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4. What is the Expert Patients Programme?
The Expert Patients Programme provides lay-led, group based support for people, in the self-management of their long-term condition. The programme is aimed at a wide range of people with different long-term conditions and of varying ages, geographic location and ethnicity.
The Expert Patients Programme is delivered locally by a network of trainers and around 1400 volunteer tutors with long-term conditions.
The programme focuses on five core self-management skills:
- problem solving
- decision making
- resource utilisation
- developing effective partnerships with healthcare providers
- and taking action
The programme offers a tool-kit of fundamental techniques that patients can undertake to improve their quality of life, living with a long-term condition.
The course enables patients to develop their communication skills, manage their emotions, manage daily activities, interact with the healthcare system, find health resources, plan for the future, understand exercising and healthy eating, and manage fatigue, sleep, pain, anger and depression.
Stepping stones to Success
An implementation, training and support framework devised in 2005, Stepping stones to success, helps individuals and organisations develop and run lay-led self-management programmes. Using the model of the Stanford Chronic Disease Self-Management Course, it takes volunteers through the steps necessary to becoming an accredited tutor.
The framework was developed in consultation with, and has been endorsed by, a wide range of voluntary and community sector providers of lay-led courses. Its aim is to ensure that all local lay led self-management courses are delivered to a consistently high standard across the country.
Working with marginalised communities
In addition to the main programme, the Expert Patients Programme has developed courses for a number of marginalised groups and communities.
The proportion of people from ethnic minority communities in England is currently 9.1 percent. Expert Patients Programme participants from these communities is currently around 7 percent, a notable achievement given that people self-refer to the programme.
A lot of work has gone into engaging with ethnic minority communities in deprived areas, often called the 'hard to reach' groups. In reaching these groups and changing people's lives, the Expert Patients Programme is also helping to address health inequalities.
Much of the programme's success is due to involving local people in the design and delivery of services, and making particular efforts to understand these groups and communities and what they need from services.
Expert Patients Programme materials are now available in eight different languages including, Greek, Bengali, Hindi, Punjabi and Turkish. Bilingual trainers have been recruited and trained to deliver courses, and a multi-lingual DVD promoting the Expert Patients Programme is currently being developed.
Working with young people
Although chronic conditions are generally associated with older people, many young people are affected as well. In England just over 1 million children have been diagnosed with asthma. Approximately 180,000 children have type 1 diabetes. And 165,000 children are born with cerebral palsy.
If we include the numbers for the incidence of cystic fibrosis, ME, congenital heart diseases, sickle cell anaemia, spina bifida and other long-term conditions, then the scale of chronic diseases among young people is considerable.
The Children's National Service Framework approached the Expert Patients Programme with a view to devising a targeted programme especially for young people, and this work is now complete.
A programme has been piloted, comprising three one-day workshops facilitated by teenagers themselves. It is tailored specifically to children and young people who will be making the transition from being looked after by their families to a more independent life.
A programme to support the parents of these children, to give them the skills and support to deal with the impact of having a child with a long-term illness, has also been developed.
Supporting carers
Carers of people with long-term conditions often receive little support. There are around 6 million carers in England. Nearly a quarter of these are providing over 50 hours of care, unpaid, each week.
To help provide support to carers, the Expert Patients Programme has developed a course called 'Looking after me'. The course tackles some of the issues carers face. It helps carers to solve problems and plan for the future, and think more positively about themselves.
Participants also spend some time thinking about their own health.
Expert Patients Programme online
To cater for people who are not able to attend a six-week course, the Expert Patients Programme are also developing an online programme requiring only minimum computer skills.
The online course covers all the same topics contained in community courses, but participants are able to log on as often and at any time they wish.
Feedback from participants
Anecdotal feedback from participants has provided powerful evidence of the benefits experienced by people who have completed these self-management courses.
- A man with ulcerative colitis who was on 8 tablets per day to control spasms had, by end of a six-week Expert Patients Programme course, reduced this to 4 per day. By the course reunion six months later he was off the tablets completely after 27 years' dependency. He put this down to the breathing techniques he had learnt on the course.
- A man with MS, who lacked the motivation even to leave his house, completed the course and is now working almost full-time as an Expert Patient Trainer.
- A stroke sufferer, who had to be brought to the course sessions by his wife, was at first very quiet, but by the 4th session had spoken up to say he had managed to bend the fingers of his right hand, and had managed to write for the first time in five years.
All these accounts are in keeping with what we know from experience elsewhere.
The philosophy underlying the Expert Patients Programme has implications for the way in which people live their lives beyond the management of chronic disease. Those who are able to deal successfully with the problems posed by a chronic illness, and those who avoid illness through a positive lifestyle, may have a great deal in common.
Such people live longer and healthier lives and are an example of how assertive engagement, both with one's own health and with the healthcare system, can improve the length and the quality of people's lives.
Expert Patients newsletter
'EPP Update' is produced up to four times a year and is aimed at everyone involved in or interested in the programme. It gives an overview of the local and national projects the programme is currently involved with.
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