The All-Party Parliamentary Group (APPG) on Haemophilia and Contaminated Blood today launch a report on improving life for people infected in the NHS contaminated blood scandal.
The report is based on the results of a four-month Inquiry into the quality and sufficiency of the Government support for people infected with HIV and Hepatitis C from NHS-supplied contaminated blood products from the 1970s through to the early 1990s. It can be downloaded from the Haemophilia Society website.
Tomorrow (Thursday 15 January), there will be a Backbench Business Debate on the issue in the House of Commons.
The most comprehensive appraisal to date of the current system of support, it spans over 100 pages and is informed by evidence gathered from nearly 1,000 people infected with the virus, and their families, conducted with the help of YouGov and the Haemophilia Society. The report details considerable issues with the support system and recommends the Government make major changes to help finally achieve closure for those affected.
Thousands of individuals underwent treatment with NHS blood products are now known to have been contaminated. Successive Governments have gradually put in place a patchwork of financial support administered at arm's length through "five trusts": two private companies and three registered charities, solely funded by the Government. But many of those affected are still deeply dissatisfied with the level of assistance they receive, and the way it is administered.
Amongst other points, the APPG report highlights that:
For many beneficiaries, support is not sufficient to lift them out of poverty. At present, the widows/widowers of Hepatitis C infectees receive no ongoing financial support whatsoever. The majority of people with Hepatitis C namely, those with chronic ("Stage 1") Hepatitis C also receive no ongoing payments.
People can apply for discretionary payments for all manner of items through the three charities. But many find the process of having to provide evidence of "need" for this help deeply frustrating and onerous they feel like they are "begging."
Registrants report being left completely in the dark about what discretionary support is available to them. This has meant some people have not received payments they were entitled to. Many more people with Hepatitis C are not even aware of the trusts' existence, with considerable issues of low take-up.
Many people with Hepatitis C are also unable to obtain payments from their trusts because the NHS has lost their hospital records, or because the trust has denied they are at the sufficient "stage" of Hepatitis C infection to warrant support even though their own NHS hepatologists have insisted they are.
Successive Governments have expanded support haphazardly, with no attempt to assess holistically what precisely people need. Consequently financial payments are set at an arbitrary level and do not account for the additional costs of living with HIV or Hepatitis C; and the three charities are not properly-funded year-on-year in line with the needs or numbers of their beneficiaries.
The report recommends that:
The Government should second a public health doctor to the five trusts to finally carry out an independent assessment of the needs of beneficiaries. Government funding should be set at the level required to meet these needs.
Payments to contaminated blood infectees should lift them above the poverty line, and should account for the number of dependants they have and the effects of the viruses.
Those who contracted Stage 1 Hepatitis C from contaminated blood, and their widows/widowers, should no longer be denied the ongoing financial support that other categories of infectees have received.
Nobody should be left in the dark: they should be told precisely what support is available to them. Those facing difficulties to provide proof they were infected should also be able to get help with their applications.
There should be arrangements to promote a better working relationships between the trusts and beneficiaries, including infectee representation on the trusts, an external form of appeal for decisions over discretionary support and more stable funding for the charities.
There should be a public apology from the Prime Minister for the scandal.
It is thought that this report, in tandem with other events with the Rt. Hon Alistair Burt MP in ongoing discussions with 10 Downing Street about a possible further settlement; and a statutory Inquiry into the history of the scandal in Scotland, the Penrose Inquiry, due to report imminently may lead to a further settlement for those affected by the scandal, which it is hoped will finally help achieve closure.
Co-Chair of the APPG, Diana Johnson MP (Lab), said: "This report is the product of a four month Inquiry into the whole system of support for those affected by the tragedy.
The most comprehensive assessment of this system to date, it wouldn't have been possible without the generous help of YouGov, the Haemophilia Society and, most importantly, all the people who took the time to fill in our survey and give evidence.
"The response to our appeal for information was phenomenal. Some 963 people gave detailed, harrowing and at times deeply moving accounts setting out all the problems with the support they're given. Amongst other things, we have received evidence from people in poverty saying they have been reduced to tears having to beg to the charities just to get vouchers for basic foodstuffs and white goods. And we have heard from people in 'Stage 1' Hepatitis C clearly in a state of ongoing need, with their working lives heavily disrupted by the condition have expressed their frustration at having received no ongoing payments whatsoever.
"The accounts they have given have convinced my colleagues in the APPG and I that changes are desperately needed to help finally achieve closure. Although this report will not go the whole way towards arriving at this closure and nothing can compensate them for their past losses, this report contains detailed recommendations on practical ways in which the lives of those infected, their families and carers can be improved and how they can finally achieve something like the justice that they have been denied over the past 30 years.
"It will help them live the rest of their lives in dignity. They are owed much more than an apology."
Liz Carroll, Chief Executive of the Haemophilia Society, said: "The Haemophilia Society speak to families affected by the contaminated blood scandal on a daily basis.
Many are living in poverty, unable to pay everyday bills. As well as struggling to manage the complex health needs a diagnosis of Hepatitis C and HIV bring on top of a diagnosis of haemophilia or other bleeding disorder, many are unsure of the process to apply for financial support from the Trusts, or find it too distressing to complete.
"We have heard from people who have received vouchers, rather than money, to pay for household items by stating the name of their charity on the vouchers, they have been humiliated, and exposed people's HIV diagnosis to shop staff. Others live in damp conditions due to household repairs waiting to be funded going back several years, as they don't feel able to provide the level of detail required to receive financial support from the Trust. Others are unable to prove they were infected by NHS treatment as their medical records are missing.
"This situation must change to allow everyone affected by the contaminated blood scandal to live with enough financial support, provided in a supportive environment, to have a good standard of living.
"NHS treatment devastated many lives. Now is the time to right this wrong and enable them to live with dignity."
Co-Chair of the APPG on Haemophilia and Contaminated Blood, Jason McCartney MP (Con), said: "The APPG report highlights the breadth of problems faced by beneficiaries when trying to gain financial support. The community affected by contaminated blood have complex health needs and must navigate a difficult and intrusive application process to get this financial support. Respondents of the survey frequently mentioned the heartbreak and strain caused by feeling as though they have to 'beg' for every bit of support that they receive.
"The report is the most in-depth look at the current financial support system in place for those affected by contaminated blood and it paints a mostly negative picture. The report will be published in tandem with the Right Honourable Alistair Burt MP's ongoing discussions with Number 10 about a financial settlement and the imminent publication of the Penrose Inquiry. The coalescence of these various events presents a unique opportunity to improve the lives of beneficiaries and their families who access the system of support. The affected community have waited years to achieve a measure of closure and if the report recommendations are enacted they will be able to access the financial support that they need without the current bureaucracy and intrusion."
