Around 1,750 people in the UK have contracted undiagnosed hepatitis C infections after transfusions of contaminated blood, according to a BBC analysis.
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| Jane Fitzgerald was given one unit of blood after surgery in the 70s and died in 2015 - her son Ronan is angry that she was not traced and warned |
Official documents obtained by BBC News show that the UK government and NHS failed to properly track those most at risk of contracting the virus.
They show how authorities have tried to slow detection rates and even keep public awareness of the virus low.
In the 1970s, 1980s and 1990s, up to 27,000 people became infected with hepatitis C after receiving blood transfusions.
The true scale of undiagnosed cases is based on a BBC analysis of statistics provided by an expert panel to the Infected Blood Survey and a Freedom of Information request to the Infected Blood Support Programme.
Victims say they felt patronized and ignored
BBC News can reveal for the first time how the UK government and NHS were actively trying to limit public awareness of the virus to avoid embarrassing "shortages" in the liver sector. Testing was limited due to the "resource impact on the NHS".
An internal government memo from the 1990s said: "Raising awareness undoubtedly poses challenges for the NHS." "Additional resources may be better candidates in terms of value for money. This document has been added to the research website."
Instead of prioritizing the care of those affected by the NHS's blood, authorities tightened budgets as cost concerns took precedence over patient safety. Although not officially identified until 1989, by 1980 health authorities and NHS workers recognized that this form of hepatitis could be fatal.
However, they decided to postpone the "look back" program until 1995, further complicating efforts to track down potentially infected people and reducing their chances of receiving treatment before permanent liver damage occurs.
NHS funding for hepatitis remains limited and awareness is low, with survivors telling BBC News they feel ignored and favored by doctors rather than testing or offering support. he said.
What is the Infected Blood Scandal? How many people died? The story behind the Infected Blood Scandal
Hepatitis C is known as the "silent killer" and causes few symptoms at first. Early signs include night sweats, foggy head, itchy skin, and fatigue. However, as more people become infected with the virus each year, the risk of death from cirrhosis and related cancers increases.
The infected blood scandal is one of the biggest treatment disasters in the history of the NHS. 3,000 people died from HIV and hepatitis C infections after receiving contaminated blood products.
Many of the victims were hemophiliacs who were given infected blood products as part of their treatment.
However, thousands more people receive contaminated blood transfusions in accidents, emergencies, and after childbirth.
According to the Hep C Trust, on average two people a month call their helpline after being diagnosed after a blood transfusion more than 30 years ago. In most cases, they say the prognosis is bleak.
"She weighed 4 kg when she died."
.jpeg "Maureen Arkley complained of stomach pain, years before her hepatitis C diagnosis") |
| Maureen Arkley complained of stomach pain, years before her hepatitis C diagnosis |
Victoria's mother Maureen Arkley was diagnosed with liver cirrhosis and hepatitis C in September last year.
The following month, it was revealed that she had untreatable liver cancer.
Maureen had to undergo surgery involving several blood transfusions in 1976. They were recorded in her medical records, but she was never told by her GP or anyone in the NHS that she might have been exposed to hepatitis.
A few years later in her 2008, she started feeling pain in her abdomen. Tests, including an ultrasound scan, were finally carried out in 2010, but consultants concluded there was nothing wrong. She has not been tested for hepatitis C.
Maureen passed away in February, five months after her diagnosis and 47 years after she received the blood transfusion that gave her the infection.
"Her final moments were truly tragic. She weighed less than 4 kilograms when she died," Victoria said. Her mother told her she felt there was stigma associated with the virus, she said. “She was so embarrassed that she hid from it.
"I work in social care and there was no connection. Someone could get hepatitis C through a blood transfusion. Where were the public health campaigns? Why did the doctor give her Didn't you test it?"
"They knew she had received her blood transfusion, but no one tested her. “I’m so angry,” Victoria says.
Funding hampers efforts to find victims
In 1973, a blood transfusion service brochure was published warning of the dangers of hepatitis. Over the next two decades, it became widely known that blood transfusions carried a risk of exposing patients to hepatitis.
Still, it wasn't until 1995 that the British government began retrospectively finding people who might have been infected by contaminated blood transfusions decades earlier.
Other countries, including the United States, began this process several years ago.
Hospital trusts were tasked with scrutinizing medical records, but without financial support their efforts were limited. Some people were tracked, but there was a postcode lottery when it came to treatment and advice.
A year after the exercise began, an official report said "increased testing is having an impact on NHS resources". A common treatment known as interferon "already imposes a significant burden on buyers."
Another Ministry of Health document submitted to the public inquiry said: "There is a duty to alert healthcare workers and potentially infected people."
However, he added: "We have so far avoided this route due to the impact on NHS resources." There are definitely challenges in raising awareness. ”
Currently, hepatitis C can be cured by taking a pill for 8 to 12 weeks.
"It's just menopause."
The majority (64%) of people infected with hepatitis C through blood transfusions were women. The BBC continued to hear stories about blood transfusions during childbirth and as a result of ectopic pregnancies. Memories of negative doctors came back again and again.
Joe Vincent contracted hepatitis C in 1988 after receiving a blood transfusion following postpartum hemorrhage. She soon developed symptoms, but was prescribed antidepressants and sent to a psychiatrist. Her doctor suspected she had an alcohol problem.
For years, Jo was told that her night sweats were caused by menopause. Brain fog was hormonal. "The doctors just ignored me and didn't listen."
Joe he was finally diagnosed in 2015. After six weeks of treatment with two tablets daily, the virus was cleared. But the damage was done. Joe has cirrhosis of the liver and now has to be checked every six months for early signs of cancer.
"Her death was completely preventable."
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| Ronan says his mum should still be alive today - he says she should have been brought back in, tested and treated |
Jane Fitzgerald died at age 53 from a hepatitis C-related illness.
In 1978, she received her 1 unit of blood after surgery for an ectopic pregnancy. Over the next few decades, she raised her two children and enjoyed family trips and social gatherings with her friends.
However, as the new millennium began, she felt tired, had difficulty swallowing, and had a sore throat. Eventually she had her blood tests done in 2004 and she was diagnosed with hepatitis C. In search of the best possible treatment, Jane paid for a trip to Paris so she could scan equipment that the NHS had not invested in.
During her time in the NHS, she attended clinics for drug addicts and alcoholics.
As her liver function declined, Jane suffered from ascites, a condition in which fluid builds up in her abdomen and needs to be drained every 10 days.
She attended her appointment once, but she was made to wait all day before she was sent home. "Her abdomen burst from the pressure that night," her son Ronan told the BBC. Jane passed away from liver cancer in November 2015.
"I'm still very angry. She was given a unit of blood but no one tried to track her down or warn her that she had this deadly disease. It was never done,” he says.
"I gave her daughter Hep C."
Annette received a blood transfusion after she had an ectopic pregnancy in 1985.
It was when she immigrated to Australia in the 1990s and was pregnant with her second child that Annette learned she had hepatitis C. A few days later, she received the shocking news that her young daughter had also been infected.
The couple had been taking interferon for a long time. Interferon is known to have various physical and psychological effects on patients.
"My hair fell out, I lost 2.5kg and I started having suicidal thoughts. It was a terrible drug," says Annette. Over the next 10 years, she underwent two more treatments and she finally beat hepatitis C in 2018. She now has cirrhosis of the liver and varicose veins, which are enlarged blood vessels in her esophagus, making it difficult for her to swallow. She is still alive unlike her daughter.
After failing to eliminate her virus, Annette's daughter became pregnant. Bleeding was noted within hours of her birth. Her doctors discovered she had cancer. Annette's daughter died shortly after her 28th birthday. She left behind her 16-month-old baby.
For many victims, nationwide testing of infected blood samples came too late. After years of campaigning by victims, it was announced in 2017 that evidence would be collected between 2019 and 2023, with a final report to be published on May 20th.
A government spokesperson said the infected blood scandal was a "terrible tragedy that should never have happened" and that a new agency would be set up to pay compensation once the victims and claims had been assessed.
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