Lee

What was your role before you started working with The Hepatitis C Trust?

I was working in frontline drug and alcohol services as a criminal justice worker, but even within that role I was a hepatitis C lead as well. Before that, I worked in a rehab centre for drug and alcohol misuse for four years, and about nine years ago I was a volunteer in the community, when I had finished rehab myself. I managed to set up some voluntary support groups for people who were about to go on interferon treatment for hepatitis C. It was a mutual aid support group for people who were anxious to go on treatment and my role was to support them and share my own experience. That was my first World Hepatitis Day nine years ago.

Is there anything you particularly remember about your first World Hepatitis Day?

I remember supporting a hectic testing event. We had a bit of money from the local Portsmouth City Council to give everyone a £10 incentive to come in and have a mouth swab antibody test. At one point it got a bit unmanageable in the clinic because we had 100 people all wanting to be tested. It was a massive success in my eyes, considering we broke the world record at the time for getting the most people tested in the shortest amount of time!

What motivated you to set up a support group right after you completed rehab?

My motivation came from my lived experience of hepatitis C. I was incredibly lonely and full of shame because I had to deal with this virus. I knew of the stigma attached to it because I’d seen other people suffer when they spoke up about it. I distinctly remember trudging my way up to the hospital every week to have my bloods taken, hoping that no one would ask me what I was on the bus for – I didn’t want to disclose what I was going through. A major part of my recovery was about giving back to the community and supporting others going through the same. Ultimately, it was about making that journey a little more comfortable for someone else.

How did you transition into working in prisons?

I was offered paid work in rehab which was a step up from volunteering and worked as a key worker for four years which was different to the community drug and alcohol services where hepatitis C was more prevalent. I then moved into community services doing casework with CGL and started working alongside the nurses due to my passion for hepatitis C care.

I was responsible for training up the West Sussex peer mentors delivering awareness sessions to my staff colleagues in that role, which is how I was spotted. It felt like this job was written for me because I was by this time working in a criminal justice role with people going into prison, and suddenly I had this wonderful opportunity with The Hepatitis C Trust.

How have you found working at the Trust?

To me it’s a family of like-minded people, many with the same passions as me, the same purpose that I’ve had for many years now. It’s like I’ve come home, really! It’s incredible working with such a shared purpose because it’s a niche thing, and to have so many people on the same journey is fantastic. I can be transparent with people at the Trust. I’m in an environment where I can talk to my colleagues and understand them without any stigma attached to the conversation. It is vital to know that people don’t need to die from a virus that is now so easily curable and can be eliminated

How have you found working with volunteers within the prisons?

We have done a few High Intensity Test and Treat (HITT) mass testing events in the prisons. My Colleague Simon Edwards and I have built an army of peers – mainly people with lived experience. Those that haven’t got a specific lived experience with hepatitis C have got experience of risky behaviours [for hepatitis C transmission] in prison.

As we build up for the HITTs, those are the guys that take on all the frontline work. They go around and talk to others on the wings where healthcare and substance misuse workers don’t have as much impact. They attempt to lower the stigma, provide education, and break down barriers. When we go in for HITTs we need to get 95 percent of people tested for it to be a successful HITT – I have no doubt that we wouldn’t get above 60 or 70 percent without our peers having those important conversations to dispel the myths and lower the stigma.

I can recall a testing event at one prison that had to start testing early due to low staffing issues. They didn’t have the peers or our support because it was too short notice. They only got about 60 percent of the people tested. That is an example of what happens if we didn’t have peer involvement. When we go into the prison and share our lived experience of the criminal justice system, the walls just drop – there is no longer that ‘us and them’ mentality.

Do you think it benefits the peers that you train who go around the prison and promote the message?

Yes, definitely. They achieve a sense of purpose in prison, especially during lockdown, where they have lacked the necessary socialisation. It’s about having a sense of purpose when so many have lost that. The Trust kept in touch with them during lockdown providing them with in-cell training resources and small tasks on their wings while they couldn’t move around the prison to do their normal duties, and more importantly when they leave the prison, they have an opportunity to come and volunteer with us.

I am currently in touch with a volunteer who I’ve worked with for two years, who has recently got out of prison. He’s a lovely guy who has done some really good work for us. I’ve introduced him to my Hepatitis C Trust community colleagues and now he can help us eliminate hepatitis C in the community as he’s incredibly driven to do this, which is incredible for us.

This is one story of many. There’s a number that the Trust has kept in touch with. People can really struggle when they are released from prison without purpose or direction – especially after such a long time, so having this opportunity upon release is often life changing for them and helps break that cycle of crime.

What did you do for World Hepatitis Day?

We did a Four Nations prison testing event. This is where we delivered a testing event in a prison in each UK Nation – England, Scotland, Wales, and Northern Ireland. I was involved with the one in Wales, which was a high intensity testing event but not necessarily a prison elimination event. The Hepatitis C Trust staff were involved in providing hepatitis awareness training to the prison population alongside testing on the wings. It is also the first prison that we have worked with in Wales and also the UK’s largest prison. So, we’ll hopefully be introducing our lived experience and looking to continue the work with other prisons in Wales off the back of this.

You can read more about our work on World Hepatitis Day 2021 here.