Living in the shadow of hep C

Jackie Britton
Jackie Britton

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Jackie Britton remembers reading all the news reports when Body Shop founder Dame Anita Roddick revealed she had hepatitis C.

No-one could fail to feel sympathy for the campaigner as she explained how she’d contracted the virus following a blood transfusion in 1971.

Dame Anita had needed the life-saving transfusion following the birth of her daughter, Sam. But unknown to her, the blood being pumped into her body had been infected.

Often called the silent killer because of its lack of symptoms, the hepatitis C lay undetected until a routine blood test years later.

When the entrepreneur spoke out about her own 35-year battle with the virus in 2004, Jackie admits a warning bell did begin to ring.

She’d also needed a blood transfusion following complications after giving birth – but like many, she put her concerns to the back of her mind.

‘When I read about Anita Roddick I can remember having a conversation with my mum and saying “I should get myself tested”,’ says Jackie.

‘But I didn’t go to get myself tested. I didn’t want to be labelled a hypochondriac.’

As she sits on her sofa fighting back nausea and surrounded by drugs, Jackie looks like she still can’t quite believe what’s happened to her over the past 12 months.

After more than a year of feeling generally unwell, a simple blood test was all it took to reveal a life-changing secret.

For almost 30 years, she’d been blissfully unaware of the fact that the four units of blood she’d needed when daughter Annaliese was just a few days old had contained the hepatitis C virus.

Despite many hospital admissions and operations since, she simply hadn’t known that she might be at risk. And when the virus was finally detected, it sparked worry and concern over how much damage had already been caused, and whether any of her family might also have been infected.

‘It was a massive shock,’ says Jackie, from Portchester.

‘My husband and daughters were devastated. I can cope with what happens to me but I would have felt so awful and guilty if I’d passed it on.’

Like Dame Anita, Jackie had received a transfusion before the government began screening blood products for hepatitis C in 1991.

As many as 250,000 people in the UK are thought to have been infected with hepatitis C but fewer than half know about it because they have no symptoms. The blood-borne virus mainly infects the cells of the liver and can cause cirrhosis and liver cancer.

For 50-year-old Jackie, the diagnosis came after months of feeling sick and tired. Her GP sent her for blood tests in June 2011 and within a month she’d been given the shocking news.

‘I’ve had I don’t know how many blood tests. I’ve had my gall bladder out, which is another problem that can occur with hepatitis C. Each time I went into hospital I said “I’m a bleeder, I haemorrhaged with both my children and had a transfusion with the first” but no-one ever thought to check that out.’

Annaliese was only eight or nine days old when Jackie suffered a massive bleed at home and was treated with a transfusion at Portsmouth’s St Mary’s Hospital. While traumatic at the time, she soon recovered and thought no more about it – until Dame Anita spoke out.

As husband Derek sits by her side, photos of Annaliese and their youngest daughter Laura line the walls. Now doting grandparents to three-year-old Isabelle, it was the thought that any of them might have contracted the virus that upset Jackie the most.

Thankfully, tests revealed the hepatitis C hadn’t been passed on, paving the way for Jackie to concentrate on getting treated.

Despite the fact she was diagnosed in July, the hepatitis C unit at Queen Alexandra Hospital wasn’t up and running at the time. So the Brittons paid privately to see a specialist in London who revealed Jackie already had cirrhosis of the liver.

She was put on a drug treatment programme in November but it didn’t work. Jackie’s had to wait until this month to start a new triple drug programme.

People who’ve been infected with hepatitis C because of a pre-1991 blood transfusion can apply for compensation via the Skipton Fund. Set up by the Department of Health in 2004, beneficiaries have to prove they’ve not contracted the virus because of drug use, infected tattoo needle or other risk factor.

Jackie received a £20,000 pay-out, followed by a second payment earlier this year. Now she must hope and wait to see if the new drug works.

‘There’s nothing in my power to stop the hepatitis C from getting worse,’ she adds.

‘I’ve been told the new drugs are only going to give me a 30 per cent chance. If they don’t work all I can do is try and get on another drug trial, but that could be two or three years in the future. Although I’ve got damage the rest of my liver is coping well.

‘It was just a shame that they hadn’t thought to check up on a person who got this through no fault of their own.

‘It’s something that they’ve given you and they’re not even looking for people. They’ve given this to me and they’re still not looking.’

The former nursery nurse says joining a support group has helped her understand more about what the future might hold.

‘I’m going to start living life. The money is for luxuries and when I’m feeling better. They don’t expect you to live that long but I’m hoping to live as long as I can.

‘I’m one of those people who thinks the glass is half full not half empty. They didn’t have the tests then [in 1983] and the transfusion saved my life. I can’t knock that. It was just one of those things.

‘The bit that angers me is that once they realised there was a mistake, they didn’t come looking for people. There could still be a lot of people in my position who are feeling ill and don’t know why. It’s not alright that there’s something inside them that can kill them and they don’t know about it.

‘I’m going to do something positive. I’m not the only one left alive who has this through a transfusion.

‘It wasn’t self-inflicted. I don’t want to put down people who get it through that route, it’s one of those choices. But I haven’t got the choice. It really angers me so now I want to get the word out.’

Jackie’s calling on anyone who suspects that they might have hepatitis C, in particular those who had an NHS blood transfusion pre-1991, to ask their GP for a test.

‘I know some people would rather bury their head in the sand but if you know you had a transfusion then ask to be tested. It’s not going to get better on its own.’

She adds: ‘I do feel that I have to say “I’ve got it but it’s not my fault”. It’s a defence thing. I was 50 in June but my whole life has been taken away from me.’

MORE AWARENESS NEEDED

While there is no vaccine for hepatitis C, early treatment can clear the virus in around half of patients and ongoing infection can be managed.

Charles Gore, the chief executive of the Hepatitis C Trust, says we’re on course for a 90 per cent cure rate in those who have been diagnosed.

But he echoes Jackie Britton’s plea for anyone who suspects they might have hepatitis C to ask for a simple test. And he says GPs must get better at thinking about hep C because too many people go undiagnosed for too long.

‘We’ve diagnosed significantly less than half of the people who have hepatitis in this country,’ he explains.

‘There’s definitely a group out there who’ve got this through a blood transfusion.

‘The problem comes down to symptoms. Often people don’t have specific symptoms. The symptoms are very difficult to pin down. We really need GPs to be much more aware and they simply aren’t.’

He says the Department for Health did look for those who might have been infected as a result of pre-1991 transfusions in 1995, but adds that problems with record keeping made it difficult.

He believes more awareness of the virus on the part of doctors and patients would see more people diagnosed earlier, giving them a better chance for survival.

As well as tranfusions, other risk factors include;

· Current/past intravenous drug use

· Current/past cocaine sniffing (sharing notes or straws with a person who is known to have hepatitis C or may have been at risk)

· Blood transfusions or invasive medical or dental procedures in a developing country

· Tattoos/piercings/acupuncture in unregistered premises or with unsterile equipment or needles that were not new

· Regularly shared razors or toothbrushes with a person who is known to have hepatitis C or may have been at risk

For more information visit hepctrust.org.uk. To contact The Hepatitis C Trust helpline call 0845 223 4424.