Infected blood scandal: Bereaved families say loved ones who died after being contaminated were being ‘used for research’
Bereaved families who lost loved ones in the contaminated blood scandal say they have seen evidence that proves their relatives were being “used for research” without their knowledge and despite clinicians knowing the risks.
Historical notes in medical records found by campaigners are said to show that some patients being treated for the blood clotting disorder haemophilia in the 1970s and 1980s were given blood plasma treatment which doctors knew might be contaminated and infect them with hepatitis.
Clinicians involved in the treatment have maintained they wanted to study the links between the haemophilia treatment Factor VIII and the risk of infection.
Jason Evans, director of the campaign group Factor 8, believes that instead of stopping treatment, clinicians lobbied to continue trials, even after identifying the association between hepatitis and the treatment.
He has found notes alluding to the research in his own father’s medical records.
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Mr Evans, whose father died in 1993 after being infected with both HIV and hepatitis C during the course of his treatment for haemophilia, said: “It is appalling that hundreds of people with haemophilia across the country were knowingly infected with lethal viruses under the guise of scientific research.
Neil King was co-infected with both HIV and hepatitis C while receiving treatment for haemophilia
“These secret experiments, conducted without consent, show individuals were treated as mere test subjects, not human beings.
“The fact that this could happen on such a scale, over such a long period of time, is almost incomprehensible.”
Documents – obtained through Freedom of Information requests and medical records provided by families – reveal a timeline of the trials, led by a senior medic who worked for the now defunct Public Health Laboratory Service, say campaigners.
Becka Pagliaro from Waterlooville, near Portsmouth, said she was “shocked” to find notes about the trials in her father’s patient notes.
Her father Neil King was co-infected with both HIV and hepatitis C while receiving treatment for haemophilia. He died in 1996 when he was 38 years old.
“When I got his medical records I saw he was part of this research which I know was something that he would not have agreed to, so that was done covertly,” Ms Pagliaro said.
“I was really shocked – I wondered first of all whether I had received someone else’s medical records because I could not believe what I was seeing.”
Janine Jones’ brother Mark Payton died when he was 41 after being co-infected with both hepatitis C and HIV
Janine Jones’ brother Mark Payton died when he was 41 after being co-infected with both hepatitis C and HIV.
“When I saw the research was on my brother’s records I thought: ‘What’s this?’ And after asking a few questions I didn’t get anywhere,” said the 59-year-old from Warwickshire.
“It was only the last few months that it really came to light – they were being used for research.”
Emma Frame, from South Shields, said that her father had never agreed to be part of studies but found multiple references to them in his medical records.
Ms Frame said: “I have all of his records which is where I came across these studies.
“There is no information other than this doctor’s name, a treatment and then a date. With my dad it was recorded several different times.
“It’s absolutely mind-blowing the information that is out there that has been hidden.”
Jeffrey Frame was co-infected with HIV and hepatitis C and died in 1991 when he was just 39.
Ms Frame said that in the mid 1990s she also discovered that the NHS had kept some of her father’s “samples”, which had not been discussed with the family.
“They still had actual physical samples of my dad who had died years previous,” she said.
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Tens of thousands of people were infected with contaminated blood through infected blood products or blood transfusions, largely between the 1970s and 1980s.
People were infected with hepatitis or HIV, and in some cases with both.
An estimated 3,000 people have died as a result, while those who survived have lived with life-long health implications.
Des Collins, senior partner of Collins Solicitors, which represents 1,500 victims and their families, said: “There is now overwhelming evidence that the NHS failed patients on a number of levels in the 70s and 80s and certainly in ways we find shocking and abhorrent.
“We are looking forward to Sir Brian Langstaff’s final Inquiry report in a few weeks’ time, which will lay out the wrongs perpetrated in comprehensive fashion.
“Not only will this reinforce the case for compensating victims and their families, but importantly will shine a light on the lessons to be learned so that mistakes of the past are never repeated again.”
The Infected Blood Inquiry will publish its final report on the scandal on 20 May.
The UK lacks a national plan to defend itself from attack and is moving at a “glacial” pace to fix the problem despite threats from Russia and China, a report by MPs has warned.
With the whole country needing to understand what it means to be ready for war, the Defence Select Committee also said it had seen no sign of a promised “national conversation on defence and security” that was launched by Sir Keir Starmer in June.
Sky News and other journalists were even blocked on Monday from interviewing sailors aboard HMS Prince of Wales, the Royal Navy’s flagship aircraft carrier, in direct contrast to the prime minister’s stated aim of greater engagement.
Royal Navy aircraft carrier HMS Prince of Wales. File pic: AP
Public needs to know ‘what to expect’ from war
“We have repeatedly heard concerns about the UK’s ability to defend itself from attack,” said Labour MP Tan Dhesi, chair of the committee.
“Government must be willing to grasp the nettle and prioritise homeland defence and resilience.
“In achieving this, government cannot shy away from direct engagement with the public.
“Wars aren’t won just by generals, but by the whole of the population getting behind the Armed Forces and playing our part.
“There needs to be a co-ordinated effort to communicate with the public on the level of threat we face and what to expect in the event of conflict.”
The Royal Navy tracked a Russian submarine in UK waters last month. Pic: Royal Navy/MOD
‘The Wargame’ made real?
The findings of the report support a podcast series by Sky News and Tortoise Media called The Wargame – released in June.
It simulated a Russian attack on the UK and played out what the impact might be for the country in the absence of a credible, resourced and rehearsed national defence plan – something Britain maintained rigorously during the Cold War.
Sky News first revealed in April 2024 that the previous government no longer had such a plan, though work was under way to develop one.
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Flagship aircraft carrier to be placed under NATO command
Report’s assessment of war-readiness
The Defence Select Committee report – based on a nearly year-long inquiry – found: “The UK lacks a plan for defending the homeland and overseas territories with little progress on the Home Defence Programme.”
It said this meant the government was failing to meet a fundamental commitment to the NATO alliance – the Article 3 requirement to maintain the “capacity to resist armed attack”.
The report quoted Luke Pollard, a defence minister, acknowledging that “we have been very clear that we are not satisfied with Article 3 in the UK”.
Britain’s new Ajax fighting vehicle, which arrived overdue and at great financial cost. Pic: PA
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Yet the MPs’ report added: “Despite this recognition from government… measures to remediate seem to be moving at a glacial pace.”
It said: “Cross-government working on homeland defence and resilience is nowhere near where it needs to be. The government has said repeatedly that we are in an era of new threat, yet decision-making is slow and opaque.”
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The rebuke from the MPs was published as John Healey, the defence secretary, prepares to announce that 13 sites across the UK have been identified as possible locations for at least six new weapons factories.
“This is a new era of threat,” he will say at a speech in Westminster later.
“We are making defence an engine for growth, unambiguously backing British jobs and British skills as we make the UK better ready to fight and better able to deter future conflicts.
“This is the path that delivers national and economic security.”
Industry will be invited to submit proposals to produce ammunition and explosives, with the Ministry of Defence saying it hopes work on the first factory will begin next year.
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