Finally, people know we’re not conspiracy theorists. We’re not raving mad, and we haven’t been barking up the wrong tree. “Go away, live your lives, it was all a mistake,” is a refrain we infected blood campaigners and victims have heard for decades. But it turns out it wasn’t “just a mistake”, that more than 30,000 patients received blood infected with HIV and hepatitis C. And now, finally, the lies, the closing of ranks, and the blatant conspiracy to pervert justice for victims has been laid bare.
Brian Langstaff’s report is everything we have been saying for the last 40 years, packaged up by a high court judge and signed off in a public inquiry. His findings – that victims have been let down by “successive governments” who ignored warnings about contamination and engaged in a “cover-up” – are seismic.
If I had heard these things as a child living with HIV, perhaps I would have been less afraid to come out of the shadows. These viruses carry stigma. I hope that victims and their families will now feel able to own their experiences and shout proudly that they were wronged as part of the biggest treatment scandal in the history of the NHS.
When I was 16, I developed full-blown Aids. I was in and out of hospital for four years with infections including pneumonia. I lost a huge amount of weight and had a nasal gastric feeding tube. My parents were told by doctors on several occasions that they would have to consider letting me go because the doctors couldn’t keep treating me. Every infection threatened to kill me. When I look at my own children today, I think of how my parents must have felt knowing that they would have to tell me I had contracted HIV. I can’t imagine the worry they must have lived with.
I met my wife at a bereavement weekend for infected blood victims; her brother was a haemophiliac who died after being given infected blood. Our union is one happy thing to come out of the scandal, but it has continued to affect our family. To conceive our children, we were forced to undergo sperm-washing treatments and multiple rounds of IVF. Another layer of expense, stress and trauma to add to our lives.
I’m glad the impact on families has been recognised in the compensation scheme opened to victims today; this has been much anticipated and is long overdue. Victims will be able to apply, but also those indirectly affected – parents, siblings and children. The scheme looks promising but, as always, the devil is in the detail, and our work to make sure those affected the most are cared for is not yet done.
A lot of people in the community think criminal prosecutions should be the next consideration, and I tend to agree with them. Langstaff’s report only scratches the surface: we really need get into the nitty gritty of who exactly was to blame at each specific stage.
Initially, I felt responsibility should be placed squarely at the feet of the UK licensing authorities, which allowed US products into Britain. There was no doubt by the mid-1970s that hepatitis was being transmitted through blood products, and yet they continued to license those products. They must now answer questions.
And the former health secretary Kenneth Clarke must explain his role in saying that there was “no conclusive evidence that Aids is transmitted by blood products”. Wouldn’t you err on the side of caution when hearing warnings of that nature? His remarks to the inquiry clearly lacked respect for the victims. It was absolutely disgusting and re-traumatising for the whole community to watch him sit, arms folded, complaining about the questions being asked of him.
And then, of course, questions must be asked of the civil service and those civil servants who passed the wrong information to ministers over the years. There needs to be root and branch change in the civil service. And if something like this is not to happen again, we must put a deterrent in place. If that means criminal prosecutions and people going to prison, so be it.
Ultimately the responsibility for the delay in justice lies at the door of the prime minister. Rishi Sunak has apologised to victims, and I take that apology. I don’t think for a moment that he wrote the speech he delivered yesterday himself, but just the very fact that our prime minister has now stood up in parliament and exposed the governments of past and present for the wrongs they carried out is quite immense.
If you look around the world, you will see that many other countries put to bed their own blood scandals decades ago. If British victims like me had been recognised earlier, perhaps I could have done something other than campaigning with the time I have left. Justice delayed is justice denied, in this case. As time goes on, we lose more and more victims – but also those who could have been found to blame for this scandal.
After decades of living with these illnesses, I will never be the world’s strongest man. Treatment for hepatitis C was equivalent to long-term chemotherapy, and completely wrecked my body and mind. I’m on twice the recommended dose of antidepressants, and I probably will be for the rest of my life.
My story speaks to the devastation of this scandal because it is just one of many stories. Other people have had it just as bad, or even worse. After years of denial, distraction and diversion, it’s time to make things right.
Andy Evans is the chair of the Tainted Blood campaign group. As told to Lucy Pasha-Robinson
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