TWO victims of the infected blood scandal say they are “blown away” by a landmark inquiry into its “chilling cover-up”.
Gene David and Janice Whitehorn are two of more than 30,000 people who contracted incurable blood diseases in the 1970s and 80s after receiving transfusions or blood products from the NHS.
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It has been estimated that one person dies as a result of infected blood every four days. Some 3,000 people have passed away in total.
A report into the “disaster” – described as the worst in NHS treatment history – found deliberate attempts were made to conceal what happened, including evidence of Whitehall officials destroying documents.
Sir Brian Langstaff, chair of the inquiry, concluded there had been a “catalogue of failures” which had “catastrophic” consequences, not only among people infected with contaminated blood and blood products, but also their loved ones.
“The scale of what happened is horrifying,” he said.
Victims and their families are now calling for those responsible to be held to account.
While they feel “validated and vindicated” by the findings, they feel justice should be served.
Gene, who spent decades not knowing how he caught HIV, said after listening to the findings at Westminster’s Central Hall: “It’s very emotional.
“I’m overwhelmed, and the feeling from within the room was very moving.
“The report went into incredible detail – more so than I expected. I was blown away.
“Sir Brian and his team went above and beyond to finally give us a voice.
“There’s a long way to go yet for justice but it feels like finally someone has asked the right questions on our behalf and dug into the truth to get us answers.
“It’s a huge relief. Collectively, that’s always been our goal. I’m confident this is just the beginning.”
Janice, who contracted hepatitis C at birth through her mum, is demanding accountability and an apology.
“I think criminal prosecutions could be the next step to hold people to account,” she said.
Huge ‘sense of relief’ that victims finally heard
By Julia Atherley, Home Affairs Correspondent
THE survivors and families of victims of the contaminated blood scandal have fought for decades for justice.
When Sir Brian Langstaff took to the stage at the Inquiry this afternoon the atmosphere was charged with a sense of relief that they had finally been listened to.
Filling Westminster Central Hall, the audience applauded the Inquiry Chair before he urged them to stop and said: “You are actually applauding the wrong people.
“The words come from you, and your stories.
“I want you please in a moment to give me an applause, a longer one if you will, to those who are really responsible for those that in this report.
“Look to the right, look to your left look in front.
“Those of you who can, turn and look behind you. Those are the people who have written this report.”
Flooding out of the hall after the landmark report was published, campaigners hugged each other and clung to pictures of their loved ones who died after being treated with infected blood.
After years of calling for a public inquiry into how the victims were treated they finally had their answers.
They spoke of feeling vindicated after the report concluded that the NHS and the Government conducted a “chilling” cover-up for decades thousands suffered.
“The government needs to be broken up and started again as clearly it’s not working.”
Janice added: “I feel validated and vindicated. I was worried the inquiry would be a let down – as we’ve been let down so much – but it’s a really good report.
“The main thing is it proves the government was covering it up and lying about it.
“We felt silly like our voices weren’t heard for so long but now people will finally believe us after all these years.
“I know the people behind the inquiry have worked hard behind the scenes to thoroughly represent us all.
“It has allowed a lot of the victims to come together and realise we don’t have to go through this alone.
“But it won’t repair my lack of trust in the system because this has showed me the people I’m meant to trust are liars.
“Let’s hope this is just the start and it opens the floodgates in a similar way to the Post Office inquiry.”
Gene’s story: ‘Routine tonsillectomy led to my HIV diagnosis – and my partner’s’
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Gene underwent a routine tonsillectomy aged 20 in July 1985 before having a blood transfusion after haemorrhaging and developing sepsis.
After spending a month at Charing Cross Hospital in Hammersmith, West London, he went about his daily life – until his partner was diagnosed with HIV in 1989.
Gene, now 58, also tested positive but was refused medication and given just six to 18 months to live.
The interior decorator, from Manchester, told The Sun: “I was performing in a band with a record contract and then life just immediately stopped.
NHS blood scandal: The report’s key findings
IN a damning seven-volume report, Chair of the Infected Blood Inquiry Sir Brian Langstaff concluded that MPs, doctors and the NHS conducted a “chilling cover-up
Key failures highlighted in the report include:
- A failure to act over risks linked to contaminated blood – some of which were known before the NHS was established in 1948.
- The slowness of the response to the scandal; for instance, it was apparent by mid-1982 that there was a risk that the cause of Aids could be transmitted by blood and blood products but the government failed to take steps to reduce that risk.
- Tests on blood were not introduced as quickly as they could have been.
- Patients and the wider public were given false reassurances.
- There were delays informing people about their infections – sometimes for years – and they were told in “insensitive” and “inappropriate” ways.
- Patients were “cruelly” told repeatedly that they had received the best treatment available.
- People with bleeding disorders were treated without proper consent and research was carried out on them without their knowledge.
- Children with bleeding disorders who attended Treloar College, where pupils with haemophilia were treated at an on-site NHS centre, were treated as “objects for research”. The report said these children were given “multiple, riskier” treatments. Other children with bleeding disorders were also given treatment “unnecessarily”.
- Regulatory failures, including the licensing of dangerous products, and failure to remove them from the market when concerns were raised.
- Instead of ensuring a sufficient supply of UK-made treatments for haemophilia, the NHS continued to import the blood clotting blood plasma treatment Factor VIII from the US – where manufacturers paid high-risk donors, including prison inmates and drug users. The UK blood services continued to collect blood donations from prisons until 1984.
- In terms of blood transfusions, blood donors were not screened properly and there were delays in blood screening. Too many transfusions were given when they were not necessarily needed.
“I was lucky in a sense being young and carefree but I went off the rails and was constantly partying – living like they were my last moments.
“When I look at old pictures of myself, I think that man died because my whole life was destroyed.”
But Gene lived to undergo his first course of treatment in 1993 – taking 27 tablets a day causing severe symptoms of diarrhoea, vomiting and night sweats.
He had seven more courses until 1997 when he went on a trial medication and others to beat his body’s growing immunity to the drugs.
The inquiry core participant only discovered the infected blood scandal when reading the news on it in 2017.
I want to feel empowered and get to the truth
Gene David
He hopes today’s report will allow victims access to medical records to give them the vital confirmation to feel some semblance of closure.
Gene, attending while supported by his partner of 20 years, said: “I found my GP notes but have spent the last seven years unsuccessfully trying to get my hospital, surgical, nursing and blood bank records.
“Each time I’m told they’ve been destroyed or lost. Most recently I was told they’re unavailable.
“It’s been a real struggle to get any information. I can only access my own medical records but I’ve been told there are a lot of other similar cases from that period.
“Initially there was the fear of not knowing but as I dug further it became more of a possibility. It’s a catch-22 situation.
“My mum would always say I got HIV through the blood transfusion from the post-tonsillectomy haemorrhage but I initially said it was ridiculous.
“Today is a big milestone for a lot of people in my situation. I’m hoping that it will give us the ability to access the information we need.
“We need confirmation and closure. I want to feel empowered and get to the truth.”
Janice’s story: ‘Doctors blamed my tiredness on being a teenager – I’d caught hep C from mum during birth’
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Janice was born in 1979 – eight years after mum Daphne Whitehorn got hepatitis C via blood transfusions for a kidney transplant.
Daphne, 73, only found out she had it during a check-up back at the Royal Free Hospital in Hampstead, North London, in 1991.
Daughter Janice, a wedding dress maker, said: “After mum’s diagnosis, I went to an STI clinic in Liverpool when I was at uni but it came back negative as they didn’t test for hepatitis C.
“When I was 19 I had chronic fatigue and couldn’t stay awake but doctors said it was just being a teenager.
What is the infected blood scandal?
THE contaminated blood scandal has been described as one of the worst in NHS history and stems from blood transfusions and blood-derived medicines used in the 1970s and 1980s.
These medical products were injected into patients, often children, who had blood disorders like haemophilia, which stops clotting and can cause severe bleeding.
Unlike regular blood donations, plasma products such as Factor VIII were often sourced from the United States and elsewhere and, as donors there could be paid to give blood, some donations came from high-risk people such as prostitutes and prisoners who are more likely to have blood diseases.
Tens of thousands of donations were mixed together for a single batch in some cases, but it only took one infected donor to contaminate an entire batch and infect patients.
At the time, the NHS had stopped paying donors for whole blood donations to reduce the risk but we could not make enough in Britain so they had to be imported.
As patients began to fall ill it was later discovered that thousands had been infected with HIV and hepatitis by the blood of poorly tested donors.
More than 2,900 people have died as a result of the scandal and tens of thousands are believed to have been directly infected or caught a virus from a relative or partner.
Campaigners say doctors and politicians ignored warnings about what would happen and then covered up their failings when patients began to fall ill.
Survivors and their families were entitled to £100,000 each in compensation in 2022 and more is expected after the publication of the full inquiry on May 20, 2024.
“I kept getting sick in my 20s and went to the doctor with mum but still didn’t do a blood test.
“After failing to conceive for five years after marriage, I was told over the phone that I had Hepatitis C around 2017.
“They said I wasn’t eligible for treatment but I pushed for it as I didn’t want to pass it onto my child like how I had got it.”
She took cancer treatment Pegasys – which worked for the first 12 weeks but caused severe side effects.
We need accountability. I would like an apology but it’s all too little too late
Janice Whitehorn
Janice, now 45, claims the cheaper antiviral injections destroyed her womb and put her through an early menopause.
She went to her MP with her mum to finally undergo suitable treatment together in 2017.
Janice, from Houghton Regis, Bedfordshire, counts herself lucky she was aware of the “unexploded timebomb” unlike others who died not knowing their blood had been infected.
The self-employed businesswoman said: “I appreciate there’s no one person responsible but we need accountability. I would like an apology but it’s all too little too late.
“There’s talk of prosecutions which would be appreciated but we really need awareness as it’s been covered up for so long.
“The victims in my mum’s generation were made to feel ashamed so no one wanted to talk about it due to the stigma.
“Now we have an affordable cure with little side effects so we need to test everyone and eradicate it like with Polio.
“It needs to be erased now. We’ve got the drugs so why are they waiting for more people to die without knowing?”.
Infected Blood Scandal Timeline: From 1953 to today
1953: The World Health Organisation (WHO) warns that dried plasma should be prepared from pools of between 10 to 20 donors to reduce the risk of contamination.
1978: The NHS is sourcing supply of factor concentrate, to replace the Factor VIII clotting agent in haemophiliacs, from overseas.
1983: The WHO and medical journal Lancet say people with haemophilia should be warned about the risks of using blood products.
1984: Heat-treated blood products, which have been deactivated of viruses, become available.
1989: The UK government provides financial support to people infected with HIV from contaminated blood products.
2004: The UK government launches a fund to provide people infected with hep C through contaminated blood products with financial support.
2016: The-prime minister David Cameron announces every victim of the NHS contaminated blood scandal will for the first time receive a regular annual support payment.
2017: Then-prime minister Theresa May announces there will be an independent public inquiry into the scandal.
2019: The inquiry begins hearing evidence from those infected affected by the scandal.
2020: Hearings are delayed by the pandemic.
2021: Then-health secretary Matt Hancock appears before the inquiry, saying the Government will pay compensation to people affected by the scandal if an ongoing inquiry recommends it.
2022: The Government announces that survivors and bereaved partners will be given compensation payments of £100,000.
2023: A second interim report is published that recommends the interim compensation scheme should be widened so more people – including orphaned children and parents who lost children – can be compensated.
2024: The inquiry publishes its final report.
Read the full infected blood inquiry timeline here.
Source: PA