In the latest of our #PeerSupportMeans interview series, our Leicestershire area Peer Coordinator Paul ‘Huggy’ Huggett talks about his experiences of hepatitis C and the value of peer support.
What did you do before joining The Hepatitis C Trust and what led you to join it?
I used to be an international golfer in university, in America, but then I fell into addiction. I was in active addiction for 20 years and I’d found out I had hepatitis C when I was arrested for drug offences and they tested me. When I found out, I thought I was going to die – it was a traumatic time. But I got some help from a lot of good people and when I finished in rehab, I got introduced to The Hepatitis C Trust. I don’t want anybody feeling the way I felt when I found out I had hepatitis C. I’m so passionate about this. It’s frightening because it was really a dark time – there was very little known about it. There was certainly no support. And the process of getting treated back then was quite brutal, the side effects were just unreal, though now we have new treatments.
I relapsed the first time and went back into rehab, but the second time I did everything they told me to do and then I started volunteering for The Hepatitis C Trust. At the time, I had a very low opinion of myself, but volunteering for the Trust allowed me to go around giving talks in drug services, hostels, rehabs. It gave me a purpose. I started to feel a bit better about myself because not only was I sharing my experience, I was also testing people, finding positives and supporting them all the way through treatments in the proper way. This is peer support. The peer support for me is vital, especially to connect with another addict. It’s love, care, compassion and consistency. And I think that’s missing a lot of times in drug services and a lot of other services.
How do you find working for the Trust?
It’s been really rewarding – they trained me, they had confidence in me and gave me the ability to just do what I wanted to do. I love it. I basically worked for the Trust for a couple of years as a volunteer, and then I was fortunate enough for them to employ me. They showed faith in me, and that meant a real lot. And I almost knew the job already when I got it and the people are all so supportive – they know their stuff and they’re all as passionate as I am, and that really is infectious and it rubs off. It’s not really just a job for me. I work for lovely people and for me, they do it for the right reasons. It’s just about the patients – doing it the right way and providing that peer support, meeting them where they are and just supporting them through. I feel very lucky and privileged to be able to do the job I do.They let you do what you do, and I really appreciate that – they let me run with it.
What does your role as a Peer Coordinator involve?
I’m very lucky. I’ve got a cracking team around me – we’ve got the Operational Delivery Network (ODN) that delivers treatment for hepatitis C, with NHS teams and nurses. Then we’ve got Peer Leads and a good team of volunteers, six at the moment in Leicestershire, who are out doing our testing. My main role is managing all that, managing where volunteers are engaging with other services and getting them working together as one. We’ve got quite a good relationship with most services in our area, the hostels and drug services. We’ve got clinics running every day of the week. It’s really busy. Just today, two of our volunteers are covering the biggest homeless drop-in centre in Leicester, while two others are doing drug service testing over in Corby. One of our Peer Leads has done a pharmacy project testing over 200 people and found lots of positive cases, people we can then treat.
I’ve had to build relationships, including with staff in the partner services – I worked hard at that and things have worked out. Part of it is about delivering the training, because hepatitis C isn’t a comfortable conversation for a lot of people. For example, I went to a service to pick up someone from prison release and when a member of staff saw my ID and it said ‘hepatitis C’, she looked worried and said “but I always let him use my cup”. Or in rehab, people were saying “he shouldn’t be sharing knives and forks, he shouldn’t be using the same bathroom”. If you’ve got staff with that level of fear, that passes on stigma, but this is just a normal person doing a job – she’s not had hepatitis C and no one’s told her about it, so why would she know? So I gathered them together in a room and I trained them up – I’ve sort of made it my mission now that anybody who works for our client base gets trained up on hepatitis C. It’s important to get people talking about hep C because it’s like the old saying – ‘it dies in the light’.
Why is having a peer-based model so important for hepatitis C care?
Most of my client base have an active addiction and they have learnt not to trust people. But when they meet me or my team and they all know we’re addicts in recovery and we’ve had hepatitis C, it breaks down the barriers. It’s really powerful. It’s a tough subject to approach just off the bat, so we’re really lucky having the lived experience of addiction, of using dirty needles. I can identify with them because I was street homeless for two years. When I found out I had it, I thought I was going to die, so I got treatment, I got the all-clear. And when I got the all clear, it made the impossible possible. That meant getting stable on a methadone script seemed doable, even sobriety seemed possible, because I’ve cleared a killer disease. So getting stable on the script, I did it. Going into rehab, cleaning up, I did it. And they know just by hearing us talk that we know, and then they start opening up. They start asking about how I did it and what happened to me.
After a few months of supporting them, you build up a great relationship. When I’m picking people up from out in the sticks for a full assessment at Leicester Hospital, the 45 minutes we’ve got in the car with them is the most important time we have with them, one on one. We build the trust, and then they’ll start answering the phone and setting up appointments. And it’s also about education and information. There’s still a lot of people out there who think they’ll need aggressive biopsies and interferon treatments, which is basically like chemo. But it’s not like that anymore with the new direct-acting antiviral medicines we have now. We need to go out there and carry the message.
What are the most challenging parts of your job?
Healthcare pathways – I think they could be a lot simpler, as different hospitals work in different ways, like different ways of testing. We’re still trying to improve pathways, especially for the people who we know are positive for hepatitis C. They’re often homeless and they won’t engage with doctors or nurses, they won’t come into an appointment, but they’ll engage with me calling them. But we’ve been able to change some services – some people used to inject drugs so they now don’t want needles, so we have to find another way to test them. Fortunately, now we can do a Dry Blood Spot Test (DBST) on people who don’t want needles. That’s what we’re here to do – to help people running the services understand the client base, and it’s getting better and better. We’ve made great strides in our area.