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 | You and Yours - Transcript 91Èȱ¬ Radio 4 |
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| TX 18.08.03 - EPILEPSY CHARITY WARNS THATTHOUSANDS OF PEOPLE COULD SUFFER IF DRUG IS WITHDRAWN TOO QUICKLY |
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| PRESENTER: WINIFRED ROBINSON ROBINSON For some years now on this programme we've been reporting on the fight for financial help for haemophiliacs who were infected with Hepatitis C, through contaminated blood products. At the weekend came the news that the government has finally relented and the payments will be made to the 2,800 people still living who have Hepatitis C. The amount on offer isn't known but it may be similar to that announced in Scotland a short time ago, that is £20,000 for all those who have contracted the disease through contaminated blood products and a further £25,000 for people who have developed liver cancer or sclerosis of the liver as a result. It seems unlike that relatives of the dead will receive anything, although the Department of Health says no details have been announced just yet. If that's the case it will be a profound disappointment for widows, including Hazel Bullock. Her husband, Ken, who was an engineer, died four years ago, he was 62. He had been ill with liver disease brought on by Hepatitis C for some time and she told me what happened. BULLOCK He went in to have a tooth out and he had to have factor 8 … ROBINSON The clotting agent. BULLOCK Yes and two blood transfusions and it was at that time he was given contaminated blood. And he became ill quite quickly. ROBINSON So for how many years was he sick? BULLOCK Twelve years. He carried on working and I think the weekends were devoted to preparing for the week ahead and just resting. It's very exhausting and as the liver declines and becomes less and less efficient one becomes more and more ill. It affects just about every part of the body I think. The district nurses came every day, he was desperately, desperately ill - he couldn't eat, his weight plummeted. You lose all ability to concentrate. He had a very good mind and he was brilliant at mathematics and it just went, he couldn't even watch his beloved sport on television, there was no concentration. ROBINSON Were you financially dependent on your husband at all? BULLOCK Yes, I'm the generation that stayed at home, brought up children and ran the home generally. ROBINSON And how many children did you have? BULLOCK Three. ROBINSON What is yourreaction then to the suggestion that it seems unlikely that widows will be given any payment at this stage, even if those haemophiliacs still living with Hepatitis C do at least get something? BULLOCK I think it's absolutely appalling. I'm quite sure there are some widows that are in need. We all lived with the anxiety of haemophilia and the last thing we expected was that our husbands would die because of the treatment they were given to alleviate their haemophilia. I think what we want is acknowledgement and some kind of - well yes some kind of compensation. I'm so glad that the men that are still alive are to be compensated, it will be an enormous help for their carers and for them. But I'm also very worried that the widows are gong to be ignored because really we've lost everything. ROBINSON Hazel Bullock talking about her husband Ken. I'm joined now by Karin Pappenheim, who's chief executive of the Haemophilia Society. How many widows like Hazel Bullock and their families are left? PAPPENHEIM There isn't an exact figure but we know that at least 200 people with haemophilia died directly as a result of Hepatitis C and that many more, possibly up to a thousand, have died since 1993 and we would assume that the majority of those had Hepatitis. And so that gives an idea of the sort of size of group which of course, as Mrs Bullock has said, most be included in any kind of financial provision that the government proposes. ROBINSON Well I said in my introduction it's unlikely widows will receive payment and that's based on the assumption that the Scottish compensation offer, which was announced back in January, will be the model for what happens in England and Wales and Northern Ireland, do you think that's likely to be the case? PAPPENHEIM The Haemophilia Society and our members have been profoundly unhappy with the Scottish proposals since last autumn and we've made that very clear. And in fact last June, when we met with Westminster ministers, we presented our own proposals developed by an expert think tank for a scheme based on the model that currently operates in Canada and that included provision for the dependants of those who've died. So to us and our members it's unthinkable that there should not be provision for the deceased. ROBINSON The offer of an ex-gratia payment after years of refusal mirrors what happened over HIV infection doesn't it, although the sums proposed, certainly in Scotland, are very, very much smaller this time but did the widows of those who were infected with HIV get any compensation - any payment I should say? PAPPENHEIM Yes and one of the very important aspects of the scheme that was set up in 1987 for people with HIV, who'd contracted that through contaminated blood, a critical point is that it provides for the dependants of those who have died and of course that scheme is still continuing today. And we would see it as vital that there must be recognition of the needs of people who've been directly bereaved as a result of this deadly virus. ROBINSON Karin Pappenheim many thanks. PAPPENHEIM Thank you. Back to the You and Yours homepage The 91Èȱ¬ is not responsible for external websites |
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