Dena Peacock spent years battling fatigue, depression and anxiety. She would also break out in urticaria, an uncomfortable rash all over the body. Her doctors told her “What do you expect? You have children and you work full time”.
But in 2017, a blood test dropped a bombshell. Dena, now 55, had hepatitis C - a deadly condition – and she had been living with it, unaware, since the early 1980s, when she was given blood transfusions on the NHS during childbirth.
She is now just one of many victims fighting for a nationwide testing programme to find those who may be living with a ticking time bomb. The campaign comes as the infected blood inquiry is due to hear individual testimonies on Tuesday.
It is estimated at least 28,000 people who received contaminated blood or blood products during the 1970s, 1980s and early 1990s may be living with the health consequences of hepatitis and not know it.
Michelle Tolley, 53, a mum-of-four from Norfolk, only discovered three years ago that she had been infected with hepatitis C from blood transfusions given to her following childbirth in the 1980s and 1990s.
Tolley haemorrhaged after giving birth to her first child Daniel in 1987, and was given blood by the NHS. She had another blood transfusion in 1991 after having her twins Natalie and Dale.
But she only realised she had been infected with hepatitis C in 2016, after a routine blood test for her diabetes showed irregularities.
She is now calling for a national screening programme to test anyone who may have been given infected blood, as she fears there may be many victims who won’t realise they have the virus until it is too late.
Tolley, who runs the Contaminated Whole Blood UK support group, told HuffPost UK: “I only found out I had been infected with hepatitis C by complete accident and my fear is that there will be many more like me.
“I remember in the mid-90s, I saw something on the television about issues caused by blood transfusions, so I went to see my GP and explained I had two blood transfusions, and that I had been feeling really tired, and asked if it was a result of that.
“He told me the reason I was feeling tired was because I had four young children and not to be silly as it wouldn’t be anything to do with the blood.
“But then years later, the hepatitis C was uncovered as a result of a routine blood test for my diabetes.
“I was asked if I had ever used drugs and asked about my alcohol consumption, but then when I told them I had blood transfusions after childbirth, they realised what had happened.”
She added: “My world fell apart and I thought I was going to die.”
Tolley is still suffering from the impact of hepatitis C today as she has been left with liver cirrhosis and says she was “given a death sentence” when she was given the infected blood.
She now wants to see a routine blood test given to everyone who had a blood transfusion before September 1991 or even surgery or dental treatment.
Tolley said: “It is so easy to screen for hepatitis C – it is just a simple prick test and the results are ready in approximately 15 minutes.
“I asked a pharmacy if the test was on offer yet and was told no as they don’t have the funding for it at the moment.
“I would like to see this test available in every GP surgery, hospitals and chemists. It only costs around £12.
“There needs to be nationwide testing for hepatitis C as there will be people walking around out there completely unaware they have it.”
“There needs to be nationwide testing for hepatitis C as there will be people walking out there completely unaware they have it.”
- Michelle Tolley
Tolley will be a participant in the Infected Blood Inquiry which will begin its witness hearings in London on Tuesday and she will give her evidence in May.
The contaminated blood scandal has been labelled “the worst disaster in the history of the NHS” and has so far claimed the lives of more than 2,800 people.
Almost 4,000 people in the UK, mostly haemophiliacs, were infected with HIV or hepatitis C or both viruses through contaminated blood products used to treat them by the NHS.
Other people were also infected with hepatitis C through blood transfusions including mothers given the life-saving blood after childbirth.
The long awaited public inquiry will be looking at the issues and experiences of both haemophiliacs and whole blood victims.
Tolley said: “I feel lucky that I only got hepatitis C as many haemophiliacs who were given the Factor VIII treatment ended up with HIV as well as hep C and so many people have died.”
Dena Peacock, who lives in Warrington, is a mum-of-six.
She married her husband Dave Peacock in 2016, in hospital as he suffered liver failure from zero negative hepatitis, which is where the reason for the hepatitis is unknown.
Peacock said: “At that point, I did not know I had hepatitis at all.
“We got married in the 2016 and in the January of 2017, I was not feeling very well and went to the doctors for another reason. The doctor did some blood tests and found my liver results were raised.
“He then insisted on doing a hepatitis C test, but I said surely I would have been tested when having children, but he said no.”
Peacock, who has five sons and a daughter, was found to have hepatitis C. She was given blood transfusions following the birth of her first two children.
Peacock told HuffPost UK: “I never thought anything of the blood transfusions as you would think if there was a problem, they would get in touch with you.
“Throughout the years, I felt extremely tired and suffered from urticaria which is a rash all over the body and I felt depressed and suffered from anxiety.
“I went to the doctors but was told: ‘What do you expect? You have children and you work full-time.’
“It was only decades later that I realised the hepatitis C was the cause of all these issues.”
Peacock has had to have her gallbladder removed and has issues with her oesophagus caused by the virus.
She has since had treatment for hepatitis C which was successful and she is free of the virus – but says she is living with the lasting effects.
“As soon as I was diagnosed with hepatitis C, everything fell into place and I felt angry for everything my children had to go through”
- Dena Peacock
She said: “I am suffering from the damage caused by the hepatitis C and also the treatment. I now work part-time as I am so exhausted.
“But it is also the emotional damage as well. My husband had liver failure before I was diagnosed so I thought I had given him my disease. But doctors have since said that his liver failure was not linked to my hepatitis C at all.
“I feel a lot of guilt associated with my children’s childhood as I would be in bed for days on end with exhaustion and depression.
“As soon as I was diagnosed with hepatitis C, everything fell into place and I felt angry for everything my children had to go through.”
Peacock feels it is imperative there is nationwide testing for hepatitis C. She said: “There are probably lots of people like me who are walking around with symptoms but don’t realise the reason is blood they were given in the 1970s, 80s or 90s.
“They should be recalling people who might have been affected, and there should also be advertisements on television telling people who were given blood during those years to get tested.”
She added: “Even if people are experiencing no symptoms, they should get tested as hepatitis C can be a silent killer.”
Lawyers acting on behalf of more than 300 people who received contaminated blood are also calling on NHS England to set up a nationwide screening programme.
Hepatitis C can eventually lead to liver failure and liver cancer if left untreated with many people not developing symptoms for decades. Some may not realise they have the virus until their liver is severely damaged.
The actual number of people infected with hepatitis C as a result of contaminated blood or blood products is one of the issues the public inquiry is investigating.
Law firm Leigh Day which is taking a group legal action on behalf of people who received contaminated blood and contracted hepatitis C, is calling on NHS England and Public Health Wales to launch a screening programme and public awareness campaign to help people get tested for the virus.
Gene Matthews, a partner at Leigh Day, said: “It is estimated that many thousands of people remain unaware of the fact that they are suffering as a result of hepatitis C virus which they received as a result of contaminated blood provided in the 1970s, 1980s and early 1990s.
“There are also many families who lost loved ones from the virus after they became infected during this period of time.
“Whilst we are campaigning for justice for hepatitis C virus victims, we urge the Department of Health to help people identify whether they have the virus, especially as new treatments, which have become more widely available during the past few years, are very effective and have a 90 per cent success rate in clearing the virus from the body.”
The witness hearings for the Infected Blood public inquiry will take place from Tuesday. Hearings will initially take place in London and then move to Leeds, Belfast, Edinburgh and Cardiff.