In this interview, the fifth of our #PeerSupportMeans series, Julia Sheehan, Women’s Prison Peer Coordinator, talks about her experiences of hepatitis C and the value of peer support.
How did you get involved in working with the Trust as a prison peer coordinator?
Before my role at the Trust, I knew I had hepatitis C, but I wasn’t aware of any kind of treatment – it wasn’t an option that was available to me at the time. While I was in a treatment centre, a really good friend of mine who needed a liver transplant passed away. Suddenly, it became really urgent for me to treat my own hepatitis C.
Receiving my prescription from the nurse was an emotional moment for me, because I knew the treatment was going to be life-changing. That’s the thing about hepatitis C, the symptoms are insidious and they occur over a long period of time. I was mostly affected by brain fog, lethargy and problems with my short-term memory. I initially thought they were part of me. I didn’t associate them with my hepatitis C, not until I had cleared it and came out the other end of my treatment.
Personally, when I decided to go ahead with my treatment, it was the most thoughtful and loving thing I had done for myself in years. The obvious benefit was that my health improved, but looking back I found myself in a better headspace because I was no longer in a state of emotional turmoil.
Shortly after I finished my treatment I started volunteering at the Trust and a job went out for the female prison estate. It was the perfect role for me because I feel passionate about working with women. My role across the female prison estate is to support the local Operational Delivery Network (ODN) that treat the women, support prison healthcare on the ground and to deliver awareness training to both prisoners and healthcare staff.
We want to keep hepatitis C on the agenda, because of the stigma attached to it.
What are the objectives of the Prison Peer2Peer Project?
Prisons are a great opportunity to catch people and it’s well known that a lot of people are in prison for drug-related offences, which is one of our cohorts. Around 90% of hep C cases in the UK can be attributed to injecting drug use. Sometimes, that cohort of people can be quite difficult to engage within a community setting, whereas in prison you have a captive audience. We want to keep hepatitis C on the agenda, because of the stigma attached to it.
I want our patients to be able to freely admit they have a problem and to not feel ashamed; I want them to be aware that if they speak to healthcare staff or our peers, they aren’t going to be bullied or intimidated. The prevalence of hepatitis C in prisons is at approximately 6%, compared to 0.7% in the community in the adult population. There is an even higher prevalence in the female prison estate, approximately 15-20%.
Why is that?
There are a couple of reasons for this. There tends to be a higher number of women in prison for drug-related offences, in comparison to the male estate. A while back we did a HITT (High Intensity Test and Treat), where we tested the whole prison estate. There were 307 women there at the time and we tested 305 of them – 32% of those women were antibody positive, which meant they had come into contact with hepatitis C at some point in their lives.
Some women will be supporting other people’s drug issues in the community, aside from funding their own drug habits. Additionally, with drug paraphernalia, they will expose themselves and others to an infection by sharing injecting equipment. Due to the shorter sentences, it is essential that we have short treatment pathways, so that when these women come in, they are tested and treated instantly. From there we will support them back in the community with our ‘Follow Me’ programme.
With the help of the Trust, I feel as if there are safety nets everywhere.
What challenges do you face in your role as peer coordinator?
The most challenging thing about being a prison peer is the short sentences. Every prison has a different pathway and is commissioned to test differently. Our job is to ensure there is a strong relationship between The Hepatitis C Trust, the prison healthcare team, and the local ODN. We want to be able to diagnose and treat patients quickly, however sometimes we do miss women.
With short sentences, they may not even make it into our clinic. One of the prisons I work in has an average stay of seven days and fifteen new receptions every week. It’s a high turnover, so our job is to make a quick impact.
Another challenge is women are being released from prison homeless. It means they stay under the radar and are more likely to go back to what they know, which will often be an unsafe, unstable environment. Some patients may even disengage with services and the only time we reconnect with them is when they present positive back in prison.
How important is the work of a peer in eliminating hepatitis C in prisons?
The core of our work is the peer programme. Our peers do an incredible job, because they feel passionate about helping others. It’s about the look of relief on a patient’s face when I mention that I have lived experience of both hepatitis C and being in prison. When you establish that connection with someone, it opens up the opportunity to be vulnerable.
For the peers, having something to focus on and supporting others is often a springboard into other opportunities. Some of our peers leave prison and join us as volunteers in the community team and then go on to do paid work. That’s what I appreciate most about the Trust, our ethos is to employ our volunteers where we can.