The government announced on Tuesday an extra £30million to improve the contaminated blood support schemes – but while the additional finance is welcome, this announcement doesn’t go far enough.
This week, the Infected Blood Inquiry began taking oral evidence to get the truth of how 5,000 people with haemophilia and other bleeding disorders came to be treated with contaminated blood products.
Witnesses will be providing harrowing testimony of how they or their family members were infected with HIV, hepatitis C and exposed to other viruses and contaminants when taking their treatment for their bleeding disorder.
This is, however, not just an historic injustice. Those still alive are living with liver damage and other impacts from their hepatitis C or the effects of long-term HIV infection, much of it before there was effective treatment. Many lost their jobs because of their infections or due to stigma while others had education interrupted or cut short.
The families of the over 3,000 people who have since died including 1,000 of the 1,243 infected with HIV also continue to struggle. They haven’t just had to live with the grief of losing a partner, child, parent or sibling but many gave up careers to care for their loved ones. Others have lived with psychological trauma and been unable to live their lives without proper closure.
Today’s announcement increases the budget available to the England Infected Blood Support Scheme (EIBSS) provided by the NHS BSA but it does not provide the full support that people need. It also falls short of the recommendations put forward by a group of 12 campaigners representing a wide range of infected and affected beneficiaries in January this year.
The campaigners made a simple request: that the government take steps to alleviate hardship so that all people affected by contaminated blood and blood products could live rather than just exist during the inquiry.
People wanted certainty, however, this announcement provides only one year of increased funding leaving people to worry once again about how they make ends meet next year. With the inquiry expected to last at least two more years this is not the reassurance people deserve.
Their first request was that they shouldn’t have to rely on means-tested payments and grants, they no longer wanted to have to go cap in hand begging to support. Instead, Tuesday’s announcement does not provide any regular payments to bereaved partners who will still need to apply for benefits and then seek income top-ups from EIBSS. Other support for infected beneficiaries will continue to be discretionary requiring complex forms and annual reassessments.
Their second request was the removal of the variations across the UK which mean many people in Scotland are better supported than those who happen to have been registered at a haemophilia centre in another part of the UK. Instead, Tuesday’s announcement applies only to England meaning that support for people in Wales and Northern Ireland is not improved and still people will see differences in support based on the part of the UK they lived in in the 80s.
The contaminated blood scandal took place under the single NHS pre-devolution and the Prime Minister should be taking a lead in ensuring the welfare of all people affected across the UK.
Their third request was no bereaved partner, parent or carer should suffer financial hardship. Instead, while some partners will now be able to receive increased payments or ongoing support for the first time there are no plans to provide support to bereaved parents or carers.
Their request notes that some people have never been supported at all, such as people who lost parents, people who were infected with viruses other than hep C and HIV and that people who are both bereaved and themselves infected have never been recognised as such. But this announcement doesn’t address this unmet need.
Taken together, adding that no one should be worse off and people living with viruses should not receive less than people affected, this implies that all infected beneficiaries should be at least guaranteed an income in line with the 2017 UK median disposable income of £27,300. It is very unlikely that this will be the case for most beneficiaries.
Tuesday’s announcement is a sign that the government is beginning to listen, but it does not address the key concerns about the support schemes.
As the eyes of the world focus on the Infected Blood Inquiry this week, we do not believe it is right or fair that these inequalities in support for our affected community still exist and we urge the government to work with The Society and the campaign groups, to ensure it achieves the objectives set out when meeting back in January.
Jefferson Courtney is Head of Policy and Programmes, The Haemophilia Society