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 including Janine Jones from Bromsgrove shared harrowing stories of how their lives have been blighted after they handed over the letter on Monday (July 24) calling for Prime Minister Rishi Sunak to expand the interim compensation scheme to cover more victims and their families.
Janine’s haemophiliac brother Marc Payton died in 2003 at the age of 41 after being infected with HIV and hepatitis C.
She 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.
Janine, aged 58, 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.”
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 before the final report is made in autumn.
The letter from relatives called for Sir Brian’s request to be acted on, says: “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.”
Janine 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’.
Janine 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.”
She said an arm’s-length compensation body would be more independent from the 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,” Janine added.
“Obviously an arm’s-length body will have to still answer to government but we’d like it to be more independent.”
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