VICTIMS of the contaminated NHS blood scandal have accused David Cameron of “betrayal” over a pre-election pledge to provide a £25 million fund to help provide urgent compensation before they die.
The pledge was made by the Prime Minister in March on the same day as the publication of the final report of the Penrose inquiry in Scotland, which examined how patients contracted HIV and hepatitis C through high-risk blood products and transfusions in the 1970s and 1980s.
Cameron announced the government would provide a new £25million interim fund in 2015/16 to "support any transitional arrangements to a better payments system". The fund amounts to about £3000 per living victim.
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But last month ministers said decisions on how the money would be spent would not be made for at least another 12 months and a consultation on the issue will not begin until later this year.
Campaigners say the compensation is urgently needed to provide support for victims now, with many facing the last years of their lives living in poverty. In Scotland it is estimated that each month one haemophiliac who was infected through blood products is now dying.
The wife of a 47-year-old haemophiliac who contracted hepatitis C through treatment and is now suffering liver cirrhosis told the Sunday Herald: “If he died tomorrow, I couldn’t afford to bury him.”
Bill Wright, chair of Haemophilia Scotland, who was himself infected with hepatitis C through contaminated blood products, said there was “real anger” around the delay to the promised funds.
He added: “We have been betrayed on this issue over decades and it is no surprise the UK government is betraying us yet again.
“It really would appear it was a cynical political gesture that was being made – Cameron had to say something with a general election looming.
“It is extremely hurtful to people because yet again their expectations were raised.
“There is a sense of betrayal with David Cameron himself - instead of helping resolve the issue he has actually made it much, much worse”
Wright said Haemophilia Scotland had written twice to Cameron in the wake of the announcement, asking for clarification on issues such as how the funds will be distributed and whether they would apply to Scotland – but had failed to receive a response.
The Scottish Government has committed to matching any investment if the funds do apply to England only. But the trusts already set up to distribute support to victims of contaminated blood are UK-wide and cannot make payments to recipients in one country only – so any money is effectively on hold until Westminster moves on the issue.
Meanwhile a financial review group has already been set up in Scotland to look at the provision of long-term support to people affected by the disaster in Scotland. It includes representatives from patients groups, charities and government and will produce recommendations by November, with a scheme expected to be established by April next year.
On Wednesday, a meeting will be held in Edinburgh as the first of a series of consultation meetings which will take place across Scotland to gather the views of victims and bereaved families affected by the scandal.
Wright said: “The situation in Scotland contrasts very sharply with the situation in Westminster - following the publication of the Penrose report, [Scottish government] ministers said there would now be patient involvement in reaching a long term lasting settlement and that would be a matter of urgency.
"Next week will be the first of the series of regional meetings at which we are hoping as many people as possible will be able to attend."
It estimated that nearly 3,000 people in Scotland were infected with hepatitis C and HIV after the authorities failed to screen blood supplies for the potentially fatal viruses. As well as haemophiliacs who received treatment with blood products, the victims included patients who required blood transfusions for medical conditions.
Bruce Norval, 50, who was infected with hepatitis C through haemophilia treatment, has been at the forefront of the campaign for justice over the past 30 years. He criticised both the UK and the Scottish Governments for failing to set up immediate short-term payouts following the Penrose inquiry. Both governments issued an apology to the victims in the wake of the inquiry.
Norval said: “I was totally and utterly appalled at the lack of preparation from either Westminster or the Scottish government to create an interim transitional payment that would have alleviated poverty in the short term.
“If they are saying we have to wait until April, I would suggest that everybody should be given a year’s money. That is what should have happened and that number could have been based on the basic living standards for someone with a disability.”
Existing schemes which have already been set up to provide discretionary financial support to victims of NHS contaminated blood include the Skipton Fund which offers ex-gratia payments up to £50,000 for those infected with hepatitis C, and the McFarlane Trust which was set up to support haemophiliacs who were infected with HIV as a result of treatment.
However in Ireland, for example, people infected with hepatitis C through contaminated blood were awarded payouts averaging £750,000.
Norval said it was vital that victims in the UK were given adequate financial support to provide security and a sense of “empowerment”. He estimated that only around 180 haemophiliacs affected by the disaster are still alive today – compared to around 400 some 15 years ago.
“They could have worked this compensation out years ago,” he said. “Leaving it to the point where most of us are looking at the last decades of our lives is nothing short of an obscene extension of suffering.
“In Scotland alone there will be at least 12 less of us within each 12 month period. The urgency of this is that you can’t pay a coffin.
“We need people to know that they have some security by Christmas – for a large chunk of us, it might be our last.”
Health secretary Shona Robison, said: “Following the Penrose Inquiry we immediately established a Scottish review group, made up of affected patients and families, to review the current UK-wide financial support schemes that are available.
“This group, chaired by Ian Welsh of the Health and Social Care Alliance Scotland, has already started work, and will report to ministers by the end of November. The review will conclude before World Haemophilia Day, April 17 2016.”
She added: “The Scottish Government has already contributed around £30 million over the last ten years to financial support schemes for the people affected by this terrible tragedy.
“However, like Lord Penrose I acknowledge that some people feel the existing levels of payment are insufficient. That is why we must move quickly to review these schemes.”
A spokeswoman for the Department of Health said: "Reforming the current payment system is a priority and we are absolutely determined to get this right for the people involved and their families. £25 million has been allocated to ease transition to a reformed system of payments for affected individuals and we remain committed to helping those who have been affected by this tragedy.
“No decision has yet been taken on how this will be used. We will publish a consultation later this year."
The Department of Health also said the money would not be used for administrative costs and all letters received by the UK Government on this issue had been responded to.
'My husband just wants to buy me a wee house and know he can leave his family financially secure when he dies'
John, 47, from Edinburgh, was infected with hepatitis C through treatment for haemophilia at the age of 17. In 2012 he was diagnosed with cirrhosis of the liver and given two years to live.
He was too ill to talk to the Sunday Herald, but his wife Sarah told how she fears John will not receive compensation in time to help him. Their names have been changed to protect their identity: even some close family members don’t know the full details of his ill-health because of the stigma John has suffered over his condition.
Sarah said: “John was infected in 1984 and his two brothers also were infected through haemophilia treatment. But he wasn’t told he had the virus until 1992 and by then he was quite sick.
“He hasn’t worked since he was 38 – he had to retire and he hates that. I have to sit and wait for him to fall asleep before I do my chores, as otherwise he feels lazy.
“He has to go every three months to be scanned on his liver and his doctor has said the end result of cirrhosis is a tumour on the liver. He has a 95% chance of getting a tumour.”
Sarah said that while John had received some financial support from the trusts set up to help victims, the money did not stretch far – particularly with the extra costs which are associated with his medical needs.
She said: “He was poorly now three or four weeks ago and had to take a taxi every day to the hospital and back, as he can’t take a bus. That was £140 that week alone in taxis.
“He says he is not bothered about himself now, but what he wants is to buy me a wee house and know he can leave his family financially secure when he dies. But I am not sure that is going to happen.
“They still can’t get compensation and they are dying at a rate of one a month."
She added: “We thought there would be some kind of payment after the Penrose inquiry, but there was nothing. Since the Penrose inquiry he has gone downhill. It was keeping him going. Everyone thought we would hear something, but it is finished and nothing has happened. It has been months. All he wants is the chance to be able to enjoy the life he has left now.
“I know wheels turn slowly, but it has been 30 years. They have to realise how sick some of these people are now. None of them deserved what has happened.
“We are hoping he will be well enough to start a new treatment soon. If he died tomorrow, I couldn’t afford to bury him. That is a sad fact, but I couldn’t.”