Changing minds with conversations

By Ginny Russell, CPFT Expert by Experience

Ginny shares insights from CPFT's Expert by Experience research programmes

When I first considered sharing my lived experience, I had been ill for more of my life than I had been well, and I had recently lived through several crises.

I felt that my diagnosis was seen first across the board, and that I could not be heard - or had no right to be heard because I was “the problem”.

In stark contrast, through CPFT’s Conversations with Experts by Experience programme I have been able to express myself as an individual again and participate in engaged, non-judgmental discussion which builds empathy and understanding.

The Conversations with Experts By Experience programme was set up to enable non-clinical researchers from all backgrounds to have open, informal discussions with people who have experienced mental health conditions. Around four sessions are held over four months, each focussing on different diagnoses.

I have participated over the past 18 months, sharing my experience of post-traumatic stress disorder, borderline personality disorder, eating disorders, anxiety and obsessive compulsive disorder. It felt exciting but daunting at first - each session is two hours long including a short break, and there are usually at least three of us sharing lived experience, two facilitators and up to ten researchers at one time.

Given that I experience intense anxiety, I wondered how I would cope in the group. However, each time it strikes me how quickly the conversation develops with people who are really interested to learn more, and how validating and encouraging it is. Sensitive experiences and emotions always arise, but they are explored honestly and courageously in these forums. I am left feeling that what I have shared has been accepted, and I gain new insights as well.

I also meet with medical students who are in their penultimate year of undergraduate study, to discuss my experience of mental health conditions and getting treatment. These sessions are facilitated by a psychiatrist and led by two or three people who live with mental health conditions and / or who care for someone who does.

During their six undergraduate years, medical students only have a twelve week psychiatry placement, so time for discussion is really important. If possible, we structure the sessions around questions from students. In particular, we explore the stigma around mental health diagnoses and how this can impact our care in the general hospital setting.

As well as living with borderline personality disorder and post-traumatic stress disorder (PTSD) plus several physical disabilities, I support someone who also has PTSD. There is a great deal of stigma surrounding these conditions and sadly, on many occasions I feel this has impacted the physical and mental health care that I and my loved ones have received. It’s really important to have frank discussions about why this happens, with students and researchers who are curious and empathic, and listen without judgement.

Students and researchers have fed back that hearing people’s first hand experiences in sessions makes a real difference. One student commented that the majority of reference books focus on the 'behaviours' of someone with borderline personality disorder, without describing what the person’s life history may have been, the trauma they may have experienced, what their internal experience of distress may be like, or how they feel about themselves and the world. Hearing about these experiences gave him a new perspective on the conditions and people he is treating and caring for.

I am very grateful to Hisham (consultant psychiatrist) and Iliana (R&D user and carer manager) for the opportunity to contribute to these discussions, and I have also learned new skills and found resources that help me in my own recovery. Peers with lived experience have encouraged me with their support, and helping others by sharing my experience enhances my own wellbeing and recovery too.

If you would like to be involved in CPFT's Expert By Experience programmes for research, contact leads Hisham Ziauddeen and Iliana Rokkou.

Ginny and her Expert by Experience colleagues share their insights to help improve care for distressing mental health conditions in this short film.