Infected blood scandal victims still fighting for justice four decades on – but time is running out
The number of people who have lost their lives makes the contaminated blood scandal the deadliest man-made disaster in post-war British history
by: Caroline Wheeler
12 Oct 2023
The clock is ticking for the victims of the contaminated blood scandal. They are still dying at the rate of one every four days as the government continues to prevaricate over the establishment of a compensation scheme.
Even now as they await the findings of the Infected Blood Inquiry, which has just been delayed again until March next year, they fear that justice could still slip between their fingers.
Why? The reason was summed up succinctly by Jeremy Hunt when, as a backbench MP, he gave evidence to the public inquiry in July 2022 and said that the state can sometimes “close ranks around a lie”.
At the heart of this tragedy is contaminated blood. In the 1970s and 1980s, nearly 5,000 UK haemophiliacs contracted HIV or hepatitis C after being infected by tainted blood-clotting products. Factor VIII was seen as a miracle cure for haemophilia, a genetic disorder in which the blood fails to clot. But demand far outstripped supply, and much of the product ended up being sourced cheaply from the US.
America operated a dangerously deregulated donation system. People were paid for their blood, which meant much of it came from donors who badly needed cash. As a result, blood sourced from high-risk groups – including prisoners, sex workers, drug addicts and alcoholics – was packaged up and sold around the world.
As early as 1975, the TV programme World in Action revealed that the NHS was buying blood harvested on ‘skid row’ – the poorest part of a town where addicts typically live – leading to a hepatitis epidemic among haemophiliacs.
It wasn’t just haemophiliacs who were at risk: contaminated blood was also used in transfusions for the general population. About 35,000 people in Britain are believed to have contracted hepatitis C from contaminated blood, including Anita Roddick, the founder of The Body Shop. Much of the blood sold to British hospitals came from high-security prisons in Arkansas, where a large number of inmates were infected with hepatitis and HIV.
To make matters worse, the donations were pooled, which meant a single batch of Factor VIII could include blood from up to 20,000 donors. If just one of those donors was infected, the entire batch could be contaminated.
So far, more than 2,800 people in the UK alone are known to have died after receiving contaminated blood products in what Lord Robert Winston, the eminent scientist, described as the “worst treatment disaster in the history of the NHS”.
The number of people who have lost their lives makes it the deadliest man-made disaster in post-war British history, far outstripping the combined death tolls of other more well-known tragedies, such as Hillsborough, Grenfell and Lockerbie. Yet no organisation or individual has ever been held to account. Instead, the victims who were lucky enough to survive have spent the last 40 years desperately searching for answers.
Back in 2001, I joined them when I had my eyes opened to the scandal as a rookie 21-year-old reporter working for the Sunday Mercury in Birmingham. When I first got involved in this campaign, it was almost impossible to comprehend how these individuals could have been left to suffer for so long.
Once I had been welcomed into their world, I felt it was my duty to help them. As I rose to more senior jobs in journalism, first at the Hull Daily Mail, then at the Sunday Express and now at The Sunday Times, I kept trying to use my position to highlight the victims’ plight.
I have spent the last 20 years poring over the details of the broken lives of the victims and their families. Among them were widows who had lost husbands, parents who had lost children and children who had been orphaned.
Their stories are now told in my book Death in the Blood, which exposes four decades of tragedy, lies and coverups – but also of the courage of the brave victims and their families who refused to be silenced by the authorities, no matter how much they despaired.
In order to tell their harrowing story, I have interviewed dozens of those whose lives have been torn apart by this scandal, as well as reviewing thousands of documents, interview transcripts and statements provided to the Infected Blood Inquiry.
It is the story of a determined group of campaigners who never lost faith, and how they enlisted the support of politicians such as Diana Johnson MP and Andy Burnham, the former Labour health secretary and current mayor of Greater Manchester, who threatened to go with me to the police with a dossier of evidence that exposed what he described as a “criminal cover-up on an industrial scale”.
In what was his final speech in the House of Commons in April 2017, Burnham provided examples of inappropriate treatment given to patients, tests being done on people without their knowledge or consent, and results from such tests being withheld for several years. He labelled these “criminal acts” and compared the campaign by relatives of infected people to the efforts of the families of Liverpool football fans crushed to death in the Hillsborough stadium disaster of 1989.
He told me in an interview for the book: “From all of the work I had done on justice campaigns, from Bloody Sunday [and] Hillsborough to contaminated blood, I was clear that the same pattern of events keeps repeating. A major disaster or act of harm happened. The state would form a narrative to protect itself reputationally or financially. It would have access to all the levers of power to entrench that narrative at inquiries or inquests. And then families would be left fighting for years in the wilderness to try and unpick that narrative and get some form of redress.”
Theresa May, the former prime minister who agreed to launch the public inquiry in 2007, formed a similar view about the state’s approach to the scandal. ‘It was, in a sense, another example of a bit of the public sector that just shut its doors when there was a problem… and… refused to accept that anything had gone wrong, in the hope that it would go away. It was also clear that no one was really thinking about the impact on the people who has been affected by it,” she told me in an interview for the book.
My experience of covering this story is that governments of all colours have always let concerns about costs and liability dominate their thinking. Even when victims and their families eventually received limited ex-gratia payments in 1991 after a courtroom battle, it left a stain.
Among those awarded the payments were 1,200 patients who had been infected with HIV. They were forced by government officials to sign a contract preventing them from making any future legal claims in return for a cash payment of around £24,000. It was only after they had signed the contract that they were told they had also been infected with hepatitis C – a fact the Department of Health had known about two years earlier but failed to pass on.
Even now as the victims await the outcome of the inquiry, Hunt, who is now the chancellor and has previously been sympathetic to the cause, is still bogged down in financial considerations.
When he was recalled to give evidence to the public inquiry in July this year, he said: “It is a very uncomfortable thing to say, but I can’t ignore the economic and fiscal context – because in the end the country only has the money it has.”
Sadly, the victims of this tragedy do not have the luxury of time on their side to wait for the inflationary crisis to resolve. At least another 45 victims will die before the inquiry reports back and even then, there are fears that coming so hard on the heels of an election, the Tories will kick the can down the road yet further and pass the buck to Labour.
Time is now so much of the essence that even during the course of writing my book, two of its central characters have died. That is in addition to the thousands who have already perished.
People like Roddick, who had no idea when she helped John Bird launch The Big Issue in September 1991, that she had already been handed a death sentence.
Roddick’s efforts to change the world were dealt a hammer blow in 2004 when she was diagnosed with Hepatitis C. The blood transfusion Roddick had received during the birth of her second daughter Samantha in July 1971 had finally come back to haunt her.
The entrepreneur was told she had cirrhosis of the liver. The debilitating illness was detected following a routine blood test that was ordered as part of a medical examination to assess her suitability for a life insurance policy. The blood test indicated abnormal liver function – and subsequent tests uncovered the hepatitis C virus in her blood.
The diagnosis came as a complete bolt out of the blue for Roddick and her family. The only explanation she could find for the illness was the blood transfusion she had received 33 years earlier – long before blood donors were routinely screened for the disease.
Going public about her illness for the first time in 2007, she wrote on her website:“I have hepatitis C. It’s a bit of a bummer but you groan and move on. I had no idea I had this virus. I was having routine blood tests when it showed up.” She added, with her characteristic optimism: “I do have cirrhosis. I could still have a good few years – maybe even decades – of life left, but it’s hard to say. I could be facing liver cancer tomorrow.”
Less than seven months later, Roddick was dead. She suffered an acute brain haemorrhage at around 6.30pm on 10 September 2007, after being admitted to St Richard’s Hospital, Chichester, the previous evening suffering from a severe headache. She was just 64.
The entrepreneur’s death left a huge hole in her family’s life. Speaking after her untimely demise, her husband Gordon said: “It’s as if somebody has reached into my heart and turned out the lights.”
The question for the government now is how many more lights will be snuffed out before they finally do the right thing?