As part of our #PeerSupportMeans blog series, Peer Researcher Gary Hind interviews Stephen Ryder about his work as the Nottingham Operational Delivery Network Medical Lead and working alongside The Hepatitis C Trust.
Briefly describe your role and organisation.
I am the Medical Lead for the Nottingham Operational Delivery Network and a liver doctor by training. I’ve been involved with research and delivery of treatments for hepatitis C for more than 25 years. I was a trainee at St Mary’s Hospital when hepatitis C was discovered in 1989. It’s been a very important part of my career, all the way from my medical training to my consultant practice.
What are the objectives of your work?
Primarily to make sure that everybody who is at risk of having hepatitis C is tested and treated for it if they have it. The drive for elimination is a key part of my job. There are lots of other things that I do in the ‘liver world’ but in terms of hepatitis C, elimination is the primary aim. We also focus on the small number of people with very serious liver disease that can sometimes remain even after hepatitis C is gone, are picked up and have continuity of care.
I regard what has happened in the UK as far as hepatitis C is concerned as being the most dramatic change in my career. There was an absolute revolution which took a secondary care based service that gave people with hep C a very toxic drug that needed a lot of monitoring and then switched that to a community-led service delivering treatment very simply to people’s homes. That’s a huge change in a very short period of time and a big part of that has been the ability to access people in places that were difficult to medically access before, test people in those environments and get that treatment to them. That was a huge radical shift.
We are on target to reach the WHO’s definition of elimination by 2025, but to maintain that is going to require keeping that pressure on testing and awareness. There is a definite need for vigilance.
How do you work with The Hepatitis C Trust?
I’ve worked with The Hepatitis C Trust for a long time. I also Chair HCV Action and am involved in getting the good practice elements of the elimination work out there. Historically with the Trust, my work was at a policy level and involved advocacy for new treatments. More recently it has been primarily with the peers and the peer network, which has been a huge part of that treatment revolution. Without the peer network, reaching people who are at risk in particular environments would be really difficult. That knowledge and information that comes from lived experience, knowing how to engage people in those environments, how to reassure them that testing and treatment is the right thing that has been a huge part of the revolution.
I’ve also seen that very positive approach in relation to testing. The peers that I’ve worked with are fantastic advocates. Not only are they people who have got experience of all the issues that people with hepatitis C face, they are also fantastic advocates for helping to turn people’s lives around and integrate hepatitis C testing and treatment into that framework. I think the peer network has a dual purpose, getting that bit that the government needs for elimination, hitting the WHO targets, getting the tablets to people who need them and preventing disease. But there is also another huge element which is interacting with people in a way that gives them something very positive, really engaging them and helping them on that personal journey and trying to change things in their life. Both sides are really important.
Where would you like to see the peer work go in the future?
I think there is still a big job for the peer workers, certainly over the next few years. The critical thing is keeping up the momentum of testing. Just hitting the elimination target does not mean that hepatitis C has gone away. If we take our foot off the pedal, it will be back. The pressure has to be maintained. We are on target to reach the WHO’s definition of elimination by 2025, but to maintain that is going to require keeping that pressure on testing and awareness. There is a definite need for vigilance.
I can also see the role of the peers changing a little bit, because what we are likely to see is outbreaks, with the identification of new cases in areas that have previously seen elimination. Those outbreaks will come from somewhere and there will be a network of people that have maybe shared injecting equipment that will need to be contacted and supported onto treatment. This will be a treatment as prevention approach. I can see that becoming an even bigger part of the work. And there are the people with severe liver disease who, although they no longer have hepatitis C, will also need peer support. There are still a significant number of people with cirrhosis due to hepatitis C. They need to be engaged in cancer surveillance programmes. It’s about harm reduction because we know that eliminating hepatitis C doesn’t stop everybody developing liver disease.
I see a much more holistic role for the peers, not just addressing hepatitis C, but dealing with other medical problems related to liver health, helping people to attend liver surveillance appointments and making sure they get the right monitoring in the future as well. There’s quite a big role there, the number of people who should be engaged with the monitoring programme is quite significant, so it’s not a small workload. It’s also about working with multiple social disadvantage because there are so many facets to that, manifesting in different ways. Peers have that knowledge of what it is like, how to pick up those things up and give people confidence to get treatment. The critical thing for me is supporting that confidence and it is the peers who can do that.
At the moment there is a bit of uncertainty over how long the programme will be funded and what will happen afterwards, but what has been set up has been ground breaking, and it would be very sad if that was lost. We now have a model of how to do this, to really make a difference to people with lived experience of hepatitis C and beyond, and it would be a real tragedy if we lost that.
This interview was conducted by Gary Hind,
one of our peer researchers.