How a public inquiry into contaminated blood exposed decades of denial
Katie and Ronald Scott, 1984
10 min read
Earlier this month, one of the most extraordinary public inquiries in United Kingdom history held its final public evidence session.
Established by Theresa May in 2017, the Infected Blood Inquiry was tasked with examining how thousands of patients in the 1970s and 1980s were infected with hepatitis and HIV after being treated with contaminated blood products. More than 2,400 victims are known to have died; thousands more – the true figure remains unknown – had their lives blighted. Those left behind – partners, parents, children – suffered devastating and lifelong harm, often in private as a result of stigma.
Disgracefully, the scandal was effectively covered up for more than four decades, with successive governments insisting they had done nothing wrong, obscuring what had happened and refusing to properly support or compensate victims.
But over the last five years – with painstaking evidence from victims and their families, medical professionals, lawyers, pharmaceutical experts, government officials and ministers – that position has crumbled.
It has been a gruelling experience for those involved. Denise Turton’s son Lee, born a haemophiliac, was infected with contaminated blood at the age of four. He died six years later, in January 1992.
In October 2019, Denise and her husband, Colin, travelled to London from their home in Cornwall to give their testimony.
Denise spoke about how Lee’s condition had been leaked, resulting in journalists banging on their windows, parents saying they didn’t want him at their school, and one teacher even refusing to teach him.
She described how her son’s health deteriorated to the extent that by the end “he couldn’t walk far, he couldn’t breathe, he couldn’t eat, he was eventually fed through a tube”. During the hearing they watched, for the first time, a video of Lee recorded a month before he died.
Since that day, Denise has watched almost all every minute of the inquiry from home – hundreds of hours of evidence sessions – on her laptop. “I don’t think health-wise it does you any good,” she says. “It takes over your life... but then it’s always taken over our life. I had to do it for my son.”
For others, the inquiry has often felt too triggering. Katie Scott’s father Ronald died in 1993, 10 days after his 50th birthday, when she was 19. She had just started university and dropped out when he became seriously ill to support her mother.
She spent her 20s feeling “incredibly angry”, coming to terms with the loss and the way his illness had been hidden from her. She recalls the stigma: “The first thing anyone asks you is ‘what happened?’.”
Thirty years on, she explains how those years shaped her life: “the way I’ve navigated my life has been always trying to anticipate the worst thing that might happen in any situation.” Many speak of issues with trust and forming relationships.
Scott, who now works as a headteacher in south London, has had to limit her exposure to the inquiry. “Every time you think about it or watch it on TV you’re still an 18 year old again,” she says. “it’s not something you can entertain every day, it’s just too awful.”
At the outset, many victims were sceptical.
Families had seen successive generations of political promises turn to dust. As Sue Threakall – who has been campaigning since her husband Bob died in Birmingham in 1991, aged 47 – puts it: “MPs say the right things, then as soon as they get anywhere near power, they forget all about you.”
They were chastened by the experience of the Penrose inquiry in Scotland, which ran from 2008 to 2015 but lacked powers to summon anyone. The Department of Health did not cooperate, and ultimately the inquiry apportioned no blame. Victims called it a “total whitewash”.
After repeated disappointments, bereaved families effectively turned themselves into semi-professional campaigners, sharing information and discussing developments on an array of Facebook groups. It is a remarkable community, brought together in the most awful circumstances.
They point to several key moments in this inquiry.
A crucial difference has been the man at the centre of things: Sir Brian Langstaff. A former judge, he has proved a model chair: methodical, even-handed and compassionate. Threakall describes him as the “first person in any level of authority who has treated our community with dignity”.
Steadily, Langstaff built up a picture of what successive governments knew about the risks they were taking in importing blood products and not requiring them to be heat-treated, and how they failed to change course even as evidence of harm mounted.
Along with the accounts of families, the inquiry heard about institutions such as Treloar College, a school for haemophiliac children near Alton, Hampshire.
Nearly 100 boys were infected after being treated with Factor VIII, a new blood product. All but 17 have since died. In letters unearthed by the inquiry, doctors describe the school as a “research project” at which boys (haemophilia primarily affects males) were brought together to provide “an opportunity to study the disease”.
A former headteacher confirmed the school was “experimenting with the use of factor VIII,” and it was revealed that no consent was sought from parents for trialling the unproven treatment.
There was evidence from others who had known things weren’t right. Threakall recalls the words of Susan Daniels from the Macfarlane Trust, a charity tasked by the government with administering a meagre compensation scheme and deciding who should and should not be eligible for payments.
“She was asked about how she dealt with it all, having to make these decisions, and she said she would just get on the train on the way home and sit and cry. It’s important we had people like that backing us.”
MPs say the right things, then as soon as they get anywhere near power, they forget all about you
Two key moments came in July 2021. First Penny Mordaunt, paymaster general at the time and long seen as an ally by campaigners, agreed to commission an independent study into compensation and redress for victims.
The ensuing report by Sir Robert Francis laid the groundwork for an initial interim payment scheme – critical given that on average a victim dies every four days – and provided a forensic case for the scheme to be widened.
That same month, it was current Chancellor Jeremy Hunt’s turn to give evidence. Hunt had been health secretary between 2012 and 2018, but was at the time on the backbenches.
He was asked about a briefing ministers were given by Department of Health officials in 2012, which suggested contamination of patients in the 1970s and 1980s had been an “unavoidable problem”.
“That briefing [was] wrong,” Hunt replied. He went on: “I am afraid institutions and the state sometimes close ranks around a lie, and I think that has happened in this case.”
This followed a hearing two weeks earlier at which Andy Burnham, another former health secretary, had described the Department of Health as grossly negligent and suggested there may be a case for charges of corporate manslaughter.
“Hunt’s evidence was a huge moment,” says Jason Evans, a campaigner whose father died aged 31 after contracting Hepatitis and HIV, when he was four years old. “Everyone expected Burnham to be forthright, but no one expected Hunt to say what he did. It was the first time such a senior figure had put it so bluntly. It was a huge change and it opened the way for others.”
Hunt followed his evidence with a joint letter, signed by Burnham and a third former health secretary, Matt Hancock, calling for immediate compensation payments. “We’ve waited far too long,” he said on Radio 4’s Today programme. “We need to recognise this as a terrible, terrible injustice.”
On the last day of the hearings, Langstaff made a short personal statement as he brought the evidence session to a close.
He thanked “those who were here in spirit and those who couldn’t bear to be” and acknowledged that “time brings losses; each individual one matters. Deeply.” He paid tribute to “the sense of community, resilience and patience with which you have continued to support one another, and this inquiry”.
I am afraid institutions and the state sometimes close ranks around a lie, and I think that has happened in this case
Yet even after five and a half years, there is a long way to go. Langstaff will receive final submissions from core participants, and is due to publish his final report and recommendations by the middle of next year.
Many campaigners – including those in Parliament – see it as a worrying sign that the government is still stalling on issues, like allowing more families to register for support.
Philippa Whitford, SNP health spokesperson and a former surgeon, said ministers’ insistence that they cannot do anything more until the inquiry has concluded is wrong-headed.
“Why are they still dragging their heels? After all the evidence we have heard, they are still hiding behind excuses. They would do themselves much better if they weren’t dragged kicking and screaming and fighting over every pound coin for people who either lost their lives or effectively lost their entire lives fighting for justice.”
She and other MPs organised a Westminster Hall debate to discuss the infected blood scandal. “We are restarting the campaign inside Parliament,” she says, and intend to remind the new Chancellor of his words.
Compensation is important. An investigation by The House in August revealed that almost two-thirds of families of those infected in England have never received any compensation.
That includes children who lost parents and parents who lost children. “Some people remain in real financial hardship, and compensation could be a lifeline,” says Evans.
More important for many – after so many decades – is vindication and accountability. As Threakall says: “I’ve lost friends… I’ve been portrayed as a money grabber, people saying ‘you’re still going on about that are you? Get over it’… it needs to be spelled out to the nation what happened.”
Many want to see those accountable named. They also want to see contaminated blood products acknowledged on victims’ death certificates, citing a recent landmark ruling by a coroner in the case of campaigner Steve Dymond, who died in 2018, aged 62.
They are also looking beyond their own campaign. Some have been talking to counterparts from the Hillsbororough and Grenfell campaigns, noting what they see as similarities in the way powerful institutions cover up, obstruct and deny.
“Phase one of the Grenfell recommendations hasn’t been implemented,” Evans says. “The government still hasn’t responded to the Hillsborough review. There’s foot dragging across the piste.”
They talk about ways of changing the law to prevent such coverups and ensure people in power can be held accountable for their actions. If their experience has been “a failing of our democracy”, as Hunt put it, then they want to ensure such a failing can never happen again.
“That,” Threakall says, “would be a legacy”.
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