A day of reckoning has arrived, more than 50 years since the first victims received infected blood. The UK public inquiry has published its final report, which it is hoped will provide a measure of justice to the thousands of people affected by apportioning blame to the government and health service, and paving the way for a formal apology and compensation scheme. Here are the main points covered.
The disaster could have been prevented
The main message from the 2,527-page report is that what is thought to be the NHS’s worst treatment disaster “was not an accident” and could “largely, though not entirely, have been avoided”.
Patients were knowingly exposed to “unacceptable” infection risks between 1970 and 1991, and this resulted from successive governments, the NHS and the medical profession failing to “put patient safety first”, concluded the inquiry’s chair, Brian Langstaff.
Successive governments are primarily to blame for the “catalogue” of “systemic, collective and individual failures” that allowed the infected blood scandal to happen, though “others share some of it”, wrote Langstaff, who has been hearing evidence since 2019.
Ministers’ refusal to own up to failings “served to compound people’s suffering”, resulting in a decades-long battle for the truth, Langstaff wrote. He asked why it took until 2018 for a UK-wide public inquiry to be established.
It was “astonishing” that this could have happened in the UK, causing a “level of suffering which it is difficult to comprehend”, Langstaff said.
Tens of thousands of victims were affected
More than 3,000 deaths are understood to have resulted from the scandal. An estimated 1,250 people with bleeding disorders are thought to have been infected with HIV, about 380 of whom were children, and a further 80 to 100 in transfusion recipients.
Estimates are weaker for those infected with hepatitis C, between 3,650 to 6,250 in people with bleeding disorders, and 26,800 in transfusion recipients, just 2,700 of whom were still alive in 2019. Many of these people were undiagnosed.
Lives were “damaged and destroyed” through “pain, sickness 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.
There is a particular focus in the report on Treloar’s school, where a haemophilia centre was located and pupils were used for “unethical and wrong” research into the use of blood concentrates. Just 30 of the 122 pupils with haemophilia who attended between 1970 and 1987 survived.
Hepatitis and HIV risks were known
It was already well known from the 1930s that blood transfusions could transmit fatal hepatitis. The virus responsible for hepatitis C was identified in 1998, but apparent from at least the mid-1970s. Transmission of HIV through blood products was established in 1982. This was all “very well known” among the government officials responsible for treatment with blood products.
Despite this, decisions were not taken to suspend the licences granted to import risky factor concentrates. It was understood from 1973 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 a sufficient domestic supply. In the mid-1970s, one professor warned that one commercial product was sourced “100% from Skid-row derelicts”, while the World Health Organization urged self-sufficiency.
An erroneous decision was taken in 1983 not to suspend the importation of commercial blood products, and more could have been done to control their distribution.
UK blood services also continued to collect blood donations from British prisons until 1984, despite warnings that it was not safe.
Increasing the size of the pools to manufacture factor concentrates was known to markedly increase risks of viral transmission, and yet went ahead. These concentrates were unnecessarily given to children rather than safer treatments.
There were delays in rolling out the universal screening of blood products for HIV and hepatitis C despite this representing a “public emergency”. Successive governments falsely claimed that blood screening was introduced at the earliest opportunity.
Research into viral inactivation, for example through heat treating, was underfunded, which could have “prevented many infections and deaths”. Instead, there was “an attitude of denial” towards risk, with the donor selection process not “sufficiently careful and rigorous”, while the public were reassured that there was “no conclusive proof” that blood products carried Aids, and that the hepatitis C risk was “mild and inconsequential”, despite research linking it to liver disease.
Patient safety was not prioritised
A culture of “doctor knows best” prevailed, and patients were not informed of risks and alternatives, and many were not told that they had been infected. Once infected, many were informed in ways that were “insensitive and inappropriate”, and there were delays in accessing specialist treatment.
Blood products were “used unnecessarily”, and wrongly seen by many clinicians as posing little or no risk. Transfusions were also given where they were not clinically needed, for example to top up after childbirth. In many cases, medical records have been destroyed, lost or are incomplete.
There was a government cover-up
Victims’ suffering was compounded by the lack of a meaningful apology, and a cover-up culture in the NHS and the government. Ministers “cruelly” repeated the line from Margaret Thatcher in 1989 that “they had received the best treatment available” and therefore compensation was not required.
Langstaff criticised the government response as characterised by “a lack of transparency and candour” and “groupthink” among civil servants and ministers over decades. This was “damaging to the public interest”.
He also warned of the “slow and protracted nature” of government decision-making.
The report confirms there was a government cover-up of the scandal, not in the sense of an orchestrated conspiracy, but rather “to save face and to save expense”. This included the “deliberate destruction of documents of relevance”.
Instead of responding to the infection of thousands of people with HIV and hepatitis through investigations, there was a “defensive closing of ranks” within the NHS.
Compensation and cultural change are needed now
The report sets out a series of recommendations for the government, “principal” of which is that a compensation scheme be set up now.
It also asks that a permanent memorial be set up to those affected by the scandal.
Other recommendations are targeted at the culture and practice in the civil service, including around attitudes to public health risks and speeding up decision-making, and the NHS, such as encouraging the reporting of concerns and accountability for leaders.
This includes requiring medical education bodies to update doctors’ training; strengthening the safety culture, including by addressing a culture of dismissing patient concerns and failing to be fully transparent; a UK-wide review of healthcare safety regulation; a healthcare records audit; and an end to the “defensive culture” in the civil service and government.
Support for those suffering from hepatitis C is also outlined. Anyone who received a transfusion before 1996 should be tested for the virus in order to identify the more than 800 people believed to still be unknowingly living with hepatitis C. People should have six-monthly lifetime monitoring scans for liver damage if they have been diagnosed with cirrhosis or fibrosis, and should be seen by senior doctors. Doctors carrying out blood transfusions and providing care to haemophiliacs should be required to take additional steps to ensure safety. There should be a concerted effort to find those who are undiagnosed including testing anyone who had a blood transfusion before 1996.
The government is asked to consider and commit to implementing the recommendations within a 12-month timeframe, or give sufficient reason for rejecting them. The report notes that the government has still not responded to all of the recommendations contained in the interim reports, published in July 2022 and April 2023. Langstaff said the failure to set out plans for compensation already was “a serious failing which replicates the wrongs of the past”.
