In this interview, the fourth of our #PeerSupportMeans series, Zoe Yates, Peer Coordinator for the Sussex area, talks about her experiences of hepatitis C and the value of peer support.
What did you do before joining The Hepatitis C Trust?
Before joining the Trust, I initially held a variety of volunteering positions prior to gaining paid employment. One of the first organisations I volunteered for was The Prince’s Trust, on their Young Offenders Program supporting young adults coming out of custody. After that I volunteered in a residential detox, which I had gone through myself.
Whilst I was there, I had this idea to set up a recovery buddy scheme after noticing there was a significant lack of female peer support for one of the clients. My job prior to joining The Hepatitis C Trust was with a community interest organisation called Emerging Futures (EF) where I was supporting recovery for clients leaving structured treatment within substance misuse services and then supporting female offenders who were entering the criminal justice system by assessing their needs and diverting them towards other services.
EF has a similar ethos to The Hepatitis C Trust, which felt empowering to me and so I suggested to my manager that we put some support in place for clients impacted by hepatitis C. This was in part due to my own experience and challenges with attending appointments. It was only when I was able to start talking openly about having hepatitis C myself, that I realised I wanted to work with patients who were going through a similar journey to me and that’s what led me to eventually start working for the Trust.
Why were you drawn to the Trust as an organisation?
My first interaction with The Hepatitis C Trust was prior to me setting up the hepatitis C support within Emerging Futures. Whilst working at the residential detox there was a peer from the Trust who was there to deliver a hepatitis C workshop and as a staff member living with hepatitis C I was desperate to sit in on the session. The peer instantly put me at ease and offered me some life-changing advice, which was to start my hepatitis C treatment as soon as possible.
Even when I was going through the hepatitis C treatment (four-and-a-half years ago), I was still unable to have an honest conversation with close family members about what I went through. So, to be in the position where I am now as a Peer Coordinator for the Hepatitis C Trust where I have these candid discussions with clients and other peers is quite surreal. When I was in recovery and I heard other people talking about hepatitis C, it reassured me because in the culture of addiction, there was a considerable amount of stigma attached to this diagnosis.
Once I had taken my last tablet for treatment, I had to face up to the fact my siblings weren’t aware of what I had gone through. I came to the sudden realisation that I still harboured this internal shame about having hepatitis C and that’s when I decided to set up the support within Emerging Futures. I wanted to do something constructive with that shame I held onto for many years.
The support we provide to the clients is immense and cannot be overstated.
What is it like to work at the Trust?
In all honesty, it is absolutely wonderful. I cannot stress enough the pride and fulfilment I receive from working at the Trust. It truly is a unique experience. The working culture and the clients we support is what drew myself and other peers to the Trust. It’s also important to note we work alongside a number of excellent nurses. The Operational Delivery Network (ODN) we work with in Sussex has embraced us from the beginning. I vividly remember my first meeting with the lead nurse where she insisted that I was a part of the team. We’re all seen as a collective rather than individuals working separately. We work hand-in-hand with each other. The Trust does a tremendous amount to make me feel valued as a peer and this is rippled all the way through the ODN as well.
Can you describe what your role as Peer Coordinator entails?
As a Peer Coordinator every day is different, and some days are more dynamic than others. A typical day usually consists of me going into residential settings such as treatment centres and delivering workshops to people who may be at different stages in their recovery. Other days I will be on the frontline supporting clients who may be placed in temporary hostel accommodation or homeless.
The Trust has recently done some hostel HITTs (High Intensity Test and Treat) in Sussex, where we test the whole hostel over a set period of time. The success of our HITTs is largely dependent on our peer support programme, where over time we build up familiarity between the client and peer. Either myself or the peers might know the clients that we’re trying to engage, on a personal level. We often notice with hostel HITTs that reluctant clients are more likely to get tested and start treatment if they have a good relationship with one of our peers.
At the start of the pandemic, I had to work remotely and I reached a point where I felt like I wasn’t doing enough and missed working alongside the peers and clients. During that time I was made aware of a pilot dry blood spot home delivery service that was struggling to receive an adequate amount of tests back, and the rare few they did receive didn’t have an ample amount of blood on them for the tests to be successfully run.
With this in mind, I was inspired to develop a unique service where I would drive to the client’s house, equipped with a testing kit and while they were outside I would talk them through using the kit and they would then go back indoors and complete the test. I would then double check the test and, if needed, ask them to go back in and put some more blood on the sample. This has ended up being very successful and I have recently named it the ‘deliveroo service’.
What are the most fulfilling parts of your job?
The most fulfilling part of my job is usually when clients that have been known to be hepatitis C positive for a long period of time decide to immediately start treatment after a quick chat with the peers. The support we provide to the clients is immense and cannot be overstated. A great example of this was my experience with a male client who initially had no intention of completing his treatment. I managed to meet up with him and he eventually ended up referring his neighbour to us who thought he had cleared the virus already. We found out through a dry blood spot test that his neighbour was still positive for hepatitis C. As a result, they both started their treatment together. Once they had completed treatment, they couldn’t have been more grateful for the support they had received. It was heartwarming to receive their feedback and to know I had made a huge impact on their lives.
Another example I want to share is of a hesitant client myself and a peer saw when we attended a temporary accomodation hotel. He had been given his medication by another ODN before he moved back to Sussex and when we saw him, he still had all of his tablets. We reassured him about the treatment, relayed our experience of doing it and let him know that we would get him an appointment with the nurse.
However, after I had texted him the nurse’s availability, he texted me straight back saying he had started the treatment. A part of me thinks that he should have had a conversation with the nurse first, but on the other hand I felt complete joy knowing he had started the hepatitis C treatment. Those are the moments that truly fulfil me.
Why is having a peer-based model so important for hepatitis C care?
The reason why a peer-based model is so important is because it’s the most effective model of communication we have with clients, they get us and we get them. It means that we’re able to adapt and deliver the information we need to suit different environments. If we’re in a corporate setting and we need to deliver awareness training I will come across as more ‘professional’ than I would be if I was in a drop-in clinic at a hostel.
All we have to offer as peers is our experience of undergoing treatment and how this has impacted us. We’ve walked in their shoes, and we now walk alongside them to get them to where we currently are and I absolutely love what we do.