‘Suffering that is difficult to understand’: key conclusions from the report on contaminated blood in Britain
1. The disaster could have been prevented
The key message of the 2,527-page report is that what is considered the worst NHS treatment disaster “was not an accident” and “largely, but not entirely, could have been avoided”.
Patients were knowingly exposed to “unacceptable” risks of infection between 1970 and 1991, and this was the result of successive governments, the NHS and the medical profession failing to “put patient safety first,” concluded the chairman of the inquiry, Sir Brian Langstaff.
Successive governments are primarily responsible for the “catalog” of “systemic, collective and individual failures” that made the tainted blood scandal possible, although “others share some of it,” wrote Langstaff, who has been hearing evidence since 2019.
Ministers’ refusal to admit their shortcomings “exacerbated people’s suffering”, resulting in a decades-long battle for the truth. He questions why it took until 2018 for a UK public inquiry to be launched.
It is “astonishing” that this could have happened in Britain and caused a “level of suffering that is difficult to comprehend,” Langstaff said.
2. Tens of thousands of victims were affected
More than 3,000 deaths are believed to have resulted from the scandal. An estimated 1,250 people with bleeding disorders are believed to be infected with HIV, including approximately 380 children, and another 80 to 100 among transfusion recipients.
Estimates are weaker for those infected with hepatitis C: between 3,650 and 6,250 in people with bleeding disorders, and 26,800 in transfusion recipients, of whom only 2,700 were alive in 2019. Many of these people had not been diagnosed.
Lives were “damaged and destroyed” by “pain, illness and loss.” Many more families were affected by caring for their loved ones who were infected, as well as the stigma associated with HIV and hepatitis C in the 1980s and 1990s.
The report pays particular attention to Treloar school, where a haemophilia center was established and students were used for “unethical and wrong” research into the use of blood concentrates. Only 30 of the 122 students with hemophilia who attended between 1970 and 1987 survived.
3. Hepatitis and HIV risks were known
It had been known since the 1930s that blood transfusions could transmit fatal hepatitis. The virus responsible for hepatitis C was identified in 1998, but was visible at least from the mid-1970s. The transmission of AIDS through blood products was established in 1982. This was all “very well known” among the government officials responsible for the blood product treatment.
Nevertheless, it was not decided to suspend the licenses granted for the import of high-risk factor concentrates. From 1973 it was understood that importing the commercial blood products known as Factor 8 concentrates, made in the US and Austria, carried a high risk of hepatitis and were less safe than domestic treatments, of which there should have been sufficient domestic supply . In the mid-1970s, a professor warned that one commercial product “came 100 percent from the dilapidated Skid-row Abandoned,” as the World Health Organization urged self-sufficiency.
In 1983 it was wrongly decided not to suspend the importation of commercial blood products, and more could have been done to control their distribution.
It was known that increasing the pools for the production of factor concentrates significantly increased the risks of viral transmission, and yet this continued. These concentrates were unnecessarily given to children in place of safer treatments.
There were delays in the rollout of universal screening of blood products for HIV and hepatitis C, despite this being a “public emergency”. Successive governments wrongly claimed that blood testing was being introduced as quickly as possible.
Research into viral inactivation, for example through heat treatment, was underfunded, which “could have prevented many infections and deaths.” Instead, there was a ‘denial attitude’ to risk, with the donor selection process not being ‘sufficiently careful and rigorous’, while the public was reassured that there was ‘no conclusive evidence’ that blood products carried AIDS and that Hepatitis C risk was “mild and insignificant”, despite research linking it to liver disease.
4. Patient safety was not a priority
There was a culture of ‘the doctor knows best’, and patients were not informed of the risks and alternatives, and many were not told they had been infected. Once infected, many were informed in a way that was ‘insensitive and inappropriate’, and there were delays in accessing specialist treatment.
Blood products were ‘used unnecessarily’ and were wrongly perceived by many doctors as having little or no risk. Transfusions were also given when they were not clinically necessary, for example as a supplement after delivery. In many cases, medical records have been destroyed, lost or incomplete.
5. There was a government cover-up
The suffering of victims has been compounded by the lack of a meaningful apology and a culture of cover-up within the NHS and government. Ministers ‘cruelly’ repeated Margaret Thatcher’s 1989 statement that ‘they had received the best available treatment’ and therefore no compensation was needed.
Langstaff criticized the government’s response, which was characterized by “a lack of transparency and candor” and “groupthink” among officials and ministers over decades. This is “damage to the public interest”.
He also warned about the “slow and drawn-out nature” of government decision-making.
The report confirms that the government covered up the scandal, not in the sense of an orchestrated conspiracy, but rather “to save face and costs.” This included the “deliberate destruction of relevant documents”.
Instead of responding to the infection of thousands of people with HIV and hepatitis through investigations, a “defensive closing of ranks” took place within the NHS.
6. Compensation and culture change are needed now
The report contains a series of recommendations for the government, the “most important” of which is that a compensation scheme be set up now.
It also calls for a permanent memorial to be erected for those affected by the scandal.
Other recommendations focus on culture and practice in the civil service, including around attitudes to public health risks and accelerating decision-making, and on the NHS, such as encouraging reporting of concerns and accountability to leaders.
This includes requiring medical educational institutions to update physician training; strengthening the safety culture, including by addressing a culture that dismisses patient concerns and fails to be fully transparent; a UK review of healthcare safety regulations; an audit of healthcare files; and an end to the ‘defensive culture’ in the civil service and government.
Support is also being given to people suffering from hepatitis C. People should have six-monthly lifetime follow-up scans to detect liver damage if they have been diagnosed with cirrhosis or fibrosis, and these should be seen by experienced doctors. Doctors who perform blood transfusions and provide care to hemophilia patients should be required to take additional measures to ensure safety. There needs to be a concerted effort to find people who have not yet been diagnosed, including testing anyone who had a blood transfusion before 1996.
The government is asked to consider and implement the recommendations within a period of 12 months or provide sufficient reasons for their rejection. The report notes that the government has still not responded to all the recommendations in the interim reports, published in July 2022 and April 2023.