David Gladders is a man on a mission. He talks to SARAH FOSTER about the hepatitis C support group he set up and how he’s breaking down the stigma that surrounds the virus.
If someone had told David Gladders a few years ago that one day he’d be addressing a room full of hospital consultants, you suspect he would have had some choice words to say about that.
And yet last month he found himself sharing the bill with an eminent list of guest speakers who are all experts in their field and have letters after their names.
David was taking part in the annual liver symposium at Portsmouth’s Queen Alexandra Hospital, organised to raise awareness about the increase of liver disease across the UK.
But his lack of a fancy title didn’t put him on the back foot.
In fact, feedback from the session revealed his speech hit home with the audience – and you can’t help but think his unwavering desire to help others had a lot to do with that.
When the 36-year-old set up a hepatitis C support group in Portsmouth around two years ago, it didn’t immediately become the success story he was hoping for.
‘I set it up and then sat on my own in a room at QA for around six months,’ he laughs.
‘It really took off about a year ago when I forged a relationship with the nurses Karen Gamble and Kirsty Fancey at QA, who had been transferred over from Southampton.
‘There were people with hepatitis C in the community but no-one was coming to the group. I went to a couple of meetings with the nurses and talked about my passion for supporting people.’
In time, people began to attend the weekly support group meetings and David, from Gosport, was no longer on his own.
Of course that doesn’t mean it’s all plain sailing from now on. One of the hardest battles he knows the group will always have to face is the stigma that surrounds hepatitis C.
The virus is commonly transmitted from blood-to-blood contact, so those who share equipment while injecting drugs are particularly at risk. Pre-1992, before blood products began to be routinely screened by the NHS, some people were also infected with the virus following a blood transfusion.
When discovered and treated early enough, the virus can be cured and most people can now expect to make a full recovery.
However, those who don’t respond well to treatment, or who put off seeking help, can find that the virus goes on to cause infection and damage to the liver.
David knows a lot about hep C and that’s no coincidence. He was successfully treated for the virus around nine years ago following his own use of drugs.
Back then he remembers how a doctor told him he had the virus ‘like he was reading out the football results’.
Support and guidance wasn’t forthcoming but he eventually got offered a place on a treatment trial and took it.
At first he worried about telling others his story. But one of David’s key hopes for the future is there will come a day when how you got hep C will become irrelevant. In particular, he wants to see the support group he set up bridge the gap between those who contracted the virus through drug use and those who didn’t.
‘You get people who got this through blood transfusions separating themselves from people who got this through intravenous drug use,’ he explains.
‘They say “They kind of did it to themselves” and I think that’s a bit of an ignorant way to look at it.
‘People who use drugs didn’t know they were going to get hep C. When I contracted it I’d been told “Don’t share needles” so we didn’t.
‘Then another leaflet came out saying you can’t share the water you use or tourniquets either.
‘If you’re trying to survive, to keep your head above water, hepatitis C is the last thing on your mind.
‘I think we’ve got to get to a place where we’ve got two people together – one who got hep C through a blood transfusion and one through intravenous drug use.
‘They’ve both got hepatitis C. It’s not about looking at yesterday, it’s about looking forward.
‘It doesn’t matter who gave it to you, you’ve got to look at tomorrow and you’re going to do treatment and it would be better if you didn’t do it by yourself.’
He adds: ‘I’ve seen amazing things happen in therapy groups. It’s a dream of mine to pull it off. I don’t think it’s too much of a wishy-washy dream to see people supporting each other.’
David, who is training to be a counsellor, also believes he can bridge the gap between the nurses, consultants and patients.
He says people respond differently to treatment but the fear of what it might be like – particularly if your life is already unstable – can stop those with the virus seeking help.
As a result, the support group is open to both those who have and haven’t been treated to help tackle the fear factor.
‘The biggest thing I’m up against is the rumour mill, the word on the street, the Chinese whispers,’ he adds.
‘Some people who’ve had hepatitis C treatment go out into the community and when they’re asked “What was the treatment like?” they say “It was the worst thing in the world, it was unbearable”.
‘That goes around and by the time it gets back to me, people are talking about it as if they’re going to be bed-ridden and bleeding from the eyes.’
Now the support group has started to take off, David’s also turned his attention to spreading the hep C message to a wider audience.
In July he teamed up with Portsmouth Hospitals NHS Trust, the city council, Safer Portsmouth Partnership and the British Liver Trust and took to the streets.
He was chuffed to see members of the support group pull on the Liver Trust T-shirts and stand in Commercial Road handing out leaflets to shoppers.
More than 25 people agreed to be screened and David relished the chance to talk to the city’s 20-somethings about the risks they might be taking if they’d ever shared a bank note to snort cocaine.
Not everyone was happy to chat. Some people were happy to take a leaflet from him until they realised what he was raising awareness of – at which point they’d feel the need to give it back and promptly turn on their heels.
You get the sense that a bit of public opposition is unlikely to stand in his way though.
Educating others is what David feels he’s meant to be doing – and not just because he knows what it’s like to be told you have hepatitis C.
‘Whether it’s hep C or substance misuse or whatever, if you have a bit of knowledge about something, a bit of awareness, I feel it would be wrong to sit at home and do nothing.
‘It’s about empowering people. There’s no point me giving them a fish every day. It’s about teaching people how to fish.’
How to get in touch
The Hepatitis C support group meets every Thursday from 11am until 1pm in block C at St Mary’s Hospital, Milton, Portsmouth.
People can drop in or e-mail David Gladders at firstname.lastname@example.org to find out more.
For more information log on to hepctrust.org.uk or call the confidential helpline on 0845 223 4424.