matt
In 1988, Matt contracted hepatitis C through a blood transfusion administered during his leukaemia treatment. He is one of around 30,000 victims of the UK contaminated blood scandal. Here, Matt shares his story.
I don’t really remember much of my childhood before I was ill. My parents describe me as a fairly sickly child, always going in and out of the doctor’s surgery for something.
In 1988, after passing out following a fall whilst on holiday with my family, I was diagnosed with leukaemia. I was just three years old.
At the hospital in Spain the doctors ran a blood test. My blood was virtually see-through so they knew straight away it was blood cancer and not recurrent tonsillitis, which my GP in the UK had repeatedly diagnosed me with. I was flown back to the UK and admitted to Great Ormond Street Hospital where I underwent multiple treatments including chemotherapy, radiotherapy and multiple blood transfusions.
A lot of my earliest memories as a child are of my time in hospital. Surprisingly, none of the memories are bad. Throughout my life I’d learnt to block out the bad memories. I can’t quite recall when I went into remission for leukaemia, all of the check-ups and appointments merge into one, but it was 18 months or so after the initial diagnosis.
You’d think that would be enough bad health luck for a lifetime. 10 years later, however, we found out that one of the blood transfusions had given me hepatitis C.
I wasn’t told very much about it at the time. I was a young teenager and didn’t really understand the medical jargon.
My parents and I were essentially told that ‘at least the cancer wasn’t there anymore’ and that ‘if he hadn’t had the transfusions, he’d be dead’.
The message was always just to be grateful and that hepatitis C was just a ‘side effect’ of the treatment.
I spent my whole childhood and adult life, until recently, with the virus, unaware of the bigger implications.
All of my GPs have known my status and, although I was invited for flu and COVID-19 jabs as a vulnerable person, there was never any wider conversation about hepatitis C. This is despite there being a simple tablet form of treatment available for many years.
I spent my whole childhood and adult life, until recently, with the virus, unaware of the bigger implications.
I know you should take care of your own health, but I guess as I wasn’t really educated about the virus from the off, I didn’t think it was that big a deal by the time I was an adult. I knew I had to be careful about how much I drank and be careful if I’d been cut but it’s something you get used to if you’ve done it your whole life.
It wasn’t until 2023, after a few attempts at getting life insurance, that a friend said they’d help me out. My wife and I had recently bought our first house together and I wanted to protect her should anything happen to me.
My friend managed to get me a quote and all I needed to do was to take a test to check the current status of my hepatitis C, which I had disclosed I had upon application, just like I always do.
My GP wasn’t the most helpful and seemed rather blasé about it, but after a while I managed to get a test for ‘insurance purposes’. He had mentioned that he’d been told there were modern treatments, and I think his ultimate goal was to explore that, but we never got that far before Royal Berkshire Hospital intervened.
A few weeks after the test, I had a call from the local hospital. A lady called Summer, asked me to come in and see her. My results had landed on her desk, by chance, and up until that point they had been unaware of my situation.
At the meeting, she explained to me her role in eliminating hepatitis C in the UK. She’d been working as part of a team, contacting everyone they could to treat them. This involved going through databases of people, none of which had my name on.
Summer explained the medication and the risks of untreated hepatitis C, which I’d never been told before. She dispelled many myths that I’d been told, or the misinformation that I thought was true. I had a Fibroscan, the first time my liver had been tested, as far as I can remember, since I left Great Ormond Street. I was speechless. I had no idea how serious my situation was, no idea it could have turned into cirrhosis if left untreated.
I am now cured of the virus after three months of successful medication. The Hepatitis C Trust, along with Summer and her team at Royal Berks, guided me through the application for support and compensation, and I’m getting regular counselling sessions to help me make sense of it all. I’m still coming to terms with what has happened to me and the multiple failures made along the way to make sure that I was found and treated after the initial failure of being given contaminated blood. I know there are thousands of other stories out there and that many people have lost their lives.
I now volunteer with The Hepatitis C Trust, sharing my story and helping people to get tested. I wanted to give something back, to help those who helped me. I hope that my story might resonate and help other people feel less alone.
