Infected blood scandal: women with hepatitis C ‘dismissed’ by doctors | Contaminated blood scandal

Women who were infected with hepatitis C as a result of the tainted blood scandal say their medical problems were dismissed by doctors as related to motherhood, 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” causes damage to their bodies.

They are among an estimated more than 30,000 people who were exposed to hepatitis C through blood transfusions in the 1970s, 1980s and 1990s seeking justice and redress through a public inquiry that will publish its final report on May 20.

Among them is Janice Whitehorn, 45, who was infected with hepatitis C as an infant after her mother received a transfusion of infected blood in 1973.

“During my childhood and teenage years, I used to feel really tired, which I now know is chronic fatigue – you feel like you’re dead, you’re looking out of your body and you can’t move.

“I went to the doctors and said, ‘I have leg pain,’ and they dismissed me as a teenager,” she said.

Over the years, she visited the local clinic for pain, malaise, hair loss and facial swelling. She felt as if she had been told by mostly male doctors, “You’re overweight, get out.”

When her mother learned she had hepatitis C in 1991, she asked Whitehorn to be tested, but the request was rebuffed with instructions to lose weight.

NHS documents as disclosed from the BBC show officials have slowed detection rates and tried to keep public awareness of the virus low.

It wasn’t until Whitehorn was trying to start a family in her 30s that she was finally tested for hepatitis C — and in 2016, she learned she’d been carrying it for more than three decades.

Even then, she found the attitude of clinicians reprehensible because “they assume that everyone with hepatitis C is a drug user or an alcoholic.” At first she was told she wouldn’t get treatment until she had liver cancer, as if it was her fault she wasn’t feeling well.

After pushing 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 visited her GP regularly 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 at an optimal level, a hepatitis C test was never offered.

She was told to control her diet – which was healthy – and to exercise more, although she went to the gym four times a week.

By the early 2000s, she was so tired that she scaled back her work. “The doctor told me, ‘You’re tired, you have kids.'” They lied to me all the time. It was a male GP. I was fed up with him and asked to change doctors. I went to a woman and she said, “You are in the early stages of change [menopause].’” But the test came back negative.

Joy felt that the attitude was, “Oh no, not again, here she comes,” and that all her problems were in her head.

When she gave blood in 2007, she received a letter saying she had been exposed to hepatitis C during a blood transfusion she received at 19. “That was the biggest shock. I cried for three days, I thought it was my death sentence. But it obviously explained everything I had been through.

“They should have been tested for hepatitis C – the health service sent messages to all these doctors, surgeries and told them what it was and to be tested 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 tumor located near her liver.

Her scar after surgery to remove it didn’t heal, leading doctors to give her a full health checkup in 2019. That’s when she got the call: she had hepatitis C.

This explains the decades of struggling with unexplained fatigue, only to be told it was “because I was a single mother and I was in the police force”. Because she was not in the risk category for hepatitis C, she was never tested.

If testing had been more widely available when the tainted blood scandal came to light, she could have been diagnosed in 1990.

“I was sick for 34 years without knowing why,” she said. “It was terrible. It completely and utterly destroyed my life.

“I visited my GP very rarely because I felt: How can I go to him and tell him that I feel tired or stuffy or itchy?”

Cooper was made to feel like “you’re just making a fuss about nothing.” Until one day a nurse put down her pen and gave her time. “I told her afterwards that this is the first time anyone has listened to me since I started. She was amazing.

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