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.
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.
“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.”
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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.
“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.
He called emergency services but soon “water started seeping in”.
“I thought I’m going to have to get out, I’m going to have to smash a window,” Mr Randles said.
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He wound down his and his son’s windows, and climbed out before rescuing his son.
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‘Devastating’ flooding in Wales
“The water was chest high, I held him up as high as I could to keep him out of the water.”
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“It wasn’t raining so heavily, I’ve driven in much worse rain,” he added.
Mr Randles, a self-employed roofer who relies on the car for work, said he remained calm during the ordeal and was helped by the fact that Luca was asleep during the rescue.
Mr Randles’ partner Paige Newsome – who was not in the car at the time – said the incident was “really scary”.
“To think I could have actually lost them both – I don’t know how I would’ve lived,” she said.
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The road has been flooding for at least two decades, the couple said.
“What is it going to take for the council to sort it out? Does a fatal incident have to happen? It’s been going on for years,” Ms Newsome said.
The couple are worried about affording another car as well as Christmas celebrations.
But Mr Randles said: “I’m grateful that we got out safely and that we can spend his first birthday and Christmas as a family.”
Storm Bert has brought more than 80% of November’s average monthly rainfall in less than 48 hours to some parts, the Met Office said.
Around 300 flood warnings and alerts are in place in England, with another 100 in Wales and nine in Scotland, as heavy rain and thawing snow bring more disruption across the UK.
A major incident was declared by Rhondda Cynon Taf County Borough Council in South Wales after homes and cars were submerged in water.
‘It is devastating’
Gareth Davies, who owns a garage in Pontypridd, a town in Rhondda Cynon Taf, told Sky’s Dan Whitehead that flooding has put his small business “back to square one”.
As the River Taff burst its banks, the majority of the vehicles in Mr Davis’s garage were so damaged he says they will have to be written off.
“I am gutted,” he said, standing in his flooded garage, most of which is also covered in oil after a drum tipped over.
“How long is it going to take to sort out? I am going to lose money either way. I can’t work on people’s cars when I am trying to sort all of this out.
“It is devastating.”
Mr Davies said he has never had an issue with water coming into his garage until now.
Pointing to one car that had been hoisted into the air before water reached it, he said: “Lucky enough, I did come in this morning just to get that car up in the air.
“I don’t know what to say, I have been working flat out for two years to build this up and something like this happens, and it just squashes it all.
“This has put me back to square one.”
At least two to three hundred properties in South Wales have been affected by flooding, Councillor Andrew Morgan, leader of Rhondda Cynon Taf Borough Council, said on Sunday.
He said the affected buildings are a mixture of residential and commercial properties, after the weather turned out to be worse than what was forecast.
The Labour MP behind the assisted dying bill said she has “no doubts” about its safeguards after a minister warned it would lead to a “slippery slope” of “death on demand”.
In a strongly worded intervention ahead of Friday’s House of Commons vote, Ms Mahmood said the state should “never offer death as a service”.
She said she was “profoundly concerned” by the legislation, not just for religious reasons, which she has previously expressed, but because it could create a “slippery slope towards death on demand”.
Asked about the criticism, Ms Leadbeater said: “I have got a huge amount of respect for Shabana. She’s a very good colleague and a good friend.
“In terms of the concept of a slippery slope, the title of the bill is very, very clear.
“It is called the Terminally Ill Adults (End of Life) Bill. It cannot include anybody other than people who are terminally ill, with a number of months of their life left to live. It very clearly states that the bill will not cover anybody else other than people in that category.”
She wants people who are in immense pain to be given a choice to end their lives, and has included a provision in the legislation to make coercion a criminal offence.
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The matter will be debated for the first time in almost 10 years on Friday, with MPs given a free vote, meaning they can side with their conscience and not party lines.
As a result, the government is meant to remain neutral, so the intervention of cabinet ministers has provoked some criticismfrom within party ranks.
Labour peer Charlie Falconer told Sky News Ms Mahmood’s remarks were “completely wrong” and suggested she was seeking to impose her religious beliefs on other people.
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Kevin Hollinrake says he will be in favour of the assisted dying bill
Asked about his comments, Ms Leadbeater said it was important to remain “respectful and compassionate throughout the debate” and “for the main part, that has been the case”.
She added: “The point about religion does come into this debate, we have to be honest about that. There are people who would never support a change in the law because of their religious beliefs.”
Ms Leadbeater went on to say she had “no doubts whatsoever” about the bill, which has also been objected by the likes of Health Secretary Wes Streeting and former Labour prime minister Gordon Brown.
Asked if she has ever worried about people who don’t want to die taking their own lives because of the legislation, Ms Leadbeater said: “No, I don’t have any doubts whatsoever. I wouldn’t have put the bill forward if I did.
“The safeguards in this bill will be the most robust in the world, and the layers and layers of safeguarding within the bill will make coercion a criminal offence.”
There is a lot at stake this week for Sophie Blake, a 52-year-old mother to a young adult, who was diagnosed with stage four cancer in May 2023.
As MPs vote on whether to change the law to allow assisted dying, Sophie tells Sky News of the day her life changed.
“One night I woke up and as I turned I felt a sensation of something in my breast actually move, and it was deep,” she says, speaking from her home in Brighton.
“Something fluidy, a very odd sensation. I woke up and made a doctor’s appointment.”
Sophie underwent an ultrasound followed by a biopsy before she was taken to a room in the clinic and offered water.
“They said, ‘a hundred percent, we believe you have breast cancer’.”
But it was the phone call with her mother that made it feel real.
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“My mum had been waiting at home. She phoned me and said ‘How is it darling?’ and I said ‘I’ve got breast cancer,’ and it was just that moment of having to say it out loud for the first time and that’s when that part of my life suddenly changed.”
Sophie says terminal cancers can leave patients dreading the thought of suffering at the end of their lives.
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“What I don’t want to be is in pain,” she says. “If I am facing an earlier death than I wanted then I want to be able to take control at the end.”
Assisted dying, she believes, gives her control: “It’s an insurance policy to have that there.”
Disability rights advocate Lucy Webster warns that for people like Sophie to have that choice, others could face pressure to die.
“All around the world, if you look at places where the bill has been introduced, they’ve been broadened and broadened and broadened,” she tells Sky News.
Lucy is referring to countries like Canada and Netherlands, where eligibility for assisted deaths have widened since laws allowing it were first passed.
Lucy, who is a wheelchair user and requires a lot of care, says society still sees disabled people as burdens which places them at particular risk.
“I don’t know a single disabled person who has not at some point had a stranger come up to us and say, ‘if I were you, I’d kill myself’,” she says.
The assisted dying bill, she says, reinforces the view that disabled lives aren’t worth living.
“I’ve definitely had doctors and healthcare professionals assume that my quality of life is inherently worse than other people’s. That’s a horrible assumption to be faced with when [for example] you’ve just gone to get antibiotics for a chest infection. There are some really deep-seated medical views on disability that are wrong.”
Under the plans, a person would need to be terminally ill and in the final six months of their life, and would have to take the fatal drugs themselves.
Among the safeguards are that two independent doctors must confirm a patient is eligible for assisted dying and that a High Court judge must give their approval. But the bill does not make clear if that is a rubber-stamping exercise or if judges will have to investigate cases including risks of coercion.
Julian Hughes, honorary professor at Bristol Medical School, says there’s a very big question about whether courts have the room to take on such a task.
“At the moment in the family division I understand there are 19 judges and they supply 19,000 hours of court hearing in a year, but you’d have to have an extra 34,000,” he explains.
“We shouldn’t fool ourselves and think that there wouldn’t be some families who would be interested in getting the inheritance rather than spending the inheritance on care for their elderly family members. We could quickly become a society in which suicide becomes normalised.”