Desmond is an Expert by Experience (EBE) with Fulfilling Lives Newcastle and Gateshead. In this blog, he shares his story of how he came to find the EBE network and his involvement with the group.


After attending a Narcotics Anonymous meeting, a guy in the fellowship asked me if I’d heard of the EBE network – which I hadn’t. He told me that EBE stood for Experts by Experience: a network of people who met each week to discuss topics around mental health, substance misuse, homelessness and involvement with the criminal justice system. The purpose of the network was to use the lived experience of the people in the network to bring about change. I thought “Wow” – I was immediately interested in the network’s approach.


The guy who told me about the network had heard me share my experiences of addiction and mental ill-health, and invited me to the next EBE meeting – it was at that point I learned how the network attracts new experts. I suppose in the professional world you would call it head hunting. It felt good to be invited and the way he sold the concept to me was informative and interesting.

The first meeting was in a casual, comfortable and safe setting in the Toon. I was initially introduced to Lou. Lou, the female co-production worker with Fulfilling Lives Newcastle and Gateshead, made me feel very welcome and introduced me to the rest of the network. Sean, the male co-production worker, took me under his wing. The two of us came from similar backgrounds, and we connected immediately. I hadn’t associated myself with others before this for some time and I felt nervous about attending the meeting initially but we all shared coffee and talked about this and that to begin with which settled us in.


I remember coming away from the meeting feeling I could get involved with something I had experience of and maybe help improve services in that area too. It made perfect sense – people with lived experience do have a voice to be heard in the way services are designed and run. Whilst theory and academic insight can also help, they do not necessarily know the best way to deal with, and tackle, the core issues that the EBE can address. It’s about valuing the voices of those with lived experience to give true insight into what’s actually happening – what works well and where there may be gaps.


Over the course of the meetings, I met new people and learned lots. I was soon able to attend training days as part of the network (available after attending three or more meetings). Training opportunities I engaged with included learning about: peer support; co-production; drug related deaths; and psychologically informed environments (PIE). Although some of the terminology was new to me, I understood what they meant when I was put in a classroom and taught about these things. I later had an opportunity to visit Crisis Skylight and offer my experience around accessing healthcare and drug and alcohol treatment when homeless. This was a chance for those with relevant lived experience to anonymously give their views and try and improve the experience for others experiencing homelessness. Week in, week out there were new opportunities opening up to me.


Six weeks previously, I was isolated in my flat in the depths of addiction and mental ill-health. Six weeks later, through the EBE, I now sit in meetings discussing the very issues I had experienced myself. EBE gave me a platform to learn and grow – to revisit old skills and learn new skills. I am very grateful for the opportunity to be involved, and to the individual who introduced me to the network. I also got involved with the Cardboard Citizens – a forum theatre group with similar objectives to the EBE. If you would have said to me before I would be in a theatre, making a play about social issues to try and bring around change, I’d have laughed at you.

I went back into the madness during lockdown but EBE never stopped contacting me. Through the grace of God and good peers, I am back into a programme of recovery and back involved with the EBE again, which I am so grateful for. We all met in a park last week, ate pizza and sat around catching up.


The EBE did not stop during COVID, nor did the issues they deal with. We need to bring change to the system, and if you have lived experience of substance misuse, mental ill-health, homelessness and/ or the criminal justice system, the network is a fantastic way to try and make a difference both locally and nationally. I personally love it, and will definitely be staying connected.