Infected blood scandal: who abandoned the victims and who fought for them

The tainted blood scandal could have been largely prevented and there was a cover-up to hide the truth, an investigation has found.

Patients were knowingly exposed to unacceptable risks of infection, the inquiry found, and deliberate attempts were made to cover up the disaster, including by Whitehall officials destroying documents.

The 2,527-page report documents a “catalog of failures” that had “catastrophic” consequences not only for people infected with contaminated blood and blood products, but also for their loved ones.

Here we look at who the report says is responsible for the shortcomings and to whom it could be brought to light.

Who is responsible?

Governments and politicians

Successive governments are primarily responsible for the ‘catalogue’ of ‘systemic, collective and individual failures’ that enabled the tainted blood scandal, although ‘others share some of it’, writes the inquiry’s chairman Sir Brian Langstaff .

The report criticizes the government’s historic response to the emergence of the risks of treating people with contaminated blood and blood products.

In the 1980s, the government decided against any form of compensation for people infected with HIV. The then health secretary, Ken Clarke, said there would be no government scheme to compensate those who suffer “the unavoidable adverse effects” of medical procedures.

Then Prime Minister Margaret Thatcher rejected calls for compensation, claiming in 1989 that people infected with HIV through blood products had received “the best treatment available based on current medical advice”.

The repeated use of this mantra by ministers and officials over the next two decades, including about people infected with other diseases, was “wrong” and “amounted to blindness,” Langstaff said.

Successive governments have come under fire for refusing to hold a public inquiry due to “inherent defensiveness”, an unwillingness to listen to the stories of ordinary people and the fear of having to compensate victims.

Ministers’ refusal to admit their shortcomings “exacerbated people’s suffering”, resulting in a decades-long battle for the truth. Langstaff questions why it took until 2018 for a UK public inquiry to be launched.

Overall, ministers do not appear to have been curious in the early days of the developing crisis.

Rishi Sunak’s government has also been criticized for its “slow pace” and lack of transparency over compensation.

The incumbent prime minister’s insistence on waiting for the conclusion of the investigation before making a final decision on redress has “perpetuated injustice for the victims,” ​​Langstaff said.

Health officials

The report highlights how “the truth was hidden for decades” and there was evidence that documents from the Department of Health and Social Care, formerly the Department of Health and Social Security, were “flagged” for destruction in 1993.

“When we look at the response of the NHS and the government in general, the answer to the question is ‘Was there a cover-up?’ is that there has been,” it says.

“Not in the sense of a handful of people plotting an orchestrated conspiracy to deceive, but in a way that was more subtle, more pervasive and more chilling in its implications.

“In this way, a large part of the truth has remained hidden.”

NHS

Langstaff recommends a ‘culture change’ within the NHS to prevent cover-ups and acknowledge mistakes, with individual managers held personally responsible if they fail to take action.

He says repeated research and reports have highlighted how the culture of the NHS needs to shift to one where mistakes are acknowledged and there is openness and transparency.

He says there is a need for a culture change “so that safety is embedded as a first principle and is considered an essential measure of the quality of care”.

Langstaff says it is imperative that “individuals in leadership positions” are required by law to “record, consider and respond to any concerns about the health care provided, or the manner in which it is provided, when there is there appears to be a reasonable risk that a patient could suffer, or has suffered, harm.”

He added: “Any person to whom such a report is made must be personally responsible for failing to give it adequate consideration.”

The research chair argues that the “culture of defensiveness, lack of openness, inability to be open and dismissal of concerns” can be addressed by “making leaders accountable for how the culture operates in their part of the system, and for the way in which patients are concerned”.

Who should get the credit for finally taking action?

Victims and campaigners

Campaigners, including victims and their families, have fought for decades for answers, including filing civil lawsuits.

Numerous campaign groups, such as Tainted Blood and BloodLoss Families, as well as major haemophilia charities, have worked tirelessly to find the truth.

The Mayor of Greater Manchester and former Health Secretary Andy Burnham has been a long-time advocate for the victims of the scandal.

He called it “one of the greatest injustices this country has ever seen” and revealed that officials had “not told him the truth”.

Burnham said a “fundamental rewiring of the political system” was needed because too many people suffered harm and then waited decades for justice.

Theresa Mei

Theresa May eventually announced an investigation in 2017, with the first official hearing in April 2019.

Commenting on the report, she said: “I hope today that all those infected and affected by the contaminated blood scandal have received the answers they deserve.

“Once again, a community has had to fight for decades to bring the truth to light. We cannot and must not continue to allow a culture in which institutions try to protect themselves from the people who have been so damaged by their actions.”

Brian Langstaff, Research Chair

Victims have praised Langstaff for overseeing a “brilliant” investigation.

The former Supreme Court judge was appointed chair of the inquiry in February 2018.

He has previous experience of public inquiries and was lead consultant to the Bristol Royal Infirmary inquiry in 1998.

Langstaff has been praised for his compassion by many members of the infected blood community, who had said they expected his report to be balanced and fair.