by Bereaved families who lost loved ones in the contaminated blood scandal have claimed their loved ones were being used “for research” after discovering historical notes in medical records.
It is claimed that some patients being treated for the blood clotting disorder in the 1970s and 1980s were given blood plasma treatment, which doctors knew could be contaminated and had hepatitis.
They wanted to study the links between Factor VIII treatment of hemophilia and the risk of infection, but some families claimed that their relatives were enrolled in these studies without their knowledge or consent.
Campaign group Factor 8 alleges that instead of stopping the treatment, clinicians lobbied to continue trials, even after recognizing the link between hepatitis and the treatment.
Jason Evans, director of the campaign group, found notes referring to the research in his father’s medical records.
He has since found other families who found the same notes in their relatives’ records.
Mr Evans, whose father died in 1993 after being infected with HIV and hepatitis C during treatment for hemophilia, told the PA news agency: “It’s horrible that there were hundreds of people with hemophilia them across the country knowingly infected with a killer. viruses under the guise of scientific research.
“These secret experiments, carried out without consent, show that individuals were treated only as test subjects, and not as human beings.
“The fact that this could happen on such a scale, over such a long period of time, is almost incomprehensible.”
According to medical regulators, seeking consent is “fundamental in research involving people”, but families have said that they and their relatives did not consent to take part in any such trials.
A file of documents – obtained through Freedom of Information requests, medical records provided by families, peer-reviewed journal articles and documents from public investigators into the contaminated blood scandal – reveals the timeline of the trials, led by a senior medical practitioner who worked for him. the now defunct Public Health Laboratory Service.
The documents indicate that patients were monitored remotely for about ten years.
Hundreds of patients were involved in the trials, but it is not clear whether they gave their consent.
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 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 research and I know it’s something he wouldn’t be happy with, so it was done secretly,” Mr. Pagliaro told PA.
“I was very surprised – at first I 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 years old after being co-infected with hepatitis C and HIV.
“When I saw that the research was on my brother’s records I thought: ‘What is this?’ And after asking a few questions I got nowhere,” said the 59-year-old from Warwickshire.
“It really only came in the last few months – they were using it for research.”
Emma Frame, from South Shields, said her father never agreed to take part in studies but found multiple references in his medical records.
Ms Frame told PA: “I have all his records and that’s where I came across these studies.
“There is no information other than the name of this doctor, treatment and date. With my father it was recorded several times.
“There’s a lot of hidden information out there.”
Jeffrey Frame was co-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 actual physical examples of my father who died years before,” she said.
Other families have also contacted Factor 8 after seeing a reference to the trials in their loved one’s medical records.
It comes as it emerged that experiments were carried out on schoolboys with hemophilia without their parents’ knowledge or consent.
Haemophilia is a disorder in which a specific protein is missing which affects the blood’s ability to clot.
Until the 1970s the treatment of hemophilia required plasma transfusions to be given in hospital.
This treatment was replaced by a new product, called factor coagulation, which could be given at home as an injection.
Factor concentrations were produced by pooling and concentrating human blood plasma samples.
But by pooling samples from up to thousands of donors, the risk of viral contamination – including HIV and hepatitis – increased significantly.
Hepatitis C is a virus that is spread 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 20 May.
Thousands of people have been infected with contaminated blood through infected blood products or blood transfusions, mostly between the 1970s and 1980s – but some cases have also been known since the early 1990s.
People were infected with hepatitis or HIV, and in some cases with both.
An estimated 3,000 people died as a result, and those who survived lived with lifelong health implications.
Des Collins, senior partner at 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 that are appalling and appalling. on us.
“We look forward to Sir Brian Langstaff’s final Inquiry report in a few weeks’ time, which will set out the wrongdoings in a comprehensive manner.
“Not only will this strengthen the case for compensation for victims and their families, but it will also be important to show the lessons to be learned so that the mistakes of the past are not repeated.”
