Plasma dismay
Infected blood scandal, Issue 1687 LUKE O’Shea-Phillips was just three when he was used as a guinea pig to test whether heat treatment would clean deadly infections from US imported blood products. It failed in his batch, but it was another decade before he learned that he had contracted hepatitis as a result.

“I try not to let it define me, but it has affected everything,” he says. “I had to go through horrendous treatment in my twenties and the enduring psychological impact is beyond anything that the powers-that-be recognise.”

Luke has mild haemophilia, a blood-clotting disorder, which should not have needed any drastic intervention. However, doctors at the hospital where he was treated for a small cut to his gum saw in him the perfect “clean petri dish”, as he puts it, upon which to test a new product. There is no evidence of consent ever being sought.

His infusion of Factor VIII, made from American commercial plasma pooled from thousands of donors, contained dangerously elevated levels of liver enzymes. It had failed Germany’s screening requirements and gave hepatitis to all four UK recipients.

Trial and error
The trial research was published in 1987 and cited in many international papers, but Luke and his mother were unaware of his infection until he was 14, a discovery he said changed everything.

“I could also have contracted HIV,” he says. “The horror of my condition, fear of passing it on, impact on my health, career and family, alongside the fury at the injustice, have consumed me and affected every part of my life.” He now feels unable to work due to mental health issues.

Around 6,000 haemophiliacs were given imported blood-clotting agents concentrated from pools of up to 60,000 donors, including addicts and prisoners who were paid, in the 1970s and 1980s. They had a near 100 percent chance of being infected. More than 20,000 transfusion patients were also infected via unscreened blood donated in the UK.

Broken mechanism
Luke had hoped the Infected Blood Inquiry, in which he gave evidence, would show some recognition of his heinous route to infection after decades of cover-ups. He was also relying on compensation to reflect that and replace his lost income, having already been accepted on to the Special Category Mechanism (SCM) under an earlier scheme which recognised the long-term impact on daily life.

However, SCM was not written into 2024 legislation which set up the current Infected Blood Compensation Authority (IBCA), leaving Luke and others to go through the scheme’s severity assessment to set their award level, a rigid and complex formula set up in secret that has caused confusion and upset (see last Eye).

IBCA assessed Luke at level 2, chronic hepatitis C, giving him £3,000 a month and a £540,000 lump sum. Had he been assessed at level 3, he could have opted for a lump sum of £1.57m, which he said would have left him and his family secure and able to make choices.

“Instead, I have to wait for monthly handouts which only just cover my London mortgage and could be stopped at any time,” he says.

Psychological damage
He feels aggrieved that level 2 puts him on a par with people infected in their forties and fifties by blood transfusions.

“It’s awful for everyone but they lived a life before they were infected – and that blood was given to save their lives without anyone knowing the damage. My award does not take into account the psychological harm of being intentionally infected with blood products I did not even need, or an entire lifetime of reduced and lost earnings.”

Luke has been combing through thousands of pages of documents and sending freedom of information requests to ask the Cabinet Office if it even considered the exacerbating circumstances around those infected during trials in 1985 when the dangers were known.

Closed doors
“The fundamental problem that is causing so much distress,” says Kate Burt, chief executive of the Haemophilia Society, “is that the expert group who designed the compensation scheme did so in 2024 in secret without crucial experts, including haemophilia clinicians.”

She says the government refused to engage with those affected until the inquiry was published, and the “deeply flawed” compensation scheme was announced the following day with no consultation.

“This refusal to engage whilst designing the scheme behind closed doors is the root of so many of the issues that campaign groups, charities and individuals impacted by contaminated blood are now fighting to get put right.”