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As part of risk management the Creutzfeldt-Jakob Disease Incidents Panel sought to balance the individual's "right to know" and "right not to know" about possible exposure to risk.

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Dr Winyard of the NHS Executive wrote to NHS Trust medical directors informing them that they had been told by ethics experts and advisory bodies that there was no need to inform patients of their exposure.

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In a letter from Dr Winyard of the NHS Executive to NHS Trust medical directors, he stated: "There may clearly be some circumstances where clinicians will decide to inform a particular patient of the reason for the product withdrawal...In such circumstances it is for the clinician to decide how best to respond".

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SEAC reported that the evidence favoured a conclusion that there was a link between BSE and vCJD, but this was not (yet) sufficient to be regarded as scientific proof of a causative link.

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The BSE Inquiry Report Volume 1 Findings and Conclusions reported that: "The impression thus given to the public that BSE was not transmissible to humans was a significant factor leading to the public feeling of betrayal when it was announced on 20 March 1996 that BSE was likely to have been transmitted to people."

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A letter from Dr Sinka of the Health Protection Agency to Dr Dolan stated that "individuals who only received plasma products between 1980 and 1989 should now have their treatment history re-assessed to confirm this fact and if it is confirmed, they should be de-notified" of being at an increased risk of vCJD.

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The CJD Incidents Panel's framework for the management of possible exposures to CJD through medical procedures drew particularly on the document "Det Norske Veritas Risk Assessment of Exposure to vCJD Infectivity in Blood and Blood Products for Department of Health".

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"Haemophilia" carried an article titled "Variant CJD infection in the spleen of a neurologically asymptomatic UK adult patient with haemophilia".

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In the First Annual Report of the Spongiform Encephalopathy Advisory Committee, SEAC considered the results of two studies in "Nature" and became convinced that the evidence of the link between BSE and vCJD had become "compelling".

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Within two years of the announcement that there was a probable link between BSE and vCJD, an inquiry was set up to "establish and review the history of the emergence and identification of BSE and new variant CJD in the United Kingdom".

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The Chief Medical Officer (England), on behalf of the CMOs of all four nations, set up the CJD Incidents Panel which was asked to develop a framework for the management of possible exposures to CJD through medical procedures which would then be subject to consultation with interested bodies and organisations.

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Dr Dolan wrote to United Kingdom Haemophilia Centres Doctors' Organisation colleagues informing them of the intended de-notification of patients only exposed to UK fractionated blood products during 1980-1989.

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An ad hoc meeting was organised at the Royal College of Physicians of Edinburgh which noted that there was a need to consider what plasma fractionators should do, and that because the level of BSE in the UK was significantly higher than in other countries "it may thus be appropriate to be proactive in this area."

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The Creutzfeldt-Jakob Disease Incidents Panel produced a report recommending which groups should be told they had an increased risk of vCJD for public health purposes from implicated plasma, and setting out notification timelines.

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It had been identified that three patients had developed vCJD almost certainly as a consequence of receiving blood transfusions.

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Whereas people who had received transfusions were only notified if a donor went on to be diagnosed with vCJD, patients undergoing surgery or endoscopy were now to be asked if they had received blood transfusions from 80 or more donors since 1980 and considered at increased risk if so.

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A witness told the inquiry that he had needed his gallbladder removed having been infected with Hepatitis C and the surgeon told him "You are an expensive patient. We had to archive everything in the theatre because you have a variant CJD risk".

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The Working Party of the Committee on Proprietary Medicinal Products supported the UK recommendation that there should be a recall of batches of blood products if a blood donation to a plasma pool was subsequently found to have been made from a person who developed nvCJD.

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A witness described her husband being refused endoscopies due to vCJD risk, and they ended up having to book a private appointment for his treatment, costing thousands of pounds.

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Transmission studies in combination with surveillance data provided "compelling evidence" of a link between BSE and vCJD.

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