Self-Management is very much of the moment. The government strategy for dealing with the effects of long-term (or chronic) illness has self-management and self-care at its centre. There has been recognition that the development of self-management skills can make a significant impact on health outcomes and quality of life. This is reflected in government funding of the Expert Patient Programme, which has brought self-management programmes to every Primary Care Trust area in England and to most Local Health Boards in Wales.

The process which lead to this situation began with work carried out by Professor Kate Lorig (then a graduate student) at Stanford University in the 1970s. Initially her work focussed on the creation of a programme for people with arthritis. Its aim was to introduce them to a range of techniques which would allow them to feel more in control of their arthritis on a day to day basis. Crucially a second aim was to produce a programme, which could be delivered by people living with arthritis themselves – the courses were to be “lay led.”

The research results for the initial arthritis programme were so successful that further work was undertaken to develop a generic approach applicable to any chronic disease. This course now known as the Chronic Disease Self-Management Course has been used successfully throughout the world. Today Professor Lorig heads a dedicated team at Stanford’s Centre for Patient Education Research. They develop, promote and research the programme as well as providing training to course leaders.

Lay led self-management was introduced to the UK in 1994 by Arthritis Care who continue to run their “Challenging Arthritis” programmes to the present day. By 1998 the Chronic Disease Self-Management Course (CDSMC) was introduced to Britain with the British Liver Trust being one of the first organisations to be involved.

At about the same time a research project led by the Long Term Medical Conditions Alliance (LMCA) began. In partnership with eight of its member organisations LMCA sought to develop knowledge about self-management in a UK context and increase the number of self-management programmes being used. This project (the Living With a Long Term Illness or LILL project) ran for over two years, was highly successful and may be credited with “kick starting” the development of lay led self-management in the UK. It was also, given the involvement of the Haemophilia Society and British Liver Trust, the first time that people living with HIV experienced this form of self-management programme in Britain.

The statutory sector first began to show interest in the possibilities of lay led self-management soon after the successful completion of the LILL project. Government intent was first signalled by the publication of “The Expert Patient: A New Approach to Chronic Disease Management for the 21^st Century” in September 2001.

This document included the following commitments:

• To appoint Expert Patients Programme trainers in each Strategic Health Authority area.
• To create central co-ordinating and training resources to promote self-management in both public and voluntary sectors.
• To run a nationwide programme of CDSMC.
• To scientifically evaluate the effectiveness of the program.

Much of this work has been carried out in partnerships with voluntary sector providers though it is fair to say that the sheer scale of the Expert Patients Programme has overshadowed voluntary sector delivery.

The Expert Patients Programme has been a great success. To date there have been more than 1400 CDSMC courses run by 600 volunteer lay tutors. Structures for training course leaders cover the whole of England and Wales and the programme is now being introduced in Northern Ireland. Quality standards have been agreed which ensure that programmes operate to the same standards nationally. Evaluation results to date have clearly demonstrated the potential benefits of lay lead self-management training and the CDSMC is increasingly seen as part of mainstream NHS activity.

Lay led self-management and HIV

Small numbers of people living with HIV have attended CDSMP courses since the beginning of the LILL project in 1999. A number have become more deeply involved in the programme and have trained in leading courses.

However it has always been unlikely that large numbers of people living with HIV would be attracted to EPP courses as the generic nature of the courses means that they are usually for mixed groups in local community settings. This, of itself, would make attendance difficult for anyone with concerns over disclosure.

A number of CDSMP courses have been run specifically for people living with HIV, notably at Positively Women in London and at THT in Bristol and Cardiff, but development was slow. Participants in at least one of the courses felt that the “action oriented” nature of the course was perfect for people living with HIV but that the course failed to address specific issues around sex and intimacy, disclosure and medication.

The real spur to lay led self-management of HIV in the UK has been the availability of a “condition specific course” – the Positive Self-Management Programme (PSMP).

The PSMP was developed at Stanford University in the mid 1990s by a team lead by Allen Gifford. The course is directly derived from the CDSMC retaining its advantages while addressing specific concerns related to living with HIV.

The PSMP was first offered as a pilot in San Francisco in 1994. Further pilots were conducted by Kaiser Permanente at their Medical Centres in Oakland and San Francisco during 1995.

British interest in the PSMP followed publication of initial research results from the American pilots. It came from a number of sources: people working in HIV services (some of whom were able to go to Stanford and receive training), senior trainers working in the EPP and people living with HIV who were already involved with the CDSMP.

At the outset it was very much a case of interested individuals working independently however all parties involved collaborated to ensure that the American programme was revised to be appropriate for UK circumstances. All have agreed to work with standard material and within agreed quality standards. These standards, also adopted by the EPP and voluntary sector providers of the CDSMC, have been published (Stepping Stones to Success – NHS Expert Patients Programme, 2005).

To date the majority of PSMP courses have been held in London (where they are offered by voluntary organisations and NHS “Living Well” programmes) and Manchester (where they are offered by Body Positive North West). As capacity to deliver courses grows, and more organisations become interested, a gradual spread to other areas is now beginning.

To date there have been approximately 30 programmes in the UK. There is a strong core of trainers who continue to develop the programme and British trainers are active in attempting to develop programmes in Europe and Africa.