Warning over ‘silent killer’ infection that has ‘vague’ symptoms as people are ‘still being diagnosed’

Anyone who had a blood transfusion before 1991 should be checked for hepatitis C, a leading charity has said, warning that people are still being diagnosed with the “silent killer” infection in the wake of the tainted blood scandal. The Hepatitis C Trust said around two people are diagnosed with the infection each month after receiving a blood transfusion in the 1970s, 1980s or early 1990s, following accidents, surgery or during childbirth.

Many will have “vague” symptoms, meaning GPs may not have realized they were infected. The charity warned that delayed diagnosis can lead to irreparable liver damage.

The public inquiry into the tainted blood scandal – known as the worst treatment disaster in the history of the NHS – is due to publish its final report on 20 May. Tens of thousands have been infected with hepatitis or HIV when given blood or infected blood. products. At least 3,000 have died as a result and a significant proportion live with long-term health problems.

Samantha May, who runs the Hepatitis C Trust helpline, told the PA news agency that the oldest person she has helped is 89 – a person who received a blood transfusion earlier in the year 1970 – while the youngest is over 30 years old and was transfused with infected blood in the early 1990s.

She said: “Most of the calls we deal with are people who have received transfusions – so it will be people who have had car accidents, pregnancies, operations, maybe other medical conditions where they have needed blood. Shockingly enough, we’re hearing from about two people on average a month now in 2024, and they’ve been doing it consistently for the last five, six years or so, who are just being diagnosed now.

“They had no idea that they had been infected, before 1991, since the 70s, from blood transfusions they received for various reasons. It’s huge for them to find out they have a disease like hepatitis C – it’s a very scary disease, it can be life-threatening, it can cause serious liver damage and for some people it can lead to liver cancer, it can really affect quality of life forget it to such a diagnosis.”

“The message is: if you had a blood transfusion before 1991, you should be tested no matter how you feel – it’s often called a silent killer because it’s very common for people with hepatitis C to have the disease for decades with few or very vague and intermittent symptoms,” she added.

“It’s better to know – if you know you’ve got it, there’s fantastic treatment available, you can get rid of it very easily these days with literally one tablet a day for eight to 12 weeks. If you don’t know yourself. If you have it, the longer you have it, the more likely you are to progress to liver damage.”

Mrs May said many people who have had the condition for decades will have gone to their doctor “again and again” with a range of symptoms, but only when serious problems arise are they diagnosed. “With symptoms like fatigue, digestive problems, general aches and pains, these are often attributed to people having busy lives, menopause, ageing, lifestyle all sorts of things, so they are overlooked and missed,” she added.

“It’s that simple – if you had a blood transfusion before the early 90s, no matter how you feel, please do a simple blood test. Go to your GP, order one online, whatever suits you best and find out.

“Most of the people who received blood did not receive infected blood, fortunately, but there was bad blood in the system. The only way to find out is to take that test.

“We’re talking about saving lives for real. People need to be identified as soon as possible – they are decades late in diagnosis, they need to be located, tested and treated now.

“One person dies every four days as a result of receiving that bad blood all those years ago. It’s terrible”.

Statisticians estimated that around 27,000 people were infected with contaminated blood as a result of blood transfusions, but Mrs May said this should only be seen as a “starting point”.

Symptoms of a hepatitis C infection

Early symptoms of a hepatitis C infection—in the first six months—may include fatigue; loss of appetite; Stomach ache; nausea or vomiting; a high temperature and jaundice (yellowing of the skin or eyes).

If someone has had the infection for more than six months, symptoms can vary drastically from person to person. The most commonly reported symptoms include abdominal pain; digestive problems; irritated skin; chronic fatigue; disposition changes; depression or anxiety and short-term memory loss or brain fog.

How to get a hepatitis C test

People can take the hepatitis C test at home, which can be ordered via hepctest.nhs.uk. They are given a kit that includes a finger prick test that draws a small amount of blood, which is sent for testing. GPs can also help patients order tests if they cannot do them at home.

The NHS testing portal has been launched as part of a drive to eliminate hepatitis C in England by 2030. It is estimated that more than 60,000 people may currently be living with chronic hepatitis C in England without knowing they have the virus – not all these will have been as a result of infected blood.

The virus is transmitted through blood-to-blood contact, so it can also be spread by sharing razors or toothbrushes, from a pregnant woman to her unborn child, or drug users who share needles. Hepatitis C was first named in 1989, before it was known as “non-A, non-B hepatitis”.

The Hepatitis C Trust confidential helpline can be contacted on 020 7089 6221 weekdays between 10.30am and 4.30pm or [email protected]