Thousands more people could have been caught up in the infected blood scandal without realising, experts have warned – as a damning report exposed a ‘catalogue of failings’ dating back decades.
More than 3,000 patients died and many continue to suffer after tens of thousands of vulnerable patients were infected with HIV and hepatitis from contaminated blood products during the 1970s and early 1990s.
Inquiry chairman Sir Brian Langstaff today identified shocking failures covering multiple governments, politicians and health organisations, with victims repeatedly lied to, misled and ignored, and children treated like ‘objects for research’.
Campaigners today called for a Mr Bates vs The Post Office style drama to keep the issue at the forefront of the public’s consciousness – as victims continue to battle for a £1billion compensation package.
Yet the true scale of the scandal may be even bigger than currently thought, with more than 1,700 people believed to still be unknowingly living with hepatitis C after being infected with contaminated blood products during the 1970s and 1980s.
Experts have called the news ‘gravely concerning’ and called for anyone who might have had a blood transfusion in the 1970s, 80 or 90s and feels concerned about their health to take up the offer of a free hepatitis C test.
Cressida Haughton (left) who’s father Derek and Deborah Dennis who’s father Dennis died, outside Central Hall in Westminster today
Contaminated blood scandal victim Colin Smith (pictured aged six in 1988) died aged seven in 1990 after contracting HIV from a dose of blood clotting protein Factor VIII
The BBC has reported that 12,800 people in England have requested NHS home-testing kits in just over a week, compared with 2,300 in the entire month of April.
Survivors and families of infected blood victims have been involved in a 40-year fight for compensation and an apology from Government over the way they were treated.
But a further 1,750 people, mostly women, are thought to still be unknowingly living with hepatitis C after being infected with contaminated blood products decades prior.
This figure was obtained by a BBC investigation, examining documents submitted to the official Infected Blood Inquiry.
Other estimates of the unknown figure are higher, with some charities saying ‘thousands’ may have been infected this way.
In his report, Sir Brian Langstaff said that the contaminated blood disaster is ‘still happening’ because patients who suffered ‘life-shattering’ infections continue to die every week.
His searing findings will heap further pressure on Prime Minister Rishi Sunak and Chancellor Jeremy Hunt to immediately settle the estimated £10 billion compensation bill for those affected.
The former judge said: ‘In families across the UK, people were treated by the NHS and over 30,000 were given infections which were life-shattering. Three thousand people have already died and that number is climbing week by week. Lives, dreams, friendships, families, finances were destroyed.
‘What I have found is that disaster was no accident. People put their trust in doctors and the government to keep them safe and that trust was betrayed.
‘Then the government compounded that agony by telling them that nothing wrong had been done, that they’d had the best available treatment and that as soon as tests were available they were introduced and both of those statements were untrue.
‘That’s why what I’m recommending is that compensation must be paid now and I have made various other recommendations to help make the future of the NHS better and treatment safer.’
Key failures highlighted in the report include:
- A failure to act over risks linked to contaminated blood – some of which were known before the NHS was established in 1948;
- The slowness of the response to the scandal; for instance, it was apparent by mid-1982 that there was a risk that the cause of Aids could be transmitted by blood and blood products but the government failed to take steps to reduce that risk;
- Tests on blood were not introduced as quickly as they could have been;
- Patients and the wider public were given false reassurances;
- There were delays informing people about their infections – sometimes for years – and they were told in ‘insensitive’ and ‘inappropriate’ ways;
- Patients were ‘cruelly’ told repeatedly that they had received the best treatment available;
- People with bleeding disorders were treated without proper consent and research was carried out on them without their knowledge;
- Children with bleeding disorders who attended Treloar College, where pupils with haemophilia were treated at an on-site NHS centre, were treated as ‘objects for research’. The report said these children were given ‘multiple, riskier’ treatments. Other children with bleeding disorders were also given treatment ‘unnecessarily’;
- Regulatory failures, including the licensing of dangerous products, and failure to remove them from the market when concerns were raised;
- Instead of ensuring a sufficient supply of UK-made treatments for haemophilia, the NHS continued to import the blood clotting blood plasma treatment Factor VIII from the US – where manufacturers paid high-risk donors, including prison inmates and drug users. The UK blood services continued to collect blood donations from prisons until 1984;
- In terms of blood transfusions, blood donors were not screened properly and there were delays in blood screening. Too many transfusions were given when they were not necessarily needed.
More than 30,000 people in the UK were infected with HIV and hepatitis C between 1970 and 1991 after being given contaminated products, largely to treat those with the blood-clotting disorder haemophilia or who required transfusions following childbirth.
High-profile victims include Body Shop founder Anita Roddick and Olympic swimmer Sharron Davies’s mother Sheila, who both contracted hepatitis C following transfusions of infected blood.
Ms Davies broke down in tears on TV today as she told how her mother had developed liver cancer in her forties after being given contaminated blood during an operation, while Dame Anita’s daughter Samantha called the scandal ‘a collective injustice’.
Sir Brian Langstaff said there was a severe lack of blood screening and a lax attitude to who was donating – despite the fact the government was importing products which had an increased likelihood of being unsafe.
He said children were treated as ‘objects for research’ after being given ‘riskier’ products made from multiple sources while staying at Treloar College, a boarding school for the sick.
Yet patients were kept in the dark about the ‘knowingly unacceptable risks of infection’, while doctors and politicians repeatedly parroted the unfounded claim that the treatment was the ‘best’ available – and was actually saving lives – despite mounting Press reports raising concerns.
He said doctors gave ‘false assurances’ to patients, and criticised politicians including the late Prime Minister Lady Margaret Thatcher and her successor John Major for ‘cruelly’ repeatedly using ‘inaccurate, misleading and defensive’ comments about the safety of blood treatment products.
And Sir Brian found her Tory government did not address the risks posed by the AIDS virus, while crucial patient records were also destroyed.
He empathised with campaigners, who he said were ‘forced into a decades-long battle for the truth’, who felt the scandal had been covered up.
He said: ‘A lack of openness, a lack of inquiry, a lack of accountability and elements of downright deception have led to a lack of trust in those responsible for the treatment – that is, their treatment both medically and as citizens of a democratic state – and this has in turn done further damage to them.’
Sir Brian directed particular criticism at Kenneth Clarke, now Lord Clarke, the health minister from 1982 to 1985 as the global AIDS threat deepened.
He accused Lord Clarke of being ‘unfairly dismissive of, and disparaging towards, many who had suffered physically, mentally, socially and financially from what occurred’ and described his evidence as ‘argumentative’.
Chairman of the infected blood inquiry Sir Brian Langstaff (left) with victims and campaigners outside Central Hall in Westminster today
Protesters hold banners showing victims of the scandal as they waited to enter Methodist Central Hall
A woman holds a bouquet of flowers in the colours of the infected blood campaign
Blood vials containing personal messages from families affected by the infected blood scandal are seen today in a memorial installation within Methodist Central Hall
Sir Brian said children were treated as ‘objects for research’ after being given ‘riskier’ products made from multiple sources while staying at Treloar College, a boarding school for the sick
Steve Nicholls, from Farnham in Surrey, attended Treloar’s between 1976 and left in 1983. In his class of 20 boys, only two are still alive
Rishi Sunak will apologise to infected-blood victims on Monday, as a devastating report blames successive governments and the NHS for the scandal
He said that also ‘extended to his questioning why he should have been asked to give any evidence at all to the inquiry’, as he had ‘nothing to do with blood transfusion or products’, and that he was linked to the scandal by campaigners because he ‘later became a well-known figure’.
Sir Brian said the content of Lord Clarke’s evidence ‘will have aggravated the distress and upset of many’.
He said there were ‘systemic, collective and individual failures to deal ethically, appropriately, and quickly’ with the risk of infections and their consequences.
Sir Brian wrote: ‘Many of those infected and affected by this disaster, in addition to dealing with the consequences of the original infection, have been forced into a decades-long battle for the truth.
‘Successive governments claimed that patients had received the best medical treatment available at the time, and that blood screening had been introduced at the earliest opportunity. Both claims were untrue.’
Many campaigners gathered in central London this morning as Sir Brian presented his final report, six years after the inquiry began.
The scandal began in the early 1970s when new blood clotting products were developed to treat people with bleeding disorders.
A shortage of blood in the UK led ministers to source cheap batches from the US where supplies relied on high-risk donors, including drug addicts.
But the products were made by pooling the blood plasma from tens of thousands of donors and a single contaminated donation could be enough to infect an entire batch.
By the mid-1970s there were repeated warnings that the US products carried an increased risk.
Colin and Denise Turton lost their son Lee when he was just 10 from Hep C and HIV
Lee was just two when he was given infected blood to treat his haemophilia
Mike Dorricott lies dying, at just 47, of liver cancer having contracted hepatitis C from contaminated NHS blood
Mike as a schoolboy. He was infected in 1982 before dying in 2015 aged 47 after years of suffering
Ade Goodyear (left, recently; and right, aged 12) suffered from severe haemophilia as a child and, in 1990 aged nine, was given the new treatment Factor VIII. He was later given three years to live, but survived
The inquiry heard that by 1983, Department of Health doctors acknowledged privately that it ‘may be possible’ that Aids was being transmitted in this way.
But the inquiry was told that ministers were not informed and continued to insist publicly that there was ‘no conclusive proof’ of a problem.
About 6,000 people with haemophilia and other bleeding disorders were treated with contaminated products.
Around 1,250 were infected with HIV, including 380 children.
Some unintentionally infected their partners. Fewer than 250 are still alive.
Others hit by the scandal include thousands given blood transfusions between 1970 and 1991. broke down in tears on TV today as she told how her mother had developed liver cancer in her forties after being given contaminated blood during an operation.
Lee Turton died aged just 10 from Hep C and HIV after being given infected blood to treat his haemophilia aged two.
His parents, Colin and Denise, said prior to the report’s publication today that they had been ‘lied to for 40 years’ and ‘just want justice’.
Nicky Calder was given an infected blood product to treat haemophilia before being diagnosed with HIV in 1985 and dying in 1999 aged 25
Olympic legend Sharron Davies broke down in tears on TV today as she told how her mother had developed liver cancer in her forties after being given contaminated blood during an operation
Colin and Jan Smith, lost their son Colin Jnr in 1990 aged seven after he contracted HIV, today claimed he was used in ‘secret trials’ because he was ‘cheaper than chimpanzees’ to test on and called for those responsible to be prosecuted.
Others included Mike Dorricott, infected in 1982 before dying in 2015 aged 47 after years of suffering, and Nicky Calder, who was diagnosed with HIV in 1985 and died in 1999 aged 25.
Nicky’s mother, Rosemary, said his death ‘destroyed’ her life and led to the breakdown of her marriage.
It has been estimated that one person dies as a result of infected blood every four days.
Commenting on the report, Rachel Halford, chief executive of the Hepatitis C Trust, said: ‘After decades of relentless campaigning, this community finally has answers in black and white. Systemic, collective and individual failings and cover-ups have led to one of the gravest disasters this country has ever seen.
‘Among its shocking findings, the report has brought to light evidence that much more could have been done to prevent hepatitis C and HIV infections from blood and blood products, and to help those infected. But, far beyond these failings, it makes clear that people – including many children – were deliberately given deadly viruses, treated as ‘objects for research’.
‘Over decades, instead of acting to protect people, the Government and the health system have sought to delay, defer, and hide the truth from the people they’d harmed.
‘They must now take full responsibility. We urge the Government to stop its endless delays and to act.’
Slow progress on the infected blood scandal means that many of those responsible will never see justice, victims of the disaster said.
The Haemophilia Society chairman Clive Smith said: ‘One of the aspects that sadly, the delay has caused, is the fact that there are doctors out there who should have been prosecuted for manslaughter, gross negligence manslaughter, doctors who were testing their patients for HIV without consent, not telling them about their infections.
‘Those people should have been in the dock for both gross negligence manslaughter. And sadly, because of the delay, that’s one of the consequences that so many people will not see justice as a result.’
Andy Evans, chairman of the Tainted Blood campaign group, added: ‘This has gone on for so long now that people that were around at the time will be very hard to track down if they’re even still alive.’
The delay ‘really is in this case, justice denied,’ he said.
‘No sense of victory’: Heartbreaking victims of the infected blood scandal say their whole lives have been overshadowed by agony as inquiry report finally vindicates them
By Chris Pollard
Victims of the worst treatment disaster in the history of the NHS said they felt ‘no sense of victory’ when the Infected Blood Inquiry concluded today — as the agony they have suffered has ‘completely overshadowed’ their lives.
Tens of thousands of people in the UK were infected with HIV and hepatitis after they were given contaminated blood and blood products between the 1970s and early 1990s.
They include people who needed blood transfusions for accidents, in surgery or during childbirth, and people with blood disorders who were treated with donated plasma or blood.
Up to 6,000 people with haemophilia were infected with hepatitis, and 1,250 of them were also infected with HIV. Of the group who were infected with both hepatitis C and HIV, only around 250 are still alive today.
Among them is Andy Evans, 47, who was infected when he was just five years old. He started a campaign group called Tainted Blood in 2006, calling for justice for victims.
Andy Evans was infected with HIV and hepatitis from his haemophilia treatment when he was just five years old
Andy was given Factor VIII blood product imported from the US, much of which came from blood donations given by prisoners, prostitutes and drug addicts for cash
Andy has spent years campaigning for victims of the blood scandal
His parents were told about his HIV infection when he was 10 and warned that he may only live five years. They waited until Andy was 13 to tell him.
He said: ‘At that age, my immune system was being severely impacted I had to go on to very high doses of AZT, the only anti-HIV drug that was available at the time.
‘That made me very ill and I suffered with terrible sickness at school. But I couldn’t tell anyone – we were told to keep it quiet.
‘There was terrible stigma around HIV at the time. There was the famous falling tombstone advert, with John Hurt saying ‘don’t die of ignorance’, which scared everyone.
‘I know one family who had ‘AIDS DEAD’ scratched into their car bonnet and ‘AIDS SCUM’ painted in 6ft-high letters on their house, because their five-year-old son was impacted by HIV and it leaked out somehow.
Andy spent a lot of time in hospital during his teenage years, and his parents were constantly being warned that he could die as a result of an infection
Andy with Neil Tennant of the Pet Shop Boys, who was a trustee of the Aids Foundation
‘It was drummed into us that we couldn’t tell anyone – it was a disease that you had to suffer in silence.
‘When I was 16, they declared me as having full-blown AIDS. My parents were told to let me go – that my next infection would be my last. And when I survived that, then the next infection. So they were in a constant cycle of preparing to lose their son.
‘God knows how, but I survived four years in hospital, and new medications came out that allowed me to rebuild my immune system.
‘I started talking to others who were infected with HIV through haemophilia treatment. People had started digging into the scandal and had come to the conclusion that perhaps it wasn’t just a terrible mistake after all, that maybe there was some malintent going on.’
Andy’s dad Jim died aged 76 in 2003 without seeing justice for his son. His mum Sue, who will turn 70 on Wednesday, and younger sister Kate, 43, continue to stand by him.
Andy said: ‘Kate was 12 when I went into hospital pretty much full-time with AIDS, and all my parents’ attention was focused on me. She was pretty much left to bring up herself. She carries a lot of the hurt that she suffered during childhood, and it’s been really difficult to rebuild family relationships over the years.
‘I want vindication for all that we’ve been shouting about all these years. We need Sir Brian Langstaff to rubber-stamp what we’ve known for years.
‘You tell people about this scandal and they say, ‘No, that can’t be true, the NHS wouldn’t do that, the Government wouldn’t do that.’ But they did.
‘That’s what we hope to come out of this today. People just want answers to be recognised by officialdom. They want to be able to move on with their lives as best they can. And I think a lot of people are hanging on just to make sure that those answers are out there, that people know what they’ve been through, and they don’t have to suffer in silence any more.’
Most of the infections stem from a blood product called Factor VIII that was imported from the US because the NHS was low on supplies. However, Factor VIII was often taken from high-risk groups including drug addicts, prostitutes and prisoners who had donated their blood for cash.
Campaigner Jason Evans, whose father Jonathan was infected with HIV and hepatitis C and died in 1993, said the scandal has ‘blanketed’ his entire life.
Jason Evans with his father Jonathan, who died when he was four
Jonathan Evans was infected with HIV and Hepatitis C after receiving the Factor VIII blood product
Jason’s mother was sacked after hisfather was infected with HIV
The 34-year-old, from Coventry, said he remembers being with his father was on his fourth birthday, by which time he had been ‘ravaged’ by Aids. He died not long after.
Jason said: ‘For me, there was no life before the infected blood scandal. My first memories of my dad are of him dying of Aids, being at his funeral, dealing with the fallout of that, seeing my mum just crumble to pieces because of everything that happened, being at school and hearing kids call me ‘the Aids boy’ and me not knowing why.
‘To some extent, I have become quite numb to it. A question I’ve thought about is, ‘What will I tell my one-year-old daughter about this when she’s older?’ and I’m really not sure.
‘One thing I know is that I don’t want this scandal to alter the life course of another generation of my family. It certainly altered the trajectory of my life.’
Jason said he has pursued justice for victims 24/7, adding he ‘went to sleep thinking about it and woke up thinking about it’.
‘I think in some strange way this whole thing has been about trying to find some connection to my dad,’ he said. ‘But it won’t bring him back.
‘There’s no victory in this campaign. Maybe there will be compensation, maybe some people will be stripped of their honours, maybe some doctors will be struck off the General Medical Council register – but none of it is a victory in my eyes.’
After his father was diagnosed with HIV, Jason’s mother was sacked from her job at a local bakery.
Highlighting the poor understanding of HIV and Aids that was prevalent, the bakery’s owner said at the time: ‘I know at the moment the disease is dormant in her husband, but he could contract it at any time and pass it on to her. We have food around, and I feel this is the wrong sort of place for Mrs Evans to work. It could have been a real hazard.’
Ros Cooper, from Bewdley, Worcestershire, was 19 when she discovered she had been infected with hepatitis C while being given treatment for a bleeding disorder.
Ros Cooper says today’s inquiry report has been a long time coming
She told Radio 4’s Today programme: ‘This has been such a long time coming. Having campaigned for 30 years, to feel like we might actually have been heard, and the truth is going to come out, is so huge you can’t really get your head around it.
‘Words don’t mean a lot. To a lot of people who’ve lost loved ones, it’s not going to bring back the dead or wash away the crimes that have been committed. What I really want to see is a genuine heartfelt acknowledgement of what has happened over the last 30-40 years and the mistakes and wrongdoings to be acknowledged.
‘Things were done very wrong at all levels of government and the NHS. Decisions were made on behalf of patients, patients were not informed of what happened because of those decisions and lives were effectively ruined. Any kind of apology, to be worth anything, needs to come from someone who truly understands what happened.’
Lauren Palmer’s life was torn apart by the scandal. Aged just nine, she watched her father then her mother die from HIV.
Lauren Palmer, from Bristol, who lost both parents eight days apart in 1993 after they were victims of the infected blood scandal
Lauren Palmer, pictured as a baby with her mother Barbara Palmer
Lauren Palmer, pictured as a baby with her mother Barbara Palmer
Mr Palmer, a haemophiliac, was infected with HIV and Hepatitis C during a transfusion and unknowingly passed it on to his wife, Barbara.
Miss Palmer, of Bristol, said: ‘It literally destroyed my family.’
Tragically, her maternal grandfather committed suicide shortly after her mother passed away aged 39 in 1993.
Miss Palmer said: ‘He doted on my mum. He found it very difficult to cope with her death and ultimately took his own life.
‘I was never able to go near my father, I was always kept a safe distance away from him because if I knocked him with his blood condition he would bleed to death. He had quite a severe case. So I was never very close to my dad.
‘I remember having to deal with my parents’ death but as a child you’re quite resilient to things so I just got on with it and I always did quite well at school but I think it’s because I buried myself in that as an escape from having to deal with everything.’
She added: ‘Everybody’s families have gone through absolute trauma and devastation so it’s not just me, it’s the fact that so many other people have been affected by it that need that closure and justice and someone to be made accountable for it. The government need to be held to account.’
The sister of a popular local radio DJ who died after receiving a contaminated blood product has described how she still misses her brother almost 30 years after his death.
Amanda Patton’s brother Simon Cummings was infected with HIV through his treatment for haemophilia and died in 1996, aged 38.
Amanda Patton with her brother Simon Cummings, who was infected with HIV through his treatment for haemophilia and died in 1996
She said: ‘He became a very well known local personality and was incredibly popular. Simon was an absolute natural on the radio and everybody adored him. He had a fantastic sense of humour. He was wonderful.
‘People say that time heals, but it doesn’t – what happened to him was so awful, he would have been 65… all those years he was denied, it’s all the ‘might have beens’ as well as everything else.’
During his time as a radio presenter Mr Cummings decided to create a charity single – Everybody’s Got A Crisis In Their Life – and got some famous names to contribute, including Cliff Richard, Justin Hayward and Rick Wakeman.
Ms Patton wants to create a garden for people with haemophilia at the Chelsea Flower Show.