‘It really was magical’: infected blood scandal victims join forces to share stories

<span>Victims and family members have spent decades seeking justice over the NHS infected blood scandal.</span><span>Photograph: Justin Tallis/AFP/Getty Images</span>
Victims and family members have spent decades seeking justice over the NHS infected blood scandal.Photograph: Justin Tallis/AFP/Getty Images

Victims of the infected blood inquiry are joining forces to share stories and support.

Sue Wathen, Joan Edgington and Nicola Leahey were diagnosed with hepatitis C after struggling through years of unexplained symptoms that were dismissed by doctors.

Learning that they had been infected with a disease known as the “silent killer” by receiving contaminated blood gave them answers, but left them feeling in despair and bereft of purpose.

They have now found a new lease of life by meeting people over the course of the infected blood inquiry who had been through the same things and are now part of a group of eight “blood friends” who share their stories to support others.

Related: What is the NHS contaminated blood scandal and how did it happen?

“Suddenly the whole world opens up to you, that actually you’re not the only one, and there’s hundreds, thousands of others out there,” Leahey said.

“There’s the good and there’s the bad, there’s the positive moments to share – we’ll talk about the grandchildren and things like that. But we’ll also be there for each other. When you’ve got a bad day and you’re feeling completely zonked out, the negative thoughts, the worry what is next, are we going to be the next statistic and not be at the next meeting.”

Leahey contracted hepatitis C from blood transfusions in 1975 and 1980, but only found out in 2009 after taking early retirement because of feeling “extremely tired”.

She had lost purpose and felt like “a burden” when she was struggling with treatment, which left her spending days lying in a darkened room, but found herself feeling renewed by the support group.

“Our purpose now is to help and support people and to believe again, to believe that there is life after hep C and we have to keep on together,” she said.

Edgington, of Dorset, was infected in January 1991 during a blood transfusion and was diagnosed a few years later after experiencing chronic fatigue.

Edgington recalled attending the opening inquiry by herself, and finding it “overwhelming” sitting in the grand auditorium. “I couldn’t believe that 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 of medical battles that at points seemed inexplicable.

She said: “Where we had maybe begun 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 helpful advice, including articles to bring to the GP or support networks and groups. “I can’t tell you the relief. It really was magical,” Edgington said.

Wathen, from Northamptonshire, was diagnosed with hepatitis C in 2014 and does not know when she was infected, explaining that her blood records “disappeared” leaving a singular reference in a note in her medical files that stated she had had “numerous blood transfusions”.

Wathen also attended the opening of the inquiry on her own. “I do think it was quite staggering, that suddenly there were all these other people, and you thought, these are people who have a story. And I think it put my own story into perspective,” she said.