Today, the All-Party Parliamentary Group (APPG) on Haemophilia and Contaminated Blood, which I co-chair, will release the results of a four-month inquiry into the current support arrangements for those affected by the contaminated blood scandal in the UK.
This report is on a confessedly opaque and little-known topic, and no doubt many readers will have never heard of the issue. But for those it affected, the contaminated blood scandal changed their lives forever, as well as the lives of their partners, carers and dependants. It refers to a period, from the 1970s through to the early-1990s, when thousands of people underwent treatment with NHS blood products now known to have been infected with HIV and/or Hepatitis C.
The scandal affected a great many individuals. Almost the entire community of people with haemophilia at the time, almost 5,000 people, became infected with one or both of these viruses, as they often required injections of blood factor concentrate to help heal wounds and stay alive. But a great many individuals without bleeding disorders were also infected through blood transfusions. This says nothing of those secondarily infected by their loved ones or of the countless carers, spouses and dependants who became embroiled in the tragedy – many having to sacrifice their careers investing considerable time in the care and support of those affected.
This scandal was not unique to Britain. But unlike in other countries, in the UK no public inquiry has ever been conducted, no prime minister has ever publicly apologised and what support there is has developed in a haphazard and piecemeal fashion, often in response to lobbying and litigation by campaigners.
Ever since the first support for HIV infectees gradually emerged in 1987-1993, what financial support government has given has been delivered at arm’s length, through external entities solely funded by the Department of Health (DH). Following extensions to support in 2003, 2009 and 2011, we are now left with a complex system: five different DH-funded organisations – two private companies; and three registered charities – each of which provide different kinds of assistance to different groups of beneficiaries.
For many of those affected, this just doesn’t cut it. Many have consistently approached the us saying they are still deeply dissatisfied with the lot they get. So in September, the APPG decided to initiate an inquiry. With the generous help of YouGov and the Haemophilia Society, we distributed a survey to all recipients of trust-based support asking them their views on the current support arrangements. Today, we publish the results of this four-month inquiry.
This is the most comprehensive appraisal of this support which has ever been attempted. Almost 1,000 people affected gave evidence to the inquiry. Our findings are too numerous to set out in detail, but if one unifying theme runs throughout the 100-page report, it is this: those affected feel that they have been deprived of their dignity. The whole system of support, as it currently fashioned, denies them the independence and autonomy they would have enjoyed had they never been infected. This is the crux of the problem.
Those affected are entitled to various kinds of support, but the process of accessing it is often fraught with difficulties. People are constantly asked for various proofs which – in the minds of one respondent to our survey – made the whole system feel like “the worst form of modern-day begging”.
In order to get anything from any kind of trust, you must prove, in the first instance, that you were infected with the relevant virus and provide evidence that you underwent treatment with NHS blood products during the relevant time period. A great deal of claimants for Hepatitis C support cannot get it, for the simple reason that the NHS has lost record of their having undergone treatment – a failing completely beyond their control.
Even if you cross this hurdle, you face another challenge: to access many discretionary and means-tested payments, you then have to satisfy the trusts that you are at a sufficient level of “need”. As well as providing proof of income, this often means providing a statement explaining how one would “benefit” from the assistance, and even sometimes accepting an inspection of their property by trust staff. “There is a recurrent sense”, one respondent observed, “that the organisations involved are there to police the support rather than deliver it.” Some of the people registered with the trusts are in a state of poverty and want things as basic as vouchers to pay for food or white goods. Some have been reduced to tears by the onerous, painstaking and disempowering process of applying for assistance, which often ends in a rejection.
But all this assumes one even knows what support is available. It is clear from our inquiry that the trusts and the Department of Health have palpably failed to communicate to those affected what assistance is available to them, and how to apply for it. Many Hepatitis C infectees are unidentified and have not yet come forward to access trust-based support, doubtless unaware of the actual cause of their infection. Even those who have accessed the trusts are often not told about what support is available to them: they are never given, in an easy-to-access format, any document setting out precisely what they can get, and how they can get it. They are, in the words of one respondent, “left in the dark”. Payments people in poverty are entitled to, for example, are not always claimed because nobody ever tells them they can be.
These are considerable issues indeed. But even if we deal with this issue and, amongst other things, make sure that the help people can get is properly-communicated to them – as we have recommended in our Report – this still leaves one fundamental issue. The whole package of support people are entitled to is just not sufficient to meet their needs.
Successive governments have only ever expanded support in a haphazard and reactive way, and there has never been a holistic, independent and objective assessment of what support is necessary to meet their needs. Most of those with Hepatitis C, for example – those in “stage 1”, or chronic, Hepatitis C – do not get any ongoing payments whatsoever on the dubious grounds that they are not in a state of ongoing need. Neither are the widows/widowers of Hepatitis C infectees – even though the widows of HIV infectees are, despite both surely having sacrificed similar amounts to support their partners.
This system, in sum, desperately needs overhauling. Among other things, widows and those with stage 1 Hepatitis C deserve the dignity of an ongoing payments system that meets their needs; all beneficiaries deserve the dignity of an independent assessment of their needs which accounts for the additional costs of living with HIV and Hepatitis C; and those currently jumping through hoops to access payments deserve a better, more dignified way of applying for support. And most of all, they deserve the dignity of a public apology from the prime minister. Our feelings are summed up best by a Hepatitis C infectee quoted at the head of our inquiry report:
You can’t give us back our health. But you can give us back our dignity. This tortured road has been too long for many of us. But for the rest of us, please let this be the final road to closure.
Our report does not set out all that is necessary to set things right. But our hope, after all that has been done to those affected, is that in conjunction with other moves taking place, we will soon arrive at a settlement which finally enables them 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.
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