In the latest of our #PeerSupportMeans interview series, our director of community services Stuart Smith talks about his experiences and the work of The Hepatitis C Trust.
What did you do before joining The Hepatitis C Trust?
Before joining the Trust, I did a bit of volunteering work in Cornwall, working with vulnerable adults who were often affected by substance misuse issues. I was in early recovery myself and starting to get my foot into the workplace – gaining bits of part time work where I could.
Why were you drawn to the Trust as an organisation?
I like the ethos of the trust, and the mission to help inform patients about the risk of hepatitis C and the importance of testing for it. I was a patient myself, after being diagnosed in the late 90s and I underwent interferon treatment. I was aware of how little information and support was available for people like myself. So it was very attractive to come and work for The Hepatitis C Trust, to feel a purpose and help to inform patients about the risks of hepatitis C.
What is it like to work at the Trust?
It’s very rewarding work, and it’s hard work at times. We have a big job at the moment to ensure that no one is left behind, through case finding before elimination is called. The job gives me a lot of flexibility and there’s opportunity for innovation and creativity. Colleagues-wise, it’s like a big family. Everyone’s very supportive of each other, so it’s a nice environment in that manner. It’s a great organisation to work for.
What are the objectives of the Trust’s community services?
Currently it’s to ensure no one is left behind whilst we have resources in place to test deep within the communities of those at risk. There is a feeling that the resources might not be available in a few years’ time as they are now, so we’re making the most of it. Also ensuring that while we have really great peer coverage, we’re able to utilise the peers, and make sure we’re able to get them into all corners of their geographical ODN [NHS Operational Delivery Network] area and ensure that we don’t leave anyone behind. Lastly, ensuring that those who are at risk and remain at risk are getting tested and getting informed about the treatment.
What are the challenges for people most at risk?
Addiction itself is a huge barrier. It generally takes up all of a person’s time: working out how they can make up enough money to get enough drugs to stay well if they’ve got habits, and staying out of trouble with the law. Another challenge, often due to their addiction, is their housing, their relationships and relationships with their family.
Another challenge is the patients feeling possibly diminished and stigmatised, going into hospitals where nurses and clinical staff may notice that the person may be drunk or have substance misuse issues, where they can be stigmatised, or often feel stigmatised even if they are not. So there’s a lack of trust, a lack of self-worth and self-love, which can lead to people not prioritising their health.
As well as this, they could be in and out of the criminal justice system, or they could certainly not have fixed addresses. When they do have fixed addresses, that could be in temporary accommodation, so their lifestyles may not be robust enough often to follow traditional healthcare pathways.
People have more trust within their own community than outside of it, and that’s what the peers offer them.
How do you find the community services work with other partner organisations for a holistic approach to dealing with drug treatment?
We are really fortunate that hepatitis C is currently on people’s agenda. For example, housing associations understand hepatitis C much better than they ever have. Drug services are a world away from when I joined the Trust with their knowledge and understanding of hepatitis C, and their commitment to being on board with elimination. And secondly, the peers themselves have been very successful, and that has really started to show itself by the number of people who contact us and ask if they can work with our peers.
When I started at the Trust and was developing the programme, we were cold calling on people’s doors and finding it quite hard to work in partnerships with organisations, whereas now, we find that they actually come to us and ask if we have got any peers in the area that can support their patients and clients. So there is a complete turnaround, and I find that it’s the amount of respect that the peers have gained themselves by doing such a good job. It’s now well known through different sectors.
Why is having a peer-based model so important for hepatitis C care?
The pathway navigation and the encouragement that people can successfully clear their disease. We’ve turned more than a few people’s minds by talking to them about our own experience, and that we have been able to do the treatment. This has engaged and encouraged people to follow our peers and think, ‘maybe I can do it too’ and come to the clinic to talk about their treatment.
A peer can share a little bit about their experience of where the patient may be currently with regards to their drug use, their hepatitis C, and even their housing. There’s a lot of identification, and generally, it’s a lot like any community in the world really. They have more trust within their own community than outside of it, and that’s what the peers offer them.
What are the most fulfilling and challenging parts of your job?
I’d say it’s seeing patients’ lives transformed. We meet people that we’ve just found, we support them towards treatment, and then we see them coming into the office a couple of times a week as a volunteer, and then they’re starting to get their lives together which is very rewarding.
I think that once they take the baby step of addressing their health with something like hepatitis C treatment, it has an immediate knock-on effect. People will ask what else they can do with their life. And even from volunteering, we’ve led a lot of the volunteers to full-time employment, so that’s very fulfilling.
I think the success of the programme is very fulfilling, which is down to the team itself. We are very grateful to the incredible staff that we’ve got, who have done an incredible job. We are renowned for providing a really good service.
I think the biggest challenge ahead of us is ensuring that we don’t call elimination too early though, and ensure we have dug deep into the community and that we find those who need testing. Managing re-infections will also be a challenge, but it’s not insurmountable. And as an organisation, the window of opportunity that we have isn’t going to remain open forever, so challenges going forward will be to ensure sustained testing and monitoring is in place, measuring that we’ve actually done the job.
How would you explain the need for support for the ongoing elimination deal?
I think the data will show us once it’s robust enough. I think there needs to be gatekeeping in all services so that people are being tested when they come in. Getting the numbers low and then keeping them low are two different jobs.
They can be done hand-in-hand if you start putting robust processes in place, such as testing upon entrance to prisons, testing assessments to join drug services, and also having pathways in place with all the services when positives are found so that they can be immediately treated.