As Theresa May launches an inquiry into a scandal which saw thousands infected with Hepatitis C and HIV, Sarah Freeman speaks to those whose voices may finally be heard.
When the results of the long-awaited Hillsborough inquiry were finally published Helen Wilcox quietly applauded the determination of the families whose fight for justice began amid the debris of that spring afternoon in 1989. She applauded too the decision by Theresa May to immediately launch an investigation into the inferno which turned Grenfell Tower into a blackened tomb. And yet as she did, it was a further reminder of just how difficult her own search for answers has been.
Helen is one of the many thousands of haemophiliacs who during the late 1970s and early 1980s were infected with Hepatitis C after receiving contaminated blood products on the NHS. Factor VIII, extracted from donated blood, was heralded as a revolutionary treatment for the blood clotting condition. However, as demand rose much of the plasma used to make it came from the US where blood was taken from high risk groups like prostitutes, drug addicts and prison inmates who were given cash in exchange for donations.
In all around 4,670 individuals are believed to have contracted Hepatitis and of those, 1,270 were also infected with HIV. To date 2,400 victims have died, but despite repeated calls for an investigation, until this week none has been forthcoming.
“They have simply swept it under the carpet, thinking it will go away, but it won’t,” says Helen. “Someone needs to be held accountable for what happened. It is a scandal that all these years on people are still covering their backs.”
Yesterday, Helen and the other survivors finally got the news they have waited so long to hear when Theresa May announced that there would now be an enquiry. Much of the recent pressure on the PM has been led by Hull North MP Diana Johnson who believes that even when it became apparent that the treatment was high risk, contaminated products were used for a further six years.
Helen, now 58 years old, was living in Manchester when she was given infected blood products in the early 1980s. However, despite being unwell for years it was only when the mother of two moved to York with her husband Ian in 2006 that she was finally identified as one of the victims.
“My new GP has been wonderful, but of course I am angry that it took so long for anyone to tell me what had happened. I was infected some point between 1980 and 1985 and yet I had to suffer 20 years of being desperately unwell before I knew why. I felt lethargic, I had no energy. It was like I had given up on life and the only answer seemed to be anti-depressants. Hearing that I had been given contaminated blood products was a shock, but for the first time everything made sense.
“We had tried to start a new life in France where we had a holiday home, but pretty much as soon as we got out there I became desperately ill. We had no choice but to come back. We lost an awful lot of money on that move and that’s what people don’t realise. The ripple effect of something like this doesn’t stop, it just keeps on going.”
Helen, who has survived four strokes, also suffers from diabetes and rheumatoid osteoporosis which she believes are linked to her Hepatitis diagnosis. Recently she was told she also has cirrhosis, which will cause major liver damage.
“I am a ticking time bomb,” she says. “I don’t know how long I have got, but while there is breath in my body I will keep on fighting. I think the Hillsborough inquiry and what happened at Grenfell Tower has made people realise that those in authority can’t be allowed to be beyond justice.
“The hospital where I was treated knew for years that I had Hepatitis and yet they did nothing. It’s outrageous and it also seems to me quite convenient that my medical records for that period no longer exist. It’s like for those six years I just disappeared.
“Even now I am amazed how many medical professionals are unaware of what happened. That’s another reason we need this inquiry. We need everyone to be made aware so hopefully it will reduce the chances of something similar happening again.”
Diana Johnson, who this week called an emergency debate in the House of Commons on the issue, believes there is a “compelling evidence” of a criminal cover up on “an industrial scale.” As chair of the All-Party Parliamentary Group on Haemophilia and Contaminated Blood she has been responsible for looking into the impact of the Archer Report which in 2009 described the scandal as a“horrific human tragedy” and suggested UK authorities had been slow to react.
The inquiry also called for a government-administered and backed compensation scheme for victims and their families, but so far the only payments made have been discretionary.
It was a situation which frustrated Mike Dorricott from Sedburgh, who felt the victims had been overlooked by successive governments. A managing director at United Biscuits, the father of two was infected with hepatitis in 1983 and following two liver transplants was later diagnosed with liver cancer.
A vocal campaigner, he sadly died in 2015, but since then his daughter Sarah Dorricott, who works in Leeds as a chef, has taken up the charge and has given a cautious welcome to news that a full-scale public inquiry has once again been mooted.
“Two weeks after my dad died I found out I was pregnant. It was heartbreaking. Dad had always wanted a grandchild, but it was just another thing this scandal robbed him of. Throughout everything, Dad always kept his chin up, but he knew he was never going to walk his daughters down the aisle and it was the lost opportunities which hurt him most.
“Over the years we have grown used to the odd flurry of newspaper articles and various MPs calling for something to be done, only for nothing to happen, so it’s hard to believe that finally we are going to get a full inquiry.
“We have suffered so many setbacks and every time it has been devastating. There are two things we want. Firstly we want adequate compensation for the victims and their families, but we also want a full and frank admission of the mistakes that were made.”
The last time, it appeared the victims might finally be listened to was two years ago when then Prime Minister David Cameron said it was difficult to imagine the “feeling of unfairness that people must feel at being infected with something like Hepatitis C or HIV as a result of totally unrelated treatment within the NHS”. Kind words perhaps, but for those like Sarah, who watched her dad suffer for much of her childhood, it’s understandably not enough.
“Many of those early campaigners, like my dad have died, but their determination and fight has been passed down to their children and their grandchildren.” she says. “If the Hillsborough inquiry taught us anything it is the truth will out.”