Experts by Experience are people who have personal knowledge of our services, either through their own use of those services, or through caring for someone else. They help us better understand and meet the needs of our service users and their carer’s, and assist us to involve and learn from people who know most about our services through receiving them.
Here some of our Experts by Experience tell us about how they got involved and how what they do benefits them and the Trust.
Ed’s story: “Back in 2013 I was invited to a Team meeting of professionals by a Psychologist, to talk about my personal experiences. Seeing the big impact this had and how encouraging the listeners were, I was motivated to find something similar and found the Expert By Experience programme.
I have since encountered great feedback from respectful staff in continuing public speaking as an Expert By Experience and have been encouraged to follow a care path in my own career, helping people who are living with similar experiences. I have undertaken several voluntary jobs which has led to currently being a Peer Support Worker with Recovery College and a RPPR (Relevant Persons Paid Representative) for Powher, sometimes working in Care Homes, for instance, advocating safeguarding and ensuring that rights are being upheld. I have just published my second book as I have found writing also to be therapeutic to my mental processes.”
Jo’s story: “I was asked to give a talk at a nursing conference, while I was spending time out of the County in a specialist hospital. The experience was empowering, people listened and commented that they felt more educated, and I felt I would like to do more of that as it improved my self confidence and self-esteem. As I was a teacher previously I was comfortable standing talking to groups.
“When I came back to the County I reached out the Expert By Experience Programme and was supported to speak at stakeholder events for the Trust where I realised I enjoyed educating people about Mental Health. I have also been involved in Time To Change tackling stigma training and recruitment of staff. This work has aided me to restart my working life with a position of Peer Support worker with the Complex Emotional Needs Team. On reflection, the title has been developed to Lived Experience Practitioner which much better represents the work I get involved in, including working alongside Gloucestershire Constabulary. I am now earning again which has helped me feel better about myself. I often meet new people and so have regained the confidence to meet new people in my personal life too. The Expert By Experience Programme works. It is a supportive environment with supportive staff. It has helped me give something back to the Services that have supported me.”
Jennifer’s story: “Becoming an Expert by Experience has given me an interest outside of family life. As a carer for my disabled adult son, as well as having some physical health issues myself, I am limited in what I can manage to do outside of taking care of the family home and helping with my son’s chickens. I am doing a distance learning degree which means I don’t meet with others from the university to practice and apply the skills I have learned. However, being an EbE has allowed me to put those skills to use, and see how they work in real life. This also means that GHC teams gets some extra insight that they might not otherwise have. It is one thing hiring a faceless consultant but working with a patient who has real lived experience of the services that GHC provide as well as academic experience allows for a richer experience for both myself and the trust.”
Jo’s story: “I have worked as an Expert by Experience for GHC, the Gloucestershire Clinical Commissioning Group and NHS England over the past few years. When I first started, I was anxious that no-one would want to hear my views or take me seriously. However, my experiences of attending meetings, giving talks and co-facilitating training to professionals were very positive. I often received feedback that hearing a first-hand account from a service user perspective brought the issues to life and highlighted things not thought of before. It was also good for me – my self-esteem increased and I even eventually felt confident enough to make a career change into mental health myself. I now work as a Lived Experience Practitioner for the Complex Emotional Needs service using my own experiences to help others on a daily basis, which I love.”
Tim’s story: I enjoy being an Expert by Experience at GHC with Simon Shorrick as well as at Inclusion Gloucestershire where I work. Simon is Strategic Health Facilitator at GHC. Working with Simon, I am involved in the Health Action Group. The Health Action Group is for people with a learning disability. The aim of the group is to work together to make health care better. I also took part in designing and delivering the Oliver McGowan Mandatory Training in Learning Disability and Autism. I am involved in the Big Health and Wellbeing Day that GHC organises every year.
Martha’s story: Becoming an Expert By Experience has given me a voice at a time when I really needed it. It gave me confidence and a platform to champion Personalised Care and the use of PHB’s (Personal Health Budgets). Having grown up with a physical disability and being under Mental Health Services for some years, I know first hand the importance of seeing patients as people first, not their diagnosis.
“I have already been involved in various workstreams and I am particularly interested about Experts By Experience being involved in recruitment. I feel it is vital the right people are in place that are passionate about their Service and will fight for the rights of patients when they are unable to speak up for themselves and when they are at their most vulnerable. Being treated as an equal is essential for self-esteem and recovery. I feel valued, supported and can contribute without the pressure of having to agree.
“Becoming involved in the programme has reignited the fire in me that I thought I had lost, giving me a real purpose.”
Find out how you can become an Expert by Experience here: Working Together > Glos Health & Care NHS Foundation Trust (ghc.nhs.uk)
