38 Health and well-being
expert Supporting the patient
Our researchers have charted the rise of the so-called ‘expert patient’, and continue to explore key issues surrounding self-management and service design. As well as influencing the ongoing debate about policy, their work has brought about changes in clinical practice.
People with chronic illness, such as heart disease, stroke, cancer, arthritis and diabetes, often have more knowledge than their clinicians about their own condition. The Expert Patients Programme (EPP) – first piloted by the NHS in 2002 – aims to turn this knowledge into practical skills so patients can play a bigger part in their own care. It now runs throughout the NHS, and since 2007 has been provided by the Expert Patients Programme Community Interest Company. There is evidence to suggest that the approach is working, particularly in terms of increasing people’s self confidence in managing their own long-term condition.
Self-management has been an area of special interest for our Centre for Research in Primary and Community Care since the early 2000s. Senior Research Fellow Dr Patricia Wilson, who leads the team involved in these studies, has a clinical background in community nursing. She has written and presented widely on the expert
patient, self-management and service design in long-term conditions.
‘Self-management is all about empowering people to take more responsibility for their own care, so that they have the best quality of life despite having a chronic disease. Our work tackles some of the big questions, such as how self- management affects the conventional relationship between professionals and patients, but it also has real relevance and lasting impact at clinical practice level,’ explains Dr Wilson.
She cites improving education about Atypical Mole Syndrome (AMS) as an example: ‘We worked with The British Skin Foundation and a local consultant dermatologist to give patients with AMS more knowledge and useful tools to aid self-examination. With around two per cent of the population affected by AMS, replicating these changes introduced at a local practice on a national basis can improve outcomes for a significant number of people.’
Our team’s studies have contributed in other areas: the development of pilot expert patient courses; benchmarking of the EPP’s implementation process during the national roll-out; and informing the Department of Health’s work on developing self-management for cancer survivors.
A major challenge for both government and clinicians is encouraging hard-to-reach groups to participate in EPP training courses. Close to a million people in England have a learning disability, and are four times more likely to have a chronic disease than the general population. Dr Wilson led a national evaluation of the EPP modified for people with moderate learning disabilities, and changes were made to service design and delivery as a result.
At an international level, Dr Wilson’s work has also influenced the development of a sickle-cell self- management programme in the USA.
‘As self-management initiatives continue to evolve, we’ll carry on sharing our study findings through conference presentations, papers, articles and the Internet. Our aim is to refine support for the expert patient and widen access to training so that people living with long-term chronic conditions feel more confident and in control of their lives,’ says Dr Wilson.
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