‘People must be punished for what they did’, beg victims of infected blood scandal after ‘seismic’ report
Heartbroken families plead for prosecutions and compensation after almost 3,000 deaths and more than 30,000 infections
VICTIMS of the contaminated blood scandal have said they were lied to, and condemned cover-ups and denials as “disgraceful”.
More than 30,000 people were infected with deadly viruses while they were receiving NHS care between the 1970s and the early 1990s.
A landmark inquiry today ruled that politicians, doctors and the health service lied for decades about the risks of taking blood from prisoners and drug addicts.
Thousands of patients contracted HIV and hepatitis due to medical blunders.
Former IT consultant Rosamund Cooper, 50, described the “deliberate deceptions” as “disgraceful”.
She was diagnosed with Von Willebrand disease, a bleeding disorder, when she was eight months old, and found out she had been infected with hepatitis C when she was 19.
Ms Cooper, from Dudley, West Midlands, said: “I think one of the key things for me, which I have seen in what I’ve read so far, is the complete lack of transparency, the lack of candour, the lack of people taking account for actions that have harmed people, so decisions were made, people were harmed, but that was not accepted, that was hidden.
“We were lied to about that – we were told it was accidental, we were told people didn’t know when the decisions made were the best possible at the time.
“It’s showing that that’s not the case, and that people were covering things up, denying things, hiding things from us, which is disgraceful. That never needs to happen again.”
Ms Cooper said patient safety was “put second to cost” in the “appalling” situation which spanned decades, adding: “That is the reason why we’ve been fighting all this time, all of my life as an infected person has been spent battling and I’m exhausted, and I feel like this finally, is somebody listening to what we’ve been through.”
Mark Ward, 55, born with “severe” haemophilia, was co-infected with HIV and hepatitis C after receiving contaminated blood products.
He said he had been treated “terribly” over the years.
Calling the report vindicating, he said: “Knowing that I’ve gone from being a troublemaker and conspiracy theorist and a liar to having a High Court judge say ‘you were right’, and now all those people out there who are on the wrong side of history, I shall be waiting for their apologies.
“They can come to me and us and say ‘we’re sorry’.”
Mr Ward, who is an LGBT ambassador for The Haemophilia Society, said prosecutions need to happen.
“I think justice has to be seen to be done and justice comes in many different forms,” he added.
“Yes, there’s compensation. Yes, there should be an apology and I think it should be done properly, not just, you know, someone stand up and say, ‘Oh, we’re sorry’ because everyone could just say that.
“But for me, prosecutions have to now happen, because the people who were responsible to care for the nation really failed so significantly and so many lives were lost unnecessarily.
“They can’t be allowed to just walk by go ‘yeah, nice report’ and disappear into the sunset.
“There has to be justice, and the only way justice can be done is people see that they have been punished for what they did.”
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.
Jason Evans, who started the Factor 8 campaign group in 2016, attended his first campaign meeting aged one when his father, infected with HIV and hepatitis C after receiving the Factor VIII blood product, took him to meet their MP to seek advice on potential compensation.
The 34-year-old, from Coventry, has few memories of his dad Jonathan, who died when he was just four years old.
Mr Evans said the inquiry’s final report meant the “fight for truth is over” but that “no amount of truth” could help those who had suffered emotional trauma and physical illness.
He said that, for him, the key finding of the report is that commercial Factor VIII should “never have been licensed”, and that if that had been the case, his father would still be alive.
“This was avoidable,” he added.
When asked how he thought his dad would feel about the report, Mr Evans said: “Honestly, I think for those who were infected and are still alive, whilst today does bring an end to that search for answers, the physical damage is done.
“For me, it’s the emotional trauma that was suffered over all those years, but for people who suffered the horrendous physical conditions as a result of hepatitis C and HIV, I’m not sure – there’s no amount of truth that can help that.”
Des Collins, senior partner at Collins Solicitors, which represents 1,500 victims, said he thought his clients would be feeling an “overwhelming sadness” now that the report has been published.
The scandal has been described as the worst treatment disaster in the history of the NHS.
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 this afternoon and be promised compensation up to £10billion.
‘Subtle, pervasive and chilling cover-up’
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 gave oral evidence, and the inquiry received more than 5,000 witness statements and reviewed more than 100,000 documents.
The chairman of the inquiry, Sir Brian Langstaff, said politicians, doctors and the NHS conducted a “subtle, pervasive and chilling” cover-up.
Campaigners hailed the publication of the report as the “end of a 40-year fight”.
Andy Evans, chairman of the Tainted Blood campaign group, told a press conference that it was a “momentous day”.
“Sometimes we felt like we were shouting into the wind during the last 40 years, but today proves that it can happen in the UK and I just feel validated and vindicated by Sir Brian and his report,” he said.
“We have been gaslight for generations. This report today brings an end to that and it looks to the future and says that this cannot continue, this ethos of denial and cover-up.
“The duty of care for candour has to be reviewed going forward so this cannot happen again.”
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”.
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.”
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
Richard Angell
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 revealed the lifelong impact of being infected with hepatitis C.
He was infected with the virus as a child while receiving treatment for his haemophilia.
It was cleared in 2011, but Mr Reid 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 : “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.”
Others fighting for justice include Olympian Sharron Davies and interior decorator Gene David.
Swimmer Sharron, 61, broke down in tears on Good Morning Britain as she told how her mother had developed liver cancer after being given contaminated blood during an operation.
She said: “This is scandal after scandal and it must stop.”
Meanwhile, Gene spent decades not knowing how he caught HIV. He hopes today’s inquiry will help him “get to the truth”.
Gene, from Manchester, underwent a routine tonsillectomy aged 20 in July 1985 before having a blood transfusion after haemorrhaging and developing sepsis.
After spending a month at the 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.
When I look at old pictures of myself, I think that man died because my whole life was destroyed
Gene David
He told The Sun: “I was performing in a band with a record contract and then life just immediately stopped.
“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.
He hopes today’s report will allow victims access to medical records to give them the vital confirmation to feel some semblance of closure.
Janice Whitehorn, a wedding dress maker who contracted hepatitis C at birth through her mum, is also demanding accountability and an apology.
Janice was born in 1979 – eight years after her mother Daphne contracted the virus via blood transfusions for a kidney transplant.
However, Daphne, 73, only found out she had it during a 1991 check-up at the Royal Free Hospital in Hampstead, North London.
Janice said: “When I was 19 I had chronic fatigue and couldn’t stay awake but doctors said it was just being a teenager.
“I kept getting sick in my 20s and went to the doctor with mum but still didn’t get to do a blood test.
“After failing to conceive for five years after marriage, I was finally told over the phone that I had Hepatitis C around 2017.”
She took cancer treatment Pegasys – which worked for the first 12 weeks but caused severe side effects.
Janice, now 45, claims the cheaper antiviral injections destroyed her womb and put her through early menopause.
She went through her MP with her mum to finally undergo suitable treatment together in 2017 – and received a £100,000 compensation payout.
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?”.
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.”
How those responsible could be held to account
The slow response to the infected blood scandal means that many of those responsible will never be held to account, victims of the disaster have said.
The chances of corporate manslaughter charges are “extremely remote”, according to lawyers.
Clive Smith, chairman of The Haemophilia Society and also a criminal barrister, told a press conference in Westminster: “One of the aspects that, sadly, the delay has caused is the fact that there are doctors out there who should have been prosecuted for manslaughter, gross negligence manslaughter, doctors who were testing their patients for HIV without consent, not telling them about their infections.
“Those people should have been in the dock for gross negligence manslaughter.
“Sadly, because of the delay, that’s one of the consequences that so many people will not see justice as a result.”
Andy Evans, chairman of the Tainted Blood campaign group, said: “This has gone on for so long now that people that were around at the time will be very hard to track down if they’re even still alive.
“Justice delayed really is, in this case, justice denied.”
Public inquiries are prohibited from making any recommendations about prosecutions but other countries affected by the scandal have seen ministers brought before the courts.
In the UK, corporate manslaughter prosecutions are less likely to happen, according to Ben Harrison, head of public law at Milners, which represents core participants in the inquiry.
He said: “First and foremost, corporate manslaughter is governed by 2007 legislation which does not apply retrospectively to a time when Crown Immunity existed for any such offence; the time at which so many were tragically and fatally infected.
“I think the chances of any form of corporate manslaughter investigation taking place are extremely remote.
“Things are less clear-cut in terms of individual offences, for instance, whether assaults have been committed, but it will take some time before we are able to establish this.
“We must also bear in mind that the actions which led to the infection of our clients took place decades ago and many of those who may have been guilty of an offence are now likely dead or unfit to stand trial.”