Relatives of victims of the NHS infected blood scandal have delivered a letter to Downing Street saying “action is needed now” to set up a body to give them full compensation.
Campaigners shared harrowing stories of how their lives have been blighted after they handed over the letter on Monday calling for Prime Minister Rishi Sunak to expand the interim compensation scheme to cover more victims and their families.
The Infected Blood Inquiry was established in 2017 to examine how thousands of patients in the UK developed HIV and hepatitis C through contaminated blood products given in the 1970s and 1980s.
About 2,900 people died in what has been labelled the worst treatment disaster in the history of the NHS.
Inquiry chairman Sir Brian Langstaff has said an interim compensation scheme should be widened so more people – including orphaned children and parents who lost children – could be compensated.
Sir Brian said in April he was taking the unusual step of making the recommendation ahead of the publication of the full report into the scandal so that victims would not face any more delays.
Under the initial scheme, only victims themselves or bereaved partners can receive an interim payment of around £100,000.
The inquiry has recommended the Government establish an arm’s-length compensation body now, and definitely before the final report is made in autumn.
These payments are not just about compensation, they symbolise acknowledgement and they represent initial recognition of each life lost— Letter from relatives of infected blood scandal
The letter from relatives called for Sir Brian’s request to be acted on, saying: “This delay denies victims and their families any sense of tangible progress.
“Many continue to die without full redress, this cannot be right. The interim payment for deaths not yet recognised is critical.
“These payments are not just about compensation, they symbolise acknowledgement and they represent initial recognition of each life lost.”
Janine Jones, whose haemophiliac brother Marc Payton died in 2003 at the age of 41 after being infected with HIV and hepatitis C, was among the group handing in the letter.
Ms Jones, 58, of Bromsgrove, Worcestershire, said her brother was diagnosed with HIV in 1985 when he was 23 and told he had hepatitis C in 1990.
Their elderly parents, Ron and Val, had both died while waiting for justice.
She told the PA news agency: “In the last two years while the inquiry has been going on both our parents have died.
“They were both in their 80s and they died with no recognition at all for their son’s death.
“Because he wasn’t married or he didn’t have a partner when he died, there has been no compensation paid to him at all.”
She said of her parents: “They were devastated from his diagnosis anyway. Mum always blamed herself for giving him haemophilia because she was the carrier.
“It absolutely crucified them, they never got over it.
“My mum, the last three years of her life she had dementia and every time she saw me it was the first words out of her mouth: ‘Where’s Mark? I haven’t seen Mark’.
Ms Jones added: “I’ve been orphaned. I’ve lost my brother. I’ve lost my parents. On my brother’s deathbed I promised him I’d carry on fighting for him.”
When my dad died we just got no support. We left the hospital, we got nothing from anybody, nobody contacted us. Just left his five children without any support. Nobody came to us to give us any advice, no counselling— Eileen Burkert on her father's death
She said an arm’s-length compensation body would be more independent from Government.
“They haven’t done anything good for us over the last 40 years of campaigning to get something done, so we really don’t trust anything they’re saying,” Ms Jones added.
“Obviously an arm’s-length body will have to still answer to Government but we’d like it to be more independent.”
Eileen Burkert, 54, from Halifax, West Yorkshire, said her haemophiliac father Edward died in April 1992 after developing HIV and hepatitis C from contaminated blood products.
Ms Burkert said two uncles and three cousins, who also had the inherited bleeding disorder in which the blood does not clot properly, were infected from transfusions and died.
“We didn’t know that my dad had had HIV until the day he died,” she said.
“He was a single father of five – he was 54, the age I am now.
“When my dad died we just got no support. We left the hospital, we got nothing from anybody, nobody contacted us.
“Just left his five children without any support. Nobody came to us to give us any advice, no counselling.”
Ms Burkert added: “One of my younger brothers (Keith) took his own life eight years after my dad died and through talking to one of his key workers back in the day, I found out that he always feared that he may have got HIV.
“And we think that he took his life because he missed dad. I didn’t know how to console my brother because I was going through the same thing,” she said.
“It’s not just the impact on myself and my brothers and sisters, it literally contributed to my brother’s death because if you don’t have the support and the network around you, how can you deal with it… when your only parent has been taken by a disease like Aids, which was really, really stigmatised back in the day?”
“Right now I’m pretty angry because the first interim payment paid the infected, rightly so, and the windows and partners, rightly so, but why haven’t they recognised, so far, the deaths of people that have so far gone unrecognised?
“Like my dad was a single parent of five children – so why is my dad’s life worth less than anybody else’s?
“It is not the money; my dad’s life needs to be recognised,” Ms Burkert added.
