Joan's story: 'I was informed by the Transfusion service that during a transfusion, I had been infected with Hepatitis C'

In 1991, I underwent surgery. Three years later I was informed by the Transfusion service that during a transfusion, I had been infected with Hepatitis C. Although I had a kind and supportive GP, there wasn’t much information out there about what it meant to be infected with this virus.

By 2002, the virus had caused enough liver damage for me ‘to qualify’ for an experimental treatment (Hep C is now treated with a much more effective and gentle medication). By 2004 I was accepted on a year of very harsh chemotherapy that itself caused me some permanent damage. I knew there was only a 50/50 chance it would work, but as a single parent with a mortgage to pay, I was desperate to be well. It took a long time before I could begin to feel that the treatment might have worked, as I was monitored for 18 months afterward but never told I was ‘cleared’.

Originally all of this was happening with very little information and no one to talk to about it all. I was left feeling I was the only one going through this.

It was not until I was asked to be part of a legal action at the end of the 1990s that I realised I was not alone, that the government could have and should have done more to protect us. All this time and through so much turmoil, it was really hard to get any clear information, and it later (through the Infected Blood Inquiry) became clear that there had been a cover-up at governmental level.

By 2019, I was part of the official Infected Blood Inquiry as a witness and core participant. The inquiry took seven years and was completed in May 2024. It was an inquiry that uncovered many transgressions and faults by both some medical professionals and government officials.

I tell you all this so you can get an idea and can imagine my huge relief when I finally heard that there was a charity helpline that I could get in touch with. A helpline with trusted INDEPENDENT information run by people who had been personally involved in the Hepatitis C story.

The Hep C Trust has provided a helpline for many since the early 2000s and to me it meant I could talk to someone who knew what I had been through, who knew I wasn't exaggerating when I talked about the symptoms I suffered and the attitude I had met at the hands of a few consultants.

To be heard, to be understood and believed was amazing and such a relief; but the Trust goes beyond that and can provide accurate information which was vital in those early years — from benefits application support to being alongside us all as we went through the seven years of the Infected Blood Inquiry. There was no other organisation that was independent, well informed and sympathetic to our story. All through these many years, a very small charity with no core funding has been there for us, going beyond any nine-to-five attitude to their work.

Over the years their work has expanded to include volunteers and peer groups working in many different ways, but for me it remains a trusted, much-valued point of contact whenever I need to discuss things or find out current thinking on things.

Without it, so many of us would have been truly lost in the misinformation and distress of just searching for answers and support.

Being part of this photographic project is my way of saying thank you for all they have done. Without them, things would have been so much bleaker.