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1. Introduction
'I count the establishment of the Expert Patients Programme as one of my proudest achievements during my time as Chief Medical Officer. The way in which it has been made into a reality up and down the country, by trainees, volunteers and patients with chronic diseases, is quite inspirational.' Sir Liam Donaldson
Since the second half of the 20th century far more people are living into their seventies, eighties and beyond. Advances in medicines and healthcare technologies mean that many people now live long lives with what were once regarded as killer diseases; heart disease and cancer for example. Improvements in public health have also eradicated many of the infectious diseases with a resulting increase in life span.
For many people increased longevity also means learning to live with heart disease, stroke, cancer, arthritis, diabetes, mental illness and other conditions from middle through to old age.
The predominant disease pattern in England and in most other developed countries, is now one of chronic or long-term illness rather than acute disease. Current estimates suggest that there are about 15 million people with long-term conditions in England, and that number is rising.
Yet we know from research that people who live with chronic disease often know what they need to do to manage their own condition and, given the necessary skills, can moderate the impact of their disease and improve the quality of their lives.
In 1999, the Expert Patients Task Force, chaired by the Chief Medical Officer, Sir Liam Donaldson, was set up to design a programme that would bring together the valuable work of patient and clinical organisations in developing self-management initiatives.
The Expert Patient Task Force published a report in 2001, The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century, which was to lay the foundations for the Expert Patients Programme.
The Expert Patients Programme is a lay-led self-management programme specifically for people living with long-term conditions. The aim of the programme is to support people in increasing their confidence, improving their quality of life and better managing their condition.
Having been successfully piloted, the Expert Patients Programme currently offers around 12,000 course places a year. It is being made available through primary care trusts and partner organisations.
Internal evaluation data from approximately 1000 Expert Patients Programme participants who completed the course between January 2003 and January 2005, indicates that the programme is achieving improved health outcomes for patients and reducing the degree to which they use healthcare services.
Bilingual trainers have also been recruited to deliver the course in non-English speaking communities. The course material is available in six different languages. Further developmental work is underway to provide adapted courses for parents and children, carers, prisoners and people with mental health problems.
In January 2006, Our health, our care, our say: a new direction for community services, made a commitment to increase the availability of the Expert Patients Programme and to establish a Community Interest Company to market and deliver self-management courses.
Community interest companies are a form of social enterprise organisation. They are limited companies which reinvest surpluses. They are asset locked to ensure all assets are retained for the identified community. Community interest companies do not have the tax benefits of charities and are overseen by the Community Interest Companies Regulator.
The new Expert Patients Programme Community Interest Company will provide the opportunity to develop new courses designed to meet people's different needs. It will be able to make its products available in new markets, developing new partnerships with all stakeholders involved in self-care support.
Health and social care organisations will be able to commission courses from the new provider.
The Expert Patients Programme will become one of a range of integrated self-care options in health and social care for people with long-term conditions.
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