Today is Swindon hepatitis C support group Hep C Positive’s fifth anniversary. MARION SAUVEBOIS meets the men and women determined to break the stigma surrounding the virus and find a cure

“WHEN I was diagnosed I didn’t have a clue what hepatitis C was,” explains Phil Spalding.

“There were not many people around who could give me much information and that was one of the driving forces behind starting a self-help group – so we could all help each other out. Now we’re celebrating our fifth anniversary.”

Around him a handful of Hep C Positive members are milling about, exchanging small talk over fresh cups of coffee. Two of them are locked in a heated debate about the merits of Arsenal.

The cheeky joshing, animated banter and light-hearted atmosphere at Broadgreen Community Centre are rather surprising, in light of the circumstances which bring together the motley crew of sufferers and former patients.

After all, hepatitis C remains a largely unknown and misunderstood condition, shrouded in stigma.

The very first meeting in October 2011, Phil admits, was an altogether more subdued affair, attended by a slew of skittish sufferers – frightened, isolated and, sadly, riddled with shame.

“Some people were scared,” recalls Phil, who is now hep C free after a year-long course of aggressive treatment to eradicate the blood-borne virus in 2007. A lot of them felt isolated; they felt shame because it is usually associated with a bad lifestyle, taking drugs. Hep C has got that kind of negative image and over the years we’ve tried to dispel that image.

“But we used to start the meetings by having a laugh. We had a bit of gallows humour, I guess,” the 58-year-old adds, pausing briefly to chide one of the football pundits in the corner, warning him teasingly to “keep it down”.

Hep C Positive started with a small ad posted by Phil and a friend on the Adver pages, urging hep C sufferers to come out of the shadows.

Paul Exton had only just been diagnosed when he spotted the notice in the paper. Still reeling from the news, he made his way to Broadgreen Centre.

“I needed support,” says the 67-year-old artist from Old Town, who struggled through 48 weeks of debilitating treatment to beat the virus. “It’s a shock to discover. And it was hard owning up to people that the reason I had it was from drug use 40 years ago. It was the 1970s, I was young, a hippy and we used to try out different drugs, share needles. There was a certain amount of shame involved but I didn’t try to hide it.

“Treatment made me feel very ill and these guys saw me through the 48 weeks and a year of recovery after that,” adds Paul, who put what the little energy he had during and after treatment into creating a sculpture inspired by his harrowing physical and emotional ordeal. “The group has been a lifeline.”

Hepatitis C is a virus that can cause significant damage to the liver and affect its ability to perform its essential functions. It was first discovered in the 1980s, and as with all relatively new diseases many aspects of hep C are not yet fully understood.

One added complication is that sufferers tend not to show noticeable symptoms until the liver has been severely damaged. This means many people have the infection without realising it – some for decades. Symptoms can include muscle aches, fever, fatigue, loss of appetite and abdominal pain. When they do occur, they can be mistaken for other conditions.

With an estimated 215,000 people living with the virus in the UK, it is far more widespread than most people believe.

As it is transmitted through blood-to-blood contact, historically hep C has been associated with intravenous drug use; hence the deep-rooted stigma surrounding the condition.

While some like Paul, and recovered addict Phil, likely contracted it as a result of drug use, this is by no means a general rule, Phil insists.

Sharing razors, toothbrushes, or unsterilised needles – perhaps unwittingly by donating blood for instance – can spread hep C.

“A microscopic drop of contaminated blood is all it takes,” he explains.

“You can get it through tattoos, dental treatment, blood transfusions,” agrees Paul. “But we need to talk about it. There is still too much ignorance and myths around hep C.”

Fellow member, Catherine de Neumann contracted the virus donating blood while travelling across India and Greece in her 20s.

She likely had hep C for more than 20 years, at least 10 of them without any visible symptoms, before it was finally flagged up by a blood test in 2003. She was battling stage 4 cancer at the time. Hepatitis C had already begun attacking her liver and she showed signs of fibrosis, the first stage of liver scarring. The diagnosis shed light on years of baffling symptoms, aches and inexplicable exhaustion.

“I didn’t feel well but I had no idea why,” says the 64-year-old from Marlborough who joined the support group in January. “The virus leaves you unable to function. Sometimes you don’t have the strength to eat, to bathe or wash your hair.”

The old-style treatment, with its measly 40 to 50 per cent success rate, made her so violently ill she took the decision to stop and bide her time until a ‘miracle cure’ with fewer side-effects was discovered.

When the new drug Harvoni, which can clear the virus in as few as 12 weeks and has a 95 per cent cure rate, was finally introduced this year, she was deemed “not ill enough for treatment” – yet. The NHS was prioritising patients with more advanced liver damage. Desperate, she bypassed the system and joined a Buyers Club to legally source a generic form of the drug abroad at a fraction of the price – $1,600 compared to the £38,000 it costs the NHS per patient.

“I blame the system, the cost of drugs,” says Catherine who is now cured. “I was lucky I could afford it, some people can’t. There are so many obstacles that just shouldn’t be there.”

Part of Phil’s mission as leader of the group and hep C campaigner is to ensure the new drug is more readily available to patients.

Having gone through the taxing old-style treatment himself, he knows how debilitating it can be.

“That’s the next hurdle, getting everyone this new treatment,” adds Phil, a professional musician who has performed with the likes of Mick Jagger, Kylie Minogue, Robbie Williams, Seal and Elton John. “I went through the old 48-week treatment and it was like having chemotherapy for the immune system. I had only a 50 per cent chance of success and I was laid-up for nearly a year.”

Since launching the group, Phil has been invited to advise local authorities, healthcare providers and charities across the country on the needs of patients, help to set up similar support groups and replicate the great strides made and awareness raised in Swindon.

He was appointed hepatitis C co-ordinator for Swindon Borough between 2012 and 2014 and is currently a partner at charity Liver4Life, acting as its ears and eyes on the ground.

Hep C Positive now counts a solid base of 25 members but the work has only just begun, Phil says firmly. As the group’s fifth anniversary gets under way he is more determined than ever to expand its reach, and link up with other groups to support sufferers and eradicate hep C once and for all.

“Five years is a milestone for us,” he beams. “And this is the most consistent and successful group of its kind in the UK.

“There’s not another group like this, unfortunately. But I still have a long way to go. I need a few more years to get enough done.”

Hep C Positive meets on Mondays at 6.30pm at Broadgreen Community Centre on Gladstone Street. For more details call Phil on 07812 479332, email or go to hepc