“I lived with Hep C for 28 years but didn’t know:” Looking back on the tainted blood scandal

Michelle is fighting to help raise awareness of Hepatitis
Michelle is fighting to help raise awareness of Hepatitis

MICHELLE TOLLEY is one of thousands of innocent victims of “the worst disaster in the history of the NHS”.

The mum-of-four was infected with Hepatitis C during the “Tainted Blood Scandal”, which saw thousands of people given infected blood and blood products. It’s thought more than 1,200 died.

Michelle’s now involved in the ongoing Infected Blood Inquiry, and it’s fair to say that being told she had Hep C in 2015 was a bombshell, as it meant she’d had the blood-borne virus for 28 years without knowing it.

“I had my first son in 1987 and needed to have four pints of blood transfused or I’d probably have died,” says Michelle, 53, originally from the East End of London and now living in Norfolk.

“I also needed two pints in 1991 when my twins were born, so I had two transfusions before they started screening blood.

“In the mid-90s, there was a TV programme about contaminated blood transfusions. I rang up the helpline then went to my GP and told him I was exhausted and that I’d had two transfusions.

“But he just told me: ‘Of course you’re exhausted, you’ve got four children and work full time, what do you expect? Of course you don’t have Hep C,’ and wouldn’t give me a blood test.

“Then in 2004, I was diagnosed with Type 2 diabetes. I had elevated liver numbers and my bloods were here and there, but they didn’t look back to see if there might be anything else there, despite the Department of Health putting a scheme in place for exactly that after the contaminated blood scandal broke.

“By this time, I was getting more and more poorly, always feeling ridiculously tired, and I call that my second missed opportunity to be diagnosed.

“By 2015, we’d moved to Norfolk but I had this very bad bout of gastroenteritis. I’d lost a lot of weight too, five stone in about three years. I’m a big girl anyway but this was noticeable.

“I’d been off sick for three weeks and had this horrific, itchy skin and couldn’t sleep but because I was then 50, I assumed it was the menopause. Eventually, though, I told my husband Dean I thought there was something seriously wrong.

“I had my annual blood test for my diabetes and was called back by the GP, where I was told my liver function was way off the scale, and my bloods were terrible.

“We tried to think of why this would be, as it couldn’t have been for intravenous drugs or alcohol or any of the usual causes.

“Then a lightbulb went on in my head. I said: ‘I had blood transfusions back before they screened the blood,’ and he just put his head in his hands and said: ‘Oh, no, we’re going to have to test you for Hepatitis C.’

“A few days later, I was told I was positive.

“That absolutely destroyed me. I cried like a baby and started planning my funeral and working out what would happen with my kids.

“By this time, I was going yellow. I couldn’t work and I felt like I’d let everyone down — typical mum thinking!

“Then I became angry. They’d given me that bad blood. It wasn’t my fault.

“I was sent to the hospital. As I’d lost weight and had severe pains in my tummy — which I’ve still got — they thought it was pancreatic cancer or lymphoma.

“I had irritable bowel syndrome and I’ve still got problems now. I just had my gallbladder out last month.

“They scanned my liver to measure the stiffness. A good number is something like six. Mine was 31.7. I’ve got cirrhosis of the liver.

“So thank you very much doctor back in the day. Had I been identified back then, I’d have changed my lifestyle and maybe avoided that.

“I lost a job I loved but the worst thing was watching my husband and my kids have to get tested just in case. They were asking: ‘Nanny, are you going to die?’ and I just said: ‘No, mate, you ain’t getting rid of me that quick!’

“You can be ‘cured’ of Hep C. The treatment gets rid of the virus, but I feel worse now than when I was diagnosed.

“My virus was really stubborn so I had six months of really harsh treatment and I don’t think I’m the same person.

“I’ve had acid reflux, diverticulitis, oesophageal disease, calcified gallstones, brain fog, still have chronic fatigue and because of the cirrhosis, I’ve constantly got it in my head that I could die of liver cancer.

“But my progression is from the woman who was a crumpled mess who’d lost all her confidence and was suffering anxiety attacks, to someone running the Contaminated Whole Blood UK Facebook page and involved in the inquiry.

“It’s important that we find those missing people. There are so many walking around out there who don’t know, and it must never happen again.”

July 28 is World Hepatitis Day. For more information, visit the Hepatitis C Trust at www.hepctrust.org.uk or call their helpline on 020 7089 6221.