidence. The timing of the announcement was not coincidental – this is not to say that the money would not necessarily have been found in due course, but it is more that the likely publicity of the start of the Inquiry hearings was what focused the departmental/governmental mind.[1521] While not all the contemporaneous reporting made it clear, this was an announcement that applied only in England. The changes meant that from July 2019 EIBSS introduced increased and consolidated payments for all infected beneficiaries, removing the need for beneficiaries to apply separately for income top-up payments.[1522] The minister responsible, Jackie Doyle-Price, reflected “I was able to achieve an uplift in payments to achieve parity with Scotland, but it is fair to say that that caused issues for Wales and Northern Ireland.[1523]

Officials in Northern Ireland described the decision to raise payments as “a political decision”, not underpinned by a defensible rationale, “so there is no DHSC [Department of Health and Social Care] analysis from which we could extrapolate.[1524] Vaughan Gething referred to the money being found “essentially down the back of the departmental sofa”; there was no consequential provision beyond England because the money came from within the Department of Health and Social Care’s existing budget and was not a new allocation from the Treasury.[1525]

At the centre of this announcement was concern which had been expressed about different levels of payment in the four nations. This unilateral move on the part of England to increase payments (the devolved schemes did not even receive advance notification of the uplift)[1526] intensified calls for parity between the schemes.

Parity of provision

It had been clear from the outset that there was no parity of provision between England and Scotland. This is despite it having been an aim of the reforms that “the systems in England could harmonise with those in Scotland” according to the then Prime Minister David Cameron.[1527] Nor was there parity of provision with Wales and Northern Ireland.

Jane Ellison told the Inquiry that it was “clearly desirable to strive for parity between the administrations, mainly because it was fairer to the beneficiaries. However ... the department in England could not impose the principle of parity.[1528]Jeremy Hunt suggested that:

“Whilst parity between the devolved schemes would have been desirable, Health functions were devolved and each Administration had constitutional responsibility for its own scheme. Responsibility for the infected blood payment schemes was therefore a matter for each devolved administration, each administration was financially responsible for beneficiaries in its jurisdiction, and parity across the schemes could not be imposed.”[1529]

Jackie Doyle-Price acknowledged that parity between the four schemes “was an important objective, because looking at the financial schemes from the perspective of an individual beneficiary, there is a clear issue of fairness.[1530]

Jackie Doyle-Price was not aware if any steps were taken by the Department of Health to achieve parity when the devolved schemes were being set up.[1531] Samantha Baker (the team leader with overall responsibility for infected blood within the Scottish Government’s Health Protection Division) told the Inquiry that parity had not been a prominent part of the regular four nations’ meetings until 2019.[1532] William Vineall likewise was not aware of measures being put in place at the outset to try and minimise the extent of disparity.[1533]

After the uplifts in England, a group of campaigners wrote to Prime Minister Theresa May on 8 May 2019 requesting that similar payment uplifts be made across all of the devolved nations.[1534]

On 10 July 2019, a telephone conference took place between the four nations’ Ministers,[1535] where the problem of disparity of support was discussed for the first time. Neither Wales nor Northern Ireland had funding available within their existing health budgets to make equivalent uplifts to that made by EIBSS. In Wales the disparity had led to the expression of “strong views from their infected and affected campaigners” and in Northern Ireland it had caused “considerable distress” among beneficiaries and campaigners. There was however a commitment made to achieving parity of support and an agreement that each nation should give one another due warning of any intended changes to support provided.[1536]

On 23 July 2019 David Lidington, Chancellor of the Duchy of Lancaster and Minister for the Cabinet Office, sent a letter to Jackie Doyle-Price copied to the Chief Secretary to the Treasury asking the Treasury to give urgent consideration to agreeing the disbursement of funds to Northern Ireland and Wales in order to correct the disparity caused by the uplifts made in England. The disparity caused by the announcement on 30 April 2019 “was inadvertent but I believe now needs to be corrected urgently.[1537]

In October 2019 Welsh ministers wrote to the Department of Health, urging the provision of funding necessary to enable the Welsh Government to work towards parity of support.[1538]

On 9 January 2020, three years after the collapse of the Northern Ireland Assembly, a deal to restore devolved government in Northern Ireland, New Decade, New Approach, was agreed by all the Northern Irish political parties. This agreement included the intention of the Executive to bring about parity in financial support in Northern Ireland with that in England.[1539] The newly appointed Health Minister, Robin Swann, announced on 27 January 2020 his intention to carry out a phased approach to reforming the scheme.[1540] The first phase involved making one-off payments in January and March 2020, including (in March) to non-infected widows and widowers.[1541] In August 2020, he announced a permanent uplift of annual support rates in line with EIBSS, though without a special category mechanism.[1542]

At a further meeting with campaigners in January 2020, the Minister for the Cabinet Office, Oliver Dowden, acknowledged the lack of progress on parity since January 2019. Ministers proposed to “write to the Devolved Administrations requesting urgent engagement at official level on proposals to achieve greater parity.[1543]

In the late summer of 2020, Penny Mordaunt as Paymaster General and sponsoring Minister of the Inquiry, wrote to the Chancellor of the Exchequer, Rishi Sunak, to explain the work being undertaken to resolve the remaining disparities in support between the schemes. She pointed out that the resolution of the disparities was “one of the main requests of the victims and their families”. Her “strong belief” was that “it would be the right thing to do.[1544]

Penny Mordaunt wrote again to Rishi Sunak on 21 September 2020 providing the costings for providing parity of financial support and seeking his views “on how this additional funding would be integrated best into the 2020 Comprehensive Spending Review.” She wrote “I cannot stress enough the urgency of taking long overdue action on financial support and compensation.[1545]

A bid was submitted to the Spending Review that took place in autumn 2020 which incorporated the most generous aspects of support offered across the four nations.[1546] The Welsh government did not have sight of the final bid that went forward.[1547] That particular bid was unsuccessful, as the Treasury decided to do a one-year spending review because of the economic uncertainties caused by the pandemic.[1548]

By the end of 2020 there had been no significant progress or developments regarding the achievement of parity.[1549]

On 11 February 2021 Penny Mordaunt wrote to the Secretary of State for Health, Matt Hancock, setting out her view that resolving the disparities was “a matter of justice” and that the Government “must find a way to fund this – either through existing budgets or by making a further approach to the Treasury.[1550]

On 25 March 2021 Penny Mordaunt announced that the UK Government would provide funding to enable broad parity of annual and lump sum payments between the four national schemes.[1551] These changes were backdated to April 2019. Equivalent statements were also made in Wales[1552] and Northern Ireland.[1553] A corresponding statement was not made by the Scottish Government as it was in a pre-election period but an indicative statement was provided on the SIBSS website and within the next newsletter.[1554] Changes to the schemes were made within the following few months.

This move towards greater parity gathered momentum in March 2021. Mairi Gougeon, the Minister for Public Health and Sport in the Scottish Government, referring to the weekly four nations’ meetings of health ministers, told the Inquiry that:

“I think the day before the meeting on 11 March we were made aware that it was going to be an issue on the agenda at that point, and then it was discussed at the meeting on 11 March when I think all ministers agreed that parity should be pursued. But then I don’t think there was much over the course of the next couple of weeks until about 24 March. So, well, a decision had been reached at that meeting that we’d work towards parity. We didn’t know exactly when that would be until there was a bit of a flurry in terms of the decision-making that needed to be made and needed to happen really quickly over the space of 23, 24 and 25 March.”[1555]

The evidence of Liz Redmond, the Director of Population Health in the Northern Ireland Department of Health, was to similar effect, such that the announcement came as something of a surprise.[1556] Vaughan Gething told the Inquiry that by 4 March 2021, when there was a meeting of the WIBSS governance group, the Welsh Government had heard nothing substantive further about funding and how parity might be achieved, and that “It all happened in a significant rush towards the end of March”.[1557]

The changes made to EIBSS as a consequence of the announcement on 25 March 2021 were as follows:

  1. an increase in the annual payments for bereaved partners to 100% of the payment their partners were receiving at the time of their death for the first year after the death, reducing to 75% in year 2 and in subsequent years, in line with the position in Scotland.
  2. the lump sum bereavement payment moved from a discretionary £10,000 to an automatic £10,000 in line with the position in Wales.
  3. the lump sum payment paid to a beneficiary with Hepatitis C stage 1 increased from £20,000 to £50,000 in line with the position in Scotland.
  4. the lump sum payment made to a beneficiary with HIV became an automatic payment of £80,500.[1558]

In Scotland, the applicable changes were to increase annual payments for infected beneficiaries and bereaved partners, and to introduce a £10,000 lump sum bereavement payment for the families of those beneficiaries who had died since the scheme began.[1559]

In Wales, increases were made to the annual payments for infected beneficiaries, and to the payments and the length of payments for bereaved partners in line with the position in Scotland. Changes were also made to the lump sum payments for Hepatitis C and HIV.[1560]

In Northern Ireland, annual payments for non-infected bereaved spouses/partners were announced on 1 March 2021.[1561] On 25 March 2021, it was announced that lump sum bereavement payments, which had been made to spouses or partners under the scheme since 2017 were to be extended so as to be payable to the estate of the deceased where there was no living spouse or partner, in line with the position in England and Wales and a commitment was made to introduce enhanced financial support for Hepatitis C stage 1 at the same payment levels as England as soon as a system could be put into operation.[1562]

Furthermore, there was a commitment that any future changes to the national schemes would be subject to consultation between the UK Government and devolved administrations.[1563]

Non-financial support provided by the schemes

The disparity between the schemes was not confined to the financial support provided. There were also differences in the types of non-financial assistance given to applicants.

Help with obtaining medical records

There remains some difference between the four nations when it comes to documentation relevant to acceptance into the schemes. Applicants have to show that they have received blood or blood products. To do this they need their medical records. WIBSS and SIBSS are willing to assist potential beneficiaries to locate these during the application process:

In contrast, Brendan Brown confirmed that EIBSS expected the applicant to obtain supporting medical records themselves, albeit after appropriate signposting. It was the view of the administrators that the records contained personal confidential information and therefore the individual was best placed to pursue that.[1566]

In-house rights advisers

Neither EIBSS, SIBSS, nor the scheme in Northern Ireland employ welfare and benefits advisers in-house. EIBSS and SIBSS do however signpost beneficiaries to an independent specialist adviser in welfare rights and social policy, reimbursing their invoices directly.

WIBSS is unique in having established a dedicated support service operated by welfare rights advisers and including a dedicated website with information and signposting. This team offers support with completing WIBSS forms, assistance with how to gain the supporting medical evidence required, as well as a broader service which provides:

Bespoke psychological support

One important aspect – considered in the Second Interim Report of the Inquiry[1568] – is that those infected and affected should be able to access bespoke psychological support. Eventually, an announcement has been made that England will follow the lead of the other three nations in providing this.[1569] Wales is the only nation to provide this through their support scheme as part of their holistic approach to supporting people infected and affected. Lynne Kelly said of the Welsh approach:

“Many of the infected and affected victims had experienced difficulties accessing financial support from the Macfarlane Trust, Skipton Fund and Caxton Foundation. Their additional stress and suffering was a direct result of the way they had been treated by various scheme administrators. In Wales we had a clear vision of the threshold to be achieved to provide an acceptable service for beneficiaries ... the need for a tailored, holistic approach with psychological support and welfare and benefits advice for both the infected and affected.”[1570]

Experience of the schemes

How have the national schemes been regarded by those whom they exist to support?

A number of witnesses remained unaware that financial assistance was available, notwithstanding the establishment of national schemes. Colin Aspland stated: “I have not received or sought any financial assistance from any of the Trusts and Funds set up to distribute payments. Indeed, prior to this witness interview, I had no idea that such Trusts and Funds were in existence.” Since giving his statement Colin has died.[1571]

Beyond some lack of awareness about the schemes, the English scheme seems to have been more difficult to engage with than the Scottish, Welsh and Northern Irish schemes.

Differences between the schemes can be seen in how they assess their own work. SIBSS conducted customer satisfaction surveys in 2018, 2020 and 2023, with 97% of respondents rating the overall service as good or very good in 2023.[1572] WIBSS conducted a survey in 2021, with 75% of respondents rating the overall service as good or very good.[1573] EIBSS did not publish the results of a survey they conducted in 2022, just the headline that 92% gave an overall rating between 7 and 10 out of 10.[1574] EIBSS’ and WIBSS’ key performance indicators are published but do not include any measure of customer satisfaction.[1575]

English Infected Blood Support Scheme (EIBSS): some experiences[1576]

Samantha May, who manages the Hepatitis C Trust helpline information and support service reports that around one in ten of their contacts from people infected through blood and blood products concern the support schemes, predominantly EIBSS.[1577] She provided case studies of the considerable number of hours spent by the Trust supporting people seeking to access support from EIBSS.[1578] She told the Inquiry:

“From the beginning of my time on the helpline, I have been constantly surprised that many who received infected blood/blood products were not made aware of the fact that they were able to claim from these funds immediately after their diagnosis, or in many cases, at some point even many years later ... Many feel very angry that they weren’t made aware of the scheme earlier ... But many people we deal with are elderly, extremely unwell, do not use the internet, or have no family support to help them do so and they remain totally unaware that they exist ... Even for those who do find out about the schemes, the language used and level of detail required on any of the blood support scheme application forms, past and present, is for some, so onerous that many people feel like it is making a claim for benefits or intrusive, which they describe as feeling ‘daunting’ or ‘degrading’ ... Whilst the process is a clear barrier to all applying, without question the single biggest barrier to people who received infected blood making a successful claim is the difficulty in finding their medical records ... the people facing the biggest barriers to a successful application are those with the least resource, the least health literacy, and without the means to pay for private medical time and/or legal advice. These are often the people who need the financial support the most.”[1579]

Kathleen Locke “accidentally found out” about EIBSS in 2020 and “then had to support my mother to apply to the fund as without my help she would have been unable to do so. My mother is not computer literate and is unable to access online meetings, emails or websites.”[1580]

Bureaucratic hurdles have caused difficulties for other people. Benjamin Griffiths who was infected with Hepatitis C through a blood transfusion after an accident as a child, recounts:

“I recently made an application to the England Infected Blood Support Scheme (EIBSS) in late 2022. I found them unhelpful during my initial contact and I was given conflicting advice as you don’t get to speak to the same person. So, there is miscommunication because you have to deal with so many people. So far, I have spoken to 5 different people who appear to be Assessors and I have been given no constant point of contact. As a result, I have been given different advice and different requests from the [different] EIBSS employees.”[1581]

One man received a first payment from the Skipton Fund but nothing more and was at first unaware of EIBSS. He was told by EIBSS that he “had fallen through the net. No explanation or apology was offered for this. They said I wasn’t the only one to have been ‘forgotten’ in this way and that they would resolve it ... Had I not contacted the Inquiry I would never have known.”[1582]

There remain problems in relation to producing enough evidence to show a causative transfusion, because of a lack of medical records. Maria Mooraby’s application, and subsequent appeals to EIBSS, were refused. Her treating clinician provided a detailed letter to EIBSS explaining why he considered it most likely that she had contracted Hepatitis C from a blood transfusion in 1989 after surgery for a ruptured appendix associated with sepsis. Despite having written statements from her husband and daughter which described her receiving blood, EIBSS rejected her application.[1583]

Andrew Bragg had a road traffic accident in Norway and was treated in both Bergen and the UK. His application to EIBSS was rejected as was his appeal:

“From Liverpool I obtained fragmentary records concerning treatment between September 1986 and February 1987. East Lancashire Hospitals Trust responded saying they had no records of my treatment as these had been destroyed in line with hospital policy. There was therefore no way I could then gather a detailed description of my treatment when under the care of these institutions to support my application from the information provided. [The Bergen Hospital] responded by saying that all four blood donors [in Norway] had been repeatedly tested and were all HCV negative ... My appeal to EIBSS was rejected on the grounds that I cannot prove that the infection was as the result of NHS actions ... Any chance I may have had of proving this causal link has been compromised by the retention of only a limited amount of personal data by one hospital and the destruction of all of my files by another. As a result of the actions of these NHS organisations and given the terms of reference of the EIBSS assessment panel then I have no ability to prove my case.”[1584]

Another woman’s application to EIBSS was refused because she did not have sufficient medical records:

“Included in my application was a copy of proof of HCV, a letter from a friend who visited me in hospital in 1982, and documentation from my GP which supported my application. What was not in the application was my medical notes from St Luke’s Hospital, now the Royal Surrey County Hospital, which I have been unable to obtain. I was told that there was no record of my operation in 1982 and that these records had been destroyed in 2015 because the hospital was going digital. They informed me that because I had not recently received treatment at the hospital, my records would not have been kept. On 5 March 2019 the EIBSS responded asking for more information about the blood transfusion and the operation. By chance, I had an appointment with my liver specialist on 6 March 2019, at the local hospital. She managed to print off the relevant parts of my medical history. I have submitted all the information about my operation and blood transfusion, including photographs of my scar. I have also sent redacted paper records held by my GP which confirms my ruptured ectopic pregnancy in 1982. I have also sent a photocopy of my daughter’s birth record which confirms that a fallopian tube was removed, and also details my blood group ... My application has been declined on the grounds that I had no proof of a blood transfusion in 1982. There is proof that I had a ruptured ectopic pregnancy and that I am in the database at the Royal Surrey Hospital, but they have destroyed the medical records held by them. There is no record of me having the blood transfusion, but I have been told by doctors that it is highly unlikely that an individual would not need a blood transfusion after suffering from a ruptured ectopic pregnancy.”[1585]

Ronald Edge felt the application process for the special category mechanism has been complicated and unclear:

“While I received the lump sum payments from the Skipton Fund and now the EIBSS fairly easily, it was much more difficult to access the monthly top up payments that I am now receiving. The paperwork involved was complex and difficult to understand. From the first correspondence my wife and I received from the EIBSS, the form attached made it look as though I would not be eligible to apply for monthly top up payments. When I mentioned it to my brother, he suggested that I pursue it as he said that I should be eligible. My wife and I then requested further forms and information from the EIBSS. We received multiple forms and were told that I was not eligible for the top up payments initially. It took further persistence and correspondence to receive the right form and make sense of it. After receiving the correct form I realised that I was eligible to apply for top up payments ... If my wife and I had accepted the first form and letter we had received from the EIBSS, we would not have realised that we were eligible for top up payments and would not have been able to access that money.”[1586]

Ronald has died since giving his statement.

Another man describes:

“Applying to EIBSS for payment under the Special Category Mechanism was quite different [to Skipton for a stage 1 payment], and rather off-putting. It appeared to require a very high level of illness to qualify for payment, and there was little indication of how the decision would be taken as to whether to award the payment or not. I read the information I was sent by EIBSS and I decided not to apply. I later changed my mind after receiving a phone call from a specialist nurse at the Haemophilia Centre to ask me whether I had applied yet. She advised that I should.”[1587]

He attended an appointment with the Centre’s social worker and specialist nurse who helped him with the application form and his application was successful.[1588]

Even where support was previously received from the Macfarlane Trust and Skipton Fund, difficulties arose in applying to EIBSS. One woman had to reapply and provide evidence that she and her husband were together at the time of his death from liver failure: “I sent them a copy of his death certificate and marriage certificate. I found the system difficult and onerous and I could not fully understand why I had to submit all the information they required. I also had to get my father-in-law ... to sign a form to verify we were together before and at his death. They needed proof that we were living together and I couldn’t understand why.”[1589]

Jackie Britton, a campaigner, describes the difficulty of knowing what support is available:

“Things have improved a little and EIBSS do now publish a booklet ‘Discretionary Support Guidance Booklet’, giving information on the sorts of financial assistance available, such as income top-up payments, accommodation adaptations, respite, etc. When changes are made this does get updated, but sometimes not very quickly, and EIBSS can be slow too in updating application forms. It is very frustrating for beneficiaries to spend time completing forms only to be told a form is now out of date. I have asked that they keep their website as up to date as possible, to help people access the correct information. So many of those infected are ill and suffer from brain fog, so the process should be made as user-friendly as possible.”[1590]

Su Gorman told the Inquiry:

“I made a first attempt at tackling the forms I had received from EIBSS which were purportedly in relation to the bereavement payment and top up payment. On the list of necessary documents was a request for proof of cohabitation up to the point of death with the suggestion that confirmation by a referee might be necessary. Less than a month after holding Steve’s hand as he breathed his last breath and ended our 44 year union I felt that I could not go on ... I found the wording of the forms that I had to complete insensitive. There were references to ‘you and your partner’s income’ or ‘household income’. I had just lost my husband and my home. It was heartbreaking ... Meanwhile I was also asked for a form for a funeral grant. This included the questions ‘why do you want this money?’ and ‘what are you going to do with it?’ ”[1591]

The restrictions on EIBSS financial assistance also remain problematic. One man, infected with Hepatitis A, Hepatitis B and Hepatitis C, states that:

“It is disgusting that the financial assistance [from EIBSS] is means tested and that my wife’s earnings are taken into consideration when assessing the level of financial assistance that I am entitled to. It is wrong because being infected with HCV has significantly affected my ability to work as a self-employed bricklayer, particularly in winter months ... if I do not work, I cannot get paid, meaning that my HCV infection directly affects my income. I believe the financial assistance scheme should not take my wife’s earnings into account, as my financial situation has been affected by my HCV infection irrespective of my wife’s income.” [1592]

Simon Gittons says the day-to-day operations of EIBSS have “been unreliable. I have never received the correct payment despite promises that the correct amounts would be made to me. This has been yet another unnecessary cause of stress.” Like others he says: “There is also no guarantee that I will continue to receive payment and this is a big concern for me.”[1593]

Some feel that the attitude of EIBSS continues to be demeaning and unfair. Michael Gower uses a wheelchair and says: “A while ago, I wanted a mobility scooter but was required to show proof that I needed it. I was required to get reports from consultants to prove that it was a necessity for me. It was a hassle to apply for it and to go and see them. It was quite intrusive.”[1594] Another man describes EIBSS as “another label hanging around my neck. It advertises my issues about blood. I spoke to someone at the scheme and he said there was nothing they can do despite many people raising this concern.[1595]

One man, who also received support from the Macfarlane Trust, says:“The process of applying to the EIBSS was and is still time consuming, demoralising, difficult, dependent on haemophilia centre support and although an improvement on the MFT, extremely unfair.”[1596] Diane Thiang Su Todd who was infected through her ex-partner feels the change to EIBSS brought no improvement: “things have been worse since then. There is no longer any personal contact and I feel that I am just a number.[1597]

Welsh Infected Blood Support Scheme (WIBSS), Infected Blood Payment Scheme for Northern Ireland and Scottish Infected Blood Support Scheme (SIBSS): some experiences

It seems that there have been fewer problems with the way that WIBSS, the scheme in Northern Ireland and SIBSS have been administered.

Karisa Jones has found the process of applying for financial assistance from WIBSS “straightforward, the WIBSS are very helpful. I have asked WIBSS for help with putting in a disabled shower downstairs and am waiting to hear whether they will help me. They ring me to keep me updated ... In terms of the amount of financial assistance we have received, how can you put a price on someone’s life? We are struggling.[1598]

One man said in 2019 “In terms of the amount of financial assistance received, I would have appreciated more, especially from the Welsh Government. It would be good if it was for life.[1599] Margaret Fitzgerald said the WIBSS support “would have been of greater benefit to me much earlier in my illness to pay for various things including taxis when I was too ill to walk.[1600]

Rita Kirkpatrick told the Inquiry that her husband received a letter about the new scheme in Northern Ireland but he then “received no further information” and it was “very difficult to find out information about the new scheme.”[1601]

Gary McKelvey told the Inquiry about the difficulties accessing support in Northern Ireland for his bereaved mother because his father’s medical records had been destroyed. “I spoke with [the scheme manager] and ... he was very helpful on the phone, which was the first time anyone had been helpful. But ultimately he was only able to come back with the same response: no medical records, there was no way forward. He was advised that his mother should contact her Assembly Member which led to the Permanent Secretary advising that he should contact the scheme manager: “Once again, I had hit a brick wall and I was right back at square one again”.[1602]

With SIBSS, the decision of whether to select “moderately” or “severely” affected when completing the forms for further payment was not altogether straightforward for some people. Graeme Malloch says that “I did select moderately affected when I was filling in the form. I did not think I could fully justify severely but I am unsure about this. There seems to be a big jump between the two.[1603]

Nevertheless, the money has still been too late. As Margaret Cooper, who applied to SIBSS, says:

“It was a straightforward process. We just filled out some forms and posted it off. Audrey [my daughter] helped us. One phone call to the bank and the money was in. We never had any problems ... Audrey says there are new things coming out that we should be entitled to but you cannot put a price on this. What is the price for his health? What is the price for everything I have done? What is the price of any of it? Ricky [my husband] at least deserves enough for a good quality of life but he will never get it now.”[1604]

Since Margaret gave her statement, her husband has died.

Feyona McFarlane explains that the SIBSS money “doesn’t really change that I should have had a pension, a house bought and paid for, and some ‘normal’ relationships. I think that as I approached 60 years old it began to sink in that I had none of these things and the impact that would have on my old age. I have no house to sell and downsize, no private pension and no prospect of change.”[1605]

Rosemary Wright has commented (reflecting on a disparity with EIBSS at the time she wrote it) that: “the Scottish Scheme has made a huge difference and has had a real impact on our life. It is just another example of how this Inquiry has been long overdue, as I am aware that the same support is not available in England.[1606]

Commentary

Although there have been a number of criticisms of the national support schemes, there is little doubt that the decision no longer to fund the Alliance House Organisations and to transfer their functions to new national schemes was inevitable. Reform presented a chance to improve provision, and the way it was distributed. Scotland and Wales took particular advantage of this. In Scotland this was by introducing ongoing support for bereaved partners and adopting a system of self-declaration that the symptoms of Hepatitis C and its mental health impacts had grown appreciably worse without yet meriting a “stage 2” award. This allowed for enhanced payments to them. Wales introduced more holistic support to people infected and affected. Both seem to have worked well, and to have avoided some of the worst attributes of the Alliance House Organisations.

There is little doubt, too, that the additional funds provided by all governments have been welcome – though since the circumstances giving rise to the infections arose when there was no devolved government, the problem should have been viewed from the outset as a UK problem, and steps taken to arrange broad parity[1607] of provision between the schemes.

That said, there are two significant areas where the response of governments fell short. The first is the time it took to rationalise the schemes, given what was increasingly apparent about the unsatisfactory ways in which they had been functioning.[1608] It had been recognised by Anna Soubry in early 2013 that ways in which the schemes were operating were unacceptable, but she realised that the problems were more deep-seated, and needed reform – given political will to do it. People were not only being poorly served, but the way in which the schemes had operated often exacerbated their condition. It took until 2017 to deal with them. In the interim, a backbench debate and the APPG report in Parliament, and the campaigning of the Haemophilia Society and campaign groups outside Parliament, occurred. Though it takes time to arrange for a consultation about the nature of any change, and consider the responses to it, four years was too long. Responsibility for this delay lies with the Department of Health.

The second is that the way in which the schemes were set up meant that there were significant disparities from the outset. The support provided was a response to what was a problem general to the UK, the seeds of which were sown long before any devolution of government. The Alliance House schemes had operated cross-border, though Skipton support after 1 April 2016 differed to some extent in each nation. However, when the Department of Health consultation was carried out on changes to the schemes, that consultation and the consequent decisions occurred without notice to or involvement of the devolved administrations. Wales and Northern Ireland were left with no real alternative but to set up their own schemes, which was responsible for some of the disparity. It is, of course, inherent in devolution that each nation of the UK had and has the right to determine for itself what health policy should be, and was thus constitutionally free to differ. Nonetheless, it is part of belonging to a larger unit (the UK) that, though each nation could go its own way, where common issues cross the borders there should be an attempt at joined up planning from the outset. It did not happen at the start. It took too long thereafter to achieve a reasonable degree of parity. If, as seems more likely than not, it was the external pressure of the Inquiry beginning to hear evidence in April 2019, or the Secretary of State for Health and Social Care being about to give evidence in 2021, that led to the timing of announcements of improvements in the schemes which brought about much closer concordance of one with the other, then it is highly regrettable that that should have been the case rather than the issue being addressed at the outset. Responsibility for this lies with the departments of health, principally the Department of Health in Westminster.

As well as the self-evident financial impact of disparities, the lack of parity has itself exacerbated the psychological damage to individuals. As Dr Caroline Coffey, a consultant clinical psychologist with WIBSS, explained in a letter to the Welsh Government:

“It is crucial that the context and impact of the decisions of a higher powered organisation are seen as relevant and need consideration. There are similarities between the decisions of the governments now, and the NHS then, which is a reminder of the harm not help that was inflicted upon the beneficiaries.

Understandably people report entrenched feelings of anger and injustice, alongside damaged identities related to feeling like ‘a second-class citizen’, as unworthy and undeserving ... The extent of the psychological injury is unquestionable. The acceptance and normalisation of the harm caused is only more recently being exposed and challenged but the current legitimisation of the lack of parity is a highly sensitive reminder that again such people are targeted as ‘less than’ causing secondary psychological injury.

The inequality provokes reactivation and reliving of past traumatic experiences ... Achieving parity would demonstrate the importance of recognising the need for fairness and justice. I have been struck by the resourcefulness and resilience shown by the beneficiaries of the scheme and surprised by the desire to ‘move forward’ from such painful experiences. Realistically the associated traumas will never be resolved but it is a psychologically damaging and limiting process if aspects of inequality, in particular the lack of financial parity across the four devolved schemes are not currently addressed.” [1609]

The provision of bespoke psychological support has been one area in which Scotland, Wales and Northern Ireland have given a lead, and there has not yet been even broad parity of provision between them and England. It is a matter of regret[1610] that despite calls over the past five years – from psychologists themselves, campaigners and from this Inquiry – it has taken as long as it has for England to be on the point of following their lead.

6.12 Access to Treatment

This chapter explores some of the difficulties which people have experienced in accessing medical treatment. It looks at four areas: the lack of access to specialist treatment; the availability of treatments for Hepatitis C; palliative and end of life care; and the availability of recombinant factor products.


Key Dates

November 1994 alpha interferon is licensed for the treatment of Hepatitis C in the UK.

1994 - 2000 patients report difficulties accessing alpha interferon treatment.

October 1996 UKHCDO confirms recombinant Factor 8 as the safest product available for the treatment of people with bleeding disorders.

1997 Wales adopts policy of recombinant Factor 8 for all Haemophilia A patients.

26 February 1998 Secretary of State for Health announces that recombinant products are to be made available for all children under 16 and previously untreated patients in England.

2000 goal for patients in Scotland and Northern Ireland to have recombinant treatment, achieved in 2002 and 2003 respectively.

January 2001 commitment for recombinant Factor 8 to be available for adult patients in England on a phased basis over 4-5 years, achieved in 2004/2005.

August 2002 Hepatitis C Strategy for England.

October 2000 NICE recommends alpha interferon and ribavirin combination therapy for the treatment of moderate to severe Hepatitis C.

May 2001 Haemophilia Society leads campaign for full access to recombinant Factor 8.

June 2002 pegylated interferon monotherapy is licensed in the UK.

September 2006 Hepatitis C Action Plan for Scotland.

January 2007 Action Plan for the Prevention, Treatment and Control of Hepatitis C in Northern Ireland.

August 2007 Blood Borne Viral Hepatitis Action Plan for Wales.

2011 DAAs are licensed and become available for Hepatitis C treatment in the UK.

2014 the main treatment for Hepatitis C becomes sofosbuvir combined with other agents.

Abbreviations


DAA Direct-acting antiviral

NICE National Institute for Health and Care Excellence (formerly known as the National Institute for Clinical Excellence)

UKHCDO United Kingdom Haemophilia Centre Doctors’ Organisation


Introduction

Where harm has been done, it might be thought that, as a matter of justice, the state should do all that it reasonably can to alleviate the consequences of that harm. With that thought in mind, this chapter examines four aspects of medical treatment so as to assess whether the state (for these purposes, essentially the National Health Service (“NHS”)) did do all that it reasonably could, or whether in fact the harm already sustained was compounded by difficulties in accessing appropriate care and treatment.

The four aspects of treatment which are explored below are: lack of access to specialist treatment; the availability of treatments for Hepatitis C, palliative and end of life care; and the availability of recombinant factor products. The last is relevant only to people with haemophilia.

Lack of access to specialist treatment

The first question is: should people with bleeding disorders who became infected have been treated by doctors both expert and experienced in hepatology (for hepatitis) or by those whose regular task it was to deal with HIV – or by a multidisciplinary team including such expertise – rather than doctors whose expertise lay in the treatment of bleeding disorders.

The answer to that question is obviously yes. It is exactly what would be likely to happen in the case of those infected with Hepatitis B or C where the cause was a transfusion, and it is clear from the evidence which the Inquiry received that it was a matter of considerable concern for people with bleeding disorders that the same answer was not regularly given in their case. Their own words speak for themselves.

They were out of their depth ... it just seemed a bit weird, the director of haemophilia was trying to give us this drug [AZT] no-one knew very much about as a trial and it was just all very scary.[1611] So said Mr AK of his haemophilia centre: they were attempting to treat the HIV he had suffered, but their main specialism was in haematology.

One woman describes that “It took about six years before [my husband] saw a Virologist and to find out how far the HIV virus had progressed. We were always worried as we didn’t know what was happening.[1612] Another woman says “The Genito-urinary and Sexual Health Clinic served all HIV patients with the exception of the haemophilia patients with HIV, who were ring-fenced within the haemophilia centre … [My husband] was denied the benefit of HIV specialists discussing his treatments with him.[1613]

Another man was infected with HIV in 1981, when he was seven, and his parents were not informed of his infection until 1988, when he was 14. He says “After my parents were told about my HIV diagnosis, it took another year before I saw a specialist … By this point I had developed AIDS … He got me on HIV drugs straight away and basically saved my life.[1614]

Paul, who gave evidence anonymously, said about the lack of specialist input into his HIV care “Just because his haemophilia patients had developed HIV he suddenly hadn’t developed a specialism in HIV himself ... It never really sat well with me”. Then a new doctor came and set up a review clinic and there was an opportunity to see a psychologist. “It was the best help I had had from anybody at that point. It was the first time I had actually had to talk about it. She was aware that none of us had actually spoken to anybody else about it so she set this little support group up … We met once a month … We felt safe … It was incredibly sad, people’s stories. However, I don’t think I’d be here today if it wasn’t for those people … I developed those tools of survival.[1615]

Brian Ahearn had a similar concern about his treatment for Hepatitis C: “I should have been referred to a hepatologist straight away”.[1616] His haemophilia clinician, Professor Charles Hay, said “In the late 1990s and early 2000s, we had only one consultant hepatologist … a very common situation in the NHS … Generally at that time the hepatologist would offer advice and refer the patient back to us for further management.[1617]

Robert James told the Inquiry:

“the way haemophilia doctors saw us … we were their ‘children’. Because it was predominantly a young person’s disease at the time because older haemophiliacs had died of bleeding before we had cryo, there was an awful lot of young children, and for haemophilia doctors, they saw us like that. And so they would just not refer us on to an appropriate immunologist … my girlfriend at the time, it made sense for her to have an HIV test, and we had to go to a GU clinic cause the Haemophilia Centre wouldn’t do it. And we saw a GU doctor, and he sort of registered her as a patient, and he would have treated her. And my haemophilia doctor … would treat me and I wouldn’t be allowed to go and use them. I don’t know why, when we’d always had orthopaedic surgeons in there. That was routine to have a joint clinic with them. Why not have a joint clinic with the next specialism? … And if you were a doctor that treated people, an infectious disease doctor, an immunologist, whatever it was, you’d be seeing lots of that and you’d be getting better and better, and you’d be going to conferences to talk to other doctors about that. Haemophilia doctors almost -- just didn’t seem to do that and a lot of them -- there were a couple I mention, Mark Winter was one and later on Has Dasani was very good at keeping up-to-date with knowing what was going on, but the others, they just seemed to work on the idea ‘Well, I’ll read a few papers and then I’ll know what to do. Then later when we got combination therapy, there was a particular issue with haemophilia doctors, and I know it was at my centre, and I suspect it was at a number of others, they were just so behind. So they were prescribing one drug on its own, which at the time was not just useless, it was unethical.”[1618]

By contrast Mr AM said: “The haemophilia doctors at Great Ormond Street, I understand from my mother, were incredibly proactive about getting that care … they got a specialist HIV doctor in from the Mortimer Market Centre, and they set up a specialist clinic for all the boys at Great Ormond Street who were infected to be treated and looked after and to fight to get the first medication.” At the end of his evidence he talked about what might have been:

“Haemophiliacs should have been systematically tested and a comprehensive look-back exercise undertaken to ascertain those infected from the whole blood community. Specialist clinics should then have been developed with the leading experts treating those infected, experts in HIV, experts in hepatitis, counsellors, dentists and anything else the infected were struggling to cope with. Had that happened, I firmly believe many more people could have ended up in my position, namely having been able to lead a fulfilled life, despite the devastating infection which had befallen them ... I believe I am an example of what could have been achieved had a coordinated and comprehensive response been instituted.”[1619]

Treatment of HIV or hepatitis by haemophilia centres also had the consequence that people who had been infected as a result of their treatments often had no choice but to be treated for that infection by the doctor or hospital who and which were responsible for what had happened to them, and in whom in many cases they had lost trust.[1620] The psychosocial expert group reported to the Inquiry that:

“Breakdown in trust has been shown to have deleterious effects on quality of care across all serious health problems … Patients need to have trust in their healthcare provider’s ability and willingness to provide the best possible treatment. When this trust is compromised or damaged, communication is adversely affected, together with the patient’s willingness to follow treatment or advice. While a few individuals were able to transfer to another healthcare provider, this did not usually happen. Consequently, having to continue attending for healthcare in the treatment setting where the infected blood had been given was clearly a major source of distress for many individuals.”[1621]

The second question is a similar one, but is not confined to people with bleeding disorders. It is: should people who became infected as a result of their NHS treatment be treated for their infection by an appropriate specialist multidisciplinary team?

Again the answer is an obvious yes, but accounts given to the Inquiry have shown the variation in provision.

For example, Jackie Britton said that at one hospital “you fought for your six-monthly scans, which could take eight months, and then it was a wait to see your consultant” and contrasted this with her later experience: “with King’s [College Hospital] you have the scan in the morning, you see the clinic in the afternoon.[1622]

Michelle Tolley said:

“you have your scan, you might wait three or four weeks for a letter and then you see your hepatologist, if you’re lucky, and then you get sent off for bloods … not like at King’s [College Hospital], where you have your scan in the morning, your bloods, and then you see the person in the afternoon. That’s all done and dusted. So this can be over a space of a month from having a scan to seeing a hepatologist … then before you know it, you’re having another one … it’s always there at the back of your mind … So, yeah, it’s horrible and you have that twice a year and I’m going to have that until I’ve popped my clogs.”[1623]

One woman who experienced treatment in different places said: “Where I live, I can’t have the special liver scan which means that you don’t have to have a biopsy; the hospital doesn’t have that facility. This means I will have to keep going for biopsies every four years, to keep checking on my liver. The procedure is very painful.” She asked to be referred to another centre, where she had previously been treated, but the request was declined.[1624]

Jean Smith’s doctor informed her that since he had a small department he didn’t have access to the treatments she needed. At a later appointment he said that she needed triple therapy but he did not have access to the third drug and it was not worth trying interferon and ribavirin alone. She also experienced delay in treatment when she was referred to King’s College Hospital because the treatment she needed was new and she did not meet the criteria for the manufacturers’ clinical trials and so she had to wait a further year for treatment.[1625]

There is a lesson to be learned here, that people who have been infected with such serious viruses as HIV and hepatitis value and deserve the reassurance of expertise, the absence of delay, and the ability to know that their major problems are dealt with by the co-ordinated effort of a specialist clinical team. In other words, having been infected by the National Health Service, it was and is incumbent upon that same health service to do all that could and can reasonably be done to alleviate the consequences.

Treatment of Hepatitis C

A common account provided to the Inquiry has been of difficulties or delays in accessing treatments for Hepatitis C, often caused by lack of resources.

Once Hepatitis C was cloned in 1988, a test for its presence could then be developed. One became available from 1989 onwards. No curative treatment was then available. However, before screening became universal in the UK (in September 1991) a research programme had already begun to evaluate the use of interferon therapy in non-A non-B Hepatitis.[1626] Following that, the main milestones in date order were:

  1. In November 1994 alpha interferon was licensed for the treatment of Hepatitis C in the UK. It was thought to clear around 20 - 25% of infections.[1627]
  2. Between 1994 and 2001, interferon alpha monotherapy was the only treatment licensed for use in treatment of Hepatitis C in the UK.[1628]
  3. In October 2000 the National Institute for Clinical Excellence (“NICE”)[1629] recommended interferon alpha and ribavirin combination therapy for moderate to severe Hepatitis C; and said that “Interferon alpha monotherapy should be considered only when ribavirin is contra-indicated or not tolerated.[1630] Combination therapy was thus the mainstay of treatment from now on, with interferon being part of the combination until around 2014.[1631]
  4. In June 2002 pegylated interferon monotherapy was licensed in the UK. “pegylation” is the attachment of an inert molecule of polyethylene glycol to interferon, which prolongs the life (and thus the effect) of interferon in the body.[1632] Used as monotherapy, it was found to provide better response rates.[1633]
  5. In 2011 direct-acting antivirals (“DAAs”) became available for treatment of Hepatitis C. These targeted the genes involved in the survival of Hepatitis C virus and improved sustained virological response rates, although a number of them caused additional adverse side effects. Initially DAAs – including boceprevir, telaprevir, simeprevir and sofosbuvir – were prescribed together with interferon and ribavirin which resulted in “quite toxic combinations of treatment.[1634]
  6. From 2014 treatment has increasingly been by a combination of sofosbuvir and other agents, without the use of interferon. Initially this was by Harvoni, given to patients with decompensated cirrhosis who were “at risk of death or irreversible harm within 12 months”, and/or awaiting liver transplant.[1635] Side effects are generally very much less and more tolerable: some people report having had none worth mentioning.[1636]

Interferon: before licensing

Interferon was used in some specialist centres (on a named person basis) for some five years prior to licensing.[1637] Concerns about the cost of treatment with interferon were raised even before it was licensed. In a memo in 1990 regarding a pilot study of Hepatitis C screening, John Canavan[1638] noted that additional treatment costs“could be very substantial indeed” if interferon were to become the established therapy for Hepatitis C carriers.[1639]

Interferon: after 1994, when licensed

On 3 April 1995, the Chief Medical Officer (“CMO”) for England, Dr (now Professor Sir) Kenneth Calman, issued a “Dear Doctor” letter which enclosed guidance and procedures for the soon-to-start look-back exercise seeking to identify recipients of blood or blood components from donors now known to be carriers of Hepatitis C. It was expected that there might be 3,000 such recipients. The guidance provided that once a patient tested positive for anti-HCV they should be referred to a “specialist with an interest in the condition for further assessment. This will usually involve a period of observation and, in most cases, a liver biopsy. Patients considered to be at risk of progressive liver disease may be offered treatment with interferon.” The guidance went on to note that“Effective viral therapy given early in the disease process will reduce the chance of the more serious long-term sequelae of chronic hepatitis C such as cirrhosis and the development of hepatocellular carcinoma. Interferon alpha is the only licensed therapy for chronic hepatitis C.” The regime involved injections three times a week over a period ranging from six to eighteen months.[1640] Patients with significant hepatic inflammation were “likely to be offered” treatment whereas those with minimal diseasewere to be “kept under review.[1641]

The CMO’s letter provoked questions about funding almost immediately. On 6 April 1995, Dr G Bell, Ipswich Hospital, wrote to the CMO describing how he had recently had a patient who contracted Hepatitis C from a transfusion in 1987. The hepatologist at Addenbrookes Hospital in Cambridge had advised that he be treated with interferon at Ipswich. Treatment cost £3,000 for six months: so a course could cost up to £9,000. He said “The problem is of course, who is going to pay for the treatment?” – was it the GP, who wanted the patient to be treated but thought funding was for the district health authority? The health authority in turn described funding as a “grey area” – there had been no extra provision for the cost of interferon. Dr Bell wanted advice as to how best this could be managed.[1642] Similarly the West Midlands Director of Public Health wrote to the Deputy CMO (“DCMO”) to say that about 300 patients infected through transfusions were expected to be identified through the Hepatitis C lookback, with potential treatment costs of £500,000, and asked “who is going to pay.”[1643]

The DCMO apologised for a late response and stated: “patients on interferon require frequent monitoring of their blood count and biochemistry. For these reasons therefore it would be usual for hospitals rather than GPs, to prescribe Interferon. If they decide that this is what [is] required clinically, then the patient’s Health Authority [or] GP fundholder, as purchasers, will then have to consider whether or not to fund the treatment having regard to their priorities.”[1644]

It seems that the funding priorities of some health authorities did not include paying for interferon therapy. On 11 July 1995 Tom Sackville, Parliamentary Under-Secretary of State for Health, said in the House of Commons that the Government was taking “a number of measures designed to enable [those who contracted hepatitis C through NHS treatment] to receive the best possible advice and treatment”, without giving any details of what these measures were. When problems in gaining access to alpha interferon treatment were reported to him, he undertook to look into this.[1645] This prompted Graham Barker of the Haemophilia Society to write to the Department of Health to say that the Haemophilia Society regarded centralised funding as being essential for matters including treatment: “the Society believes that the provision of interferon alpha for the treatment of HCV should be centrally funded. We have examples of haemophilia centres wishing to prescribe interferon but being told that they cannot because of lack of funds. This is unacceptable. Interferon can be successful for up to 25% of those treated for this life threatening condition and should therefore be available for those who after discussion with their consultant wish to take it.”[1646]

The Haemophilia Society was not a lone voice in complaining about difficulties in obtaining treatment with interferon. The issue was raised by Dr Brian Colvin, chair of the UKHCDO, at a meeting of regional haemophilia centre directors on 4 September 1995. He said he “knew of problems in funding interferon and he thought that the Department of Health should confirm that this treatment would be funded when recommended by a physician.[1647]

Less than three weeks later, on 22 September 1995, the British Liver Trust, Haemophilia Society and Mainliners sent a letter to the Secretary of State for Health, Stephen Dorrell, saying they were particularly concerned that significant numbers of people infected with Hepatitis C, whom they as charities were working with, were not getting access to “treatment with Interferon or other drugs”.[1648]

Just a week later, the haemophilia centre directors met. Dr Frank Hill reported that it was “an on-going battle to persuade purchasers to pay for [interferon treatment].” It was proposed at the meeting by Dr Brian Colvin that Dr Andrzej Rejman, a senior medical officer at the Department of Health, be contacted if haemophilia centre directors encountered difficulties.[1649]

Graham Barker continued to press the point.[1650] On 16 November 1995 the Department of Health replied to him, to say that it did not “hold back money centrally or allocate resources to support specific treatments for particular segments of the population”; that funding was allocated to health authorities using a national formula; and that purchasers in local authorities were responsible for assessing the health needs of local residents, deciding which services to purchase and where to place contracts.[1651] In other words, there was no central funding available for treatment with interferon, and whether patients received it or not was up to their local health authority. The letter did however add that:

“Ministers have given an undertaking to look into any problems of appropriate access to alpha interferon that may be experienced by haemophiliacs. Before decisions could be taken on any action that might need to be taken we needed more information on the nature and the extent of the problem. With this in mind the issue was raised with Directors of Haemophilia Centres at their meeting in late September. We have since received a handful of reports indicating difficulties, some of which have now been resolved.”[1652]

Following further reports of interferon funding issues,[1653] Dr Hugh Nicholas (a senior medical officer in the Department of Health) wrote a minute on 13 December 1995 regarding the issue of the cost of interferon. This minute raised thequestion of whether any extra resources should be made available to fund it. He thought that the licensing of interferon, the announcement of the lookback exercise, and the Department of Health’s “endorsement” of the use of interferon, “will have raised expectations among all groups infected with hepatitis C that it will be more readily available than previously when it was prescribed on a named patient basis only.” He expressed concerns that while the Department of Health was not in a position to allocate more funds to Hepatitis C treatment nor to encourage purchasers to prioritise it, “if it is left entirely to purchasers, the allocation of resources for the treatment of hepatitis C may be very patchy across the country.[1654]

On 19 January 1996, the Department of Health wrote to the Haemophilia Society that the cases it, and the UKHCDO, had raised had been investigated, and the relevant health authorities and trusts in these instances had reported to it that interferon had now been provided. The letter added that “It seems likely from our investigations that the difficulties you identified have resulted from teething problems associated with the relatively recent licensing of alpha interferon. However, it went on stoutly to defend the policy of not allocating resources for specific treatments, since this was “based on the principle that decisions about treatment provision are best made locally, taking account of the needs of all the resident population. You will appreciate that there would be equally strong arguments in favour of prioritising money for other medical conditions which, if conceded, would undermine the principle of local decision-making.[1655]

In February 1996, the British Liver Trust released a press release noting that treatment, counselling and support services for Hepatitis C were “inadequate” according to a survey of liver units. It stated “three quarters of the units were experiencing problems funding the drug Interferon, currently the only licensed treatment for HCV, and less than 15% of HCV patients were receiving Interferon.” It went on to quote the director of the British Liver Trust, Alison Rogers: “We are also gravely, and from the evidence justifiably, worried that a patient’s access to Interferon may be dictated by the vagaries of the NHS funding system, rather than patient need.[1656]

In April 1996, the Department of Health responded to the British Liver Trust stating that “The majority of patients who will have been at risk of exposure to hepatitis C (i.e those treated with blood products prior to virus inactivation in 1985) have been tested for Hepatitis C and following further investigation are being treated with alpha interferon where this is considered clinically appropriate.[1657]

Questions raised within the Department of Health about central funding

Though the Department of Health had continued to hold to the principle that there would be no central funding, and that it was for local health authorities to allocate funding for those treatments they considered priorities for their resident populations, it was not maintained without some questions being raised internally in the Department of Health at the same time as the complaints about difficulties with access described above occurred.

Thus, after June 1995 when the British Liver Trust had raised concerns at a meeting with Dr Jeremy Metters it was recognised that both as a consequence of past treatment with blood products and as a result of the lookback exercise there might be a substantial number of patients seeking treatment with what was an expensive drug. Hepatitis following intravenous drug use was increasingly common, and the Department of Health saw no reason why treatment should not be given to those infected in that way on an equal footing to those who had received infected blood, tissue or blood products. Thus, an internal note of 2 October 1995 said that the issues raised by this needed to be discussed. There were “general policy questions” including “the tension between (a) the need for a central initiative to deal with a potentially significant public health problem and (b) the aim of leaving the NHS to determine its own priorities based on assessment of local needs” and there was a need to “confirm whether we maintain the line in response to requests for departmental action on additional resources, ie: that purchasers should take decisions based on local priorities”.[1658]

The principle applied did not change. When in May 1996 Dr Metters checked what had been said officially about treatment, he was told that the commitment given was “to provide treatment where appropriate (or necessary)” and that “There has been no firm commitment to provide treatment – as distinct from referral for specialist opinion – in every case.”[1659] The only commitment (as such) was a ministerial one “to investigate allegations of problems of access to alpha interferon.[1660]

Whether to issue Guidance, which might skew local funding allocations

The Department of Health continued to mull over the question of whether it should issue specific guidelines to purchasers about funding interferon treatment throughout 1996. It could have used its powers to issue guidance to ensure that, in specified circumstances, a health authority understood that it should give priority to it.

A paper was prepared for a meeting of the NHS Executive to be held on 13/14 June 1996. This paper covered a range of issues raised by Hepatitis C infections. It included the following:

“The cost of treatment with alpha interferon (£2-5,000/patient) is already placing a considerable burden on purchasers and the pressure to prescribe Alpha Interferon widely is growing. Alpha Interferon is, however, of limited overall clinical and cost effectiveness and its widespread use poses a dilemma. To deny any individual patient, however infected, a trial of a drug that may prevent their developing serious liver damage or even cancer is contentious, and may lay Ministers open to criticism (or even litigation). Conversely, to encourage people to seek treatment at a time when they are asymptomatic and may remain so for decades, during which time more effective treatments are almost certain to be developed, is equally questionable (and costly – potentially up to £51m additional cost in 1997/8). There is, therefore, also a case for issuing guidance to the NHS on the management of HCV.”[1661]

When the NHS Executive Board discussed the paper, it agreed that measures needed to be taken in the interests of public health, but reached no conclusion as to guidance, or what should be funded: further policy development “would be affected by the views of professionals … research findings and other information”.[1662]

There were a number of internal discussions in the Department of Health about issuing guidance, and a range of different views. The CMO (who had by now seen the paper) and colleagues from the Department of Health met on 16 July 1996. Dr Graham Winyard (who had drafted the paper in the first place and was Medical Director for the NHS Executive) told them that the NHS Executive Board had not yet come to a firm view, and a cautious approach was necessary.[1663] In relation to a meeting the following day one of the attendees recorded: “This morning’s meeting seemed to start from the presumption that the Department … would be developing, as a matter of some urgency, purchasing and clinical advice on the management of HCV and Alpha Interferon … I explained that the [NHS Executive] Board had not yet come to a firm view on handling, so a cautious approach seemed necessary”.[1664]

Dr Winyard’s advice was thus repeated, though there was thought to be:

“a strong case, on public health grounds, for at least developing clinical guidelines on the management of HCV, including the use of Alpha Interferon. However, in order to take account of last week’s Board views, and to arrange for guidelines to be developed which are robust and likely to be commendable … they expect such guidelines to be developed over a fairly slow timescale – taking up to about a year. They will seek input from professional and patient interest groups in developing the guidelines.”[1665]

By November 1996, however, officials had made the decision not to recommend issuing purchasing guidelines. The reason was the likely impact their issue would have on health authorities.[1666]

On 23 December 1996, a final submission (agreed by the NHS Executive Board) was sent to the office of the Parliamentary Under-Secretary of State for Health, John Horam, highlighting the increased expectations of Hepatitis C treatment, particularly for those infected through receiving blood transfusions and blood products, following the lookback exercise. The submission noted that “Specific commitments have been given about the provision of treatment in respect of haemophiliacs” and also stated that “Purchasers in some areas have made it clear that they are not willing to pay for treatment of Alpha Interferon”.[1667] The recommendation was that the Department of Health did not issue any purchasing guidance as it may be read as giving“an implicit signal to purchasers about the priority to be attached to a particular condition or treatment” which purchasers would not welcome, “but factual information would be helpful to purchasers and professionals working in the field.” It was noted that treatment with interferon was a matter of clinical judgement and decisions around funding were to be made by local health authorities.[1668]

John Horam sent this to the Secretary of State, Stephen Dorrell, noting “The reason for concern is the potential timebomb of an estimated 150,000 to 300,000 people who may be infected.” He wrote that he was broadly supportive of the recommendations, including not to issue purchasing guidance “but to make clear that decisions should be made locally (no blanket bans), supported by clinical guidance which the profession are developing.” He added that “some awkward questions will remain” which included that:

“there are two main groups of patients; haemophiliacs and others who were infected as a result of (NHS) treatment, and injecting drug misusers who have shared equipment. Morally, one might distinguish between these two groups (especially given the resource implications of treatment), but providing different treatment to people depending on how they were infected would be controversial.”[1669]

On 12 February 1997, Stephen Dorrell and John Horam discussed the approach to Hepatitis C: “on clinical guidance, Secretary of State noted the plans to promulgate guidance produced by the [Royal College of Physicians] … He suggested that GPs should have a greater role in identifying, diagnosing, treating and referring HCV as appropriate, and that GP involvement should be secured … The most effective way to do this should be through a letter from CMO to the [Royal College of General Practitioners].[1670] In his written statement, Professor Sir Kenneth Calman notes that“The direction of policy seems then to have been set and did not change throughout 1997, including after the General Election of May 1997 and subsequent change of government.[1671]

Until the end of 1997, therefore, the issuing of clinical guidance was left in the hands of the profession, rather than being the subject of a letter from the CMO, or formal government guidance.

On 13 November 1997, a policy submission was sent to the offices of the CMO and the Ministers of State, Tessa Jowell (later Baroness Jowell) and Baroness Margaret Jay. It noted that some health authorities were refusing to fund alpha interferon due to its cost and belief it was of limited clinical effectiveness.[1672] A consequence of this was that “In some areas, this continues to deter specialists from prescribing alpha interferon or leads to long delays in treatment whilst negotiations ensue.” Having also noted the “specific commitments”made to provide testing and, where required, treatment for those infected by NHS treatment,[1673] the submission went on to record that the department was supporting the medical profession financially and administratively in the production of clinical guidelines. If favourably appraised, then the NHS Executive would commend the guidelines to the NHS early in 1998. It concluded that “The ambiguity about the circumstances in which it is appropriate to use alpha interferon should be resolved through the development and approval of clinical guidelines … these guidelines could then form the basis for encouraging a more consistent approach across the NHS.[1674] However, the submission did not go as far as saying that what was recommended by the guidelines should be funded by the health authority – the recommendation was that“if asked about the availability of treatment, we reiterate that the management of patients with HCV is a matter for clinical judgement and there should be no blanket bans on alpha interferon treatment.[1675] The submission recommended continuity and the Inquiry has seen no record that the Ministers disagreed.

By the end of December 1999, two years on, despite the forecast about an earlier date for appraising clinical guidelines, no clinical or purchasing guidelines had yet been introduced relating to the treatment of Hepatitis C.[1676] The position of the Department of Health was still that “Funding for treatment is a matter for the local health authority.[1677]

In summary, in the period up to 2000 from the licensing of interferon in 1994 there were repeated issues with an inability to access interferon treatment for Hepatitis C under the NHS in England. Provision to access was not consistent across the country. Measures that could have helped to address problems over access to treatment, such as clinical guidelines, purchasing guidelines and centralised funding, were still not in place after five years. In his written statement to the Inquiry, Professor Sir Kenneth Calman noted that the issues involved “were common across the NHS when new drugs or treatments emerged.[1678] Dr Rejman noted in his statement that “it appears that DH [Department of Health] was encouraging the use of Interferon, where it was appropriate, but accepting that the final decision rested with the purchasers.[1679]

Meanwhile in Scotland, a working party of the Royal College of Physicians of Edinburgh produced a report on Hepatitis C in February 1996 and noted:

“There is currently no general agreement as to who should meet the drugs costs, general practitioner or hospital. There is a growing tendency in Scottish regions to set up special drug lists and ‘prescribing interface’ meetings to establish local policies. In general, the clinicians carrying the responsibility for prescribing (and its safety) would be expected to be the ‘cost bearer’. In the smaller regions of Scotland the additional numbers generated by a lookback survey are relatively modest and may be largely absorbable into existing budgets. In the west of Scotland, in particular, the additional costs are likely to be substantial.”[1680]

At an SNBTS medical and scientific committee meeting on 11 September 1996, it was reported that there was “considerable demand” for interferon in Scotland “but, as yet, no ‘ring fenced’ money.[1681] At the next meeting on 17 December 1996, Dr (later Professor) Aileen Keel “advised that ‘ring fenced’ funding for interferon treatment would not materialise.[1682]

Treatment of Hepatitis C 2000 onwards

In April 1999, the National Institute for Clinical Excellence (“NICE”) was established to provide clinical guidelines for England and Wales and reduce postcode prescribing.[1683] In May 1999 ribavirin was licensed for distribution in the UK[1684] and in October 2000 NICE guidelines for the use of interferon and ribavirin were introduced.[1685] While interferon had low cure rates, the addition of ribavirin increased cure rates of Hepatitis C “quite significantly.[1686] The NICE guidelines recommended that combination therapy be used to treat moderate to severe Hepatitis C.[1687]

On 5 December 2001, the Department of Health introduced a statutory obligation for the NHS to provide funding for NICE-recommended medicines and treatments from three months following approval.[1688] This took effect in January 2002.[1689] Pegylated interferon was licensed as a combination therapy with ribavirin, and then recommended by NICE on 28 January 2004.[1690] Thus from that date, funding for its provision was mandated in England and Wales.[1691]

Hepatitis C action plans

Between 2002 and 2010, all four nations of the United Kingdom developed action plans aiming to improve treatment services for Hepatitis C.

England

In 2002, the CMO of England, Liam Donaldson, published Getting Ahead of the Curve, a strategy for infectious diseases. The strategy identified the high prevalence of Hepatitis C in England and announced a specific strategy to bring together actions to improve Hepatitis C awareness and treatment.[1692] In August 2002, the Hepatitis C Strategy for England set out “proposals to improve the effectiveness of prevention, diagnosis and treatment services for hepatitis C.[1693] The Hepatitis C Action Plan set out a framework for how to implement the strategy. It identified that treatment services varied across different parts of the country and detailed a need for high-quality health services for the assessment and treatment of those with Hepatitis C.[1694]

Scotland

Scotland introduced a Hepatitis C Action Plan in 2006 which identified that there was “a serious problem in many areas of Scotland with the accessibility of treatment services”, and a “need for a substantial new funding to expand Hepatitis C treatment”. To decide quite how much funding was needed, and how and where it should be p