It was one of the worst medical disasters of our time. Some 30,000 people who needed the help of the NHS to stay alive and well were given treatment that wrecked their health, took the lives of nearly 3,000 and will be responsible for more deaths to come. Finally, today, half a century on, the six-year Langstaff inquiry has produced a judgment on the infected blood scandal – and it is devastating.
The list of errors and misjudgments is extraordinary and it is clear that arrogance from the medical profession played a big part, as well as greed from the pharmaceutical companies and back-covering from the politicians. So many heads should roll, but many of the most culpable individuals are dead.
There was some hope that the report would call for those responsible to face prosecution, which could have lent support to cases against individual NHS and government figures. It stopped short of that, however its conclusions are harsh and the case for major compensation for victims is unanswerable. The government is expected to announce a compensation package tomorrow.
The government has also been challenged by Sir Brian Langstaff to implement his recommendations or give a good reason why it hasn’t within the year. It will be shameful if it does not meet that target.
If there is a sense of deja vu, it’s not surprising. In recent years there has been one scandal after another in which it has been revealed, decades late, that ordinary people have been not only terribly wronged, their lives ruined or curtailed, but also denied explanations or justice for years afterwards. Look at the Post Office scandal, look at Hillsborough. There have been and will be others, unless governments and other public authorities come clean when mistakes are made.
Putting things right for the infected blood patients will be hard. The compensation will help, but it is far too late in coming. Prosecutions for corporate manslaughter will be difficult.
Many of those infected with hepatitis and HIV viruses through infected blood had haemophilia. They were blameless, and yet they were ignored and pushed aside as if they were not worthy, doubly stigmatised by their original vulnerability and the viruses they contracted. Among them were many children. The account of what happened at Treloar’s school in Hampshire, which had a haemophilia centre, is deeply upsetting. Only 30 out of 122 of the children with haemophilia attending the school between 1970 and 1987 survive. The children were guinea pigs, among other things receiving doses of factor VIII concentrates prophylactically that were deliberately too high or too low and often, as we now know, infected with HIV.
It’s hard with hindsight to understand the decisions that were made back in the 1970s and 80s. The fundamental undertaking of all doctors is “first, do no harm”. And yet the risk of hepatitis in blood products was known since the second world war. In 1952, the World Health Organization was warning that it was a serious problem and advising measures to minimise the risk, including the careful selection of donors.
Doctors knew, or should have known when they began to use factor VIII, a blood-clotting product partly sourced from prisoners paid to give blood in the US, that there was a high risk it carried hepatitis, given the injecting drug usage among them. Cutter Laboratories, a subsidiary of Bayer, specifically stated when seeking a licence for its product called Koate in the 1970s that: “Since the presence or absence of hepatitis virus in Koate concentrate cannot be proven with absolute certainty, the presence of such a virus should be assumed.” Doctors and the governments they advised argued that the benefits to patients who might die of a bleed outweighed the hepatitis risk, underestimating the damage to the liver that hepatitis B and later the even more virulent C would cause. Patients developed cirrhosis and fatal liver cancers.
That complacency carried through to HIV. In 1982, with Aids taking off, there were warnings from the United States that factor VIII could contain the virus. The WHO was advising countries to source blood from their own populations. In 1983, the health minister Kenneth Clarke told parliament there was “no conclusive evidence” that Aids, then always lethal, was transmitted through blood products.
Yet these fundamental misjudgments that wrecked health and lives, often killing children or parents who left young orphans, were not the end of it. Much could have been done to help survivors live the best life they could – but it wasn’t. Instead, we heard the scurrying of feet and the whirring of shredding machines as the establishment rushed to cover up its involvement in the tragedy. The inquiry heard that many crucial documents went missing or were destroyed, from individuals’ medical records to the papers of government ministers and, in the mid-90s, the Advisory Committee on the Virological Safety of Blood.
It would be totally shocking if we hadn’t been here before. But appallingly, it’s not uncommon. Mistakes are made, bad and careless decisions are taken, and those in authority who are involved will not fess up. That’s not just immoral in itself. The consequence is vastly more suffering for those who have been wronged and their families.
The Hillsborough families are campaigning for a new law that no country should need, but it appears that Britain does. The Hillsborough law would put a duty on public authorities and officials to tell the truth about things that have gone wrong, and proactively cooperate with inquiries. The families also want public funding for bereaved families at inquests – they struggled to fund lawyers, while public bodies had heavyweight legal representation. The government has instead signed a charter committing officials to transparency and openness.
Keir Starmer has pledged that Labour will introduce the Hillsborough law. It might have helped the Post Office staff and the infected blood patients get the justice and compensation they deserved decades earlier. At the very least, it may cause those in positions of power to think harder about the people their decisions affect – and hopefully hesitate just a bit longer before they turn on the shredding machine.
Sarah Boseley is the former health editor of the Guardian
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