20 May 2024 , 20:34
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Thousands of deaths could have been avoided, final report on infection of thousands with HIV or hepatitis C concludes
The scandal that claimed the lives of 3,000 people treated with contaminated blood was inflamed by a “chilling” NHS and government cover-up, a scathing report has found on what Rishi Sunak has declared a “day of shame”.
In the long-awaited conclusion to a five-year public inquiry, Brian Langstaff, who chaired the investigation, said on Monday the calamity could “largely, though not entirely, have been avoided” – but successive governments and others in authority “did not put patient safety first”.
He said the death toll was rising weekly among the 30,000 people who were infected with hepatitis C, HIV or both from the 1970s to the early 90s, either from receiving transfusions during surgery or through blood plasma products imported from the US to treat haemophiliacs.
The 2,527-page report contains a litany of examples of unheeded warnings about what would become the biggest treatment disaster in NHS history. Clinicians and ministers were told about the risks but patients were lied to and infected during trials carried out without their consent or, in the case of children, that of their parents. There were also delays informing patients of their infections, stretching to years in some cases.
“The NHS and successive governments compounded the agony by refusing to accept that wrong had been done,” said Langstaff, after being given a standing ovation on Monday at Central Hall in Westminster, London, by more than 1,000 victims and affected people gathered to hear the report’s findings.
“More than that, the government repeatedly maintained that people received the best available treatment and that testing of blood donations began as soon as the technology was available. And both claims were untrue.”
With the current government having come under fire in the report for its failure to compensate victims, Rishi Sunak said he would implement last year’s recommendations “whatever it costs”. He also offered a “wholehearted and unequivocal” apology for the scandal – including for “the loss and destruction of key documents including ministerial advice and medical records” – on what he called “a day of shame for the UK state”.
The NHS England chief executive, Amanda Pritchard, also apologised to those who “put their trust in the care they got from the NHS over many years” and “were badly let down”.
The report provides vindication for campaigners who, after decades and in the face of denials, have insisted that risks were disregarded, lies were told and tracks were covered.
Langstaff wrote: “The answer to the question ‘was there a cover-up?’ is that there has been. Not in the sense of a handful of people plotting in an orchestrated conspiracy to mislead, but in a way that was more subtle, more pervasive and more chilling in its implications. To save face and to save expense, there has been a hiding of much of the truth.”
He condemned a culture in which “financial and reputational considerations predominated”.
Among thousands of tragic stories, he described the use of children as “objects of research” at Treolar’s school in Hampshire, where only 30 pupils remain of the 122 who attended the specialist school for people with haemophilia between 1970 and 1987, as “unconscionable”.
In response, many of the affected experienced mixed emotions. Andy Evans, 47, the chair of Tainted Blood, who was infected as a small child with HIV and hepatitis C, said it was a “momentous day”, adding: “We’ve been gaslit for generations.”
He added: “When we told people, they didn’t believe us. They said this wouldn’t happen in the UK. Today this proves this can happen – and did happen – in the UK.
“When you’ve been building up to a single day for 40 years there’s no wrong or right emotion about it, but the campaigners who’ve been doing this for so long – relief, absolute relief, will be an overriding emotion. Certainly that’s the case for me.”
Rosamund Cooper, 50, 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. She said: “We were told it was accidental. We were told … the decisions made were the best possible at the time.”
The report “is showing that that’s not the case, and that people were covering things up, denying things, hiding things from us, which is disgraceful”.
Langstaff said the risks of hepatitis posed by blood transfusions or the use of plasma were known before the NHS’s inception in 1948 and if measures to mitigate them proposed by the World Health Organization in 1952 had been adopted, “it is reasonable to believe that a significant part of the harm on which this inquiry is focused could have been prevented”.
Significantly, he found the risks were sufficiently clear that factor VIII products imported from the US, created using blood plasma from high-risk donors including prisoners and drug addicts and used to treat haemophilia, should never have been licensed for import in 1973 – nor should other similar blood products later in the same decade.
With Aids, the report says it was apparent by mid-1982 to “some clinicians and some within government” that whatever was causing it might be transmissible by blood and blood products. But ministers continued to give safety reassurances, as did doctors. Despite the risk, in July 1983 a decision was taken not to suspend the continued importation of commercially produced blood products.
Langstaff said: “The failure of clinicians to tell people of the risks of infection from blood or blood products, the failure to tell people of the availability of alternative treatments, the failure to tell them that they were being tested for HIV or hepatitis C and, sometimes, the failure even to tell them, or to tell them promptly, that they had been infected with HIV or hepatitis by their treatment; the failure to explain these devastating diagnoses privately, in person and with sensitivity – these failures were widespread. They were wrong. They were unethical.”
Reflecting the loss of faith in the state by victims and relatives, Langstaff said he would not consider the inquiry over until the government either implemented his recommendations or gave good reasons for not doing so, giving it a year to respond substantively.