Latest blow to blood scandal victims: Government compensation will leave them WORSE off
- Credit: Archant Norfolk
Major concerns have been raised that new proposals to properly compensate those affected by the contaminated blood scandal will actually make their situation worse.
An investigation can reveal that victims, campaign groups, charities and even cross-party MPs are among those to question the effectiveness of the £100m pledge by the Conservatives in January to help end the suffering of those embroiled in the decades long scandal.
An estimated 32,000 people were infected with hepatitis C (hep C) and more than 1,000 HIV after being treated with NHS-supplied contaminated blood or blood products in the 1970s and 1980s. Many have died in what is one of the UK's worst peacetime disasters.
Although many of those receive some financial support, for decades campaigners have been claiming it in no way adequately compensates them for the financial and emotional impact on their lives.
The government pledged an extra £100m, on top of £25m promised last year, as part of a consultation which runs until April.
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However, a survey of those affected found thet no-one, from 125 quizzed, thought their situtation would improve. Meanwhile, issues already raised to the government include:
- The loss of one-off payments for things like winter fuel allowance.
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- New assessments which could reduce what people receive.
- Annual benefits that decrease in real terms.
- Inadequate provision for those affected but not infected ie; family members.
- A postcode lottery with those in Scotland better of than in England.
Sufferer Annie Walker, from Norwich, said: 'It seems worse than imaginable, it is quite unbelievable.'
Simon (not his real name), also from Norwich, who contracted hep C as a child, added: 'I have lived with this for pretty much my whole life. All we want is proper compensation for the major impact this has had.'
A letter sent to sufferers by The Caxton Foundation, a charity established to manage those with hep C, and obtained by this paper, explains that while the existing £14,749 payment for those with the virus at stage 2 will increase to £15,000, that will not rise with inflation.
It raises concern people could lose up to £4,000 a year in discretionary payments they will no longer receive, that those who are bereaved now and in the future could miss out and that potentially those with both stage 1 and stage 2 hep c could be worse off.
The Haemophilia Society said the majority of people receiving financial support will be worse off and called for the consultation to be withdrawn.
A source who attended this week's all-party parliamentary group meeting on the subject told us there was 'huge concern'.
While some benefits of the proposals were recognised - such as the simplification of the structure of trusts and payments for Stage 1 hep C sufferers - it was acknowledged cross-party that most will be left worse off under the proposed reforms.
The source said there was also concern about where the new cash would be spent and some queried the government's estimations of the number of those affected.
Sue Threakall, of patient group Tainted Blood, said: 'Since this announcement seasoned campaigners have been devastated, I can't over-state our level of concern.
'£100m is not enough for what people have been through. I know sufferers who cannot pay their bills or feed their children, all through no fault of their own. But it is not just about the money, more the way they continue to treat us. They simply don't care.'
She said the government needed to scrap the plans, talk to sufferers and campaign groups and come up with proposals that take into account the scale of the impact on people's lives. Part of that would include a lump sum 'to put people back in the position they would otherwise be in'.
The Department for Health says 2,402 people with hepatitis C stage 1 will receive annual payments for the first time.
Health minister Jane Ellison added: 'The budget will more than double the department's annual spend on the scheme over the next five years. This is significantly more than any previous government has been able to provide for those affected by this tragedy.
'We will of course welcome alternative suggestion and will consider them following the close of the consultation.'
Norwich North MP Chloe Smith, who has campaigned on behalf of victims, said: 'Victims need justice and I urge people to have their say on the consultation. There are some issues that will be sorted and I, along with other MPs and the minister, will continue to look at it.'
In Ireland, those infected with hep C were awarded an average of £750,000 each, while the Italian government was recently told to pay £7.7m to more than 350 people and in Scotland those infected with HIV, or who developed advanced hep C, are set to get £27,000 per year, up from £15,000.
Do you have a story for the Investigations Unit? Contact David Powles at firstname.lastname@example.org.
Survey highlights concern over proposals
The scale of disappointment over the government's latest consultation have been highlighted in an exclusive survey of those affected by the scandal, completed by 125 people.
None of those questions said they felt they would be better off financially, while 67% said they felt the plans would leave them a lot worse off.
When asked to explain why here were some of the comments:
'As a stage 2 the pittance I get won't go up with inflation, so if I'm lucky enough to live a few years longer than expected I will only get poorer.'
'I have stage 1 Hepatitis C and I think the assessments will be so strict that if you are not at deaths door you will not receive any annual payments.'
'I would be £208 per month worse off and potentially much more from losing the availability of grants.'
'No security. No pension. No closure. No life.'
The latest developments appear to have seriously dented the confidence sufferers had that the situation would ever be satisfactorily resolved.
When asked prior to the recent proposals to rate how confident they were about reaching an acceptable settlement, with one being not very and 10 very, 41% rated three or below but 26% eight or above. Now, 72% rate three or below and just 9% eight or above.
Those polled were also asked to leave one comment for the government. Answers included:
'Do the right thing. We have suffered enough.'
'Imagine if it was your child infected and had to go through this.'
'Why are we being treated like this? Pay up and let us shut up.'
'Take responsibility for your actions.'
Some of the local victims of the contaminated blood scandal
A special investigation last year revealed that decades on from the tragedy, sufferers continue to be let down by the government in many ways.
Since that special report many people from Norfolk, Suffolk and Cambridgeshire have come forward to describe how contaminated blood has impacted their lives. They include:
Steve Sillett, of St Paul's Close, Brockdish, on the Suffolk and Norfolk border, who was infected with the hepatitis C virus.
The 57-year-old, had contracted liver cancer and been given just a few months to live. Fortunately, a donor was found for the lorry driver, however, he and his wife Di were recently rocked by the news that a blood clot in the main artery of his new liver has been discovered.
Hepatitis C sufferer Annie Walker, from the Mousehold area of Norwich, who has been told she may not make her 62nd birthday because of advanced cancer as a result of the disease.
Michael Colyer, who lives in Barford with his wife Helen, suffers from mild haemophilia but found out 20 years ago he had contracted hep C.
Jill Sutton, 58, of Newton Flotman, lost her father Peter Sutton, a Costessey postman, in 1993, aged 64, from liver failure. It was only afterwards that a post-mortem examination discovered he had hep C.
Stuart Oliver, 47, of Friday Bridge, near Wisbech, who died of cancer and chronic liver disease, weeks after doctors discovered he had contracted hepatitis C.
'Simon', a married father-of-five from Norwich, who was being denied a breakthrough drug called Sofosbuvir, even though it was approved by drugs regulator NICE as a potentially effective drug to rid sufferers of hep C.
John Peach, of Ludham, who had two sons, haemophiliacs, who contracted HIV from contaminated blood in the 1980s. Both died in 1993, in their 20s.
Meeting was held behind closed doors
An All-Party Parliamentary Group (APPG) on Haemophilia and Contaminated Blood met this week to discuss the latest proposals - but we were prevented from attending.
A bid by this paper to access Tuesday's meeting was rejected on the basis the group, of which Norwich MP Chloe Smith is vice chair, decided it should be restricted to just MPs and Peers.
However, we have obtained a letter from Labour MP Diana Johnson, the APPG chair to Jane Ellison, minister for public health, which outlines several concerns ministers have about the latest developments.
It reads: 'I have been contacted by numerous people who are affected... Sadly, the overwhelming majority have been disappointed by the Government proposals. Indeed, many people have contacted me to say the proposals will make them worse off.'
It goes on to raise concerns about potential loss of discretional payments for those with HIV and some of those with hepatitis C, proposals to freeze the level of payments, which means they would decrease in real terms, mention of health assessments of sufferers and plans to only offer support to widows or dependant children if they already receive assistance.