The Infected Blood Inquiry: we need some honesty and engagement by those in authority

The six year long Infected Blood Inquiry has finally reported.1 The first of its 2,527 pages contains a quotation from the medical peer Robert Winston, who described the events being investigated as “the worst treatment disaster in the history of the NHS.” The administration of unsafe blood products to people with bleeding disorders during the 1980s caused about 1,250 infections with HIV, 380 among children. Many more contracted hepatitis C, as did an estimated 26 800 people who received blood transfusions. The Inquiry’s author, former High Court Judge Brian Langstaff, is clear. This could, almost entirely, have been avoided and it should have been. However, it was not just the initial mistakes. It was also the response and, later, the cover up. Langstaff contends that how the government “reacted to what had happened after 1985 was in many respects shameful.”

Like other public inquiries, for example, on bovine spongiform encephalopathy (BSE), the Iraq war and, currently, Grenfell Tower, the Post Office, and covid-19, this report shines a light into the usually hidden process of making policy in the United Kingdom. It is a process that has been made even less visible by a government that until recently strove to thwart the spirit of the Freedom of Information Act.2 Each inquiry reveals a system that is deeply dysfunctional, with decisions that are based on highly selective evidence, that disregard the knowledge or interests of those they will affect, and in a culture that seems incapable of accepting any mistakes that are made.

The question of how ministers might best obtain scientific advice has been prominent in the UK Covid-19 Inquiry and, especially, the importance of hearing dissenting views.3 When the first cases of AIDS were being reported, there was much uncertainty about its cause and mode of transmission. However, by 1982, many scientists speculated that it might be spread by infected blood. Langstaff concludes that, by 1984, this was a “near certainty.” Yet not everyone shared this view. The report describes how one haematologist was unconvinced. Unfortunately, as the report notes, he “overly influenced” thinking in the Department of Health and Social Security (DHSS). He could do this, in part, through his membership of a multiplicity of advisory groups, including the Haemophilia Society, representing patients. What might seem diverse sources of advice were, in effect, the view of one person expressing views inconsistent with evolving thinking in other centres, and in some respects what he was practising.

Even when other sources of advice existed, they were often ignored or actively excluded. Concerns about the risks of HIV transmission in blood products being voiced in countries such as The Netherlands and Germany went unheeded, as did a report from the Council of Europe published in May 1983.4 That report, which called for precautions even if the risk from HIV was not yet proven, was withheld from a meeting of the Committee on Safety of Medicines on the safety of blood, held in July 1983. So was a letter from Spence Galbraith, then head of the Communicable Disease Surveillance Centre, that inconveniently, called for a halt to the use of blood products imported from the United States. This recalls the exclusion of experts on human disease from discussions on BSE when the then government was seeking to dispel fears of animal to human transmission.5

The report contains many examples of decisions that were made without any engagement with those they affected. A leaflet intended to discourage blood donors who might be at risk of carrying HIV was distributed, after some delay, in September 1983, but it soon became clear that the wording was confusing and, in some places, misleading. A fund, the Macfarlane Trust, was created to support those who had been affected, but without considering the needs of potential beneficiaries. While they knew they may be entitled to support, they did not know how much, what for, how to apply, and how long it might take. Again, it has many echoes with the covid-19 pandemic when many decisions about schools, care homes, and much else, were taken without engaging with those they would affect.6

The media coverage of the infected blood report has paid particular attention to the cover ups. Long after other countries had confronted their mistakes, even, in France, prosecuting a former prime minister,7 the United Kingdom authorities continued to dismiss the concerns of those infected. The report is particularly critical of the use of “lines to take,” mantras that are repeated endlessly by ministers despite being false. These include the words “best treatment available” (it was not) and “no conclusive proof” (technically correct but misleading), and the claim that patients accepted infections as an “acceptable side effect” (no-one ever asked them). It links many such examples to briefings by officials but also criticises ministers “who lacked curiosity.” There were, however, exceptions and it was clear that those ministers who wanted to put things right faced relentless obstruction.

The report contains almost 70 pages of recommendations, many very specific. They will take time to implement. For now, however, policymaking in the United Kingdom could be a lot better if those in authority would just be honest, regardless of whether there is a legal duty of candour, and if they would engage with those who are affected by their decisions.