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The Macfarlane Trust Newsletter noted that there were ten trustees, six appointed by the Haemophilia Society and four appointed by the Secretary of State for Health.

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In order to increase the level of advice available to the Trustees from the beneficiaries, a general consultative panel was set up.

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From 1990/91 the policy was to restrict grants to "health related" issues.

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A Report by the Department of Health looking into the corporate management of the Macfarlane Trust was published and recommendations were made where necessary.

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The Partnership Sub-Group of the Macfarlane Trust first met in May 1999, having been created to meet recommendations from the Strategic Review: Final Report on the Macfarlane Trust Strategic Review.

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The Macfarlane Trust made proposals to revise the structure of grant payments. This included the requirement of a beneficiary to have a "need". The trustees interpreted "need" as "financially needy".

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Christopher FitzGerald stated in a meeting with the Department of Health that unless more money were given, the Trust could not meet its objectives adequately.

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In a report on the Grant Making Procedures of the Macfarlane Trust, it was identified that 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".

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The Report on the Grant Making Procedures of the Macfarlane Trust noted the Trust was least compliant with that guidance in monitoring and evaluation.

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The NSSC (which included the Chairman and four trustees) met every six weeks and replaced allocation meetings, which used to be where trustees met and allocated grants.

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The NSSC, which made the more difficult decisions on single grants, was said on external review to be an improvement in process.

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The board of trustees noted 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."

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It was noted in a Macfarlane Trust meeting that earlier the trustees used their discretion to disperse around £500,000 per annum in the form of one-off grants. After the Archer Inquiry there would be twice that amount available for discretionary disbursement.

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Christopher FitzGerald wrote to the Government stating that unless more money were given, the Trust could not meet its objectives adequately.

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Susan Daniels highlighted that widows did not have sufficient funds for everyday living in a financial advisor's report to the the Macfarlane Trust board board.

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In a meeting of the Partnership Group concerns on misinformation on the Trust website and on delays in the overall response time were discussed. It was of concern to the chief executive and head of support services that there was a climate of fear within the registrant community when seeking to approach the chief executive or the office in general.

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In a Macfarlane Trust trustees' meeting the APPG Inquiry report was discussed. It was summed up by one trustee as "as good as could have been expected in the circumstances"; another thought the review flawed from the outset, that the beneficiary community had not commented on it, and the report had not recommended that the Alliance House Organisations be abolished.

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At the meeting of the board of trustees the chair, Christopher FitzGerald, reminded the 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."

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The Macfarlane Trust NSSC requested a notice from the chief executive be placed on the website stating that grants could be awarded in exceptional circumstances.

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Russell Mishcon proposed that the trustees should write to the Department of Health threatening to resign unless it provided better funding. It was recorded that "Whilst several trustees were still in favour of sending the letter, others were either unsure or against, and two trustees were also not present. Roger Evans was not prepared to sign the letter."

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