Victims of the infected blood scandal have “not been listened to” by ministers, the chair of the inquiry has said in a report urging an overhaul of the compensation system.
The additional report lays bare the failings of the government’s detailed compensation scheme, and sets out recommendations to make it fairer and faster. In particular, it criticises ministers for designing the scheme without consulting the scandal’s victims, as was recommended in the inquiry’s May 2024 report, which it says has led to “obvious injustices” that could have been avoided.
Sir Brian Langstaff, the chair of the infected blood inquiry, who authored the report, said: “For decades people who suffered because of infected blood have not been listened to. Once again decisions have been made behind closed doors leading to obvious injustices.
“The UK government has known for years that compensation for thousands of people was inevitable and had identified many of those who should have it. But only 460 have received compensation so far and many, many more have not even been allowed to begin the process.”
In a speech after the report’s publication, Langstaff criticised the government’s decision to make it “specifically forbidden for the expert group which informed the design of the scheme to talk to infected people and their families”.
He said: “It should have been unthinkable to design a scheme without properly involving people affected by the decisions being taken by the government. It seems even more inexplicable to prevent there being any involvement while the scheme was at a formative stage. Yet that is what happened.”
In the report, he criticised the “repetition of mistakes in the past” in the way the Conservative and Labour governments responded, which further damaged trust in the infected-blood community.
More than 3,000 people have already died after 30,000 were given contaminated blood products or transfusions from the 1970s to the early 90s. Campaigners have said many more risk dying without justice.
The latest figures from the Infected Blood Compensation Authority show that of 2,043 people who have been asked to start a claim, 1,674 have begun the process, of whom 616 have received an offer, at a cost to the government of more than £488m. Of the 616, 460 have received payment.
Langstaff observed in the report that although processing has sped up in recent weeks, the numbers were “profoundly unsatisfactory”.
He also set out a number of recommendations, including that affected people be able to apply for compensation rather than having to wait to be asked, and that applications for people nearing the end of their life, such as those who are older or seriously ill, be prioritised.
The campaign group Tainted Blood has estimated that at least 100 people have died while waiting for compensation since last year’s report.
Langstaff also asked the government to reconsider some of the limits it has placed on the scheme, including the exclusion of people infected with HIV before 1982 – a “liability window” he said had been introduced without any explanation – the high bar for evidencing psychological harm, which requires six months of psychiatric treatment, and limiting claims from victims of medical experimentation to those who were treated in specific hospitals.
The report also recommends greater compensation for people who were treated for hepatitis with interferons, a class of drugs that can cause severe side-effects including psychosis, depression and suicide.
It further urges the compensation authority to act with greater transparency and openness instead of failing to publish policy documents, information and minutes of its board meetings; to involve infected people and their affected family members in decisions about how the scheme operates; and to establish a stronger complaints mechanism.
Langstaff criticised the “sluggish pace” of the scheme, which had resulted in “grave concern regarding the delay in compensation being delivered”, and “the lack of any clear timescales”, which he said had left people in limbo and experiencing distress and anxiety.
He noted that the timing of the 2024 election had limited engagement with these groups and reduced the time the government had to consider proposals in the final report.
Campaigners, victims and their lawyers welcomed Langstaff’s intervention.
The chief executive of the Haemophilia Society, Kate Burt, said the government’s failure to listen to victims was “exhausting, damaging and is stripping this community of its dignity”.
“Now government must take urgent action to put this right by valuing those impacted by this scandal through a fair and fast compensation settlement,” she said.
The chief executive of the Hepatitis C Trust, Rachel Halford, said the report shed light on a “poorly designed compensation scheme that does not reflect the harm done to thousands of people affected”.
“This report should never have been needed. But we hope today can mark a turning point in this terrible scandal,” she said.
Des Collins, a senior partner at Collins Solicitors and adviser to about 1,500 victims of the infected blood scandal, said it was heartening that Langstaff had continued his “commitment last May to keep an eye on progress for the community and to hold the government to account for its response to his recommendations for compensation”.
Gene Matthews, a partner at Leigh Day, which represents 500 victims, said the report went “a long way to address the issues that our clients have highlighted”, and hoped that it would give the government and the scheme “an opportunity to rebuild trust with the community, to be transparent and inclusive going forward”.
A government spokesperson said: “This additional report reflects the unprecedented nature of the infected blood scandal and the thoroughness of the inquiry’s investigation.
“We are grateful to the inquiry for its ongoing work. We will now consider all of its recommendations. Over £300m has been paid to victims since the compensation scheme opened last October and we are taking action to enable a quicker compensation process.”
• This article was amended on 10 July 2025 to correct the surname of Gene Matthews.
