By Diana Johnson MP
Every day, thousands of people rely on treatment with NHS-supplied blood to stay alive and healthy. For people with hereditary bleeding disorders, such as haemophilia, the NHS is a vital lifeline: their own blood does not clot as easily as other individuals, and they often need blood clotting factors to help heal wounds and prevent injury. The lives of numerous other patients without haemophilia are also saved by NHS blood transfusions – such as when they lose large amounts of blood due to an injury, or following NHS operations for a range of conditions.
In the modern-day NHS, this system works well. Blood supplies are either properly sourced or are produced synthetically; any viruses in blood are checked for and removed; and treatment is administered to the appropriate patients. However, from the 1970s through to the early-1990s, we now know that, for various reasons, much of the blood the NHS procured to treat patients then was infected with HIV and/or Hepatitis C.
The contaminated blood scandal is perhaps one of the last great scandals of the state which hasn't been satisfactorily dealt with. It has affected thousands of people – almost the entire community of people with haemophilia at the time (some 4,675 people) were infected with Hepatitis C, and a third of them were infected with HIV.
No British government has ever issued a public apology or conducted a public statutory inquiry into the tragedy. Instead, in response to various lobbying efforts by campaigners, successive governments have gradually expanded a patchwork of financial support to those affected. So as to avoid the implication of governmental culpability, this support has been administered at arm's length through five 'trusts' – two private companies and three registered charities – solely funded by ex gratia payments from the government.
A great many of those affected are not at all satisfied with the support they get. Many have sadly already died, and will never see the day when things are put right. But those who remain, and the widows and dependants others have left behind, desperately want to see a settlement which will finally help achieve closure. Infectees – many of them unable to work – want financial payments which allow them to live comfortably and self-sufficiently. Spouses and carers who have invested so much in the care of their loved ones often find themselves unable to work upon an infectee's death: they want financial assistance to support them in retirement.
Diana Johnson is Labour MP for MP for Hull North
That is why, in September 2014, the all-party parliamentary group on haemophilia and contaminated blood, which I co-chair, initiated an inquiry into the current support arrangements for people affected by the contaminated blood scandal.
With the generous help of YouGov and the Haemophilia Society, we distributed a survey to everyone currently receiving support from the trusts, asking for their views on the quality and sufficiency of the support they receive. The response has been phenomenal: nearly 1,000 people took the time to complete the survey, many giving detailed, harrowing and at times deeply moving accounts of the way the scandal has affected them.
The result is the most comprehensive appraisal to date of the trust-based system of provision for those affected. Today, we publish the results of this four-month inquiry: a 100-page report setting out, in detail, the problems with the assistance people currently receive. It can be downloaded from the Haemophilia Society website.
The findings of this report are stark and numerous, but three in particular stand out.
Firstly, we were approached by many beneficiaries who were living in a state of poverty. Under the current support arrangements, two groups of beneficiaries receive no ongoing support whatsoever: the widows/widowers of Hepatitis C infectees, who – unlike the widows of HIV infectees, who are entitled to means-tested ongoing payments – do not receive any payments upon their partners' deaths; and those with chronic (or 'stage one') Hepatitis C. Whilst those who develop liver cirrhosis or advanced liver disease ('stage two' Hepatitis C) receive ongoing support on the same basis as people with HIV, the majority of Hepatitis C infectees are at stage one: they have advanced to chronic Hepatitis C, but have not yet progressed to cirrhosis. With the development of new drug regimes, many of those at stage one can clear the virus – unlike those with HIV or stage two Hepatitis C – and on this basis they are denied ongoing payments. This is dubious reasoning. Forty-five per cent of people at stage one do not clear the virus following treatment, and even those who do clear it report still being in a state of ongoing need, their livers already heavily damaged in the decades before effective treatment developed.
"Contaminated blood is perhaps one of the last great scandals of the state"
Secondly, in addition to any regular ongoing payments people receive, both infectees and their families can apply for all manner of discretionary payments, delivered through the three charities. This system was by far the largest source of individuals' vitriol, with a great deal of frustration over the opaque, demeaning and time-consuming system of support.
All trust registrants need ongoing support to meet one-off needs like hospital costs and home adaptations. Those in poverty – denied ongoing payments – often have to approach the charities to meet even more basic needs, such as vouchers to obtain food. But people have to prove 'charitable need' in order to access these payments. The process of providing this proof can be highly time-consuming, impractical and, in consequence, distressing.
One respondent said of his Hepatitis C infected wife:
"I have seen her in tears on a number of occasions over the way her applications have been handled. She is not strong enough to take such a battering."
"The whole system seems designed to make you feel like a beggar."
When you're in poverty, suffering from a debilitating virus and in desperate need for vouchers for food, it is difficult to conceive of how such a system could possibly give you what you need, when you need it.
On top of this, people report being left completely in the dark about what help is available to them. The trusts are a well-kept secret: there is a considerable issue of under-registration with the Hepatitis C company and charity, with many infectees still unaware of their existence. But even those who successfully register say they've never being given any information, in an easy-to-access format, detailing precisely what they can claim and how they can claim for it. They feel they are in thrall to a system which, in the minds of one respondent, "appears to be designed specifically to stop people claiming anything."
Amongst other things, we've been approached by people who had fallen into considerable debt paying travel costs for their own hospital visits related to their viruses – because nobody had ever told them they could claim this from the trusts; by widows of HIV infectees who were never told they could apply for means-tested ongoing support; and by infectees who, never made aware they could apply for holidays, hadn't been away from home for years. These are only the people who were able to discover, by some stroke of luck, that they were entitled to these things. It says nothing of the numerous people who approached us protesting they knew nothing at all of what help was available.
Some believe the government used trusts to distance itself from the scandal
We asked respondents to rank their knowledge of their trust's decisions and processes, and the rankings people gave were dismally low. Indeed, since this inquiry has concluded, HIV infectees have also approached us saying they had never once received a single lump sum or ongoing payment from the HIV charity to help support their children, even though the charities explicitly told us all their eligible beneficiaries received them. If all beneficiaries with children aren't receiving these payments, it has startling implications for the number in poverty.
Finally, respondents have raised fundamental questions over whether the money given to the trusts is sufficient to meet beneficiaries' needs. The whole package of support has developed haphazardly in response to lobbying efforts by campaigners: the funds and payments have been set by Department of Health officials, and there has never been an objective and holistic assessment of what mix of ongoing payments and charitable funds is necessary to meet people's needs. Setting payments at a rudimentary 'poverty line' for those affected just wouldn't cut it: it fails to account for any additional costs associated with living with HIV and Hepatitis C, which raise the poverty line; and demeans those affected, who should rightly expect enough support to live comfortable and self-sufficient lives, rather than just enough to be lifted out of poverty.
All this needs to change, and our inquiry sets out a range of practical measures to help set things straight. Amongst many other things, we want to see a public health doctor assess what money is necessary to meet the needs of those infected, and then set payments at that level; we want to see this doctor establish ongoing payments for those with stage one Hepatitis C; and we want the widows of Hepatitis C infectees to receive the same support as those with HIV. We also want to ensure the charities properly communicate the support available so that nobody is left in the dark, and that an external system of appeal be put in place for decisions for discretionary assistance. To top this off, we want to see an apology from the prime minister, on behalf of all previous governments, to all those affected by the tragedy.
Our hope, like the thousands of others affected by this scandal, is that we might soon move towards achieving closure for those affected. This report doesn't constitute all that is necessary to achieve this closure, but in conjunction with other initiatives currently under way, there is the chance that this will all add up to something approaching a final, conclusive settlement which will, at last, enable these people to live the rest of their lives in dignity.
Diana Johnson MP is co-chair of the all-party parliamentary group (APPG) on haemophilia and contaminated blood, which has just published a report into the current support for individuals affected by the contaminated blood scandal. There will be a backbench business debate on the issue on Thursday 15 January. The report is available to download from the Haemophilia Society website.
Factor 8 is a non-profit organisation providing support and advocacy for victims and families affected by the Contaminated Blood Scandal - https://www.factor8scandal.uk/
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