VICTIMS of the infected blood scandal have described feeling “emotional and nervous” as the final report into the worst treatment disaster in the history of the NHS is due to be published.
The Infected Blood Inquiry will conclude today after decades of “tireless” work by campaigners.
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Around 3,000 people have died and more than 30,000 infected with viruses like hepatitis C and HIV since the NHS used unsafe blood treatments in the 1970s, 80s and early 90s.
Many needed blood transfusions for accidents, in surgery or during childbirth, and patients with certain blood disorders were treated with donated blood plasma products or blood transfusions.
It has been estimated that one person dies as a result of infected blood every four days.
Those affected are expected to receive an apology from Rishi Sunak and be promised compensation up to £10billion.
The inquiry was first announced by former prime minister Theresa May in 2017, with the first official hearing held on April 20, 2019.
It is one of the largest ever UK public inquiries.
Some 374 people have given oral evidence, and the inquiry has received more than 5,000 witness statements and reviewed more than 100,000 documents.
The chairman of the inquiry, Sir Brian Langstaff, previously said that “wrongs were done at individual, collective and systemic levels”.
Campaigners have hailed the publication of the report as the “end of a 40-year fight”.
Suresh Vaghela, from Leicester, said he was feeling “nervous” ahead of the final report.
The 61-year-old started receiving contaminated Factor VIII blood product to treat his haemophilia when he was around 13.
He was told when he started university in 1983 that he had HIV and had two months to live.
In the early 1990s, he discovered he had also been infected with hepatitis C.
“We feel emotional at the moment in the sense that it’s like a 40-year-old fight, and it’s coming to an end and we’ve come to the end of our energy levels,” he said.
Mr Vaghela said he wanted a “meaningful apology”, decent compensation and for pharmaceutical companies “to pay for what they’ve done”.
Rosamund Cooper, a former IT consultant, said she was “really optimistic” for the inquiry’s final report, but that there is “no certainty” as to how the government will react.
The 50-year-old, from Dudley, West Midlands, was diagnosed with Von Willebrand disease, a bleeding disorder, when she was eight months old.
Aged 19, she found out she had been infected with hepatitis C as a result of her treatment.
“I do genuinely think that the report will vindicate all of the struggles that we’ve been through,” Ms Cooper said.
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Ade Goodyear was one of around 120 haemophiliac children infected with HIV and hepatitis through contaminated blood products at the specialist school, Treloar College, in the 1970s and 1980s.
At least 72 have since died – including four boys who were in the office with Ade when he was told he was HIV-positive and had just two or three years to live, at age 15.
Many never saw their 30th birthday.
Ade, from Alton, Hampshire, also lost two brothers to the scandal and told The Sun in 2021: “Every year, at Treloar’s reunion, there are so many faces missing – and they shouldn’t be.”
Steve Nicholls, 54, from Farnham, Surrey, left the school in 1983 and was mourning his first classmate just a year later.
By the late 1980s, he was hearing about pals who had died on a weekly basis.
“I dreaded the phone ringing, because you knew it was going to be about someone else who had passed away,” he said.
“We use the term Blood Brothers, because we became like brothers at Treloar’s, and to see your friends die so young is heartbreaking.
“The mental scars will never heal.”
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.
Rachel Halford, chief executive of the Hepatitis C Trust, said: “We would not be where we are today without the community’s decades of tireless campaigning for answers.
“We hope that today’s report marks the beginning of the end of this long campaign for justice for everyone who has been impacted by infected blood and blood products.”
Kate Burt, chief executive of the Haemophilia Society, added: “Radical change must result from this inquiry if we are to learn the lessons of the past and protect future generations from harm.”
And Richard Angell, chief executive of Terrence Higgins Trust, said: “The publication of the final Infected Blood Inquiry report is a seismic moment for those infected and affected by this scandal who have been vindicated but not yet compensated.
“For victims of the worst treatment disaster in the history of the NHS, who have been fighting for justice for almost five decades, the trauma never stops.”
Campaigners have been told that the compensation package from the government will be more than £10billion.
Some members of the infected blood community expect that ministers will announce so-called “tariffs” for compensation in the near future.
This could include how much people in certain groups are paid as compensation.
Up to 6,000 people with haemophilia and other bleeding disorders were infected with hepatitis, and 1,250 of these were co-infected with both hepatitis and HIV.
Of the group who were infected with both, only around 250 are still alive today.
‘Survivor’s guilt’
The sister of a popular local radio DJ who died after receiving a contaminated blood product has described how she still misses her brother almost 30 years after his death.
Amanda Patton’s brother Simon Cummings, a County Sound presenter, was infected with HIV through his treatment for haemophilia and died in 1996, aged 38.
“People say that time heals, but it doesn’t,” she said.
“What happened to him was so awful, he would have been 65.
“All those years he was denied, it’s all the ‘might have beens’ as well as everything else.”
Meanwhile, Martin Reid, from Insch, Aberdeenshire, has described the lifelong impact of being infected with hepatitis C.
He was infected with the virus as a child while receiving treatment for his haemophilia.
Mr Reid’s hepatitis was cleared in 2011, but he has been left with lasting effects from the virus, including anxiety and depression.
“There is something ironically morose about the fact that I tell people that I’m ‘one of the lucky ones’,” the dad-of-two, 44, said.
“They say: ‘You’ve got a disease that could have killed you’, but I say: ‘I wasn’t infected with HIV, like so many other people were, and I have lived to the age where I have been able to have a family, I am still here, so I do feel like one of the lucky ones.
“But I do feel a sense of survivor’s guilt – especially as the inquiry has been hearing so many harrowing and heartbreaking stories about people’s children being infected and dying at a very early age, or people being infected, never being told and subsequently going on to infect other members of their family.
“Through every strand of life, it’s there with you, it lives with you.
“There are so many things that are still with me, and will be with me until the day I die that are directly linked or have been caused by what has happened.
“In terms of my long term health, I feel very fatigued a lot, I suffer from insomnia, a lot of the health issues are mental health-related – I suffer from extreme anxiety.”
Mr Reid’s grandfather, who also had haemophilia, was also infected with hepatitis C. He died from cancer and hepatitis C complications aged 71.
The infected blood scandal in numbers
Tens of thousands of people were infected with contaminated blood between the 1970s and early 1990s – a scandal which has prompted one of the largest public inquiries in UK history.
Statisticians advising the Infected Blood Inquiry have come up with a number of figures about how many people have been infected, though they have stressed there is “considerable uncertainty about the conclusions”.
Commentators have suggested that the figures – particularly those around hepatitis C infections – should be seen as a “starting point”.
- Around 1,250 people with bleeding disorders such as haemophilia were infected with HIV through infected blood products.
- Some 80 to 100 people were infected with HIV as a result of a blood transfusion – which could have been given following an accident, during surgery, during childbirth or another medical procedure.
- Between 3,650 and 6,250 people with bleeding disorders were infected with hepatitis C – this includes 1,250 people who were co-infected with HIV and hepatitis C.
- Some 26,800 people were infected with hepatitis C as a result of having a blood transfusion – though statisticians said this number could vary anywhere between 21,300 and 38,800 people.
- Some 22,000 of these were deemed to be chronically infected as they survived more than six months after their transfusion.
- Among people who received hepatitis C as a result of a blood transfusion, 64% were women.
- Of the 26,800 hepatitis C infections which occurred as a result of a blood transfusion, 22,000 were among patients in England, 2,740 occurred in Scotland, 1,320 in Wales, and 730 patients were infected in Northern Ireland.
- Five people were infected with variant Creutzfeldt-Jakob disease. They all died.
- The figures do not include people who were “indirectly infected” – such as a partner who caught HIV from a loved one who had been given contaminated blood or a blood product.
- Statisticians said that it is not possible to estimate the numbers of hepatitis B virus infections with “reasonable accuracy”.
- It has since been estimated that 3,000 people have died as a result of the infections, while others live with ongoing side effects of infection.
Claire Dixon, 52, from Manchester, lost her mother, Nora Worthington, in 1993.
Mrs Worthington contracted HIV from infected blood during a transfusion in 1991, and died 18 months later.
“My mother was given three pints of blood for a perforated ulcer”, Mrs Dixon said, adding: “One of the pints was infected with HIV.”
“Before she passed away she said: ‘Please don’t let them get away with it.’ She had little cuttings out of the paper and realised other people, like children, had become infected”, Mrs Dixon said.
As a single parent, Mrs Worthington has not yet been recognised by the government for compensation.
Also waiting for compensation are parents Jan and Colin Smith.
Their son, also named Colin, died aged seven in 1990 after being infected with AIDS and hepatitis C.
They believe Colin, who was born with haemophilia and given Factor VII using the blood from prisoners, drug addicts and sex workers, was part of a “secret trial”.
His dad, who was shunned by his community for having an “AIDS kid”, told Sky News: “I think Colin was just unlucky enough to be born at the right time – newly diagnosed haemophiliac, never been treated.
“Which is what we were after because as documentation states they are cheaper than chimpanzees.
“You treat a chimp once, you can follow these children throughout their lives.”
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MP Dame Diana Johnson, who has been campaigning on behalf of victims for almost two decades, told BBC Breakfast this morning that in other countries such as France, ministers have been brought before the courts for prosecution.
“My concern is this has taken so very long to get to this point, some of the key players in this may well now have sadly died, so we’ll have to wait and see,” she said.
“But I’m hoping the police will be looking at what Sir Brian says and whether there is evidence that people will be prosecuted, if that is possible, after all this time.
“There has to be accountability for the actions that were taken, even if it was 30, 40, 50 years ago.”
Des Collins, senior partner at Collins Solicitors, which represents 1,500 victims, said the importance of the final report to victims of the scandal “cannot be overestimated”.
“They have spent years bravely telling their stories, campaigning and spurring collective action in order to get to this point,” he said.
“For some it has been 40 years since their lives were forever blighted or loved ones were lost in cruel circumstances.
“Several thousands, sadly, have not lived to see this day.”
Mr Collins described the publication of the report as the “day of truth”, adding: “They will finally achieve recognition of all they have experienced and will learn, as a matter of public record, how and why the infected blood scandal occurred.”
Speaking ahead of the final report, a government spokesperson said: “This was an appalling tragedy that never should have happened.
“We are clear that justice needs to be done and swiftly, which is why we have acted in amending the Victims and Prisoners Bill.
“This includes establishing a new body to deliver an Infected Blood Compensation Scheme, confirming the Government will make the required regulations for it within three months of royal assent, and that it will have all the funding needed to deliver compensation once they have identified the victims and assessed claims.
“In addition, we have included a statutory duty to provide additional interim payments to the estates of deceased infected people.
“We will continue to listen carefully to the community as we address this dreadful scandal.”
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What is haemophilia and Factor VIII?
Haemophilia is an inherited disorder where the blood does not clot properly.
Most people with the condition have a shortage of the protein that enables human blood to clot, known as Factor VIII.
In the 1970s, a new treatment was developed to replace the missing clotting agent, which was made from donated human blood plasma.
Manufacturers made the product by pooling plasma from tens of thousands of people – increasing the risk of the product containing blood infected with viruses including hepatitis and HIV.
Many patients welcomed this new treatment, which could be delivered by injection at home, as prior to its introduction patients required transfusions with plasma which had to be given in hospital.