A UK-wide inquiry will be held into the contaminated blood scandal that over the past 40 years has left at least 2,400 people dead, the prime minister has confirmed. BBC News reports that a spokesperson for Theresa May said it would establish the causes of the “appalling injustice” that took place in the 1970s and 1980s.
The report says thousands of National Health Service (NHS) patients were given blood products from abroad that were infected with hepatitis C and HIV. It’s been called the worst treatment disaster in the history of the NHS.
Many of those affected and their families believe they were not told of the risks involved and there was a cover-up. May is quoted in the report as saying: “They deserve answers, and the inquiry that I have announced today will give them those answers, so they will know why this happened, how it happened. “This was an appalling tragedy and it should never have happened.”
A recent parliamentary report found around 7,500 patients were infected by imported blood products. Many were patients with an inherited bleeding disorder called haemophilia. They needed regular treatment with a clotting agent Factor VIII, which is made from donated blood. The UK imported supplies and some turned out to be infected. Much of the plasma used to make Factor VIII came from donors like prison inmates in the US, who sold their blood.
The report says Jason Evans was just four years old when his father Jonathan, a haemophiliac, died after being infected with HIV through contaminated Factor VIII treatment. Jason recently discovered that in late 1984 his father had raised concerns with his doctors about Factor VIII but he says he was told “there was nothing to worry about, this is sensationalism and not to pay attention to it. And he trusted his doctor”.
The report says families of those who died will be consulted about what form the inquiry should take. It could be a public Hillsborough-style inquiry or a judge-led statutory inquiry, the prime minister confirmed. Labour leader Jeremy Corbyn said the inquiry should have the potential to trigger prosecutions.
Sir Peter Bottomley, co-chair of the cross-party parliamentary group on haemophilia and contaminated blood, said the success of the inquiry would depend on it being able to get hold of sensitive information. “It must have powers to get documents from pharmaceutical companies and government,” he said.
The report says the government has been strongly criticised for dragging its heels. Greater Manchester mayor and former health secretary Andy Burnham has repeatedly called for a Hillsborough-style probe into what happened. Burnham claimed in the Commons that a “criminal cover-up on an industrial scale” had taken place. The report says the Downing Street announcement came hours before the government faced possible defeat in a vote on an emergency motion about the need for an inquiry.
Payments have been made to some of the people who were infected. A fund was established to help support survivors. But, the report says, if the new inquiry finds culpability it opens the door to victims seeking large compensation pay-outs through the courts.
Liz Carroll, CEO of the Haemophilia Society, said: “The government has for decades denied negligence and refused to provide compensation to those affected, this inquiry will finally be able to properly consider evidence of wrongdoing.”
The report says improvements in donor vetting meant that by 1986 UK patients were receiving safer treatments. By the late 1990s, synthetic treatments for haemophilia became available, removing the infection risk.
Anyone who received a blood transfusion before 1991 is potentially at risk of hepatitis C infection since blood donations were not screened before this date. Blood donations are now routinely tested for infections, including hepatitis and HIV.
One of those affected by the scandal, Clair Walton was just 21 when she married her husband Bryan in 1983, reports The Guardian. He was a haemophiliac but they didn’t think for a moment it would stand in the way of their happiness. Two years later he was called in for tests after it emerged he had been given tainted blood. The couple found out he had HIV. “We had hopes for a future, hopes for a family and that was completely cut out and that is something I live with today,” she says. “I don’t have children, I didn’t remarry. It’s a sadness I have, but you live with what life deals you. You find your strength, you find your way of being.”
The report says the pair had been together since 1979 and wanted to try for children. As Walton had been clear of HIV when her husband was diagnosed, they sought a doctor for advice. “We wanted to have children and they said ‘it’s not a good idea, but if you want to go ahead we’ll monitor you’. That was it, literally. We were young and stupid, we got no support around ovulation or the sorts of things you would think about now,” she says. In 1987, Walton was also diagnosed with HIV.
“People said to us afterwards ‘You were adamant about having children’, but we weren’t,” she says. “We were just young and wanted children and we were given poor, damaging and negligent advice. But that is something that I have lived with, I carried on with my life.”
The pair were offered no counselling or support, she adds. “It was basically ‘here you go, you’ve got it, off you go’. At that time you were told you will die.” The report says the couple struggled to cope with the stigma associated with HIV and Aids, she says.
“Anyone who lived through the 1980s will understand just how appalling it was to live with HIV. The whole stigma around it was something no-one would tolerate today.”
“We faced all sorts of discrimination, in accessing doctors, dental care – he was supposed to be given a transfusion after an operation and they wouldn’t touch him. The people who were diagnosed with HIV all those years ago have lived with this and have suffered but you don’t hear from them, because of the stigma associated with HIV. And that silence lives with you.”
The report says Walton’s husband took experimental HIV drugs which she believes contributed to his death in 1993, when he was just 34. “He said ‘I don’t want to die, I’m too young’. He said that to me: ‘I’ve got too much to do’.”
She said in the report that she hopes that all the people who were affected by the longstanding scandal will now be heard. I hope that some kind of relief, grieving and an acknowledgement of what happened will now be heard.”
“There has to be an investigation into the aftermath. What happened, why it happened and how they dealt with it. They have kept us begging for scraps for 28 years, I think they just expected us to die.”
In every disaster, all victims have a fundamental right to one thing above all: answers about what went wrong, and why, writes Diana Johnson the Labour MP for Hull North in The Guardian. Yet for many years, she says the victims of the NHS contaminated blood scandal have been denied this same right.
Johnson writes: “This is the worst treatment catastrophe in the history of our health service; and one of the worst peacetime disasters that has ever happened in our country. Innocent people were infected over the course of 20 years, from the 1970s to the early 1990s, when they were given blood from the NHS through transfusions, blood factor concentrates or other methods. But because of the way many of these products were sourced by our NHS, they were contaminated with a range of viruses – particularly hepatitis C and, by the early 1980s, HIV. Neither the victims, nor their families, were ever told of the risks.
“It is hard to understate the scale of the disaster that then unfolded. People without bleeding disorders were infected through blood transfusions and other hospital care, and the entire community of people with haemophilia in the UK was devastated – a close-knit, tightly connected group of close friends and family members. Over 2,400 people have since been killed by the viruses they contracted.’
Johnson writes: “As I set out in the House of Commons earlier today, if these deaths had happened over the course of a day or even a year, it would have been inconceivable for any government to ignore the calls for answers. Yet this happened slowly over 30 years, and the victims were silenced by the stigma of having contracted these viruses, by being forced to sign legal waivers forgoing the right to prosecute the government, and because they were never even made aware of what happened to them, as part of what may have been a criminal cover-up on an industrial scale. Our NHS’s worst treatment disaster is also its most secretive and opaque.
“Successive governments of all colours have long ignored calls for a public inquiry. The two meagre efforts at investigation we have seen so far have rightly not satisfied the victims, as neither had the power to compel witnesses from Westminster to provide evidence. In France the US and Japan similar tragedies resulted in fines, prosecutions and jail sentences – nothing of the sort has happened in the UK.
“When the leaders of all non-government parties wrote to the prime minister to ask for an inquiry last Friday, it finally looked like we might make progress. There was the prospect that all parties might join together in giving victims the right to answers that they had so long been denied.”
According to Johnson: “Theresa May’s announcement of a public inquiry today has earned her a place in the history books. She chose to listen to the calls that her predecessors had ignored, and for this she deserves widespread thanks from all parties.”
But, she adds to ensure that it brings true justice, she (May) needs to give further assurances.
Johnson writes: “First, she must promise full public disclosure of all documents about the scandal, through a process managed by its victims. Those responsible need to be compelled to give written and oral evidence. Second, she must ensure the inquiry is as wide-ranging and broad as the scandal itself – investigating not just the run-up to the infections, but the aftermath. It must look into allegations of criminal conduct that Andy Burnham and others have so rightly set out; why the government didn’t act to protect blood supplies once the risks became known; why these risks were hidden from victims; and an alleged cover-up. The role of US private companies in supplying blood products to British haemophilia patients must also be investigated. Finally and most importantly, just as with Hillsborough, the inquiry must put ‘families first’. They must have a role in deciding the panel and the terms of reference.
“Whenever MPs raise this scandal, they always get moving and heart-warming messages from those affected. One such message has always stuck in my mind, from a woman infected through this scandal: ‘You can’t give us back our health. But you can give us back our dignity. This tortured road has been too long for many of us, but for the rest of us, please let it be the final road to closure.’
“Perhaps for the first time in her life, she and others can take the first steps down this road.”