Breaking the stigma of Hepatitis C

Breaking the stigma of Hepatitis C - 03/08/2020

“We’ve got to get people talking about Hep C. Our aims are really simple. It’s about raising awareness, encouraging people to get tested and onto treatment, and hopefully getting them cured. It’s as simple as that really”, says Barry, Peer Support Lead with the Hepatitis C Trust in Sheffield.

It's estimated around 215,000 people in the UK have hepatitis C, a virus that can infect the liver. If left untreated, it can sometimes cause serious and potentially life-threatening damage to the liver over many years, but with modern treatments, it's usually possible to cure the infection, and most people with it will have a normal life expectancy.

Help us Help spoke to some of the team and volunteers from the Hepatitis C Trust to find out about a new initiative taking place in Sheffield to encourage people who may have been at risk of catching the virus to get tested. Pop up testing facilities, staffed by nurses and supported by volunteers and staff from the Trust have been taking place at Devonshire Green in the city centre and also outside the Archer Project.

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The restrictions which were imposed across the country, secondary to the COVID 19 pandemic, had a detrimental impact upon access to healthcare services. Face to face assessments were significantly reduced, and most services that engage with and support marginalised client groups found it difficult to continue to offer safe and equitable access to services. 

The Viral Hepatitis CNS team in Sheffield endeavour to constantly improve access to services for clients and are always striving to provide patient centred care that meets the challenging and complex needs of clients. Over the last few years, as part of the HCV elimination project, the team has developed innovative pathways to help engage and support clients into testing and onto treatment, and during the COVID lock-down they continued to innovate and develop pathways that ensured safe delivery of care.

Community outreach street testing that supported social distancing and offered a point of contact and support for clients helped identify likely hotspots where the team could reach out to clients and provide access to BBV screening and education around transmission of bloodborne viruses and the implication of HCV infection upon health. 

Over 4 testing days, with the support of the influential team of peers, the team were able to screen over 150 clients from varied backgrounds, and predominantly those who are most difficult to reach. They offered soft drinks and chocolates as incentives and also utilised shopping vouchers provided by NHS England to support an elimination strategy. 

Mick, Hepatitis C Trust Peer Coordinator for South Yorkshire, uses his experience of working in drug services in his current role to continue to raise awareness and educate people about new treatment options. His own experiences years ago involved a biopsy and a punishing treatment regime, but this has evolved significantly as scans of the liver are now done via ultrasound, that uses high frequency sound waves to measures liver stiffness (this is a painless, quick and simple assessment), and treatment takes a matter of weeks with few if any side effects experienced. Using the latest medications, more than 90% of people with hepatitis C are cured. 

“It’s a total game changer”, he explains. “Now people can get tested and onto a treatment plan and be free of the virus relatively easily. When we see people finish their treatment and really start to live again and flourish - that’s brilliant!”

Volunteer Richard takes up the story; “I contracted hep C due to my drug use. I suspected I had it but didn’t care at the time, as my next hit was all I cared about. I lived with it for about 15 years until I noticed an effect on my health. I’d heard horrendous things about the treatment years ago which put me off doing anything about it, but then one day at Fitzwilliam Centre I spoke to my support worker about it and got tested and started my treatment.”

“It’s the silent killer because nobody is talking about it. There’s an ignorance about what treatment involves. There’s shame associated with it as so many people who have it, have got it because of sharing needles or drug paraphernalia. How us volunteers help is that we’ve got empathy with people, as that was us a few months or years ago. We’ve been there, so we can level with people and they know we understand what they are going through. Get tested, get treated, get cured. It’s as simple as that really.”

All of the volunteers we spoke to talked about the great work of the Hep C Trust in Sheffield in creating a community into which they were welcomed and where they now feel like family. Barry discussed how he started volunteering after leaving rehab, at a time when he was feeling completely crushed by life. The work gave him his confidence back and made him feel valuable and needed, and as his health improved, he took on more work which led to a full time role with the Trust. Another volunteer commented that he had never felt self worth before, but the satisfaction he gained from helping so many people get tested had made him feel proud and gave him huge amounts of satisfaction.

He explained, “on the first day we got 37 people over the line. That’s with all of us going around the city centre all day, talking to people, encouraging them to come to Devonshire Green to get tested, explaining the process to them, sharing our experiences of treatment. They know us and they trust us, but still none of us expected them to actually turn up. What an achievement! Not just for us personally, but for them. That they’ve taken that first step towards getting themselves sorted. That’s brilliant.”

The passion and determination among the team of staff and volunteers was clear to see. “We’re not going to stop. We’ll be knocking on doors and talking to people until we find a way to get through to them. Sometimes people need a little kick, I know I did”, joked Richard.

There’s still a huge amount of work to do in the city, something the Trust knows all too well. There are future pop up testing tents planned, and a breakfast session at the Archer Project to try and encourage the 100 or so people who visit the project daily to get themselves tested.

The HepC Trust not only encourages people to get tested, but also provides emotional and practical support throughout the treatment process, being diagnosed positive can be a traumatic experience for many, worrying what impact the infection may have on their lifespan and often anxious as to whether they have infected family members and loved ones.

Workers and volunteers often accompany and provide transport patients to their hospital appts until treatment is complete and offer people an opportunity to volunteer as a Peer to support others through the process after completion of their own treatment

The World Health Organisation has set a target for the virus to be eliminated by 2030. The UK have gone a step further and are aiming for 2025. The work of the Hepatitis C Trust and their team of passionate, empathetic and driven volunteers in Sheffield and across the UK have a huge part to play in working towards that goal.