‘Dealing with these trusts is worse than living with HIV’: NHS contaminated blood victim speaks out

In the second of our series on the NHS blood scandal that wrecked lives, Emma Youle meets the victims fighting for fair funding and support - who say dealing with the trusts set up to support them is almost ‘worse than living with HIV’

Victims of one of the worst health scandals in the nation’s history have told of the “mental anguish” of dealing with trusts set up to support them - saying it is almost as bad as living with killer viruses like HIV and hepatitis C.

Thousands who were infected with viruses through contaminated blood and blood products supplied by the NHS until 1991 say they continue to be failed by the government decades on.

Campaigners say there is no adequate system of compensation for those living with debilitating health conditions contracted from tainted blood. They claim money is handed out at the whim of charity trusts criticised as “unfit for purpose”. Meanwhile many are left in abject poverty.

Clair Walton, who was infected with HIV by her husband after he was given contaminated blood, said: “Through no fault of my own I’ve got HIV and the very people that have been put in place to help us have been completely rotten to us. We’re treated like benefits cheats.”

The British government continued to import blood products, taken from high risk donors such as drug addicts and prisoners, from America even after being warned they carried potentially deadly viruses, yet patients were not told of the risks. Many went on to be infected with HIV and hep C.

Some 7,000 people were given contaminated blood products and more than 2,000 have died. Thousands with the blood clotting disorder haemophilia were infected but others were exposed through routine blood transfusions.

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Decades later, many have never received payments from the government and others only meagre amounts in the tens of thousands. These are only available through a complicated system of charity trusts.

Clair, 53, had been married to her husband Bryan for just two years in 1985 when he was told he was HIV positive. He was a haemophiliac and had also been infected with hep C, although he did not know this before he died, aged 34.

“I was told I should be tested and subsequently I was infected through him,” said Clair. “It was pretty horrific. I think only people who lived in that time will really understand how horrible it was.”

She was widowed a few years later after nursing Bryan through the ravages of Aids. But the couple were left with a “third person” in the marriage when the MacFarlane Trust, set up by the government in 1989 to support haemophiliacs infected with HIV, loaned them money by taking a share of their property rather than giving a grant.

More than 20 years later Clair owes a significant sum of money plus tens of thousands of pounds interest to the trust. She lives on a small allowance of £14,000 a year and has no way to repay the debt.

“My biggest problem, and this has caused me more problems than HIV ever did, is the MacFarlane Trust,” she said. “These people are unashamedly dreadful towards us.”

The trust refused to meet her to discuss cancelling the debt and terminated correspondence with her MP when he took up her case.

“The only thing I did was make love to my husband,” said Clair, who lived in Crouch End until ill-health forced her to return to Warwickshire. “I would have thought someone would say ‘We’re really sorry’. But we are treated so abysmally by the very charity that was set up to help us.”

Before his death Bryan had received just £50,000 in compensation for being infected with the virus that stole his life.

The government has made payments, of between roughly and £20,000 and £50,000, to people infected with HIV from tainted blood and those still alive continue to receive a small monthly income.

Yet the system becomes more complicated for those with hep C.

Only those at a certain stage of liver damage qualify for money from the Skipton Fund, another charity set up by the government in 2004.

Other hep C sufferers are forced to apply on a case-by-case basis to the Caxton Foundation, which was established in 2011.

UCL Hospital patient Maria Fletcher, 46, was born with the blood condition beta thalassemia.

She needed blood transfusions every three weeks and was told she had been infected with hep C when she was 21. The virus has caused severe liver damage and diabetes.

Despite this Maria went on to have a successful career as a beauty consultant for a large cosmetics company before her declining health prevented her from working.

She and her husband are now trying for a baby but need IVF treatment because of the affects of hep C. She received a lump sum of £45,000 from the Skipton Fund and gets about £1,200 a month. She is unable to afford the fertility treatment.

“I’m trying to get funding from the Caxton Foundation at the moment and I don’t think I will because they won’t part with any money,” said Maria. “You have to be on death’s door or financially in a bad, bad way.

“The government and the NHS are to blame. They think by giving you a thousand or so a month you’re alright. How much do they earn? It’s not about money, it’s about the pain they’ve put us through.”

Heating and plumbing engineer Phil Wellman, 69, was given two pints of blood following a car crash in the 1970s and was infected with hep C.

In common with many with the virus he suffers from severe fatigue and brain fog. He was forced to sell his flat in Belsize Gardens, Belsize Park, and move to a cheaper property in France.

He now lives in “complete poverty” without a regular income. He sleeps on a battered old sofa so as not to disturb his wife, cannot afford glasses or a cooker, and is often unsure where his next meal will come from.

Phil was paid £20,000 by the Skipton Fund about seven years ago and has a file seven inches thick of applications to the Caxton Foundation.

Yet he says, far from treating him with compassion, the foundation has issued solicitor’s letters warning him not to contact the charity in person because of his “aggressive behaviour” to staff.

“They’re a power unto themselves,” he said. “You can’t get near them with lawyers, believe me lots of people have tried. It’s disgusting the way they’re treating us.

“Because of hepatitis C, and what the Caxton and the government have done to us, we’re completely done in. We should be compensated. We should have a pension.”

Campaigners are calling for the abolition of the trusts and a lump sum payment to all affected by the contaminated blood scandal, as well as regular pensions.

Concerns about the operation of the trusts have been raised by MPs in Parliament and an all-party parliamentary group was held to look at funding provision.

Earlier this year David Cameron pledged an extra £25million for the next 12 months to be spent on setting up a better payment and support system, but campaigners are still waiting for this pledge to be realised.

A Department of Health spokesman said: “We do understand that some people affected by this tragedy are unhappy with the current system of support. That is why we have said we will consult on reforms to the current system and have put aside £25 million to ease transition to a reformed system of payments for affected individuals.”

The MacFarlane Trust and the Caxton Foundation did not respond to the Ham&High’s request for comment.

See next week’s Ham&High - The campaign for justice and the government’s response