Joan

In 1991, Joan contracted hepatitis C via a blood transfusion administered during surgery. She is one of around 30,000 victims of the UK contaminated blood scandal. Here, Joan shares her story.

In the late 1980s and up to 1991 I had been a youth worker and area manager with an “Outward bound ” brief. This involved taking teenagers who may never have experienced the countryside camping, hiking and even mountaineering. We went as far afield as the Alps, Pyrenees and the Dolomites.

At the time of infection, I was also a single parent with two girls, then aged 10 and 12. I was a physically fit, very active mother who had a career I truly loved.

After my surgery I never regained that level of fitness, no matter how hard I tried.

I was finding that I could not regain my stamina, was getting random flu-like symptoms, swollen glands and issues with my thyroid. When previously a good weekend off-duty would find me recharged and ready for another week, I very soon discovered the more I pushed the more I ached and the lower my energy levels were.

As chronic fatigue took over, I had to work part-time and later changed jobs. I ran projects for an education charity which allowed me control over the hours that I worked as I found some days and months were much harder than others. This drop in wages had a huge impact on my financial stability and the increase in stress added to the decline in my health. I tried various alternative therapies as orthodox medicine didn’t seem to have any answers but still, my health declined.

Then in 1994, as part of a “look back exercise”, I was contacted by the South West Transfusion Service via a letter inviting me to make an appointment for a blood test to see if I had contracted hepatitis C from a transfusion.

I attended an appointment for my results and was told I had hepatitis C and I needed to be careful sharing toothbrushes, razors and be conscious of any blood spills or menstrual bleeding.

I was given a British Liver Trust information leaflet and left that appointment in shock. I remember sitting in the car park for over half an hour unable to drive as I tried to work out what this meant for me and my girls.

Years in a sort of no-man’s land followed. I had a hospital consultant – the same one who had authorised my contaminated blood transfusion – who insisted that hepatitis C was a “slow burner” and as such “wasn’t a real problem”.

Luckily, a kind and supportive GP was willing to help me research the implications. It soon became clear that this could be life threatening and as a single parent I was determined to be well.

We eventually heard of medical trials with just a 50/50 chance of clearing the virus. By 2003 my liver biopsy showed there was enough damage to qualify me for treatment. I joined an Interferon and Ribavirin trial but because I had genotype 1B I faced a year of a high dose of this incredibly toxic cocktail. At no time was I informed that there may be permanent damage and there is no record in my notes of the health checks done during this trial; so there is no record of the extent of damage done to my body.

This was the toughest physical challenge I have ever faced. The Infected Blood Inquiry has established that this treatment was the harshest chemotherapy offered and it was later withdrawn. I still deal with the damage done by it and later discovered that the drug had already been refused by patients in the USA as a cancer treatment.

During this time I also faced difficulties with the local benefits office, as my treatment wasn’t accepted as chemotherapy because I didn’t have cancer. This whole chapter has left me with PTSD.

2017 saw the launch of the Infected Blood Inquiry. As a core participant in this I learnt just how much was already known about infected blood before I had my surgery.

It was known that a screening test could have been used to check the donated blood before it was given. It was known that heat treating blood and blood products could have removed the risk of viral infection.

At no point had I or others been made aware of the risks from transfusions. I also later discovered that once it was found I was infected I was put on a watch list without my consent.

It was eye opening, frustrating and deeply depressing to learn that the risks of infected blood were well known decades before my operation.

The Inquiry also found Lord David Owen as Minister of State for Health was by 1976 working towards Britain being self-sufficient in blood and blood products; but the “system” didn’t follow his recommendations. Instead, vital parts of the NHS were put on sale, including the British Government owned Plasma Resources (bought in 2002). To quote a letter to David Cameron (then PM) from Lord Owen: “ Plasma Resources UK Ltd is an excellent insurance policy for the NHS…. And you would be foolish to sell it off.” (letter dated 15^th March 2015)

What was the extra cost of intensive medical care for the victims of these policy decisions? How many deaths were a direct result? It’s a heart breaking equation.

It’s been a difficult journey, that for me started with the battle to establish the Skipton Fund, an ex gratia payment scheme for some people who received infected blood set up in the early 2000s, and it’s still not over.

Since Kenneth Clarke (1988 to 1990) there have been 19 MPs in post as Health and Social Care ministers. The Inquiry has exposed the inadequacies of a system that leaves such a critical role in the hands of non-health experts, some only in post for a few months, with no induction process and relied on “received decision making” without the knowledge to challenge it.

However the most shocking discovery was that the institutions we had trusted to safeguard us had not only failed us but had actively chosen to cover up this betrayal.

I’m so grateful to fellow campaigners, the Inquiry team and The Hepatitis C Trust for their support over the years. The “ordinary” people should be heard, each life valued and those in power must act with integrity or be held to account for their failures.