Undiagnosed Hepatitis C Cases Found in UK
By Chloe Hayward and Hugh Pym
Health producer and health editor, BBC News
1,750 People Living With Undiagnosed Hepatitis C in the UK
About 1,750 people in the UK are living with an undiagnosed hepatitis C infection after being given a transfusion with contaminated blood, according to the findings of a BBC analysis.
Official documents, seen by BBC News, reveal the failure of the UK government and the NHS in adequately tracing those at the highest risk of carrying the virus.
The documents also expose how detection rates were deliberately slowed down, and public awareness of the virus was intentionally kept low.
Between the 1970s and 1990s, up to 27,000 people in the UK were at risk of exposure to hepatitis C through blood transfusions.
The number of undiagnosed cases is based on an expert panel’s analysis and statistics submitted to the Infected Blood Inquiry, alongside inquiries made to infected blood support schemes through the Freedom of Information Act.
Value for Money Over Commitment to Public Health
The documents published by BBC News have exposed the UK government’s and the NHS’s attempts to limit public awareness of hepatitis C and avoid overwhelming liver units, ultimately prioritizing resource implications for the NHS over patient safety.
A government note from the 1990s states, “Raising awareness poses undoubted difficulties for the NHS. In terms of value for money, there may be better candidates for additional resources. “
Instead of prioritizing care for those affected by NHS-provided blood, officials focused on cost concerns, resulting in detrimental effects on patient safety. Health officials and NHS staff were well-aware of the potentially fatal effects of hepatitis C as early as 1980, despite it not being formally identified until 1989.
However, the look-back programs to trace those infected were intentionally delayed until 1995. Consequently, the delay compromised efforts to identify and treat patients before severe liver damage could occur.
Furthermore, victims of undiagnosed hepatitis C infections spoke out about the patronization and ignorance they faced from doctors. NHS funding for hepatitis treatment remained restricted and awareness of the virus, inadequate.
Hepatitis C, commonly known as the “silent killer,” initially exhibits few symptoms. However, as time passes, the risks of liver cirrhosis and related cancers increase significantly.
The infected blood scandal, which infected over 3,000 individuals with HIV and hepatitis C, is considered one of the largest treatment catastrophes in NHS history. Many of the victims were haemophiliacs.
Stories of Devastating Consequences
Victoria’s mother, Maureen Arkley, was diagnosed with cirrhosis of the liver and hepatitis C in September last year. Sadly, by the following month, it was clear she had untreatable liver cancer. Maureen’s medical records indicated blood transfusions from 1976, but the NHS did not contact her about the potential exposure to hepatitis.
Years later, in 2008, Maureen began experiencing abdominal pain, but she was not adequately diagnosed and was not tested for hepatitis C until it was too late. Maureen passed away in February, five months after being diagnosed and 47 years after her initial infection.
Another victim, Jo Vincent, contracted hepatitis C in 1988 after a blood transfusion. She suffered from symptoms early on, but instead of being provided a proper diagnosis, Jo was offered antidepressants and deemed to have an alcohol problem. It wasn’t until 2015 that Jo was finally diagnosed with hepatitis C. Although she successfully cleared the virus with treatment, she now lives with liver cirrhosis and undergoes regular check-ups for signs of cancer.
Throughout the BBC’s research, the prevalent theme was the dismissal and negligence of doctors, particularly towards women. A significant 64% of individuals infected with hepatitis C through blood transfusions were women.
One heartbreaking story involved Ronan, who lost his mother Jane to hepatitis C-related illnesses. Jane underwent surgery in 1978 and received a blood transfusion but was never tracked down or tested for hepatitis C. Jane underwent investigations on her own expense in Paris as the NHS had not invested in the necessary equipment. She attended clinics alongside drug addicts and alcoholics. Ultimately, Jane died with liver cancer in 2015.
Annette, who received a blood transfusion in 1985, discovered she had hepatitis C after moving to Australia in the 1990s. Following her diagnosis, she received the devastating news that her daughter had also been infected. Both endured extensive treatment, with Annette finally clearing the virus in 2018. However, her daughter was unable to clear the virus and later died after being diagnosed with cancer.
The infected blood inquiry was established in response to years of campaigning by victims and is set to publish its final report on 20 May. It aims to provide justice to victims and their families.
Probe Underway and Compensation for Victims
The UK government has acknowledged the severity of the infected blood scandal, referring to it as an “appalling tragedy that never should have happened.” The government has announced the creation of a new body to assess claims and compensate victims.
Time for a Health Check-Up
If you suspect that you may have received a blood transfusion in the 1970s, 80s, or 90s and have concerns about your health, you are advised to request a free NHS hepatitis C test at https://hepctest.nhs.uk.
After filling in the request form, the test kit will be sent to you within a couple of days, along with instructions on how to perform a finger-prick test and return the sample. Results may take up to five days to be obtained.
References:
