After 40 years, a victim of the contaminated blood scandal has broken his silence and spoken of how he was infected with Hepatitis C through an NHS blood product he was given to treat his haemophilia.
Like thousands of others, Seaham 's Mark Fox, 44, was infected with the lethal disease and has spent decades living with the ramifications of this. He's suffered long-term damage to his liver and lungs and developed serious anxiety and depression, while watching fellow patients - and friends - die.
Mark - a former cosmetic technician who is now medically retired - has chosen to speak out now after the Government announced that people like him will be in line for a £100,000 interim compensation payout this October. Mark, has Von Willebrand Disease - similar to haemophilia.
He told ChroniclelLive; "This is the first time I've spoken to anybody really. I think it's because it's all coming to a head. So many people like me have similar stories, or just the same story. We are so close to the Government properly acknowledging what was done, and getting that acknowledgement is something we have been waiting for for so long - over the whole of our lives.
"I decided it was time to speak out, I have held this for forty years. I have hidden away, I've been ostracised. I've lost jobs because of it. Now I think I am of an age where I can say clearly it was never my fault - and I'm now going to speak my story."
Thousands of haemophiliacs were given tainted blood products on the NHS and infected with viruses including HIV and hepatitis. Mark was a patient at the RVI's haemophilia centre in the 1980s when he was infected, like many others. More than 2,400 people have died due to the scandal, often described as the "biggest treatment disaster in the history of the NHS".
The ongoing Infected Blood Inquiry, led by former High Court judge Sir Brian Langstaff, is investigating the circumstances which led to the infections, and how the Government and the NHS has responded in the decades since. Campaigners like Jesmond's Carol Grayson are among those to have spent many years fighting for recognition of the harm done to their families.
For Mark, his infection came as a small child, but - like many patients who had hepatitis C - he was not told for many years. He said: "It was around about 1981, he said. He was taken to hospital with bruising that seemed not to stop. One of the treatments we were given was Factor VIII.
"I was a child, I didn't know anything about it. My foster parents knew nothing. I didn't find out about any of the dangers until I was about 17 or 18. They knew but they hadn't told us."
Mark's dad spotted that he could have been infected in a short article in the back of a Haemophilia Society booklet. "One day he rang me," Mark said. We used to get leaflets from the Haemophilia Society each month. There was this tiny bit on the last page saying blood products had been contaminated with HIV and hepatitis C.
"Back then, in our naivety, we thought that was basically like HIV. We rang the RVI and were told there was nothing to worry about."
Mark was reassured by medics, including the then-head of the RVI's Haemophilia unit Dr Peter Jones - that he would still live a long and healthy life.
But later, it became clear this was not the case. "When I found out how people had died from hepatitis C and started doing my research," Mark added. "About four or five years later I started to feel poorly. Found out that some of the people I used to go to the clinic, some of them had died. That's when I put two and two together."
Mark had four crippling runs of treatment to tackle this, and the last did succeed in clearing his hepatitis, but at huge cost. He added: "I took that treatment for 48 weeks but it was 48 weeks of hell. I didn't really want to be here. I did contemplate suicide. The police had to come and get me at one stage.
"I have numerous health issues. I have scarring on my lungs - I got pneumonia eight times in eight months while getting treatment. I suffer from anxiety and depression. My kids lost their dad in that year."
Mark, a father and grandfather, also spoke about how his hepatitis had scuppered career ambitions and relationships, and that he still now struggles with his health. However, he said he now enjoys spending time with his grandchildren. It is only in the last year or so that he has realised how big a scandal this is, he said. He has been supported by the Factor 8 Campaign Group and lawyers Collins. Factor 8 was set up by Jason Evans who lost his father to HIV due to the scandal.
"I have two granddaughters now and they've given me a new lease of life. I try to give them what I couldn't give my own kids," Mark added. "Once this has been nipped in the bud I'll finally be able to move on. I had my career completely taken away."
As for the recently announced compensation, Mark continued: "As soon as this has been nipped in the bud once and for all we can move on. It needs to be done, now. We are still dying. I have sat next to people receiving infusions - people my age - and they have now died.
"We just have to live our lives the best we can now. It's about them saying sorry. Money helps, don't get me wrong. There's not anyone in the world who'd turn down £100,000, but for me it's the acknowledgement that we have not ever done anything wrong."
The ongoing Infected Blood Inquiry has heard evidence from the infected and affected, medics, and numerous former Government officials since it formally opened in 2018. In evidence pertaining to the Newcastle Haemophilia Centre, the Inquiry heard last year how Dr Jones believed "a fatal mistake" had been made in not more rapidly moving to "self-sufficiency" with regard to blood products.
This would have meant no longer needing to import products like Factor 8 and lowering the risk of infection. The Inquiry also heard in June that haemophiliacs in Newcastle "should have been told" that they were at risk of contracting HIV. The Inquiry's hearings continue throughout 2022, with a final report and recommendations expected to be delivered next year.
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