Working with patients as equal partners is crucial to ensuring services provided by Essex Partnership University NHS Foundation Trust (EPUT) meet their needs.
Around 300 people with direct or family experience of using our services work closely with us to improve the care we deliver.
They help us in many ways, including staff training, improving services, and contributing to decision-making and governance.
This week is National Patient Participation Week (31 May to 6 June), which highlights the importance of involving patients in shaping health care services to make sure they best meet their needs. It also focuses on empowering patients to be actively involved in decisions about their care.
Two of our Lived Experience Ambassadors (LEAs) talk about the difference they are making to patient care – and how the support they have received has also had a positive impact for them.
LEAs support the Trust in many ways, including sharing their personal experiences of care to help train staff and support patients, families and carers; contributing to service improvements; sitting on interview panels for recruiting new staff; and working on initiatives to enhance patient care.
Georgina Wilson is part of the Trust’s Lived Experience in Education team, who deliver Oliver McGowan mandatory training on learning disability and autism to staff within EPUT and the wider Mid and South Essex Integrated Care System.
The training has been rolled out across the NHS and aims to save lives by ensuring health and social care workers have the skills and knowledge to provide safe, compassionate and informed care to autistic people, and people with a learning disability.
Georgina said: “Six months ago, I never would have imagined myself doing half of what I am now. The idea of standing in front of professionals, sharing my story, recording videos—it would have terrified me.
“I didn’t think my voice mattered. But the team showed me that it does. They gave me the space, the encouragement, and most importantly, the belief that I could do this.
“In just 36 days, I’ve delivered autism training for NHS professionals, recorded content that will help educate even more people, and trained so that I can host webinars.”
Georgina said the support she has received encouraged her to seek a formal diagnosis of Autism Spectrum Disorder (ASD).
She said: “ASD is part of me, and I am slowly realising the gifts it has brought me—after spending a lifetime focusing on the negatives.
“My diagnosis helped me reframe my entire past, and for the first time, I felt like I truly understood myself. And honestly, I don’t know if I would have had the courage to do that without the support and purpose I’ve found in this role.
“For a long time, I doubted myself. I felt stuck, like I had nothing to offer. But being part of this team has made me see my own strengths. It’s helped me recognise that my experiences aren’t just valid – they’re valuable. That I can make a difference.”
Pat Matten became a Lived Experience Ambassador for EPUT after attending a support programme for carers, delivered by the therapy team who were providing care for his wife Jenny.
Pat is involved in a number of forums and said: “I soon found myself involved in the Personality Disorder and Complex Needs Service Users Network (SUN) and Service Development Collaborative, which has afforded me the opportunity to have my voice heard.
“It quickly became clear to me that the support offered by the SUN was very far reaching and could also be of great benefit to my wife, for who I am caring.
“I approached the programme leader and enquired as to the ethics concerning a husband and wife acting in the capacity of service user and carer being co-engaged.
“The subsequent support I received on this subject was overwhelming and fully in favour.
“Over the period of her fulfilling a role within the service, I have seen her confidence and engagement skills improve tenfold and the effect it has had on her self-esteem has been phenomenal.
“This is not to say that it has been an easy journey all the time. But where there have been moments of uncertainty and doubt, there has always been help and guidance on hand to ensure that she feels supported in whatever way it is needed.
“I have also been invited to take on the role of co-lead for EPUT’s Carers Network, and I am privileged to be involved as a co-facilitator for the Family Connections programme, which has enabled me to work closely with clinical professionals as part of a highly motivated team. We are exploring the best way to deliver much needed support for carers of loved ones with emotional dysregulation.
“In a joint capacity, my wife and I are able to offer a unique insight and perspective on care and its applications and as such we are often invited to attend meetings together.
“Fulfilling a role as a Lived Experience Ambassador within the Trust is a wonderful opportunity to be part of the growth of the NHS and help shape the future of public healthcare for future generations.”
There are a number of ways in which patients, families and carers can be involved in shaping services at EPUT.
- Visit our Get Involved webpage to find out more about opportunities to shape services and enhance patient care at EPUT.