My story begins in 2012 whilst suffering effects of depression post-cancer, along with a number of other health conditions, I reluctantly went on an Education Programme for Patients (EPP) course in Chronic Disease Self-Management in Pontypool, Torfaen. I had no expectations from this course as I already felt I was an ‘expert’ in keeping myself alive and was also a full-time carer.
What I found when I started the course was that I was not alone. Every other person in that room (including the tutors) were also living with long term health conditions like me and the support that everyone gave to each other was incredible. Although we all had different conditions, our experiences were strikingly similar.
We undertook problem solving exercises that helped us to work through some of the issues we experience with the NHS and in our daily lives, and we helped each other by sharing our solutions to these common problems.
Together, we produced a wide range of responses. However, these responses were discarded at the end of the sessions and it occurred to me - wouldn’t someone be interested in hearing about these? It seemed a crazy waste of such valuable information and I became determined to make sure that it could be seen and heard by people able to do something about it.
Soon I became employed as a coordinator for EPP and I was often being asked to speak on behalf of patients by telling my story. This led to me applying to become a Bevan Advocate (members of the public who help to inform the think tank with their lived experiences of healthcare) and with the support of the Bevan Commission I have had the opportunity to bring together the experiences of over 750 EPP participants in Wales, totalling 1,400 responses overall.
The report Patient driven solutions to common problems, with support from my colleagues from the Bevan Commission, Public Health Wales, Gavo and Swansea University, sets out some of the most commonly reported issues and more importantly practical solutions, identified by people who use the system as patients and carers.
Too valuable to lose
Many of the solutions put forward by patients are simple to implement – for example, improving communication between frontline staff and patients. Others are more complex, but could make a huge difference in ensuring that we feel like equal partners in our care. For example, many patients would love to have access to their own medical notes and records so that they can prepare themselves before their appointments.
The NHS cannot continue to just keep fixing people, it must help people to help themselves and each other. It must also listen to people about what is important to them. No source of patient feedback should be overlooked – instead they should be cherished as untapped goldmines that could transform the way the NHS works for the better. I hope our mission to save patient solutions in Wales inspires others around the UK to look afresh at the way they collect and analyse patient feedback. Our voices are too valuable to lose!