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21 May 2024

What we must learn from the infected blood scandal

This failure and its cover-up reveals the harm done by the NHS’s “institutional defensiveness”.

By Hannah Barnes

It is difficult to imagine that the NHS could have been complicit in conducting secret medical trials on children, condemning them, in some cases, to their deaths. That the service then – along with politicians and the machinery of the state – attempted to cover up this appalling episode, is even worse.

Yet that is what Brian Langstaff’s final report on the infected blood inquiry has concluded. Running to seven volumes, and more than two and a half thousand pages, it contains a litany of NHS failures, described in remarkable detail. This was not, Langstaff wrote, a terrible accident, but a “horrifying” disaster that “could largely, though not entirely, have been avoided”. And, he added, “it should have been”. The NHS, Langstaff judged, was complicit in “hiding the truth”. His report describes a “catalogue of failures”, each individually “serious” but “taken together they are a calamity”.

For those campaigning for decades for some kind of justice, this is a vindication of what they have been saying all along. Not justice perhaps, but the truth at last. Key documents went missing or were destroyed; doctors failed to tell patients that they had tested positive for either HIV or hepatitis C; children were used as “guinea pigs” without their or their parents’ consent, knowingly infected with dangerous blood products; doctors and politicians knew of the risks, but did not act accordingly.

The compensation bill is expected to be around £10bn, though this isn’t yet confirmed. The government has said it will make further interim payments of £210,000 this summer, and that it expects to begin final payments by the end of the year. Robert Francis, who has led official inquiries into the Stafford Hospital scandal and NHS whistle-blowing, will lead the body that is to administer compensation to those infected and affected. Both main political parties have promised to pay.

The numbers are staggering. It’s estimated that 30,000 people were infected with HIV and/or hepatitis C with contaminated blood products in the 1970s and 1980s. The products were largely given to two groups: haemophiliacs – those who have a rare genetic condition that means their blood doesn’t clot properly – and transfusion patients. 

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The infected blood inquiry found that the NHS continued to import products from the United States, despite knowing they could be spreading HIV and other diseases. Much of this blood came from high-risk donors – prisoners, or intravenous drugs users. “Plasma from [sexually transmitted disease] clinics” was used too, US attorney Michael Baum told the Today programme on BBC Radio 4. Donations from thousands of individuals would then be pooled, meaning if just one donor was infected with a virus, the entire batch, or Factor VIII concentrates (the clotting agent needed to treat haemophiliacs) made from it, could be contaminated.

No amount of money can compensate for the lives blighted or the death of a loved one. What price to put on the agony of watching your seven-year-old child waste away, his body ravaged by Aids, as Jan Smith had to do with her son, Colin? He weighed just 13 pounds when he died. More than 3,000 people in the UK died as the direct result of this scandal. Campaigners who have been calling for compensation payments to be made more quickly estimate that a victim dies every four days.

In terms of scale, number of lives lost, and the extent of the cover-up, it is hard to disagree with Langstaff’s assessment that the infected blood scandal represents “the worst treatment disaster in the history of the NHS”. As the Sunday Times journalist and campaigner for those infected with contaminated blood products, Caroline Wheeler, has written, “why five decades have passed without justice is difficult to answer”. Perhaps, she observes, it’s due to the “presence of the NHS at the heart of this scandal” and that an acknowledgement of liability would have inevitably meant “calamitous financial liabilities for the British state”.

Maybe. Or is there something unique about the UK, and the way we deal with scandal and wrongdoing? Other countries that similarly faced contaminated blood scandals – including France and Japan – completed their investigations into these medical disasters years ago. Langstaff makes it clear that it should not have taken this long to complete a public inquiry. He describes a culture of “institutional defensiveness” within the NHS and government.

That phrase could be similarly applied to other recent NHS scandals. In the last six weeks, reports have been published including the birth trauma inquiry into the crisis in maternity care and the Cass Review of gender identity services for children and young people, which confirmed that thousands of highly distressed and vulnerable children had been prescribed potentially life-changing drugs without any robust evidence that they were beneficial. (In fact, data from 2015 suggested that some children were faring worse on puberty blockers).

The recent parliamentary report on birth trauma suggested good maternity care appeared to be the exception rather than the rule, with thousands of women left traumatised each and every year. As Dr Ranee Thakar, president of the Royal College of Obstetricians and Gynaecologists, said: “We often don’t talk to them [about serious birth injuries] because we think that women will be frightened and they will want to have a Caesarean section if we tell them about birth trauma.” This, despite the fact that every maternity scandal of the past decade and a half – in Morecambe Bay, Shrewsbury and Telford, and East Kent NHS trusts – has highlighted that some of the poor care provided to mothers and their babies was because of a push towards “normal” or “natural” birth, and a desire to keep Caesarean-section rates low. It took a decade for official C-section targets to be dropped.

Each scandal has its own individual horrors. But all share common factors: the lack of informed consent; the continuation of medical practices that are known to be risky; the attempts to cover up bad practise. Some of the themes Langstaff identifies in his inquiry could easily apply to these other instances, not least what he calls, “the dangers of clinical freedom”. This, he writes, “is the idea that doctors should be free to do what they believe to be right for an individual patient”, which here “allowed doctors to follow unsafe treatment policies and practices”.

There are many other shameful episodes we could mention too: the hundreds of women who were needlessly operated on by the surgeon Ian Paterson, who exaggerated or invented breast cancer risks; or those who were fitted with vaginal mesh products that worsened their pain after childbirth; or the babies harmed by thalidomide. The themes are the same.

With each, our collective horror stems from a betrayal of trust. We trust in the NHS – not because we think it’s some kind of religion, but because we believe in the idea that a civilised society should provide healthcare to those in need, regardless of who they are or their ability to pay. When that fails, it shakes us to the core.

We use the NHS when we are at our most vulnerable. With the infected blood scandal, it is all the worse that many of the victims were children, some harmed in a setting where they expected to be safest: at school. Treloar’s College, where only 30 of 122 pupils with haemophilia attending between 1970 and 1987 are still alive, has its own volume in the Langstaff inquiry.

One victim of the scandal, Clive Smith, said upon publication of the findings, “We don’t listen to the recommendations of public inquiries, and that has got to stop today.” We often don’t listen to the brave men and women working in the NHS who raise their concerns, either. For every healthcare scandal, there’s at least one whistle-blower. Rather than be taken seriously, they are often vilified and hounded out of their jobs. Until we start really listening, and until the NHS and politicians value honesty more highly than they fear “reputational damage”, we will be doomed to repeat our mistakes.

[See also: The ICC’s milestone decision]

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This article appears in the 22 May 2024 issue of the New Statesman, Spring Special 2024