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.
Historic 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.
Anything other than a win for Labour would have been a humiliation in this contest.
It wasn’t any old local by-election – this was a contest where Labour knew it could act as a mini barometer of Sir Keir Starmer’s recent U-turn on winter fuel payments and become a test of how popular the politics of Nigel Farage are in Scotland.
Labour are power hungry and have, for a long time, set their sights on forming the next Scottish government.
The prime minister will this morning be breathing a sigh of relief after clinching this shock victory over the SNP and Reform UK.
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This contest on the outskirts of Glasgow came at a time where Labour had been firefighting and grappling with polling suggesting they had blown their chances of ousting the SNP from power in Edinburgh after almost 20 years.
The SNP had a spring in their step during this campaign after a chaotic couple of years.
First Minister and SNP leader John Swinney had apparently stemmed the bleeding after the infamous police fraud investigation, endless fallout over gender identity reforms, and last year’s general election where they were almost wiped out.
This result leaves them no further forward than 12 months ago with questions over the party’s strategy.
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SNP and Reform UK election billboard posters in Larkhall. Pic: PA
Reform UK is very much in the Scottish picture now, finishing a few hundred votes behind the nationalists.
This is a party led by a man who barely registered any support north of the border for many years. A remarkable transformation.
The surge in support has spooked many because they know fine well Nigel Farage is only just getting started.
One poll had Reform UK forming the next official opposition at Holyrood. After tonight, that might be a tall order but Mr Farage is shaking things up at the expense of the Conservatives.
The unpredictable nature of this contest may give us a taste of what is to come.
A single ticket-holder could win the biggest lottery prize the UK has ever seen if they match the right numbers in tonight’s EuroMillions draw.
The jackpot has rolled over to an estimated £208m, after Tuesday’s £199m draw – which also would have been a record-breaking amount – had no winners.
The winner would instantly become richer than Adele and Harry Styles, while also bagging the top spot on the National Lottery’s biggest wins list.
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Andy Carter, senior winners’ adviser at Allwyn, said: “We are now on the verge of potentially creating the biggest National Lottery winner this country has ever seen.”
The previous largest prize pot was won by an anonymous UK ticket-holder, who took home £195m on 19 July 2022.
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Just two months earlier, Joe and Jess Thwaite, from Gloucester, won £184,262,899 with a Lucky Dip ticket. At the time, Joe was a communications sales engineer, and Jess ran a hairdressing salon with her sister.
Mr Thwaite said he woke up at 5am as usual, and checked his phone to see an email saying, “Good news, you have won a prize”.
But he did not immediately wake his wife, choosing to let her sleep in.
“I saw how much and I didn’t know what to do,” Mr Thwaite said.
“I couldn’t go back to sleep, I didn’t want to wake Jess up, so I just laid there for what seemed like forever. I spent some time searching for property with no budget limit, which was a novelty!”
When his wife woke up, she assumed the National Lottery app was wrong.
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In February last year, Richard and Debbie Nuttall were revealed as the UK winners of a £61m EuroMillions jackpot – who at first thought they had only won £2.60.
The couple from Lancashire split the £123m prize with a winner in Spain.
This year’s biggest prize, of £83m went to a UK winner in January.
Scottish Labour’s Davy Russell has won the Hamilton, Larkhall and Stonehouse by-election.
Mr Russell took top spot with 8,559 votes. The SNP placed second with 7,957 votes, with Reform UK closely taking third with 7,088 votes.
The new MSP said he was “proud” to have been elected, adding: “I said in this campaign that I will put this community, our community first.
“I will work every single day to do that.”
The Scottish Labour team celebrating the win. Pic: PA
The by-election was called following the death of SNP MSP Christina McKelvie.
The Scottish government minister died in March at the age of 57, having last year taken medical leave to undergo treatment for secondary breast cancer.
South Lanarkshire councillor Katy Loudon had hoped to retain the Holyrood seat for the SNP, given her party’s heavy losses to Labour at last year’s UK general election.
First Minister John Swinney congratulated Mr Russell following the result.
In a post on X, the SNP leader said Ms Loudon had “fought a superb SNP campaign”.
He added: “We have made progress since the election last year but not enough. We still have work to do and we will do it.”
All eyes were also on Reform UK and whether it would enjoy a “tartan bounce” in light of the party’s recent slew of local election wins in England.
With Reform UK never having won an election in Scotland, party deputy leader Richard Tice said candidate Ross Lambie coming in third was a “massive boost for us”.
Reform UK deputy leader Richard Tice turned up to the count to support candidate Ross Lambie. Pic: PA
He added: “It’s a fantastic result, just a few hundred votes away from the SNP, nobody predicted that.
“I think that sets us up with excitement and momentum for the next 11 months into the Holyrood elections.”
Davy Russell celebrating with Scottish Labour leader Anas Sarwar and the party’s deputy leader Dame Jackie Baillie. Pic: PA
Mr Russell said the constituents had voted to “take a new direction” with his party.
He added: “Like the people here in Hamilton, Larkhall and Stonehouse, and right across Scotland, we all feel we have been let down by the SNP.
“They’ve broken our NHS, wasted our money, and after nearly two decades they don’t deserve another chance.”
Mr Sarwar and Mr Russell on the campaign trail. Pic: PA
Mr Russell said the community had also “sent a message” to Reform UK leader Nigel Farage “and his mob tonight”.
He added: “The poison of Reform isn’t us, it isn’t Scotland, and we don’t want your division here.
“Reform have no real answers to the issues we face, and they can’t beat the SNP here or replace them across Scotland.”
Mr Russell said his party was ready to “fix” the NHS and “end the SNP’s addiction to wasting your money”.
He added: “The road to a new direction for Scotland in 2026 – with Anas Sarwar as first minister and a Scottish Labour government – begins right here. So, let’s go and win it together.”
By-election Scottish Conservative candidate Richard Nelson (left) and Reform UK candidate Ross Lambie. Pic: PA
Ten candidates went head-to-head in the Holyrood by-election:
• Collette Bradley, Scottish Socialist Party – 278 votes
• Andy Brady, Scottish Family Party – 219 votes
• Ross Lambie, Reform UK – 7,088 votes
• Katy Loudon, Scottish National Party (SNP) – 7,957 votes
• Janice MacKay, UK Independence Party (UKIP) – 50 votes
• Ann McGuinness, Scottish Green Party – 695 votes
• Aisha Mir, Scottish Liberal Democrats – 533 votes
• Richard Nelson, Scottish Conservative and Unionist Party – 1,621 votes
• Davy Russell, Scottish Labour Party – 8,559 votes
• Marc Wilkinson, Independent – 109 votes
The votes were verified and manually counted at South Lanarkshire Council headquarters in Hamilton.
Dame Jackie got emotional after Mr Russell’s win. Pic: PA
Campaigning became heated in the run up to the by-election, with Reform UK accused of running a “racist” ad on Facebook against Scottish Labour leader Anas Sarwar.
Reform leader Mr Farage continued to double down, accusing his rival of “sectarian politics”.
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In response, the Scottish Labour MSP branded Mr Farage a “poisonous little man” and accused him of running a “campaign of dirt and smear”.
First Minister Mr Swinney had earlier warned it was a “two-horse race” between the SNP and Reform UK, urging voters to “defeat the gutter politics” of Mr Farage.
With less than a year to go before the Scottish parliament election, the result potentially offers a snapshot of how the political landscape north of the border could look in 2026.
Mr Sarwar said: “I think people need to change the script, because we’ve proven the pollsters wrong.
“We’ve proven the commentators wrong, we’ve proven the bookies wrong. We’ve proven John Swinney wrong and so many others wrong too.”
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