23 May 2024
For 20 years, between the 1970s and 1990s, thousands of innocent sick children were pumped with HIV, Hepatitis C and CJD – and it was covered up until this week. In Caroline Thain’s exclusive interview with a St Albans-based campaigner and victim, we reveal how her horrifying story is finally being heard and officially recognised…
A St Albans mum has revealed how the NHS recklessly gave her a potentially deadly infection when she was nine years old – because testing on children was cheaper than using chimpanzees.
As the tainted blood scandal and government cover-up has finally been outed this week, any apology and talk of payouts are only partially placating to Nicola Jones, 53, of Tanners Close.
Nicola received Hepatitis C when she was ‘treated’ with a blood product known as Factor VIII meant to help with her mild haemophilia – a condition which affects patients’ blood clotting.
Despite the Government knowing this infusion to be high-risk, and a suitable safe alternative being available, health bosses continued to push it into the veins of unsuspecting young patients.
The findings of the public inquiry this week exposed that treatment centres were told to keep using it on children because they were cheaper and more readily available than chimpanzees. The St Albans Times has seen and verified this document.
Since then, she has suffered breast cancer, Hepatitis C and lupus and continues to fear that she could die from the damage of Hepatitis C to her liver.
Nicola said she was not informed she had been given an infusion from a batch containing the life-threatening disease for several years – instead she was repeatedly told her symptoms were imaginary.
When she checked her own medical notes, the NHS had recorded her as being positive for Hepatitis C. She was in her 20s then, and a nurse told her that it might not start to affect her until she was in her 40s, which seemed like a long way off.
Nicky said: “I had a positive test, but they hid the truth and sat on that until 1995, when I found out they tested me as positive in 1991 and never told me. I was shocked because I knew I had been unwell for many years. But the nurse said I should think myself lucky that I didn’t get HIV [referring to thousands of the 30,000 other patients who were pumped with the same type of infusion, many of whom have since died from AIDS].”
Her two children, now aged 22 and 20, were repeatedly tested from birth without consent for HIV and Hepatitis C – she only found out more recently when she needed a fit to fly note from Great Ormond Street ahead of a family holiday abroad.
It is illegal to carry out tests without consent, so when Nicky discovered her children were routinely tested for Hepatitis C and HIV for years without her knowledge, she went to the police – who took it no further.
And if the NHS was so sure Nicky did not pick up HIV from their contaminated blood, why would they then frequently secretly test her children, who have never received blood products?
According to Nicky, some of those with the same treatment batch number were found to have contaminated HIV, and some tested negative: which is why they continued to test her children without her consent. Apparently, it could depend partly on the body’s own autoimmune response, as to whether a patient treated with an infected infusion went on to contract HIV.
Along with the unwanted devastating ‘free gifts’ given directly to Nicky by the government in childhood, she also has the worry of being classed as high risk for CJD, or mad cow disease as the terminal degenerative brain disease is sometimes referred.
Nicky said: “I got a letter from the Department of Health when I was five months’ pregnant informing me that I must declare that I am high risk for CJD for public health purposes. Terrifying!”
The ignorant cultural narrative in the 1980s and 1990s was that HIV could be spread through sharing drinks cups, sitting on toilet seats or kissing, which made the experience for infected victims steeped in social stigma, shame and vulnerable to bullying. The secrecy families felt they had to foster, helped prevent the blood scandal from being highlighted publicly.
Nicky explained: “When I was younger, I didn’t like to say I had haemophilia, due to the stigma of HIV in the 1980s and everyone assuming we were HIV positive. Then when I found out they had given me Hepatitis C, it wasn’t something I told people. I am beyond caring about stigma now.
“I don’t worry about HIV, as I don’t think I have it. It was terrible for children and their families being told they had HIV. I know lots of amazing men who died from AIDS from tainted blood products.
“Their story is soul destroying. They were called into their school office and told one by one, whether they were HIV positive or not.”
At around that same time, [the former] PM Margaret Thatcher was using phrases such as ’No good person dies of AIDS’.
It took decades for this astonishingly catastrophic NHS and government failing to come to light, and only after decades of Nicky and fellow victims spending time and energy many did not have, forcing authorities to be held to account, through extensively tirelessly battling for some kind of justice.
Nicky said: “I am relieved to be vindicated from the doctors believing it was all in my head when I became poorly in the 1980s, my parents being vindicated of being neurotic parents, when all along the haemophilia centre knew I had Hepatitis C.
“I suffer now with lupus anticoagulation, due to having chronic hepatitis and the possibility that my cancer was due to being exposed to multiple viruses through my Factor VIII treatment at the age of nine.
“What upsets me most is the hepatitis and how it held me back and impacted my life and my family’s lives. It took all my strength to work and get by, and on my days off work I was only fit for my bed and suffered endlessly.”
Every four days, someone affected by tainted Factor VIII dies. How many more will die before they see a penny, which will only go some way to helping heal the lifelong wounds anyway?
More than 700 affected Factor VIII recipients have died since the start of the inquiry alone.
Nicky described how compelled she is to speak out: “I have been going public with all of this, as I want people to know what this country did to us. I have not been treated as a whole person by health professionals and the health problems I have now are due to the multiple exposure of contaminated infusions.
“I just want to ensure our future generations are safeguarded from anything like that happening again. I don’t trust any one of them.”
After all this stress, you might imagine Nicky fancied a drink to celebrate her years of campaigning turning to success and the relief of finally being heard, across Parliament and media this week.
She told us: “All I wanted yesterday was a stiff drink, but I don’t drink because I know my liver is already under pressure because of the tainted blood. You can die from Hepatitis C, as you can go on to develop cirrhosis of the liver.
“Sadly, we are not all being followed up and regularly checked, which is a recommendation Sir Brian [Langstaff] has recently made in his inquiry report. Some people have been accused of alcohol abuse, when their cirrhosis was due to the Hepatitis C in the infected Factor VIII.”
Another added worry is that the medical notes of Nicky and fellow victims were destroyed or have gone missing over the decades, and “the thought of having to prove what happened panics” her.
She hopes this won’t be the case. But it’s easy to see why Nicky, the thousands directly affected and all of us who rely on the struggling NHS might foster feelings of mistrust, for a once respected institution that is rapidly crumbling away.
A cynic might even briefly consider that the Government could use these latest public destabilising revelations to bolster up political support for its privatisation bid.
And for now, justice is edging closer to being partly done for the failed blood scandal victims and their bereaved families – but at what cost?
