When Lee Devereux and his colleagues at The Hepatitis C Trust first started working in prisons, getting through the doors was one of their biggest challenges.
Their criminal histories meant some prison authorities were reluctant to let them in.
Today, some of those same people hold the physical keys to the prisons.
Through the Hepatitis C Trust's Prison Peer2Peer (P2P) program, Lee and his team train prison officers and healthcare staff, educate prisoners about hepatitis C and support people in prison to become peer advocates themselves.
Drawing on his own lived experience of hepatitis C and incarceration, Lee now manages the program across Southern England and Wales in the United Kingdom. We spoke to him about how peer-led training can challenge stigma on both sides of the prison door, the power of lived experience and why supporting peer workers is essential.
Lee's key takeaways
Education needs to reach everyone. Challenging stigma means engaging everyone involved, not just those directly affected
Build relationships before delivering training. Gaining the trust and support of decision-makers and frontline staff can help overcome resistance and create lasting change
Challenge stigma through actions, not just education. Giving people with lived experience meaningful responsibilities and authority can help change how others perceive them
Create pathways beyond participation. Peer programs should offer opportunities to develop skills, gain experience and progress into paid employment
Lived experience builds trust. Peer-led approaches can break down barriers and help people feel more comfortable accessing services and support
Give peers the skills to succeed. Training in advocacy, safeguarding and sharing personal experiences safely helps people become effective educators and advocates
Get creative. Songs, art, competitions and other activities can encourage conversations about topics people might otherwise avoid
Challenge stigma against peer workers. People with lived experience can face discrimination and barriers to being recognised as professionals
Support the people delivering training. Lived-experience work can be empowering but emotionally demanding. Appropriate support is essential
Look beyond the numbers. Measure changes in attitudes, confidence and willingness to engage, not just participation and service outcomes
Tell us a little about yourself and how you came to work with The Hepatitis C Trust.
I'm Lee Devereux, and I've been working for The Hepatitis C Trust for nearly eight years. I currently manage the Prison Peer2Peer program across Southern England and Wales.
I have lived experience of hepatitis C and incarceration, and that's really where the purpose of this work comes from.
When I came into recovery about 15 years ago, I wanted to give something back. I started running hepatitis C support groups in the community before moving into rehabilitation and drug and alcohol services, where I trained peers to become hepatitis C champions.
A friend encouraged me to apply for a job with The Hepatitis C Trust, and the rest is history.
How does the Prison Peer2Peer program work?
We start by building relationships with prison management, healthcare providers and substance misuse teams, explaining what we're trying to achieve and the value of involving people with lived experience.
We deliver hepatitis C education and awareness training to staff, and work directly with prisoners on the wings. At the end of these sessions with prisoners, we invite anyone interested to train as a peer advocate.
The training covers confidentiality, safeguarding and professional skills, including how to share personal experiences safely.
Sometimes people start by telling what I call their war stories. We help them turn those experiences into something others can relate to, weaving in hepatitis C messages and explaining risks people in prison might recognise, like sharing razors or toothbrushes, steroid use or getting into fights.
It's also about moving beyond what happened in the past to show where they are now and how they're helping others.
We then supervise and support them to deliver education, facilitate groups and advocate for others within the prison.
Why is education for prison officers and staff so important?
There's a lot of stigma among prison officers, including fear of contracting a blood-borne virus. Some think they can contract hepatitis C if someone spits at them, for example.
We need to break down those misconceptions and help them understand that we're there to make the prison safer for everyone. But it's also about challenging how they see people who've been in prison themselves. A lot of officers haven't met someone who's been in prison and returned in a professional role.
When they discover we've been in prison ourselves, you can see the surprise. Sometimes they're quite inspired. They're used to seeing people coming in and out of prison. Seeing someone return with a job, responsibilities and the keys to the prison can really challenge their perceptions.
I've also challenged officers directly when I've heard them speaking about prisoners in derogatory ways. Every little conversation is an opportunity for education.
How do you use creativity to challenge stigma?
World Hepatitis Day is one of our biggest opportunities to raise awareness in prisons.
We've organised song and spoken-word competitions, poster campaigns and physical challenges, including prisoners collectively climbing the equivalent of Mount Everest through step-ups or walking laps around exercise yards.
Through our work with Project ECHO, the competitions have even reached prisons in the United States. We've had some incredible entries, including a hand-crocheted hepatitis C awareness blanket from a prison in New Mexico.
We print and display posters around prisons and try to share people's work on our website so they can show their families what they've achieved.
It gives people a sense of purpose, but it also gets prisoners and staff talking about hepatitis C. People who might otherwise avoid the topic see what's happening and want to get involved. Suddenly, something that's usually stigmatised becomes something people are making art about, singing about and celebrating.
What difference does having lived experience make?
People in prison can be suspicious of other people's motives, but that suspicion can disappear very quickly when they're speaking to someone with lived experience. Sometimes it only takes a few words, some familiar language or recognising someone from the prison wing to break down those barriers.
We've seen this with testing. Our program originally focused on education and outreach, but peers in some prisons now carry out dry blood spot testing for blood-borne viruses and syphilis. This has also helped address gaps in reception screening, where healthcare teams sometimes struggle to keep up with the number of people entering prison.
Before introducing peer-led testing, I did some working groups across four or five prison sites to understand how people felt about being tested by another prisoner. I expected some resistance, but the response was overwhelmingly positive. People were saying things like, "I trust another prisoner doing it more than I do staff."
In one prison, we achieved hepatitis C elimination through a peer-testing program. We're currently writing up the findings.
What impact has the program had on hepatitis C testing and treatment?
One of our biggest successes was at HMP Berwyn in North Wales, which is the UK’s largest prison.
We had two full-time workers there. One built the peer program, which grew to between 10 and 25 active peers, while the other supported reception screening, clinics and staff training.
Within 18 months, we'd achieved hepatitis C elimination without needing a whole-prison testing event. We were getting people onto treatment within two days of identifying them through reception screening.
I remember walking into Berwyn one day and hearing a man walking along the landing singing a hepatitis C song prisoners had written for a World Hepatitis Day competition. He had no idea who I was. I just recognised the song.
There were posters everywhere, people were openly talking about hepatitis C, and prisoners wanted to become peers because they looked up to our worker and wanted what he'd achieved.
We've also completed a whole-prison testing event in Cardiff involving around 700 men over three days. Peers helped make videos, communicate with prisoners and deliver education beforehand. We achieved hepatitis C elimination there too.
Are the prison peers paid?
The peers working inside prisons are volunteers, but project staff, including those with peer roles in their job titles, are paid.
We offer prison volunteers training, recommendations, letters to probation or parole, and support when they're released. I think those opportunities can be worth more than a small increase in prison wages, which would only be two or three British pounds.
I've got 74 criminal convictions myself, and now I manage this program and a team. When people in prison hear that, it's like, "If I can do it, you can do it."
We connect people with our community teams after release if they’re interested. One former prison peer went on to work in our Wessex community team and, I think, became a manager.
Peer-led programs can be empowering, but people with lived experience can also face stigma. How do you manage that?
Vetting is one of our biggest challenges. We've spent years building relationships with governors, directors and security departments to get people with lived experience the clearance they need.
But it's still not unusual for a team member to call me after a horrible experience with prison security, where they've been questioned about their past or treated differently because of their criminal history.
There's also a wider issue of professional recognition. Sometimes organisations want someone to tell their lived-experience story but still look down on them or don't recognise their expertise. A lot of our team have experienced childhood adversity and trauma, so we have to be mindful of the impact these experiences can have. We offer a therapeutic budget through our clinical supervision arrangements and signpost staff to other support.
I've worked in organisations where peer support sounds great on paper, but the actual support isn't always there. I think The Hepatitis C Trust really walks its talk.
How do you measure whether the program is reducing stigma?
We use questionnaires before and after education sessions to see whether people feel more comfortable talking about hepatitis C.
But some of the biggest signs of change are harder to measure. It's walking into a prison like Berwyn and seeing posters everywhere, hearing people talking openly about hepatitis C and wanting to get involved.
That visibility can be a double-edged sword because you have to be particularly careful about confidentiality when supporting individual patients.
But when people feel comfortable discussing hepatitis C and understand the risks, that's a really important sign of progress.
If you had five minutes with a decision-maker, what would you want them to understand about stigma?
I think stigma is one of the biggest barriers to communication. There's often an "us and them" mentality between people in positions of authority and people in prison, and that can work both ways.
When you reduce stigma, you open up communication between those groups.
If we want to eliminate blood-borne viruses, improve harm reduction and help people access healthcare, we need to cut through that stigma so the messages can get through.
If we spoke again in five or ten years, what would you hope had changed?
I'd like to see more people with lived experience working in these roles and being recognised as professionals.
There are areas where people with lived experience can have a greater impact than other professionals because of the understanding and trust they bring. We need to be on a level playing field.
I'd particularly like to see more people with lived experience working behind prison doors, but also across healthcare and other services.
And that needs to come with the right support. Organisations need to understand where people are coming from and provide the specialist care, empathy and support they need.