Victims of the infected blood scandal say they are “waiting to die in limbo”, with just hundreds having received compensation to date.

For decades, more than 30,000 NHS patients were knowingly given infected blood products, and more than 3,000 people died as a result. Survivors are left living with long-term health complications, including HIV and hepatitis.

An inquiry into the scandal, which published its final report in May 2024, accused the NHS of a “pervasive cover-up”. Recompense payments for the victims and survivors were ordered, with the government setting aside £11.8bn to do this.

Earlier this year, the inquiry was reopened to examine the “timeliness and adequacy” of the compensation, and its report – published today – has accused the scheme of “perpetuating” harm.

Just 2,043 people have been asked to start a claim, 616 have been made offers, and 430 of those have been paid.

“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,” says Sir Brian Langstaff, chair of the Infected Blood Inquiry.

“It is not too late to get this right. We are calling for compensation to be faster, and more than that, fairer.”

In his latest 210-page report, Sir Brian says yet more people have been harmed by the way they have been treated by the scheme.

It highlights how the compensation scheme was drafted without any direct involvement from the people most affected – the expert group that advised the government on how financial support should be delivered was not allowed to take evidence or hear from any victim of the infected blood scandal.

“Obvious injustices” within the scheme include the exclusion of anyone infected with HIV prior to 1982 and the unrealistic requirements for proving psychological harm.

HIV infections before 1982

The current scheme means any person infected with HIV before 1 January 1982 will not be compensated – something the latest report calls “illogical and unjust”.

The rule “completely misunderstands (or ignores) the central fact that blood products used [before this date] were already known to carry a risk of a dangerous virus – Hepatitis”, the report says.

The rule appears to have been made based on legal advice to the government.

One mother says her daughter was invited to claim compensation, only to be told she was likely “ineligible” because she had been infected prior to 1982.

“To reach this stage of the proceedings to be faced with the unbearable possibility of her claim being declined is yet another nightmare to be somehow endured… This unbearable and intolerable situation is cruel and unjust,” she says in the report.

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Trust between citizens and state destroyed in infected blood scandal

One person who is not named in the report said: “It feels as if we are waiting to die in limbo, unable to make any progress in our lives and fearing that as our health declines, we may not ever get the compensation we deserve.”

Unrealistic expectations

The report also highlights the unrealistic evidence requirements for someone proving psychological harm.

The current regulations require a consultant psychiatrist to have diagnosed and treated someone, either as in-patient, or in hospital for six months.

But the report says, at the time the scandal was unfolding, “consultant psychiatric services were not the norm across every part of the country”.

“It would be wrong to set a requirement for compensation that such services be accessed when it was not a practical proposition that they could be.”

Those infected were also unlikely to have told even close friends and family about their diagnosis due to the stigma and ostracism.

Therefore, the expectation of having received medical care “would have involved revealing to an unknown clinician what that person dared not reveal, especially if there was a chance that it might leak out”.

Other exclusions

The report also highlighted other exclusions within the compensation scheme.

It says the “impacts of infection with Hepatitis is not being fully recognised in the scheme as it stands”. The scheme also fails to recognise the devastating impacts of interferon, used to treat Hep C. The vast majority of people who received interferon suffered severely, both psychologically and physically.

The compensation regulations also withdraw support for a bereaved partner if the infected person dies after 31 March this year. The argument being that they are eligible for compensation in their own right as an “affected” person.

But removing these payments immediately after death means infected persons “see themselves as worthless and [ignites] fears of leaving partners destitute”.

One man reports being denied compensation as victims of medical experimentation because – despite having evidence it took place – the hospital where he was infected was not named in the regulations.

Read more:
Infected and experimented on

The report issued a number of recommendations to speed up the process.

It says people should be able to apply for compensation, rather than wait to be asked.

The compensation authority should also progress applications from different groups at the same time, giving priority to those who are most ill and older, or who have never received any form of financial support.

It also says anyone who has evidence of being the victim of medical experiments should be compensated for it, regardless of where they were treated.

The report calls for more transparency and openness, as well as involvement from those infected and affected.

Support groups react to latest report

Kate Burt, Chief Executive of the Haemophilia Society, said the government’s “failure to listen to those at the heart of the contaminated blood scandal has shamefully been exposed by the Infected Blood Inquiry yet again”.

“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 says. “Only then can the infected blood community move on from the past and finally focus on what remains of their future.”

A lawyer advising some 1,500 victims says some of the recommendations “can and should be implemented immediately”.

Des Collins, senior partner at Collins Solicitors, says: “We also urgently need transparency of the timetable for the affected and an acceleration of the payment schedule to them.”

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