Infected blood survivors speak out

Janice Whitehorn is making wedding dresses again. She built the business but nearly lost it after aggressive treatment for hepatitis C virus left her unable to work. She only found out she had the potentially fatal viral infection in 2019, passed on to her by her mother. Daf, who went 20 years without knowing she got it from a blood transfusion in the early 1970s, felt so guilty that I’d passed it on and I didn’t know that I could pass it on because wasn’t told anything about it. So I felt ever so guilty. And I’ve always, I’ll always feel guilty. Not your fault. No, no, it’s not work. Janice was told she didn’t qualify for the latest treatments to clear her infection. The one she got only made her I’ll, she says, and left her unable to have children. I want to get back to. I desperately want to get back to work and my life and and just crack on with things, with the life I’ve been left with. I can’t procrastinate on the fact of the children that I can’t ever have and that kind of thing. But I can do this. They’re looking to the infected blood inquiry for answers. Most attention has been focused on haemophiliacs, the group harmed most in this scandal by blood products imported from America. But far more people were infected with hepatitis C, like Daf and Janice via transfusions here in the UK. Documents given to the enquiry show how up until the early 1990s, compared to the standards of today, the UK blood supply was far from safe. One startling revelation. The UK Blood Service regularly collected blood from prisons, despite evidence at the time that prisoners were five times more likely to be infected with hepatitis viruses. They reveal early calls from experts for this practice to stop, but it continued in some places into the 1980s. Documents suggesting the Home Office supported the practice and there were concerns about shortages of blood. Today things are different. Around 800,000 people regularly give blood, including me. There’s a questionnaire about lifestyle habits, illnesses and travel history. Then a brief consultation before a donation. So at the start of my donation, the staff took three tubes of my blood. Part of one of these is used to archive a sample of my donation. Another is used to test for viruses like HIV and hepatitis and the blood service, say in steps like that that have radically improved the safety of blood transfusion and donation in the UK. Then my blood goes to a lab like this one, where it’s separated into the key components needed for treatments and transfusions in the NHS. Records of all blood donors and recipients are kept for 30 years. Not so in the past and the numbers only estimates because records have been lost or destroyed, bear this out. The inquiry calculates around 27,000 people were infected with hepatitis C via routine transfusions for surgery, childbirth or cancer treatment. The majority have since died of other causes, but around 1600 are thought to have died so far from illnesses like liver cancer caused by hepatitis C We have apologised but we remain very sorry that those events happened today though my job as Chief Medical Officer is to ensure that the blood supply today is safe and that people who need a transfusion today get blood that comes from one of the safest blood services in the world. But there are many more questions the infected blood inquiry must answer, like why, when testing for HIV and then hepatitis C became available, were blood services so slow to adopt them? And why? Were there clear delays and failures to look back, identify and compensate those infected, like DAF and Janice Whitehorn? Failures that left them and thousands more unknowingly infected, risking their health and that of others for decades. So you had it and didn’t know I had it and didn’t know. So we I could we could have affected thousands, but we wouldn’t know. So how can we? It makes you feel responsible for things that were beyond our control, and we feel guilty for that. But it’s not our guilt, because we didn’t. We weren’t the ones that held back the information, they were.