‘What a relief’: Victims of contaminated blood scandal set up support groups
Victims of the contaminated blood investigation are joining forces to share stories and support.
Sue Wathen, Joan Edgington and Nicola Leahey were diagnosed with hepatitis C after years of struggling through unexplained symptoms that were dismissed by doctors.
When they learned they had been infected with a disease known as the ‘silent killer’ by receiving contaminated blood, they got answers but felt desperate and without purpose.
They have now found new life by meeting people while researching infected blood who have experienced the same things and are now part of a group of eight ‘blood friends’ who share their stories to support others.
“Suddenly the whole world opens up to you, that you’re actually not alone, and there are hundreds, thousands of others,” Leahey said.
“There’s the good and the bad, there’s the positive moments to share – we’ll talk about the grandkids and things like that. But we will also be there for each other. When you’re having a bad day and you’re feeling all confused, the negative thoughts, the worries about the next step: are we going to be the next statistic and not be at the next meeting?
Leahey contracted hepatitis C through blood transfusions in 1975 and 1980, but only discovered it in 2009 after taking early retirement because she felt “extremely tired.”
She had lost her purpose and felt “a burden” as she struggled with the treatment, which left her in a darkened room for days, but found herself feeling renewed by the support group.
“Our goal now is to help and support people and believe again, to believe that there is life after hep C and we have to move forward together,” she said.
Edgington, from Dorset, became infected during a blood transfusion in January 1991 and was diagnosed a few years later after experiencing chronic fatigue.
Edgington recalled attending the opening inquest alone and finding it “overwhelming” to sit in the main room. “I couldn’t believe all those people there had the same story… just to know you weren’t alone,” she said.
She felt validated after the new group of friends shared their similar experiences with medical battles that seemed inexplicable at some points.
She said: “Where we might have started to feel like we were hypochondriacs, that we were wasting the doctors’ time, that the random blood tests were just an anomaly, no, they weren’t. They were all part of the pattern. So that was just a real personal impact that day, it took me about a fortnight to process it.
The group also shares useful advice, including articles to take to the GP or to support networks and groups. “I can’t tell you the relief. It was truly magical,” Edgington said.
Wathen, from Northamptonshire, was diagnosed with hepatitis C in 2014 and does not know when she was infected. She explains that her blood records “disappeared,” leaving a special reference in a note in her medical records stating that she had had “numerous blood transfusions.” .
Wathen was also present alone at the opening of the investigation. “I find it shocking that there were suddenly all these other people and you thought: these are people with a story. And I think it put my own story into perspective,” she said.