Published: 27/02/2007 00:00 - Updated: 25/11/2011 21:55

Great campaigners quest for answers nearing its end

Bruce Norval of Fortrose, a haemophiliac of 42, still feels anger at the Scottish Parliament for its response to the needs of patients who were given contaminated NHS blood or blood products decades ago.
Bruce Norval of Fortrose, a haemophiliac of 42, still feels anger at the Scottish Parliament for its response to the needs of patients who were given contaminated NHS blood or blood products decades ago.

HE was about to give up the long fight. Haemophiliac Bruce Norval was only weeks away from ending his fight for answers after 17 years of demanding them. He had promised when he turned 42 he would give up the battle, likening the age cut-off point to that in Douglas Adams The Hitchhikers Guide to the Galaxy. Book and film buffs will know that in the science-fiction comedy quest the answer to the Ultimate Question of Life, the Universe and Everything was 42. But last week and with only days to go until his March birthday he received the news he had longed for. A nationwide independent inquiry into how a generation of people with haemophilia a condition where the blood does not clot properly were given contaminated NHS blood or blood products in the late 1970s and 1980s will start next month. It is completely independent of Government and is a result of years of campaigning by The Lord Morris of Manchester, haemophiliacs and their families. Around 5,000 people in the UK were exposed to Hepatitis C and of those more than 1,200 were infected with HIV. Almost 2,000 have died since being infected and many more are now terminally ill. The remit of the inquiry is wide-ranging and will consider all patients not just haemophiliacs with ailments caused by a range of different pathogens. It will investigate the circumstances surrounding the supply of contaminated NHS blood and blood products to patients, the consequences for the haemophiliac community and others, and will consider further steps to address their problems and needs and those of bereaved families. There has never been anything on this scale before and there never will be again, Mr Norval said. It is something the Haemophilia Society has been calling for since December, 1988 and which the Government has continually resisted. Society chairman Roddy Morrison said: It is particularly important that the inquiry will be examining the consequences of the disaster for the haemophilia community for those living with infections. Many have suffered unduly with financial hardship. Some have even had to give up their homes. Many more have found themselves to be uninsurable, unemployable and unable to make adequate provision for their dependents. Mr Norval discovered he had contracted Hepatitis C in the early 1990s and next month will give evidence at the inquiry. I want to see the truth about what happened and how it happened, and I would like to see finally and once and for all that the needs in the most general terms that have been created by this disaster are finally and completely answered, he said. All we have ever really wanted is a factual and truthful account of how it is that over half of haemophiliacs in the UK have died either directly or indirectly as a result of the largest pathogenic medical disaster in medical history outside of Auschwitz and the experiments of Doctor Mengele. The introduction of Freedom of Information legislation has revealed fresh evidence in Mr Norvals pursuit of answers. Mr Norval who lives in Fortrose said he hoped the inquiry would answer a range of questions over medical procedures and how blood was collected from the prison population. We would ask that those questions and others be fully investigated so that some measure of confidence in our treatment can be restored, he said. Without this inquiry and its findings being properly answered we would remain disenfranchised within society. As a proud Scot and a great believer in democracy I find that unacceptable. I have spent the last 17 years of my life trying to change that and hopefully now we will have our best opportunity to make that happen. And, he said, he had given up caring about the Scottish Parliament and Scotlands health minister Andy Kerr, who has ruled out holding a public inquiry north of the border. That is despite the health committee of the Scottish Parliament voting last April in favour of a public inquiry. To be honest, Holyrood no longer has any credibility for me, he said. He [Mr Kerr] does nothing but shame my country every time he opens his mouth on the issue. Either he fails to understand the full extent of our grievances or chooses to be an excuser of something that stops just short of being a medical holocaust. Mr Norval was diagnosed with having haemophilia in 1967 when he was just three years old and needed blood products. But it was not until 1991 that he discovered he had contracted Hepatitis C during the course of his treatment. My consultant did say to me that I was probably infected by the first treatment I was ever given and then infected by every other treatment up to that point in time, he said. He copes daily with the symptoms of Hepatitis C including severe nausea or feelings of nausea, exhaustion and aching joints and muscles. Imagine the worst flu ever and you cant get out of bed to go to the toilet then double it, he said. But he said what concerned him the most was that he and others contaminated were never told about how to protect those closest to them. And although his family have not been infected, he said he lives with a constant feeling of guilt. As the years have gone on my health has got significantly worse. Not only do I not bring money in to my family, I take money out because my needs require extra spending. All of that makes me feel less of a father and less of a husband, yet I have to get up every day and get on with some sort of life, he said. A compensation pay-out of £20,000 in 2004 did little to relieve the anger he felt. It refused to pay out any money to the widows and bereaved families. It was pittance in the face of colossal financial loss and physical and mental suffering. It came nowhere near meeting the needs of individuals, he said. His anger came to a head just days before the opening of the Scottish Parliament, when he was told that he and other haemophiliacs could have been exposed to Creutzfeld-Jacob Disease (CJD) and may be at risk. I think at this point I probably did crack, he said. Mr Norval and Inverness haemophiliac Andy Gunn became the first people to take direct action outside the Scottish Parliament. It became clear that they [MSPs] had pretty much given up any hope of us receiving any justice from within Holyrood. That was the last straw for me. I took two bottles of paint and threw them at the parliament. It was a visual marking of what I feel is the moral stain on Holyroods foundations and the foundations of this new Scottish democracy for failing to answer the cries of Scotlands most vulnerable citizens. But to qualify that, I would never do it again because it makes no difference. For five years in the late 1990s, Mr Norval was one of the only campaigners fighting for answers. But he says he does not blame others who gave up the fight. I have been called a plague carrier I can understand why people dont want it. Most people have been appalling, some have been wonderful. Having haemophilia has the mark of Cain. I now have a chance to go to an inquiry and make a statement and let the great and good decide whether things could have been better. That will allow me to walk away with some sense of closure, which I never thought I was going to have. I will leave it after that. h.paterson@inverness-courier.co.uk

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