Infected blood: UK reckons with its worst health scandal

LONDON — It’s been called the worst treatment disaster in the history of the National Health Service.

Thousands of people in the U.K. died — with many more falling ill — after being treated with unsafe blood products between 1970 and 1991.

But, decades after they were let down by the state, British victims of the world-wide infected blood scandal are still waiting for amends.

On Monday, the official inquiry into what went wrong finally reports. And families hope it has their back. More than 1,000 people including victims and journalists are due at Central Hall Westminster for a report that’s expected to run to more than 2,000 pages. Prime Minister Rishi Sunak is expected to formally apologize in the House of Commons later.

After years of waiting for redress, Chancellor Jeremy Hunt is poised to approve a multi-billion pound package to compensate those swept up in the scandal — but the devil will be in the details.

As the inquiry carried out its work, POLITICO spoke to some of those whose lives were turned upside down by the scandal — and asked them what they wanted to see next.

What is the infected blood products scandal?

Put simply, it’s about a failure to keep patients safe — compounded by a perceived refusal by the government to acknowledge mistakes and then support victims with proper compensation.

Thousands of patients — many who had hemophilia, an inherited blood clotting disorder — were treated by the NHS during the 1970s and 1980s with blood products later found to have been contaminated with HIV and hepatitis.

Up to 2,900 people, including young children, are estimated to have died by 2019, with many more becoming severely ill. Those affected were undergoing regular medical treatment and had no reason to think they were in danger.

Hemophiliac Nigel Hamilton was infected with Hepatitis C during routine eye surgery aged 16 in 1976 — but it would be more than a decade before doctors confirmed his diagnosis. It was missed at the height of the AIDS crisis, when medics were mainly focused on testing for HIV “I wasn’t allowed” to use the family’s cutlery, the former haulage firm manager from Belfast told POLITICO last year. “I had to keep mine on a separate shelf.” He later lost his career and needed a liver transplant.

Ronald Scott, an Edinburgh-born computer programmer, was infected with HIV and Hep C between 1981 and 1983. He and his wife Barbara kept his diagnosis secret until months before his death in 1993, 10 days after his 50th birthday. Some of her colleagues found out only when she gave evidence to the inquiry.

Hemophiliac Nigel Hamilton was infected with Hepatitis C during routine eye surgery aged 16 in 1976 — but it would be more than a decade before doctors confirmed his diagnosis. | Jane Barlow – WPA Pool/Getty Images

Scott’s daughter Katie, who was 19 when he died, said last year: “It was about protecting everybody from the normal emotional fallout from terminal illness, with the stigma on top — you might have had bricks thrown through your window, or your professional life becoming impossible.”

How did it happen?

One key aspect of the scandal was the use of factor concentrate to treat hemophiliacs.

The then-revolutionary treatment was created by pooling blood plasma from thousands of donors and concentrating it to extract the clotting agent. This could then be used at home and meant patients were able to treat themselves before they had a potentially fatal bleed.

But while extracting factor concentrate was seen as a huge step forward in terms of treatment, just one contaminated sample could infect an entire batch — and there are questions over whether the government was sufficiently alive to this risk.

Faced with a shortage of blood supplies in the U.K, the NHS imported products from the United States — where paid donor schemes saw high-risk groups including drug addicts give blood, which was then used in the U.K.

For some families, the consequences were devastating.

Coventry-born former carpenter Jonathan Evans died in 1993 after being infected with HIV and Hepatitis C.

Coventry-born former carpenter Jonathan Evans died in 1993 after being infected with HIV and Hepatitis C. | Hugh Hastings/Getty Images

His son Jason — the founder of the Factor VIII campaign group (named after the blood product responsible) — said his only living memory of his father is from his fourth birthday: “He was just dying of AIDS in a bed in his parents’ home … I remember being stood in there with one of the original Game Boys in my hand, seeing all the tubes and things, but having no realization of the gravity of the situation.”

What do victims want?

Evans says victims’ hopes for Monday are about much more than compensation — they want to settle the narrative of what went wrong, and avoid another scandal in the future.

They’ve already faced a tortuous journey to a public inquiry.

Way back in 1990, several patients infected with HIV launched a legal battle, followed by a group infected with hepatitis 10 years later. But while other nations affected by similar scandals began making redress, British governments of all political stripes batted away calls for a full, statutory public inquiry for decades.

Various no-fault payment schemes were set up over the years, although they were criticized as patchy and inadequate, and unfavorably compared to a scheme launched in the Republic of Ireland back in 1995.

Campaigning MPs are watching for real signs that the government machine now accepts its mistakes. “What I think Sir Brian needs to address is how for decades this was not accepted by government,” Home Affairs Committee chair Diana Johnson told POLITICO. “There was a cover-up for 40 years” and neither Labour nor Tories will emerge from it well, she predicts.

It wasn’t until 2017, when 500 people brought a legal challenge, that then-Prime Minister Theresa May ordered the current probe. A government-commissioned report in 2020 by the lawyer Robert Francis theorized that compensation could end up at anywhere from £50,000 for a mild disease to £315,000 for co-infection with two severe diseases. But it stressed this was only an “illustration.”

In a significant moment in 2022, the government agreed to provide victims of the scandal with £100,000 of interim compensation. However the payments did not cover many parents and children of those who had died.

Johnson points out that the inquiry actually set the framework for compensation 13 months ago — and yet victims are still waiting. “It is really galling that we could have been dealing with this last April,” the MP says. “There’s no reason that this all couldn’t have been set up and ready to go from [today].”

There’s much more to it than financial redress, however.

For Evans, the most important finding would be a statement that blood products “never should have been introduced until they were heated.” He points out that one plasma product, albumin, “was being heated since the 1940s specifically to kill hepatitis in that product. And yet in the 70s, that wasn’t done … the evidence seems to suggest because the manufacturers didn’t want to put the money in.”

He wants acknowledgment that the NHS should have known from the start not to buy in Factor VIII made from tens of thousands of donors’ blood plasma mixed together. “A lot of the media narrative of this is still stuck in the old narrative before the inquiry that we weren’t self sufficient, and slowly in the 70s, we began to learn more,” says Evans. “But where the inquiry is going is that the knowledge on this existed decades before the ’70s.”

Indeed, a World Health Organization report in 1952 said plasma should not be made from pools of more than 20 people, due to the risk of hepatitis infection. Yet 20 years later the scale of such practice was industrial.

As victims like Evans wait to pore over the detail of the report — and the fine print of the government’s big compensation plan expected Tuesday — they’ll be hoping the long wait for some measure of justice is finally over.

Bethany Dawson contributed reporting.