In the latest of our #PeerSupportMeans interview series, Jim Clark, Peer Support Officer in Scotland, shares his experiences of hepatitis C and the value of peer support.
What did you do before joining The Hepatitis C Trust and how did you get involved?
I had a drug problem for many years and I found out I’d had hepatitis C for 30 years before the NHS treated it. I went through the old Interferon treatment, I struggled with it, and after that I started to volunteer with Waverley Care in Edinburgh, just to offer a bit of support to people who were going through the same thing that I had gone through and to get back into working.
I was then introduced to the Scottish Officer for The Hepatitis C Trust at the time, who headhunted me and I started working for the Trust as volunteer, supporting patients in Falkirk and Forth Valley. That was when we were still supporting people on the old Interferon treatment, so there was a lot of patient support involved and trying to get people to stick to their treatment, because it was quite a tough regime to stick to.
After that the opportunity came up for me to go on the addiction workers training program, which people from The Hepatitis C Trust encouraged me to do and gave me confidence for. After that I worked in drug treatment for about a year, but then an opportunity came up again to return to The Hepatitis C Trust again at a full-time member of staff rather than as a voluntary session worker. I have been working here ever since.
What drug services did you work with?
I worked with a counselling service in Fife called DAPL, Drug and Alcohol Psychotherapies. I was basically doing assessments, running SMART Recovery [addiction self-help] groups and providing acupuncture to help with recovery. I was doing that for about a year and all the time I was trying to get them to test people for hepatitis C. Very few of the drug services did testing in those days, but it’s good to see that today they do.
What is it like to work for The Hepatitis C Trust?
It’s great, I’ve never had any problems at all. When I first started the job I think there were only about 15 of us, it was like a wee cosy family. The family has grown ten-fold since then – there’s about 150 of us now nationally.
With me being in Scotland I’m a bit out of the way, but it’s good to go to team meetings, meet all the rest of the team and read all the weekly reports, just to see all the brilliant work that’s been going on. It really is quite amazing the stuff that they do.
The main objective in my role is to achieve elimination, which is what we are all after. At the moment the main problem in the area I work seems to be a lot of reinfections, so it’s about dealing with that and getting on top of that. That involves making sure that injecting equipment provision (IEP) is up to scratch and getting people access to needles and syringes. If people don’t get clean tools, then quite often they come back six months later reinfected again.
What areas do you cover?
At the moment I’ve got Forth Valley and I’ve got some clients in Lothian, and there’s potential to work through Glasgow and Lanarkshire as well.
People say it’s great to be talking to somebody that knows what it’s like, and we have a common ground to start on.
Can you describe what your role entails?
At the moment my role entails going around drug services and testing the clients. Because there has been a HIV outbreak in Glasgow, they don’t like me using the instant kits, so I have to do proper Dry Blood Spot Tests (DBSTs) on everyone, but I don’t mind that. There’s not much difference, apart from having to chase the results. I also support people to attend appointments, and make sure they are adhering to their medication – I keep in touch with people when they start treatment, to make sure that they are not having any problems.
Why is having a peer-based model and lived experience so important for The Hepatitis C Trust?
I find that to get some of the people that we work with to engage with us, they definitely prefer to speak to someone that has lived experience, someone that knows what it’s like to be where they are. They definitely prefer that to speaking to someone who has just read about it. People say it’s great to be talking to somebody that knows what it’s like, and we have a common ground to start on.
Having that common ground gives you that wee bit more empathy for what they are going through. I think it’s about not judging people, and treating people the way you would expect to be treated yourself. And if you’re honest with people they tend to be honest back, so I don’t hide any of my background – if they ask me what I used to do, then I tell them because it helps them.
Lived experience also helps because they tell you things and you can relate. You get a better rapport with people when they know where they are coming from and they know where you’ve been.
Plus it’s like setting people an example, it’s like showing them that there is route out of drug addiction, you can get out of it and do alright for yourself. Even when you’re my age! I was about 50 and I thought it was too late for me, but it’s never too late – there’s me now at 61.
What are the most fulfilling and challenging parts of your job?
I’d say the most fulfilling part is when you see people when they’re ill, and then after they’ve been through treatment, you see them a few months later and they’ve got a healthy glow to their skin and they’re putting on weight. When you see people getting better, that’s definitely the best part. The challenging parts would be trying to get hold of people that don’t have phones, or who have to change their phone every day. They don’t have fixed addresses, or they move about or they’re couch surfing, so it’s quite challenging to try and keep track of these people and support them.
Do you find it challenging to get to people who are not engaging regularly with the services?
Yes, I do. What I try to do is encourage the people that I do see to bring along people when I’m down at their house the next time, and then I can offer them a test while I’m there, because they won’t be offered the test anywhere else. The challenging parts is finding people and keeping in touch with them right to the end of their treatment, making sure that they get to the end. Some of them do change their telephone numbers or their address regularly and that is quite problematic to navigate. The rest is mostly concerned with the drug addiction issues which gets dealt with at other agencies, so part of my role is taking them along to their appointments and making sure they are adhering to their prescriptions and stuff like that.
Do you find it challenging getting information about people from other services?
I used to, but we’ve got some good data sharing arrangements and principles in place now. Caldecott principles and GDPR principles and all that kind of stuff can get in the way, that was quite a problem at the start, but we’ve managed to iron out a lot of that and mostly the agencies are working together now.
This interview was conducted by Andrew McFarlane,
one of our peer researchers. Sadly, Andrew has since passed away and is much missed.