Contaminated Blood Scandal: Norfolk mother-of-four finds out she’s had Hepatitis C for 28 years
- Credit: SIMON FINLAY
For nearly three decades she suffered a debilitating condition, not knowing what it was.
But then Michelle Tolley discovered she had become the latest victim of a long-running contaminated blood scandal, after being infected without even knowing it.
The mother-of-four today spoke out, saying she has suffered with ill health for years, with doctors unable to work out the cause for it.
So she was shocked earlier this year to discover she had been unknowingly living with Hepatitis C (Hep C), contracted from a blood transfusion 28 years ago.
The contaminated blood scandal saw thousands of patients given infected blood or blood products by the NHS in the 1970s and 80s. In many cases this has led to widespread infections, cirrhosis and cancer.
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Hep C is known as the silent disease because it can lay dormant for years without someone knowing they have it.
Mrs Tolley says her initial feelings of grief have since turned to anger and she has joined the voices of hundreds of other victims campaigning for justice, in what has been called the biggest scandal in NHS history.
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Decades on many feel they have been denied answers, proper treatment and acceptable compensation. The EDP has been fighting on behalf of the victims in this region.
'What has happened is disgusting and scandalous; they are just allowing people to die,' she said. 'Why, in 1987 was I given four pints of blood if they knew there was a problem with it? That is what I can't get my head around. Were we just guinea pigs?'
It was during the birth of her first child Mrs Tolley, 51, was infected by a transfusion of four pints of blood, and there followed 28 years of misdiagnoses.
She had her suspicions and went to see her GP in the mid 1990s after seeing a television campaign around the risks of blood tranfusions in the 1970s and 1980s.
'I went to see my GP, and he made me feel completely stupid,' she said. 'It is like when you know there is something wrong with your baby, and you get called an overanxious parent.
'I was feeling tired all the time, but then I was a mum of four children. I was busy all the time and put it down to being overworked.'
It took 10 years before any progress was made, and Mrs Tolley was eventually diagnosed with Type 2 diabetes, which turned out to be a red herring.
'At that stage I put everything down to the diabetes, because that can cause all of the same symptoms,' she said. 'Not knowing I had Hep C there were all these problems I put down to other things, like depression, anxiety, chronic fatigue and itchy skin. That, I put down to the menopause at the time.
'I was very low and down in myself at that time, and I remember getting up one day and thinking, this isn't you, pull yourself up.'
But by last October Mrs Tolley, of Sparham, near Lenwade, was shedding weight and lost three stone in a year. 'I was never one to go to the doctor because I always felt like someone else would need that appointment more urgently,' she said. 'At that point, I knew something was very wrong.
'I had the blood test then and there, and he phoned me the next day to tell me I was positive. I just sat there and burst into tears.
'They call it the silent killer because it doesn't rear its ugly head until the damage has been done. I didn't want to talk to anyone. I wanted to sleep all the time, because when I was asleep it wasn't there.
'I felt dirty, and I felt like I was being attacked from the inside. Then I got really angry. I processed all these emotions in about three days.'
Since that day Mrs Tolley has been learning all she can about the scandal and how she became a victim of it, which she sums up as 'chronic negligence'. She now has cirrhosis of the liver, gastritis, oesophageal disease and calcified gall stones, with tests still ongoing to uncover the extent of the damage.
'For me the process has been so long, nobody has really spoken to me about Hep C,' she said. 'Everything I have found out is from my own homework.
'I know there will be people like me out there who won't know and won't realise they are at risk. They might think they only injected once, or it was only a tattoo, but that is all it takes. In those days health and hygiene were not what it is today.'
Her diagnosis raises questions over how many victims could still be left without help as hundreds battle for compensation.
'For me, my fight is about educating,' she said. 'People need to get the test if they are at risk, because people could be dying and not even know about it. Back in the 1990s if I had found out, I could have stopped social drinking, and who knows how much difference that could have made. Once you know, you start living your life around it.
'Everybody should be entitled to be treated as soon as possible, and everybody should be entitled to compensation, because this is chronic negligence.
'30 years is far too long, and too many people have died but nobody seems to care.'