Women who were infected with hepatitis C as a result of the infected blood scandal say their medical problems were dismissed by doctors as being related to motherhood, the menopause or teenage mood swings.
Three women who spoke to the Guardian said they struggled to get doctors to take them seriously or test them for hepatitis C, and had to suffer unexplained health problems for decades while the virus, known as the “silent killer”, was causing damage to their bodies.
They are among the estimated more than 30,000 people who were exposed to hepatitis C due to blood transfusions given in the 1970s, 80s and 90s seeking justice and compensation through a public inquiry that will publish its final report on 20 May.
Among these is Janice Whitehorn, 45, who was infected with hepatitis C as a baby after her mother received a transfusion with contaminated blood in 1973.
“During my childhood and as I hit my teenage years, I felt really tired, which I now know is chronic fatigue – you feel like you’re dead, looking out of your body and you can’t move.
“I went to doctors and said: ‘I’ve got leg pains,’ and they dismissed me as a teenager,” she said.
Over the years, she would attend her local clinic about pains, malaise, hair loss and facial swelling. She felt as if she was told by mostly male doctors: “You’re overweight, go away.”
When her mother learned she had hepatitis C in 1991, she asked for Whitehorn to be tested, yet the request was batted away with instructions to lose weight.
NHS documents since uncovered by the BBC show that officials slowed detection rates and sought to keep public awareness of the virus low.
It was only when Whitehorn was trying to start a family in her 30s that she was finally tested for hepatitis C – and in 2016 learned she had been carrying it for more than three decades.
Even then, she found the attitudes of clinicians judgmental because “they assume that everyone with hep C is a drug user or alcoholic”. She was initially told she would not receive treatment until she had liver cancer, as though it was her fault she was unwell.
After pressuring for treatment, she asked if it could affect her fertility, and was told it would not. But the Pegasys interferon treatment sent her into early menopause – something she has since learned through Cancer Research is a known side-effect.
Joy, 64, from Somerset, also paid regular visits to her GP from her mid-20s onwards to find out why she had become so tired and sensitive to types of food and drink.
Although her liver was identified as not functioning to the optimum level, a hepatitis C test was never suggested.
She was told to control her diet – which was healthy – and exercise more, though she went to the gym four times a week.
By the early 2000s, she had become so tired she cut back on work. “My doctor said: ‘You’re tired, you’ve got children.’ I was getting fobbed off all the time. That was a male GP. I got fed up with him and asked to change doctors. I went to a woman and she said: ‘You’re in the early stages of the change [menopause].’” But a test came back negative.
Joy felt that the attitude was: “Oh no, not again, here she comes,” and that her problems were all in her head.
When she gave blood in 2007, she received a letter saying she had been exposed to hepatitis C during a transfusion she received aged 19. “That was the biggest shock. I cried for three days, thought that was my death sentence. But obviously it explained everything I’d been going through.
“They should have been testing for hep C – the health service messaged all these doctors, surgeries and told them what this was about and to test for it,” she said.
Jenny Cooper, 65, from Kent received a blood transfusion in 1987 during an operation to remove a kidney. Years later, she developed a gist tumour located near her liver.
Her scar after the operation to remove it didn’t heal, which resulted in doctors giving her a full health screen in 2019. That’s when she received the call: she had hepatitis C.
This explained the decades struggling with unexplained tiredness, only to be told it was “because I was a single mum and in the police”. As she wasn’t in the risk category for hepatitis C, she was never tested.
Had tests been rolled out more widely when the contaminated blood scandal came to light, she could have been diagnosed in 1990.
“I’ve had 34 years of being ill and not knowing why,” she said. “It’s been horrendous. It’s totally and utterly destroyed my life.
“I made very infrequent visits to my GP because I felt: how can I go to him and say I feel tired, or I feel muggy headed or I’m itching?”
Cooper was made to feel like “you’re just making a fuss over nothing”. Until one day a female nurse put her pen down and gave her time. “I said to her afterwards, this is the first time anyone has listened to me since this started. She was amazing.”
