Diana Johnson MP is Co-Chair of the All-Party Parliamentary Group on Haemophilia & Contaminated Blood. Today it publishes a report into the current support for individuals affected by the contaminated blood scandal.
From the 1970s through to the early-1990s, thousands of people underwent treatment with NHS-supplied blood products. Many of these products are now known to have been contaminated with HIV and/or Hepatitis C. Although this scandal only affected a small proportion of the population, it infected almost the entire community of people with haemophilia; and for everyone who was affected by these conditions, their lives were changed forever.
The tragic psychological and financial damage caused by these conditions is considerable, and stretches across generations. Primary earners’ careers were ruined by infection. Many affected found themselves completely unable to work, others were forced to cut down their hours and never enjoyed the career progression they would have had if the viruses never affected them. The scandal also spilled over to the carers, partners and dependants of those affected, who often had to sacrifice their own careers to support their loved ones. Should their partners die before they do, they find themselves unable to support themselves, having lost the skills necessary to get by in today’s labour market.
Ideally, the British Government would, at the time the extent of this tragedy became clear, have issued a full and public apology for the scandal and given all those affected proper financial recompense. This did happen in other countries, such as Ireland, where closure was achieved rather quickly. Sadly, the same did not happen in the UK. Successive Governments, of all parties, proved reluctant to extend support to those affected.
What support which has been given was not administered directly to those affected. So as to avoid the implication of legal responsibility, they decided to administer it at arm’s length, through external private companies and charities solely funded by the Department of Health. Today, we are left with “five trusts” – two private companies, and three registered charities – which provide various kinds of assistance to those affected.
Those affected are not at all satisfied with the lot they are given under this complex myriad of support, and have consistently lobbied the APPG to ask for more. That is why, in September, we initiated an Inquiry into the support system. . With the help of a survey of all those affected by the tragedy, produced with the generous help of YouGov and the Haemophilia Society, we have carried out the most comprehensive appraisal to date of the trust-based system of provision.
Our findings our wide-ranging. But most particularly, we highlight that:
• Many beneficiaries are in 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 recommendations we make in light of these findings are comprehensive. Amongst other things, we recommend that the Government second a public health doctor to the five trusts to ascertain the needs of beneficiaries, and set Government funding at the level commensurate with the need. This also means extending some form of ongoing payments to those with Stage 1 Hepatitis C, and giving the widows of Hepatitis C infectees entitlement to the same payments as those of HIV infectees.
The trust system should also be reformed, and nobody should be left in the dark: they should be told precisely what support is available to them, and those facing difficulties providing proof they were infected should also be able to get help with their applications. There should also 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. To round this off, we think there should be a public apology from the Prime Minister for the scandal.
Many of the almost 1000 people affected who responded to our appeal for information sent in written accounts. They were often detailed, harrowing and at times deeply moving. Their stories have convinced my colleagues in the APPG and I that some changes are desperately needed to help finally achieve closure. In conjunction with other moves currently in motion, we hope that it will all add up to something approaching a full and final settlement which will finally help those affected 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.