Relatives who lost loved ones in the contaminated blood scandal have claimed their relatives were “used for research” after discovering historical notes in medical records.
It is alleged that some patients treated for the blood clotting disorder hemophilia in the 1970s and 1980s were treated with blood plasma that doctors knew could be contaminated and infect them with hepatitis.
They wanted to investigate the link between the haemophilia treatment, Factor VIII, and the risk of infection, but a number of families claimed that their loved ones were taking part in these studies without their knowledge or consent.
The Factor 8 campaign group claims that, rather than stopping treatment, doctors lobbied to continue the trials even after establishing the link between hepatitis and treatment.
Jason Evans, director of the campaign group, found notes in his father’s medical records that pointed to the investigation.
He has since found other families who have discovered the same notes in their loved ones’ archives.
Mr Evans, whose father died in 1993 after being infected with both HIV and hepatitis C while being treated for haemophilia, told the PA news agency: “It is appalling that hundreds of people with haemophilia across the country have been knowingly infected with fatal diseases. viruses under the guise of scientific research.
“These secret experiments, conducted without consent, show that individuals were treated as mere test subjects, and not as human beings.
“The fact that this can happen on such a scale and over such a long period of time is almost incomprehensible.”
Medical regulators say asking for consent is “fundamental in research involving human subjects,” but families have said neither they nor their loved ones have given consent to participate in such studies.
A file of documents – obtained through Freedom of Information requests, medical records provided by families, peer-reviewed journal articles and documents from the public inquiry into the infected blood scandal – reveals a timeline of the trials, led by a senior doctor who worked for the now defunct Public Health Laboratory Service.
The documents show that patients were monitored remotely for about ten years.
The studies involved hundreds of patients, but it is not clear whether they gave consent.
Becka Pagliaro, from Waterlooville, near Portsmouth, said she was “shocked” when she found notes about the tests in her father’s patient notes.
Her father Neil King became simultaneously infected with both HIV and hepatitis C while being treated for hemophilia. He died in 1996, when he was 38 years old.
“When I got his medical records I saw that he was part of this investigation, which I know was something he would not have consented to, so that was done in secret,” Ms Pagliaro told PA.
“I was really shocked. “I first wondered if I had received someone else’s medical records because I couldn’t 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 that the study was in my brother’s records, I thought, ‘What is this?’ And after asking a few questions I couldn’t get anywhere,” said the 59-year-old from Warwickshire.
“It was only in the last few months that it really came to light: they were being used for research.”
Emma Frame, from South Shields, said her father had never agreed to take part in a study but had found several references to it in his medical records.
Ms Frame told PA: “I have all his details and that’s where I came across these studies.
“There is no information other than the name of this doctor, a treatment and then a date. It was recorded several times with my father.
“It’s absolutely mind-boggling how much information is out there and has remained hidden.”
Jeffrey Frame was infected with HIV and hepatitis C and died in 1991, when he was only 39.
Ms Frame said she also discovered in the mid-1990s that the NHS had kept some of her father’s ‘samples’, which had not been discussed with the family.
“They still had physical samples from my father, who had passed away years ago,” she said.
Other families have also contacted Factor 8 after finding a reference to the studies in their loved ones’ medical records.
It comes after it emerged that experiments were being carried out on schoolboys with haemophilia without the knowledge or consent of their parents.
Hemophilia is a condition in which a specific protein is missing that affects the blood’s ability to clot.
Until the 1970s, the treatment of hemophilia required plasma transfusions, which had to be administered in the hospital.
This treatment was replaced by a new product called a factor concentrate, which could be given as an injection at home.
Factor concentrate was produced by pooling and concentrating human blood plasma samples.
But collecting samples from tens of thousands of donors significantly increased the risk of infection with viruses – including HIV and hepatitis.
Hepatitis C is a virus that is transmitted through blood-to-blood contact and infects the liver. Without treatment it can cause serious damage to the liver.
The Infected Blood Inquiry will publish its final report on May 20.
Tens of thousands of people became infected with contaminated blood through infected blood products or blood transfusions, largely between the 1970s and 1980s – but some cases from the early 1990s have also been identified.
People became infected with hepatitis or HIV, and in some cases both.
An estimated 3,000 people died as a result, while those who survived suffered lifelong health consequences.
Des Collins, senior partner at Collins Solicitors, which represents 1,500 victims and their families, added: “There is now overwhelming evidence that the NHS failed patients on a number of levels in the 1970s and 1980s and certainly in ways which we find shocking and disgusting.
“We look forward to Sir Brian Langstaff’s final inquiry report in a few weeks’ time, which will set out the abuses committed in a comprehensive manner.
“Not only will this strengthen the case for compensating victims and their families, but most importantly it will shine a light on the lessons we can learn so that past mistakes are never repeated.”