It has been called the “worst treatment disaster” in the history of the NHS – yet decades on, victims and their families are still left desperately vying to seek justice.
From 1970 until the early 1990s, an estimated 30,000 people across the UK were unknowingly involved in a scandal that was until recently buried for decades. Most victims had hereditary bleeding disorder haemophilia – whereby a person’s blood doesn’t clot properly – and were reassured that a new blood product, known as Factor VIII, would give them a better chance at a normal life.
But the treatment instead had a catastrophic effect, seeing some 3,000 dead, and lives ruined by grief, fear, and mistrust. For those still living, their anger at the Government’s handling of the tragedy is palpable.
A vast number of patients using Factor VIII contracted Hepatitis C or HIV after blood was imported from high-risk donors in the US, including prostitutes, drug addicts, alcoholics, and prisoners. Many went on to accidentally infect partners and children, with officials estimating another 27,000 patients may have been infected with hepatitis without ever being identified.
Similarly to the Post Office scandal, campaigners have called upon the Government to take action for years, and finally, on May 20, the long-awaited report by the Infected Blood Inquiry exposed the lies and deceit, prompting an apology by Prime Minister Rishi Sunak. The Mirror hears from just some of the victims and campaigners who are still left waiting for answers…
A life of being treated ‘with disdain’
The youngest of four children, Roger Newman, now 55, felt “really different” as a primary school pupil in Maidstone. He and his older brother were born with severe haemophilia, making them prone to internal, and at times, external bleeding. Joint pain and inflammation meant they often needed time off and were regularly in the hospital.
Roger, born in 1968, vividly recalls the nosebleeds he suffered, as well as the crutches he needed when suffering internal bleeding in his ankles and knees. Physical contact sports were out of the question, and his headmaster even told other pupils they ‘mustn’t ever get into a fight’ with the brothers.
Roger told the Mirror: “I just wanted to be like other kids.” Roger’s mother dedicated her life to her sons, driving them up to London once or twice a week for treatment to help control their bleeding. Until the early 70s, the boys were treated with Cryoprecipitated Antihemophilic Factor – known as cryo – a portion of plasma taken from a single blood donation rich in clotting factors, usually administered in a hospital.
In the late 70s, the family was informed of Factor VIII, a ‘miracle treatment’ from America that could be administered at home. Roger recalled: “It was really effective, and it meant, for a lot of people, they thought that we’d live slightly more normal lives.”
Instead of coming from a single blood donation, Factor VIII was a medicinal powder product produced from pooled plasma taken from as many as 60,000 paid donors. Roger’s mother was ‘quite nervous’ at first when learning to inject her sons via intravenous injections, but got the hang of it. Little did the family know then that Factor VIII posed a more or less 100 per cent chance of getting Hepatitis C and/or HIV.
Sir John Major was last year criticised after describing contaminated blood victims as having “incredibly bad luck.” Danielle Holliday of Collins Solicitors, which represents 1500 victims and families impacted by the scandal, told the Mirror: “They had virtually 100 per cent chance of getting Hepatitis C and/or HIV. It wasn’t bad luck. When you’ve got one in a million chance or one in 50,000 chance, that’s bad luck.”
The Department of Health had been warned about buying blood products abroad, due to the much-increased risk of viruses, under advice given by the World Health Organisation (WHO) in 1953 – two decades before the Department of Health placed central contracts for Factor VIII in 1973. Roger explained: “When people donate blood for money, you tend to get people who are in a very desperate situation, and as it turned out, unknown to us, all of the blood that was being sourced for this new treatment came from very, very high-risk groups, including prostitutes, drug addicts, alcoholics, and prisoners.”
From the mid-70s onwards, haemophilia centres across the country began to report hepatitis outbreaks. Roger was just nine or 10 years old was he was infected with Hepatitis B, which left him jaundiced, and unable to get out of bed due to extreme lethargy.
Roger said: “I remember being on holiday, and I couldn’t do anything so [my parents] had to pick me up and carry me around. I think that was the first time in my life where I also felt this sense of kind of feeling dirty. I was told that I mustn’t share my drinks with anyone, any of my friends. I didn’t fully understand why, but it just left me feeling contaminated and different.”
When he was 15, Roger’s doctor rang his mother to inform her that both sons had tested HIV positive, which she opted to deliver herself. “Haemophiliacs were dying really quickly. There was a lot of hysteria in the press as well, and stories being published about people with AIDs being sent to an island, and it felt like being a modern-day leper, being in that situation,” Roger told the Mirror.
He added: “I think the impact of living with it, knowing that you’ve got something deadly inside you that could contaminate someone else. If I ever thought about relationships or girlfriends, that was scary, and the thought of having to explain to someone left me really distressed.”
Then in his early 20s, he learned he’d been infected yet again, this time with Hepatitis C. This infection also proved “really deadly”, and Roger and his brother had to endure “some pretty horrific treatment”.
He recalls the “anger and resentment” he felt while receiving treatment at London’s St Thomas’ Hospital, which overlooks the Houses of Parliament. He continued: “Ken Clarke, the health minister at the time, was so arrogant in his defence that there was no evidence to prove a link between these blood products and HIV, and yet people were dying.”
Reflecting on this disparity over the course of his life, Roger, whose brother, 59, has almost died twice from being critically ill with HIV/Aids, added: “We’re still treated with disdain, even today.” He says that when he meets new people, or even talks with friends and explains his situation to health professionals, he is often met with shock and disbelief.
He has been quizzed in the past, as if they believe he is spouting some sort of conspiracy theory, which Roger says is “exhausting”. But following the Infected Blood Inquiry final report, published on Monday, May 20, Roger felt an overwhelming sense that his name had been cleared.
“It was a very powerful and very emotional day,” he said. “The main thing I felt was vindicated, for all these years. The damning information in the report, quite a lot of it was known to us over the years. But it was all suppressed, we weren’t allowed to talk about it, no one really believed us.
“I am forever thankful for Sir Brian Langstaff and the inquiry team”. At the same time, Roger said there was understandable sadness. “There was so much awareness of the loss and the pain that has been experienced amongst us as a community,” he explained. “Even though I’m still alive, your sense of mortality is really pushed in your face… one chap who gave evidence literally passed away five weeks before the findings were reported.
“It feels a bit of a hollow victory as so many victims haven’t lived to attend. We knew all the facts but to have the facts stated in public with such clarity and authority was very surreal and very welcome.”
He hopes the report raises awareness of the tragedy, particularly among those in the healthcare profession. When he attends haemophilia clinics, where he receives synthetic injections, time and time again he is forced to explain how he became injected to many medics who have never even heard about what happened.
“I hope clinicians and the NHS start to get the full picture,” he said. “We’re hoping that as part of the recommendations, anyone that works in the NHS will receive training about this knowledge so that when they meet people like us, they’ll already know the backstory.”
Living with HIV means Roger, who takes daily antiretrovirals, plans in terms of “the next few years, maybe five years at a push”. He also can never get life insurance, meaning his wife wouldn’t get any financial support after his death, and he has never bothered with a pension.
Now a professional therapist, Roger is still undergoing therapy himself to deal with all he’s endured, and the current inquiry has stirred up painful memories. Although he is one of the victims who received a £100,000 interim payment when the inquiry interim report was published, more than two-thirds of those affected have yet to receive a penny.
‘Illustrative figures’ published in the Infected Blood Compensation Authority section of the Government website show “the compensation award that an infected person living with a single infection or co-infection may expect to receive.” The documents say that people living with an HIV infection as a result of the scandal could receive between £2.2 million and £2.6 million.
Payments for people living with hepatitis vary from £35,500 for an “acute” infection up to £1,557,000 for the most severe illnesses caused by the virus, according to the figures. People infected with both viruses could be paid up to £2.7 million, the tables show, which would include Roger.
In the meantime, some victims will receive a £210,000 interim payment before the end of the summer while the final compensation programme is set up, Cabinet Office minister John Glen said. He said the first victims would receive their final payments by the end of the year as he apologised for the horrendous injustice they suffered.
Roger, who hasn’t yet received any personal correspondence outlining his final compensation sum, said: “It’s extremely helpful to have some financial security and to know I’m not going to leave debts, mortgage and things like this. But if we’d had this 30 years ago, it could have substantially changed our lives for the better.
“It will never make up for what happened and can never in any way repair the damage both psychologically as well as physically. If you’re not here or you’re very ill, you can’t really enjoy the money. So it’s tinted with sadness and a realisation that my health is still compromised. I still live with a sense of dread every time I have a letter come through the door that looks like it’s coming from the hospital or even a private number on my telephone in case it’s my consultant with some bad news or further tests I’ve got to do.
“It doesn’t feel like a resounding victory, in fact, if anything, I initially fell quite flat, I think just because there was so much emotion.” Roger also worries that some victims could be worse off with compensation.
Currently, through the McFarlane Trust, he says people like him are receiving monthly support payments, which were set up to help victims for the rest of their lives. He fears that for some, this being potentially swapped with a payout could leave them in a worse position, and has called for clarity.
“The words have to be matched by action and things have to be resolved quickly, so that people can actually get some sense of justice and recompense,” he asserted. “I’m not 100 per cent confident. I am more than I have been. But I really and I hope with all my heart that everyone gets a fair payment. We are keen to keep fighting until they get that. Justice won’t have been served until we’ve had the money and the recommendations implemented.”
Fun-loving brother taken too soon
Daniella Edgerton, 59, was very close to her younger brother Russell. Originally from Sheffield, the siblings moved to Belfast when Daniella was five and Russell was three, along with their mum, aunt, and two cousins. Russell was diagnosed with haemophilia as a baby, and their mother was fiercely protective of him. Daniella clearly remembers her shouting after him, ‘You’re not allowed to play football!’ and ‘You’re not allowed to climb trees!’, fearful of him falling.
Shedding light on her fun, popular brother’s spirited nature, Daniella shared: “Needless to say, Russ did play football and climb trees you know, and even when he was on crutches he was really fast. People used to laugh when he was on the crutches, at how fast he could go.” Russell was given Cryo for his bleeds until the early 1980s when he began receiving Factor VIII.
When the family was informed of Russell’s HIV diagnosis in 1985, when he was just 18, doctors told them not to share toothbrushes or touch his blood.
Daniella felt as though they were being instructed to ‘stay miles away from him if he was bleeding’. She said: “We were just really over-warned, almost to the point of ‘don’t hug’. They just made it feel as though he was an untouchable. And I think they made him feel like an untouchable.”
Russell had to tell any prospective partner about his condition, and Daniella believes this ‘put him off’ romantic relationships. Although he did have ‘crushes on a few women’, he never had a steady girlfriend, and Daniella believes he ‘didn’t want to have to burden the women’.
A multi-talented person, Russell was fascinated by fossils and was a keen stargazer. Daniella believes he would have become a scientist, had things been different, specialising in astronomy or birds. His quirky purchase of a hearse, that he would drive around in, inspired the song The Old Black Hearse, by folk singer Charlie McGettigan.
Remembering Russell as ‘full of warmth and life’, Daniella said: “He had a lot to look forward to. Yes, he was in and out of hospital, he was in pain and worried, but he wanted to live the life he was given to the best of his ability and not let it send him down. He also had a brain haemorrhage as well and he got epilepsy after that, but he just wouldn’t let anything stop him.”
Every year, The Haemophiliacs Society would allow the family to stay at Kelly’s Caravan Park in Londonderry, and it was during one of these summer days, when Russell was around 19, that his usually cheerful demeanour slipped. Daniella shared: “I said, ‘It’s great down here, isn’t it?’ And he said, ‘Yeah it would be great to get down again next summer, if I’m here’. I think that’s the first time I heard him speak and say what his fears were and say that he might not be here. He would never say that.”
Russell’s health declined toward the end of his life. He spent around five to six months in hospital after developing thrush in his throat, which “turned really nasty”, and “just seemed to get worse and worse”. On August 1, 1994, Russell died at the age of 27, just five months after Daniella gave birth to her first child.
Although Russell’s illness had been ‘hanging over’ her for so long, his death still came as a great shock. Daniella left her job at a women’s centre to become a stay-at-home mum. She said: “It sort of made me realise how precious it was to stay with the child because I then had a very unhealthy fear of loss.” She also decided to have three children, so that none of them would be left behind should something happen.
Victims and families were initially told they would learn of the findings in autumn 2023, however, this date was pushed back until March before being delayed again to May 20, 2024. This follows decades of victims feeling forgotten about, with many believing they weren’t even “a whisper” on the government’s lips until the inquiry.
In 1975, then Health Minister, Dr David Owen, announced that funds had been allocated for the UK to become ‘self-sufficient’ when it came to blood products, however, this was never actioned. Margaret Thatcher then came into power and denied an investigation, setting a precedent for those who came after her. Indeed, it wasn’t until 2017, under Theresa May that an inquiry was finally announced.
When Daniella picked up a copy of the report on May 20 and opened it, she burst into floods of tears. “It was relief. It was a good day, there was a sense of being heard, but there was also a sense that justice hasn’t quite been reached and there never will be.
“There just can’t be, a lot of people knew the truth and it has had to take victims made to fight to see an apology. I feel really strange and exhausted from it all.”
Daniella says that Mr Sunak just so happens to be the man in power at the time of the publication, and has been used as a scapegoat. But she was left “distraught’ after his decision to announce a General Election just two days later.
“Everyone’s focus is now going to be on who is going to run. The Government has said they will do all they can but nothing else matters when campaigning starts. I just find it crazy that the speech from Sunak was given and then literally the next day he runs, he’s off.
“He could have reassured people and he could have done that better. He delivered the letter and then ran, leaving it to someone else. We’ve had no cooling off period, no time to heal.” Alongside other campaigners, the sister called for the Government to employ a body to work over the summer on the promised compensation scheme, with Parliament soon set to dissolve.
However since speaking with the Mirror, Parliament has backed the law required to set up the independent Infected Blood Compensation Authority – the Victims and Prisoners Bill, before shutting down for the election on July 4. Cabinet Office minister John Glen announced that family members of those infected would be eligible for compensation too.
Illustrative figures show how much family members may expect to receive by way of compensation. For example, the partner of someone infected with HIV who is still alive today could receive around £110,000, while a child could get £55,000, and siblings could receive £30,000.
Like Roger, Daniella has also asked for reassurance for those already receiving support payments, along with clarity on the figures she has seen being thrown about. The mum, who says she has suffered mentally and physically following her brother’s early death, says she hasn’t yet received any personal correspondence regarding her compensation over email or in the post.
“The words were brilliant and meant a lot, but are they going to be fulfilled? There seem to be all words, all talk, and a lot of confusion. The whole community is confused, it’s all fairly cloudy. I’ve had no notification on what my compensation might be,” she said. When probed on how much she would expect, Daniella solemnly explained: “I don’t want to sound ungrateful, but choosing to hold paper in one hand and holding my brother’s hand in the other, there is no solace or comfort in it.
“It isn’t a replacement of a life and I am having trouble, depression, and it’s not going to make me feel better. It’s not healing. I do have a family to look after and I can’t put my mind on an amount, but I have heard the figure £30,000 for a sibling and I gasped at how little it is because my whole life has taken a turn. It haunts me.”
Through exhaustion, Daniella hasn’t had time to process or read the report in full, however after flicking through it, much of the evidence upset her. “They knew the dangers working with blood,” she began, before highlighting one piece of evidence that particularly stood out for her.
“There was a letter in 1975 written to doctors here to tell them not to use this product,” she continued. In shock, she questioned: “How have the pharmaceutical companies been able to be protected throughout all of this? It isn’t a worry about money with them because they’re rolling in it. They should be held accountable and I don’t understand how they are allowed to hide behind the Government. And Lord Clark should have whatever he’s been given, knighthoods, to be taken off him, he shouldn’t have them.”
When the issue of the infected blood scandal came up in a House of Commons meeting chaired by Andy Burnham, Des Collins, Senior Partner of Collins Solicitors, legal adviser to over 1500 victims of the infected blood scandal, had initially assumed, like many, that it had ‘all been dealt with years ago’. Des reflected: “The moral of the story is ‘if you bury it for long enough and deep enough, perhaps no-one will ever find it’, That’s where we were with this.”
Following the publication of the final report in the Infected Blood Inquiry, Mr Collins said author Sir Brian Langstaff’s has made the community ‘proud’. “His report is everything we were hoping for,” he said. “It talks of wrongs committed systemically, collectively and individually. It names names and identifies where opportunities were missed and mistakes made.
“It confirms there was indeed a cover up and that documents were deliberately destroyed. It is notably critical of the Government’s behaviour in the last year by insisting on waiting for the final report before working on a scheme of redress. Sir Brian has also taken the unusual step of keeping the inquiry open whilst he sees the extent to which the government responds, which will be particularly welcomed by my clients.
“Clearly we still need to delve into all the detail given it’s a lengthy report. However, from what I have read so far, Sir Brian and his team have delivered a thorough, no-holds-barred, hard-hitting report. On behalf of my clients and all the community, I would like to express sincere gratitude and thanks for his and his team’s tireless work which means more to the community than the Inquiry team can ever know.
“While there is still much work to be done on our clients’ behalf, for now, we simply join them in acknowledging this moment – their day of truth and their relief at recognition at last.” Speaking with the Mirror, he added: “Infected blood victims deserve justice. That means a fulsome apology as well as financial compensation, although these can never make up for what the community has endured.
“Recompense must include a new duty of candour for the civil service. Equally as important, we need lessons to be learned from both our experiences and that of the Post Office victims so that cover-ups and denials on the scale we have seen can never happen again.”
Talking of Paymaster General John Glen MP’s statement to the House of Commons about the proposed Government compensation scheme, Mr Collins said it was a step in the right direction, but still has his reservations given they hadn’t responded to the compensation recommendations previously.
“The fact that the Government received this two years ago and has wasted valuable time in adopting his suggested framework is, of course, not lost on victims,” he continued. “Why the promised further consultation has not happened sooner is also bewildering, but better late than never.
“Whilst the additional interim payment for those infected is, of course, welcomed, many of our bereaved families, who have to date received nothing, are extremely disappointed that there is no information as to how the recently promised interim payment of £100,000 to be paid to estates may be claimed.
“…Other Government compensation schemes, notably for Post Office and Windrush victims, have been flawed in execution, due to overly complicated, bureaucratic administrative requirements and a lack of appropriate support. For example, an insistence that victims supply evidence which is now unobtainable or has long since been destroyed, in order to access funds. We sincerely hope John Glen’s words about flexibility and swift delivery are indeed what victims experience in practice and we will be on hand to advise and guide clients through any access challenges to ensure they get the compensation to which they are entitled.”
Earlier in the year, ITV announced that it had given the go-ahead to a drama about the infected blood scandal, after the success of the channel’s series about Post Office workers fighting for justice. Peter Moffat – who won two Baftas for the BBC series Criminal Justice and also created the screenplay for the Netflix film Scoop, about the Duke of York’s disastrous Newsnight interview – will write the series.
Campaigners have welcomed the commission but hope the creators will remain faithful to the facts and stories. Mr Collins added: “We have long been approached by documentary-makers but believe this particular series will refocus public attention on the tragedy of the infected blood scandal,” he added.
“It will expose much of what our clients have endured, not only emotionally and health-wise, but also in terms of shoddy treatment by government, in their decades-long battle for justice during which too many lives have unnecessarily been lost.
“Viewers won’t fail to be moved by this compelling story of the worst treatment scandal in NHS history. Sadly, it remains a devastating reality for many. We live in hope that, unlike the Post Office victims, it won’t take a TV drama to air before justice and compensation are secured for our clients and the whole infected blood community.”
What happened?
In 1982, the US reported the first death of a man with haemophilia who’d been infected by AIDS. Other warnings followed in 1983 in The Lancet and from the WHO, stating that haemophilia patients should be warned of the risks.
At this time, The Haemophilia Society (THS) released statements reassuring those with bleeding disorders that Factor VIII treatments were safe. The organisation later “apologised unreservedly” for these reassurances, which “while well-intentioned and based on expert advice, have subsequently been shown to be damaging to the community and false”
The British government, as well as leading clinicians, failed to heed warnings and didn’t take appropriate action to switch back to safer products. Meanwhile, as per The Haemophilia Society (THS), pharmaceutical companies and clinicians also did not appropriately inform patients about the risks. As chair of the inquiry, Sir Brian Langstaff, put it when handing down recommendations: “Wrongs were done at individual, collective, and systematic levels.”
It only took one contaminated sample to infect the entire batch. Heat treating the products could have reduced risks, however, this would have cut profit margins due to the product quantity being reduced.
By comparison, Canada, which also received infected blood products, made ‘humanitarian payments’ to victims beginning in the late 1980s, and by the 1990s, a public inquiry had been held and compensation paid. Several organisations and individuals, including the Canadian Red Cross, also faced criminal charges.
The Cabinet Office spokesperson said: “This was an appalling tragedy, and our thoughts remain with all those affected. We are clear that justice needs to be delivered for the victims and have already accepted the moral case for compensation.
“This covers a set of extremely complex issues, and it is right we fully consider the needs of the community and the far-reaching impact that this scandal has had on their lives. The Government intends to respond in full to Sir Brian’s recommendations for wider compensation following the publication of the Inquiry’s final report on 20 May 2024.”
What does the Infected Blood Inquiry report say?
The 2,527-page report from the Infected Blood Inquiry, published on Monday, May 20, found the scandal “could largely have been avoided” and there was a “pervasive” cover-up to hide the truth. It identified a “catalogue of systemic, collective and individual failures” that amounted to a “calamity”.
Mr Sunak issued a “wholehearted and unequivocal” apology to the victims, saying the publication of the report into the disaster was “a day of shame for the British state”. Speaking to reporters on a trip to Austria the following day, Mr Sunak said: “What has happened over decades has been a failure on multiple levels and it is important that yesterday was a day for the community to be heard, and they have waited an incredibly long time for justice and the truth.
“That is why I, rightly as Prime Minister, offered an unequivocal apology to everyone affected by this appalling scandal. The infected, the affected, everyone impacted in the community, they have fought under considerable pressure facing prejudice over many decades.
“Anyone reading the report will have found it harrowing, indeed devastating, and I am glad that yesterday was a moment for reflection on everything that has happened, and their voices could be heard and they received the apology that they so rightly deserved.”
Asked if there should be criminal prosecutions of those found to have done wrong during the course of the scandal, Mr Sunak said: “As I said yesterday, anyone, people, individuals, where there is evidence of wrongdoing, of course there must be justice and accountability for that.
“But the report is very long, it is very comprehensive, and what I am committed to is the Government will now take the time to go through it properly and rigorously before responding in Parliament, and, of course, any individual cases will be a matter for the relevant authorities.”
Following the publication, some victims of the scandal have restarted legal action against the Government, with their lawyer claiming there was a “misfeasance in public office”. It was put on hold in November 2018 but has been relaunched, with around 500 victims putting their name to the lawsuit.
Misfeasance is a civil offence relating to alleged misuse or abuse of power by a public official or authority causing loss or harm to a third party. A Government spokesperson said: “We do not comment on ongoing legal cases.”
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