Contaminated blood scandal: 'Benefits-style' support scheme 'not fit for purpose' say campaigners
PUBLISHED: 08:45 23 May 2019 | UPDATED: 17:21 07 June 2019
Victims of the contaminated blood scandal spent decades criticising the bureaucratic and demeaning charitable trusts that were set up to provide them with financial support.
But, now the controversial Macfarlane, Skipton and Caxton Trusts have been wound down, a number of victims of the scandal have damned the replacement, the English Infected Blood Support Scheme (EIBSS).
The EIBSS has been criticised as "not fit for purpose", "worse than the trusts ever were" and a "begging bowl system" by some of the people who rely on it.
It comes after opposition political leaders including Labour's Jeremy Corbyn wrote to the Cabinet Office to demand the government offer compensation -not just support - before the end of the ongoing public inquiry.
Patients were given blood products to treat haemophilia during the 1970s and '80s that had been sourced from the USA, where it was routine to pay convicts and other high-risk individuals for blood.
Others, like long-time long-time Gospel Oak resident Phil Wellman, 73, received contaminated blood transfusions.
Phil said he had found the new system "misleading", and felt it was replicating "the worst problems of the benefits system".
He told the Ham&High: "We got rid of the trusts only to get landed with EIBSS. It's not as bad as the Caxton Trust - it's worse."
Phil, who now lives in France, explained that in the last six months he had encountered problems both with his monthly support payment and applications for grants to help fix draught issues at his home.
He spent six weeks without a payment as he did not receive the necessary forms, and was shocked by finding a £2,500 yearly ceiling for discretionary grants.
"It's not fit for purpose," he said.
The EIBSS said it would make sure documentation made this clearer in future.
Phil reiterated the need for compensation: "I just want to get compensation before I die. I can't lie - I don't have long left."
Mark Ward, a former flight attendant who was given products contaminated with HIV at the Royal Free, added that he had had his own "run-ins" with EIBSS.
Mark explained: "When we say about things being worse, you've got to remember the old trusts had learned about us individually, and our situations."
He said EIBSS had shown little understanding of the - tragically shrinking - community of HIV sufferers due to the scandal.
He told the Ham&High: "EIBSS have come in and picked up a model from 20 years ago.
"The new payments are downgrading HIV compared with hepatitis. There are only 240 of us alive now - our voices are getting lost. They say HIV is a manageable condition. Maybe it is now, but it wasn't 30 years ago. We were told we were dying, and we are."
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Mark said EIBSS forced people to apply to for other funding, for example for adapted vehicles, and only allowed people to turn to the system as a last resort.
He added: "They have made it so you have to go begging first."
At the Infected Blood Inquiry both Colette Wintle - who was a patient at the Royal Free given hep C - and former Crouch End resident Clair Walton, who contracted HIV after her late husband Bryan was given contaminated blood products for haemophilia, also slammed EIBSS.
Clair told the inquiry of her horror when EIBSS returned to using the previously abandoned term "infected intimates" for those who contracted HIV - like her - from a partner. She said: "EIBSS have actually taken it upon themselves to use that term again and I just don't know why."
She also echoed Mark's concerns about EIBSS' attitude towards HIV, telling the inquiry she had been stunned to hear sufferers weren't entitled to a funeral plan under EIBSS.
She added:"Their understanding of HIV and especially living with HIV for decades is very poor."
Meanwhile Colette criticised the lack of outright compensation.
Bruce Norval, a former Kilburn resident and a haemophiliac who was infected with hep C, receives higher support levels as he lives in Scotland, but he is intensely critical of EIBSS. He told us: "It's not just about money. The way the English scheme is laid out, it's like claiming benefits - the level of detail they ask from people.
"People have been victimised once by the state. These schemes are victimising them again."
A spokesperson for the EIBSS said it welcomed feedback, and had not been made aware of any criticism of terminology it uses.
They added: "As we are dealing with public funds, we have a responsibility to distribute these funds correctly which can include application forms."
Calls for full compensation grow
Political leaders including Jeremy Corbyn wrote to the Prime Minister on Sunday demanding she "heed the call for full compensation to be paid without further delay".
It follows criticism from groups including The Haemophilia Society, which said the government's upping of funding for the EIBSS by £36m a year was rushed out on the eve of the inquiry and left campaigners feeling disappointed, angry and had dashed hopes that their concerns would be addressed.
A Department of Health and Social Care spokesperson said: "We've always been clear that all those affected by this tragedy should be supported by a fair and transparent support scheme.
"We have continued to follow the Infected Blood Inquiry closely and have demonstrated we are listening by committing up to a further £30million to the scheme."
They also said they would be looking to discuss eliminating regional inequalities with devolved counterparts. They added the £30m increase would vastly reduce the means testing of benificiaries.
The Haemophilia Society welcomed the letter and said the current schemes were "failing".