Published3 hours agoShareclose panelShare pageCopy linkAbout sharingBy Chloe Hayward and Hugh PymHealth producer and health editor, BBC NewsThe NHS continued to give patients infected blood after virus screening had been introduced in the UK. Screening, including for hepatitis C, began in September 1991 but there was no process to stop old, contaminated blood being used.BBC News has learned untested and potentially contaminated blood could have been stored for up to 10 years. We have identified patients infected after 1 September 1991, who are currently unable to claim compensation.Schemes for victims to claim financial compensation are only open to those treated with infected blood prior to the introduction of routine virus screening. Lawyers have told BBC News the rules about eligibility should be changed. ‘Fighting for every crumb’Caz Challis was diagnosed with cancer in 1992 and received several blood transfusions over the next 12 months. In 1993, she was diagnosed with hepatitis C before undergoing a stem cell transplant.The NHS trust where she was treated has confirmed the virus came from blood she received during her cancer treatment. She is one of many victims who are not eligible for compensation. She says she has been left “fighting for every crumb” and feeling “that you don’t count”. Beatrice Morgan, a solicitor at law firm Leigh Day, represents more than 300 infected blood victims. She is calling for compensation schemes to be extended to those who received infected blood beyond the date routine screening was introduced.”Although there was a national rollout of testing of new donations from 1 September 1991, blood that was already in the system wasn’t tested,” Ms Morgan says. “We have evidence to show that there was untested blood that slipped through the net.” Hundreds infected with hepatitis C without knowing it, BBC findsChildren used as ‘guinea pigs’ in clinical trials The infected blood scandal is one of the biggest treatment disasters in NHS history – 3,000 people who were infected with HIV and hepatitis C after being given contaminated blood and blood products have died. Many victims were haemophiliacs and were given infected blood products as part of their treatment. But thousands more were given transfusions using contaminated blood after accidents, emergencies or childbirth.After years of campaigning by victims, the Infected Blood Inquiry was announced in 2017. Led by former judge Sir Brian Langstaff, it heard evidence between 2019 and 2023.During hearings at the inquiry, several doctors confirmed untested blood remained within the NHS supply after virus screening began. “There was quite a lot of uncertainty about what we were doing,” Dr Frank Boulton, who was working in the west of England at the time, said. “I did feel a little bit nervous about the chance of HCV [hepatitis C] emerging amongst some of our recipients.”Giving evidence, blood expert Professor Marcela Contreras told the inquiry that in some parts of the country there was blood in the system which had not been tested for viruses, including HIV, until as late as October 1995. Some rare blood groups “could be frozen for 10 years”, she added.The secret in my bloodTainted blood: The woman who lost two husbandsConcerns about remaining untested blood product stocks in the system being administered to patients had been raised by doctors before screening was introduced.In February 1991, Dr John Cash, from the Scottish National Blood Transfusion Service, wrote a letter to Dr Harold Gunson, who at the time was director of the National Blood Transfusion Services.He asked when a decision would be made about whether existing blood stocks would be tested, noting: “The task is doable but formidable.”No national policy was ever announced and testing was piecemeal, if it happened at all. During the Infected Blood Inquiry, Sir Brian Langstaff noted some old blood donations were not tested, saying: “If it’s right, it may have repercussions for the accuracy of the start date [of the compensation schemes].”The inquiry into the wider infected blood scandal will conclude on 20 May.BBC Wales Investigates: Blood MoneyHow did 3,000 people lose their lives to deadly diseases in blood? Wyre Davies exposes the role of drugs companies, politicians and doctors.Watch now on BBC iPlayer (UK only)More on this storyBoy, 7, died from Aids after doctor ignored rulesPublished14 AprilHundreds infected with hepatitis C without knowing it, BBC findsPublished13 hours agoChildren used as ‘guinea pigs’ in clinical trialsPublished18 April

Published21 minutes agoShareclose panelShare pageCopy linkAbout sharingBy Chloe Hayward and Hugh PymHealth producer and health editor, BBC NewsAbout 1,750 people in the UK are living with an undiagnosed hepatitis C infection after being given a transfusion with contaminated blood, according to BBC analysis.The UK government and NHS failed to adequately trace those most at risk of being infected, new documents reveal.Officials slowed detection rates and kept public awareness of the virus low.Up to 27,000 people were exposed to hepatitis C after having blood transfusions in the 1970s, 80s and 90s.The true scale of undiagnosed cases is based on BBC analysis of statistics submitted to the Infected Blood Inquiry by an expert panel, as well as Freedom of Information requests to infected blood support schemes.BBC News can also reveal for the first time how the UK government and the NHS actively tried to limit the public’s awareness of the virus to avoid embarrassing “bottlenecks” at liver units. Testing was limited because of “resource implications for the NHS”. “Raising awareness poses undoubted difficulties for the NHS,” an internal government note from the 1990s says. “In terms of value for money, there may be better candidates for additional resources.” The document has been added to the inquiry’s website.Rather than prioritising care for those harmed by NHS-provided blood, officials squeezed budgets as cost concerns took precedence over patient safety. Even though it wasn’t formally identified until 1989, health officials and NHS staff recognised that this form of hepatitis could be fatal as early as 1980. But they chose to delay “look back” programmes until 1995, which further hampered efforts to track down people who may have been infected, reducing their chances of receiving treatment before permanent liver damage was caused.As NHS funding for hepatitis remained limited, and awareness low, victims told BBC News how they felt doctors patronised and ignored them instead of offering tests and support. What is the infected blood scandal and how many people died?The stories behind the infected blood scandalChildren used as ‘guinea pigs’ in clinical trials Mum never got over injecting son with infected bloodKnown as the “silent killer”, hepatitis C may cause few symptoms initially, with early signs including night sweats, brain fog, itchy skin and fatigue. But for every year a person carries the virus, their chance of dying from liver cirrhosis and related cancers increases. The infected blood scandal is one of the biggest treatment disasters in NHS history – 3,000 people who were infected with HIV and hepatitis C after being given contaminated blood products have died.  Many of the victims were haemophiliacs, who were given infected blood products as part of their treatment.But many thousands more were given transfusions using contaminated blood after accidents, emergencies or childbirth.The Hep C Trust says, on average, two people a month call its helpline following a diagnosis as a result of a blood transfusion more than 30 years ago. More often than not, they say their prognosis is dire. ‘She weighed four stone when she died’ Victoria’s mother, Maureen Arkley, was diagnosed with cirrhosis of the liver and hepatitis C in September last year. By the following month, it was clear she had untreatable liver cancer. Maureen had an operation in 1976 involving multiple blood transfusions. They were noted on her medical records, but at no stage was she contacted by her GP or anyone in the NHS about the fact she might have been exposed to hepatitis. Years later, in 2008, she began having pains in her abdomen. Tests were eventually done in 2010, including an ultrasound but the consultant concluded nothing was wrong. She wasn’t tested for Hep C. Maureen passed away in February, five months after she was diagnosed – and 47 years after she had the blood transfusion that infected her. “The end was utterly horrific, she weighed less than four stone when she died,” says Victoria. She says her mother felt there was a stigma attached to the virus. “She was very ashamed and hid from it. “I work in social care but we just didn’t make the link there was a chance someone with a blood transfusion could have been infected with hepatitis C. Where was the public health campaign? Why didn’t the doctor test her? “They knew she had had transfusions, but no one tested her. I’m so angry,” says Victoria.Government documentsIn 1973, a Blood Transfusion Service booklet was released warning of the risks of hepatitis. Over the next 20 years, it became common knowledge that blood transfusions carried the risk of infecting patients with hepatitis. But, despite this, it was not until 1995 that the UK government began a look-back exercise to find people who may have been infected by contaminated blood transfusions decades earlier.Other countries, including the US, started their process years before.Hospital trusts were tasked with looking through medical records, but without funding, efforts were limited. Some people were traced but there was a postcode lottery when it came to treatments and counselling.A year after the exercise began, an official report noted that “increased testing has resource implications for the NHS”. One common treatment – known as Interferon – was “already placing a considerable burden on purchasers”. In another Department of Health document, submitted to the public inquiry, it said there was “an obligation to remind health professionals, and people who may have been infected”.But it added: “We have so far avoided going down this road because of the resource implications for the NHS. Raising awareness poses undoubted difficulties.”Today hepatitis C can be cleared by taking pills for 8-12 weeks.’It’s just menopause’The majority (64%) of people infected with hepatitis C via blood transfusions were women. Stories of transfusions during childbirth and as a result of ectopic pregnancies were repeatedly heard by the BBC. Memories of dismissive doctors were recurrent. Jo Vincent was infected with hepatitis C in 1988, after being given a transfusion following a postpartum haemorrhage. She soon developed symptoms but was offered antidepressants and sent to a psychiatrist. A doctor suggested she had an alcohol problem. As the years went by, Jo was told her night sweats were down to the menopause. Brain fog was because of hormones. “The doctors just fobbed me off – they wouldn’t listen.” Jo was finally diagnosed in 2015. After a six-week course of two tablets a day, she cleared the virus. But the damage was done – Jo has liver cirrhosis and now has six-monthly checks for the early signs of cancer. Jane Fitzgerald died at the age of 53 from hepatitis C-related illnesses. In 1978, she was given a single unit of blood after surgery, following an ectopic pregnancy. Over the following decades she brought up her two children and enjoyed family holidays and socialising with friends. But as the new millennium came in, she felt tired, was having trouble swallowing and had a sore throat. Eventually, in 2004, blood tests were carried out and she was diagnosed with Hep C. In the hunt for the best treatment Jane paid for trips to Paris so she could have scans on equipment the NHS hadn’t invested in. While in the NHS, she attended clinics with drug addicts and alcoholics. As her liver function started to fail, Jane suffered from ascites – a build-up of fluid in her abdomen – that needed draining every 10 days. Once, she attended an appointment, and after being made to wait the entire day, she was sent home. “That night her abdomen ruptured from the pressure,” her son, Ronan, told the BBC. Jane died with liver cancer in November 2015. “I am so angry still. She was given one unit of blood and at no stage did they try to trace her or warn her that she had this deadly disease,” he says. I gave my daughter Hep CAnnette was given a blood transfusion in 1985 after an ectopic pregnancy. It wasn’t until she moved to Australia in the 1990s, and was pregnant with her second child, that Annette found out she had hepatitis C. Days later, she was given the devastating news her young daughter was also infected. The pair took long courses of Interferon – a drug known to have several physical and mental impacts on patients. “I lost my hair, I fell to seven stone in weight and was suicidal. It was an awful drug,” says Annette. Over the next decade, she took another two courses of treatment and eventually cleared her hepatitis C, in 2018. She now has cirrhosis of the liver and varices – enlarged blood vessels in the oesophagus that make swallowing hard. She is still alive – unlike her daughter. After failing to clear the virus, Annette’s daughter fell pregnant. Within hours of giving birth, a bleed was detected. Doctors discovered she had cancer. Annette’s daughter died soon after her 28th birthday. She left behind her 16-month-old baby. For many victims, the UK-wide infected blood inquiry has come too late. Announced in 2017, after years of campaigning by victim, it took evidence between 2019 and 2023 and will publish its final report on 20 May.A government spokesperson said the infected blood scandal was “an appalling tragedy that never should have happened” and that a new body would be set up to deliver compensation once victims and claims had been assessed.If you think you might have had a blood transfusion in the 1970s, 80 or 90s and have any concerns about your health, you can request a free NHS hepatitis C test at https://hepctest.nhs.ukOnce the form has been filled in, it will take a couple of days to arrive. It will come with clear instructions on how to do a finger-prick test and send back a sample. Results can take up to five days. More on this storyBoy, 7, died from Aids after doctor ignored rulesPublished14 April

Published10 hours agoShareclose panelShare pageCopy linkAbout sharingImage source, Allan ArchiveBy Chloe Hayward and Hugh PymHealth producer and health editor, BBC NewsThe true scale of the number of medical trials using infected blood products on children in the 1970s and 80s has been revealed by documents seen by BBC News.They reveal a secret world of unsafe clinical testing involving children in the UK, as doctors placed research goals ahead of patients’ needs.They continued for more than 15 years, involved hundreds of people, and infected most with hepatitis C and HIV.One surviving patient told the BBC he was treated like a “guinea pig”.The trials involved children with blood clotting disorders, when families had often not consented to them taking part. The majority of the children who enrolled are now dead. Documents also show that doctors in haemophilia centres across the country used blood products, even though they were widely known as likely to be contaminated.A shortage of blood products in the UK in the 1970s and 80s meant they were imported from the US. High-risk donors such as prisoners and drug addicts provided the plasma for the treatments that were infected with potentially fatal viruses including hepatitis C – which attacks the liver resulting in cirrhosis and cancer – and HIV. One blood product, known as Factor VIII, was seen to be highly effective for stopping bleeding but also widely known to be contaminated with viruses. A public inquiry is under way into the scandal. The final report is due in May. ‘Guinea pig’Luke O’Shea-Phillips, 42, has mild haemophilia – a blood clotting disorder that means he bruises and bleeds more easily than most. He caught the potentially lethal viral infection hepatitis C while being treated at the Middlesex Hospital, in central London, which was administered because of a small cut to his mouth, aged three, in 1985.Documents seen by the BBC suggest he was deliberately given the blood product – which his doctor knew might have been infected – so he could be enrolled in a clinical trial.The doctor wanted to find out how likely patients were to catch diseases from a new version of heat-treated Factor VIII. Though he had never been treated for his condition before, Luke was given heat-treated Factor VIII to stop his mouth bleeding.A letter from Luke’s doctor, Samuel Machin, to another expert in haemophilia, was submitted in evidence to the public inquiry into the infected blood scandal.Writing to Peter Kernoff, at London’s Royal Free Hospital, Dr Machin detailed the treatment of Luke and another boy, asking: “I hope they will be suitable for your heat-treated trial.”Months earlier, Dr Kernoff had called on fellow doctors in the field to identify patients suitable for clinical trials. Specifically, he said, they had to be “previously untreated patients”, known as “PUPs” in the medical community. They were also nicknamed “virgin haemophiliacs” – a term written on Luke’s medical record by Dr Machin.”I was a guinea pig in clinical trials that could have killed me,” Luke told the BBC. “There is no other way to explain it – my treatment was changed so I could be enrolled in clinical trials. This change in medication gave me a fatal disease – hepatitis C – yet my mother was never even told.””To the scientific world, it was an incredible benefit being a virgin haemophiliac,” he added. “To be a clean petri dish to understand science through, I was without question a part of that.”What is the infected blood scandal?Parents and pupils kept in the dark at blood scandal schoolInfected blood scandal: Boy, 7, died from Aids after doctor ignored rules In the following years, as the medical trial reached its conclusions, Luke had many blood tests. Doctors said they were monitoring him and, at the time, his mother, Shelagh O’Shea, was grateful. In their findings, published in 1987, Dr Kernoff and Dr Machin concluded heat treatment had “little or no effect” in reducing the risk of hepatitis C. Both Dr Kernoff and Dr Machin are now dead.Before he died, Dr Machin gave evidence to the public inquiry, when he confirmed that Luke had been recruited to Dr Kernoff’s study.He denied this had been done without Luke’s mother’s knowledge. “This would have been discussed with his mother, although I acknowledge that standards of consent in the 1980’s was quite different to what it is now,” Dr Machin said.However, Mrs O’Shea told the inquiry she was “absolutely not” told about the trial. “With an innocent child of three and a half I would not have considered such an action. I would never ever have allowed my child to be part of a trial – never,” she added.Documents reveal doctors knew Luke had contracted hepatitis C as early as 1993, but he was not told until 1997. One medical record states a positive test result and says: “Have not discussed with patient or family.”Luke is now clear of the infection after successful treatment.’Laboratory rats’However, evidence of the clinical trials have raised wider concerns. “A patient should always be given the best possible treatment and they should always have given informed consent – if those two factors haven’t been achieved then a trial would be seen as very problematic,” says Professor Emma Cave, Professor of Healthcare Law at Durham University.Professor Edward Tuddenham, who was a haemophilia doctor at the Royal Free Hospital in the 1980s, confirmed these fears. When asked if he thought ethical standards had been met during clinical trials in the 1980s, he simply answered: “No.”The BBC’s investigation has revealed that Dr Machin and Dr Kernoff were among a community of doctors with similar research ambitions.A specialist school near Alton, in Hampshire, was attended by a large cohort of haemophiliac boys. The school for disabled children had an NHS haemophilia unit on site, so boys who had bleeds could be treated quickly and then return to lessons. Their doctor, Dr Anthony Aronstam – who has also since died – used his “unique” cohort of boys for extensive clinical trials. One series of experiments considered whether using three to four times more Factor VIII than normally required by a child would help to reduce the number of bleeds he had. This was preventative treatment, know as prophylaxis, and involved repeated injections with infected Factor VIII products and follow-up blood tests. The high concentrations of infected blood products were administered to the boys without their – or their parents’ – consent. Of the122 pupils attending Treloar’s College between 1974-1987, 75 have so far died of HIV and hepatitis C infections.”Despite knowing the product was riddled with hepatitis, they started a trial that required us to have way more of it than we needed,” says Gary Webster, who was unknowingly enrolled.Ade Goodyear, a pupil at Treloar’s from 1980 to 1989, added: “We were treated like lab rats. There was a plethora of studies that we were all enrolled on for the decade we were at the school.”Image source, Lee StayControversially, another trial involved placebo treatments. This meant that some boys, who thought they had been given Factor VIII to prevent bleeds, had in fact been given a saline solution.”When you think you’ve been given a treatment, this changes your behaviour,” Gary said. “You run more, you play more rough in football. For a haemophiliac, you feel a bit invincible for a short window after a jab. But with a placebo you are just risking your life by changing your behaviour.”He told the BBC he was punished at school if he missed injections. “It would have meant their trials would have been flawed and so we, us kids, were made to toe the line.”Dr Kernoff’s pursuit of clinical advancement through research was rigorous, as was his hunt for suitable subjects for trials – PUPs and virgin haemophiliacs – which led to those involved getting young and younger. A four-month-old baby was involved in a trial. Among his studies was one that compared the infectiousness of another blood plasma product – Cryoprecipitate (Cryo) – to Factor VIII concentrates.Cryo was used for treating mild blood clotting conditions. It contained the Factor VIII protein, but at lower concentrations and from fewer donors and was therefore thought to be less risky.Dr Kernoff’s search for suitable subjects led him to Mark Stewart, his brother, and his father, who all had very mild cases of von Willebrand’s disease – another type of blood clotting disorder. Their usual treatment was cryo.Image source, Mark Stewart As part of his test, Dr Kernoff gave them all Factor VIII concentrates instead.”Until we were given concentrates it would be once a month you’d have a little nose bleed, and you’d go up and have cryo and that was that.” All three contracted hepatitis C.Mark’s brother and father have both died of liver cancer after the infection attacked the organ. Neither were told they had contracted the disease until it was too late for treatment.”Angry is an understatement,” Mark said. “Your dad is in the front carriage, your brother is in the second carriage and you are in the third carriage – so you know what is coming. It won’t veer off that track. This is how hep C works. It will get you.”​A statement from Treloar’s said: “We await the publication of the infected blood inquiry, which we hope will provide our former pupils with the answers they have been waiting for.”The inquiry into the wider infected blood scandal will conclude on 20 May.More on this storyWhat is the infected blood scandal and how many people died?Published2 AprilBoy, 7, died from Aids after doctor ignored rulesPublished5 days agoInfected blood inquiry report delayed until MayPublished17 JanuaryAction lodged against school over infected bloodPublished24 January 2022Parents and pupils kept in dark at infected blood schoolPublished26 June 2021The school where dozens died in NHS blood scandalPublished21 June 2021Related Internet LinksInfected Blood InquiryThe BBC is not responsible for the content of external sites.