Infected blood: Hundreds of victims living with undetected hepatitis C

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 BBC analysis. Official documents, seen by BBC News, reveal how the UK government and the NHS failed to adequately trace those who were most at risk of having the virus.

They show how officials slowed detection rates and even sought to keep 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 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. Known 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. 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?

Source: BBC

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