1,400 patient responses from the Education Programme for Patients were analysed for the first time by the Bevan Commission.
Patients in Wales want a more equal role in managing their own health and care, a leading think tank has found. The Bevan Commission worked with partners in Swansea University Medical School, Gwent Association of Voluntary Organisations (GAVO) and 1000 Lives Improvement to analyse 1,400 patient responses to Education Programmes for Patients (EPP), which provides courses for people with chronic health issues to help them develop the skills and confidence to self-manage their conditions.
The Bevan Commission found that patients identified significant challenges around communication with healthcare professionals, understanding the healthcare system and accessing services. Solutions suggested by patients included developing health literacy for all, giving patients access to their own health records and improving communication with frontline staff by reducing jargon and managing patient expectations.
Researchers analysed over 1,400 responses to the ‘problem-solving exercise’ which forms part of the EPP syllabus, and discovered that patients were often unaware of the specialist services that existed and of specialist roles such as chronic condition nurses and physiotherapists. Patients also wanted to be able to prepare themselves before attending appointments by reviewing their own medical notes and accessing other health-related information.
Previously, these valuable insights into the lived experience of health and care in Wales and practical suggestions (which are captured on paper during brainstorming sessions) would be discarded without review after the EPP courses had finished. The Bevan Commission has recommended that in future this and other information gathered from patients is used to inform service delivery and support patient needs. The Commission also backed patient calls to access their own health records and improve communication between NHS professionals and patients.
The Welsh Government’s long-term plan for health and social care, A Healthier Wales, pledged to “engage continuously” with the people of Wales to ensure that their views directly shape the NHS. The Bevan Commission is committed to delivering on this aim, as explained in a previous publication, Redrawing the relationship between the citizen and the state. The Commission has been working with networks such as NFWI Wales and its Bevan Advocates to encourage public engagement, and will share its latest report on patient-led solutions with the Cabinet Secretary for Health and Social Services.
Helen Howson, Director of the Bevan Commission, said: “The Education Programme for Patients is an untapped source of incredibly valuable patient views and ideas. I am delighted that through our partnership with EPP and 1000 Lives Improvement we are able to share these insights for the first time with the Welsh Government and senior leaders in NHS Wales.
It is essential to walk in the shoes of people and patients if we are to ensure that we have services that best suit people’s needs and make the most prudent use of the resources we have. The solutions suggested by patients in this report are not cumbersome; they are not demanding new hospitals or expensive treatments. Instead, they are common sense solutions, such as accessing their own medical records and improving health literacy, which will help many take better care of themselves and others around them as equal partners in their own care.”
Christine Roach, Self-Management Programme Manager, 1000 Lives Improvement, said: “Our Education Programme for Patients has proved incredibly valuable for those living with chronic conditions (and their carers) across Wales, and the problem-solving exercise in particular is a great way to capture their experiences and suggestions for improving the NHS. We are pleased that this valuable data has been analysed by our partners Bevan Commission, Swansea University and Gavo, and we hope other NHS organisations in Wales can benefit from our approach to make the most of patient feedback.”
Jules Horton, Bevan Advocate and EPP Co-ordinator for Caerphilly, Torfaen & Newport, said: "My story begins in 2012 whilst suffering effects of depression post-cancer, along with a number of other health conditions, I went on an Education Programme for Patients (EPP) course in Chronic Disease Self-Management in Pontypool, Torfaen. 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 then 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 share my experiences and the insights of other patients. 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!"
The report, Patient driven solutions to common problems: Education Programme for Patients (EPP), will be launched at the Welsh Public Health Conference 2018.