Call for catch-up campaign to spot undiagnosed people infected with ‘bad blood’

Closeup Blood transfusion intravenous to a patient in the hospital hand held shooting

Anyone who had a blood transfusion before 1991 should be checked for hepatitis C, a leading charity has said as it warned that people are still being diagnosed with the “silent killer” infection following the contaminated blood scandal.

The Hepatitis C Trust said around two people are being diagnosed with the infection each month, having received a blood transfusion in the 1970s, 1980s or early 1990s after accidents, operations or during childbirth.

Many will have had “vague” symptoms which means GPs may not have realised that they were infected.

The charity warned that delayed diagnoses can lead to irreparable liver damage.

The public inquiry into the contaminated blood scandal – known as the worst treatment disaster in the history of the NHS – is due to publish its final report on May 20.

Tens of thousands were infected with hepatitis or HIV when they were given infected blood or blood products. As a result at least 3,000 have died and a significant proportion are living with long-term health issues.

It’s so simple. If you had a blood transfusion before the early 90s. Regardless of how you feel, please just go and have a simple blood test

Samantha May, Hepatitis C Trust

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

She said: “The majority of calls that we deal with are people that received transfusions – so that will be people that have had road traffic accidents, pregnancy, operations, perhaps other medical conditions where they’ve needed blood.

“Rather shockingly, we hear from around two people on average per month now in 2024, and have done consistently over the last five, six years or so, who are just getting diagnosed now.

“They had no idea that they were infected, pre-1991, going back to the 70s, from blood transfusions that they received for various causes.

“It’s huge for them to find out that they have got an illness like hepatitis C – it’s a very frightening illness, it’s potentially life threatening, it can cause serious liver damage and for some people that might lead to liver cancer. It can greatly affect your quality of life.

“So for people to be find out decades later, there’s a lot to get your head around a diagnosis like that.”

“The message is: If you had a blood transfusion before 1991 you should be tested regardless of how you feel – it is often referred to as a silent killer because it’s very common for people with hepatitis C to have this illness 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 nowadays with literally one tablet a day over a period of eight to 12 weeks.

“If you don’t know you’ve got it, the longer you have it, the more likely you are to progress for towards liver damage.”

Ms May said that many people who have had the condition for decades will have gone “back and forward” to their doctor with a range of symptoms, but it is only when serious problems arise that they get diagnosed.

“With symptoms like tiredness, digestive problems, general aches and pains, these are often attributed to people having busy lives, menopause, getting older, lifestyle all sorts of things, so it gets overlooked and missed,” she added.

Most people that received blood didn’t receive infected blood, thankfully, but there was blood bad blood in the system. The only way to find out is to have that test

Samantha May, Hepatitis C Trust

“It’s so simple – if you had a blood transfusion before the early 90s, regardless of how you feel, please just go and have a simple blood test. Go to your GP order one online, whatever works best for you and find out.

“Most people that received blood didn’t receive infected blood, thankfully, but there was blood bad blood in the system. The only way to find out is to have that test.

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

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

NHS England’s national medical director Professor Sir Stephen Powis, said: “We urge anyone who might have been at risk of contracting hepatitis C to get checked out for peace of mind – there are a range of ways to get tested, including via local screening programmes or by doing a simple online test to receive a self-testing kit which can be quickly dispatched to people’s homes.

“The straightforward test involves a finger prick so a tiny blood sample can be dropped into a test tube and posted to a lab for analysis, and if there is a positive test result, the patient will be contacted and referred for rapid curative treatment with the latest antiviral medicines available on the NHS.”

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

Early symptoms of a hepatitis C infection – during the first six months – can include: fatigue; loss of appetite; stomach ache; nausea or vomiting; a high temperature; jaundice (yellowing of the skin or eyes).

If someone has the infection for more than six months, symptoms can vary drastically from person to person. The most commonly reported symptoms include: pain in the abdomen; digestive problems; itchy skin; chronic fatigue; mood swings; depression or anxiety and short-term memory loss or brain fog.

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

The NHS testing portal was launched as part of a drive to eliminate hepatitis C in England by 2030.

It is estimated that more than 60,000 people may be currently living with chronic hepatitis C in England without knowing they have the virus – not all of these will have been as a result of infected blood. The virus is passed on through blood-to-blood contact so can also be passed on through sharing razors or toothbrushes, from a pregnant woman to her unborn baby or drug users sharing needles.

Hepatitis C was first named in 1989, beforehand it was known as ‘non-A, non-B hepatitis’.

– The Hepatitis C Trust confidential helpline can be reached on 020 7089 6221 on weekdays from 10.30 to 16.30 or [email protected]

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