Jules Horton: Capturing lost voices by listening to patient’s solutions

Most agree that it is vitally important to find patient-led solutions for NHS problems. But how many sources of patient feedback are routinely overlooked or discarded?

In 2012, while coping with the effects of post-cancer depression, along with a number of other health conditions, I reluctantly went on an education programme for patients (EPP) 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 I was also a full-time carer.

What I found when I started the course was that I was not alone. Every other person in the room (including the tutors) was also managing long term health conditions like me. The support that everyone gave to each other was incredible. We shared our experiences, and although we were dealing with different conditions, the similarity of our experiences was striking.

We took part in problem solving exercises that helped participants to start to work out problems for themselves and also helped others by giving them the opportunity to share their ideas on these common problems. This produced a wide range of solutions, generated by people like me about issues that we and many others routinely faced. It was a really valuable exercise, generating lots of useful insights about our experiences of health and care and potential solutions to problems that we experienced in the NHS. These responses were discarded at the end of the sessions and it occurred to me—wouldn’t someone be interested in learning from this?

It seemed a waste of valuable information and I was determined to make sure that this information could be seen and heard by people able to do something about it. So often it seems that the NHS is under attack by the media, but in these reports the voice of the people actually using the system isn’t heard.

Soon I was employed as a coordinator for EPP. This then led to me applying to become a Bevan Advocatemembers of the public who help to inform the think tank with their lived experiences of healthcare. With the support of the Bevan Commission, Public Health Wales, Gavo, and Swansea University, I have brought together the experiences of over 750 EPP participants in Wales, totalling 1,400 responses overall in a new report.

The report Patient driven solutions to common problems, sets out some of the most commonly reported issues, and more importantly, the practical solutions identified by people who use the system as patients and carers.

Many of the solutions put forward by patients are not resource-heavy or difficult to implement—for example, improving communication between frontline staff and patients simply means getting rid of the jargon and managing patient expectations better. Others are more complex, but could make a huge difference in patient experiences and 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. This shift to electronic health records has been widely discussed. By allowing patients to become custodians of their own health data, it could make a huge difference in ensuring an equilibrium of responsibility between people and health professionals.

It is my belief that the NHS cannot continue to just keep fixing people, but that it must help people to help themselves and each other and it also must listen to people about what is important to them. The health system needs the solutions and views of its patients if it is to improve its services to suit people’s needs. No source of patient feedback should be overlooked—instead they should be cherished as a untapped goldmine that could transform the way that the NHS works for the better. I hope our mission to highlight patient’s solutions in Wales inspires others around the UK to look afresh at the way that they collect and analyse patient feedback. Our voices are too valuable to lose!

Jules Horton is a Bevan Advocate and EPP Co-ordinator for Caerphilly, Torfaen & Newport.

Competing interests: None declared