Bloody Mess

When patients are seriously harmed by healthcare, they should be told the truth as soon as it is known, and compensated promptly for the degree of harm they have suffered, irrespective of the causes. Investigations need then to occur to try to ascertain the causes of the harm, whether anything could have been done to prevent the harm and whether individuals or institutions need to be held to account for any errors. Lessons need to be learned to prevent future harm. But patients need to be given the truth and financial support to allow them to live as best they can with the harm they have suffered.

The belated announcement of a public inquiry into the thousands of haemophilia patients given blood contaminated by HIV and hepatitis C in the 1970s and 1980s shows how far the NHS is from this ideal. Patients and relatives have been asking for this for nearly 30 years, and while at least 2,400 have died from their infections, many more have suffered not just from the unpleasant illness and treatment, but from a protracted, emotionally exhausting fight for truth, justice and compensation

Some of the haematologists and department of health officials at the time will have died (from natural causes), all will have retired and most will have given evidence at previous inquiries. The first blood clotting products (including factor VIII, which haemophiliacs need) were produced in 1966, and the UK imported huge quantities from the US from the 70’s onwards. In 1974, the World Health Organisation warned Britain not to import blood from countries with a high prevalence of hepatitis, such as the United States. It was also known in the 70’s that the risks of potential contamination were higher as ‘skid row’ donors were paid to donate (e.g. Word In Action, Blood Money 1975). Large quantities of factor VIII were also exported from high risk prison donors in America, using high risk collection techniques. Some blood products may also have come to the UK from high risk populations in Africa and Central America, such was the demand for factor VIII. In 1976, there was a drive to make the UK self-sufficient in blood products but this was not followed through. Doctors and department of health officials could not have known at the time about the emergence of HIV and hepatitis C, but they would have known that using imported blood was risky. However, they would have argued that there was at that time no alternative. And patients would have been kept in the dark.

I was at medical school in the eighties, and we often didn’t even tell patients their diagnosis. Seriously ill patients were fobbed off with paternalistic euphemisms, unilateral decisions were made not to resuscitate with no discussion and junior surgeons would do major operations for the first time, unsupervised, with their consultant not even in the hospital. The NHS survived on its threadbare funding through secrecy. Errors, risky behaviour and harm were routinely covered up. The secrecy surrounding the emerging tainted blood scandal was entirely consistent with the culture of the time.

In 1982, the first UK haemophilia patient was given a diagnosis of AIDS. In 1983, Dr N Galbraith of the Public Health Laboratory Service wrote to Dr Ian Field at the DH: “I have reviewed the literature and come to the conclusion that all blood products made from blood donated in the USA after 1978 should be withdrawn from use until the risk of AIDS transmission by these products has been clarified.” A DH letter the same month concludes that the suggestion “is premature in relation to the evidence and unbalanced in that it does not take into account the risks to haemophiliacs of withdrawing a major source of their factor VIII supplies.” No restrictions were placed on imported concentrates, except on those for children under the age of 4 years and for people with mild haemophilia. In 1991, as hepatitis C infection emerged, many patients were wrongly told it was ‘much less serious’ than hepatitis B. Potential risks were again downplayed. Many patients weren’t tested promptly for HIV or hep C. The public inquiry will doubtless hear from patients infected with tainted blood being wilfully mislead, not told their infection status or even offered compromise payments and gags not to pursue legal action. Whistle-blowers will have been ignored, as they are today.

Patients can’t be warned about the risks of infections that were yet to be discovered, but they have a right to know where their blood comes from and what the potential risks are. But informed consent didn’t exist 40 years ago. Even in the eighties, when the risks were known or suspected, patients were still kept in the dark. Merely arguing that the benefits outweigh the risks without sharing that information with patients is wrong, as is delaying compensation to patients in cases where blame is legally disputed. Harm is harm, and patients should be compensated for the extent of it, not the cause.