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.
A man has been charged with four counts of attempted murder after a car collided with a group of people in London’s West End on Christmas Day.
Anthony Gilheaney, 30, will appear before Westminster Magistrates’ Court on Friday and has also been charged with causing serious injury by driving whilst disqualified, driving a motor vehicle dangerously and possession of a bladed article in a public place, the Metropolitan Police said.
Forensic investigators collect evidence at the scene on Christmas Day. Pic: PA
Items of clothing and blood are seen on the pavement. Pic: PA
Four people were taken to hospital after the incident, with one in a life-threatening condition.
Metropolitan Police officers were called to reports of a crash and a car driving on the wrong side of the road at 12.45am.
The incident occurred outside the Sondheim Theatre, which is the London home of the musical Les Miserables.
Shaftesbury Avenue is at the heart of London‘s West End and the city’s theatre district.
Deputy Assistant Commissioner Stuart Cundy said the suspect was arrested within minutes of the incident “in the early hours of Christmas Day”.
“Since then, investigators have worked tirelessly to build the case and have today charged Anthony Gilheaney with four counts of attempted murder.
“Our thoughts now are with the victims, one of which remains in critical condition in hospital.”
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UK
Special educational needs children ‘segregated and left to struggle in wrong schools to save money’
Children with special educational needs are being “segregated” and left to struggle in the wrong schools because councils are trying to “save on costs”, parents have told Sky News.
Maire Leigh Wilson, whose four-year-old son has Down’s syndrome, says she “shudders to think” where he would be now had she not been in a “constant battle” with her council.
“I think he would probably just be at the back of a classroom, running around with no support and no ability to sign or communicate,” she said.
Mrs Leigh Wilson wanted her son Aidan to go to a mainstream school with additional specialist support, but her council, who decide what is known as a child’s Education Health and Care Plan (EHCP), wanted him to attend a special school.
The number of EHCPs being appealed by parents has risen “massively”, according to education barrister Alice De Coverley.
She said councils are struggling to meet the volume of demand with “stretched budgets”, and parents are also more aware of their ability to appeal.
Mrs De Coverley said more than 90% of tribunals are won by parents, in part because councils do not have the resources to fight their cases.
She said, in her experience, parents of children with special educational needs will put “anything on the line, their homes, their jobs”.
On whether she thinks the system is rigged against parents, Mrs De Coverley said: “I’m not sure it’s meant to be. But I think that parents are certainly finding it very tough.”
She added the number of “unlawful decisions” being made by local authorities means parents who can afford it are being “utterly burnt out” by legal challenges.
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Maire Leigh Wilson with her son, Aiden, four
Mrs Leigh Wilson’s case was resolved before making it to court.
Her council, Hounslow in southwest London, said they complete more than four in five new EHCPs within the statutory 20-week timescale, twice the national average.
Hounslow Council said they “put families at the heart of decision-making” and young people in the area with special educational needs and disabilities achieve, on average, above their peers nationally.
They admitted there are areas of their offer “that need to be further improved” and they are “working closely with families as a partnership”.
“We have a clear and credible plan to achieve this, and we can see over the last 18 months where we have focused our improvement work, the real benefits of an improved experience for children, young people, and their families,” a Hounslow Council spokesman said.
He added the council had seen the number of EHCPs double in the last decade and they “share parents’ frustrations amid rising levels of national demand, and what’s widely acknowledged as a broken SEND system”.
Emma Dunville wanted her son, Albie, to go to a special school but the council took too long to assess him
Emma Dunville, a friend of Mrs Leigh Wilson whose son also has Down’s syndrome, describes her experience trying to get the right education provision for her child as “exhausting mentally and physically”.
She said: “For the rest of his life we’ll be battling, battling, battling, everything is stacked up against you.”
Unlike Mrs Leigh Wilson, Mrs Dunville wanted her son Albie to go to a special school, but she had to wait more than a year for an assessment with an education psychologist to contribute to the council’s decision, which meant she missed the deadline for an EHCP.
“The people making these decisions just don’t see that all children with Down’s syndrome are totally different and can’t be seen as the same.”
The guidelines are that if there are not enough local authority-employed education psychologists they should seek a private assessment, but her local authority did not do that.
Mrs Dunville said her son has been “segregated” in a mainstream school, where they are “trying their best” but “it’s just not the right setting”.
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