Today (17 June 2010) Haemophilia Scotland delivered a detailed submission to the Judicial Inquiry into the contaminated blood disaster chaired by The RT Hon Lord Penrose. The opening statement of the submission is as follows:
“In the 1970s and 1980s approximately five hundred Scots with haemophilia were infected with the hepatitis C virus as a result of their NHS treatment. Eighty-seven were also infected with HIV. For the last twenty-five years the Scottish haemophilia community has sought to discover how these infections, described by Lord Robert Winston as ‘the worst treatment disaster in the history of the NHS’, were allowed to happen.
“The victims of this disaster have long suspected that procrastination over the introduction of tighter safety rules compromised the safety of blood products. Why was Scotland slow compared to other developed countries to introduce heat treatment and donor testing?Were the risks of concentrated clotting factors adequately assessed before this treatment was rolled out?Were patients adequately warned about the risks of their treatment? Did the ability of the Scottish National Blood Transfusion Service to operate its facilities under Crown Immunity contribute towards lax safety and hygiene standards? Did delays informing patients that they had contracted viruses lead to partners and spouses being exposed to avoidable risks?
“The ethics of medical research are also the cause of ongoing concern.People with haemophilia suspect that, without their knowledge or consent, they were the subjects of various research projects, including studies mapping the progression of the HIV virus.In addition, questions have been raised about whether counselling provisions were adequate given the terrible psychological toll of the contaminated blood disaster.Haemophilia Scotland has heard reports of patients having difficulty accessing treatments such as liver transplants and endoscopies. Interferon-ribavirin treatment for hepatitis C has a low success rate and severe side effects for people with haemophilia.
“The Penrose Inquiry is timely.The current debate about donor testing for vCJD has strong echoes of the debate about the introduction of a donor test for non-A, non-B hepatitis, which continued unresolved throughout the 1980s.This shows that lessons still have not been learned. This submission will conclude that many of the infections caused by contaminated blood products could have been avoided if all available precautions had been introduced immediately.Swifter steps should have been taken to improve the safety of blood products, and the use of factor concentrates should have been minimised in the meantime.The Scottish haemophilia community is delighted that these matters are finally being investigated by a formal Inquiry, and hopes that the lessons can now be learned.”
Two of the Trustees of the Haemophilia Society based in Scotland are available for interview today.
Philip Dolan will be part of the delegation delivering the submission and is Chair of the West of Scotland local group. He can be contacted on 07974 823937.
Bruce Norval is a member of the Highlands and Islands local group and will be available in Inverness. He can be contacted on 01381 621694.
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