Jane Cooper
Long-term Medical Conditions Alliance (LMCA)

Peter Jay
British Polio Fellowship

The Long-term Medical Conditions Alliance (LMCA) is the umbrella body for national voluntary organisations working to meet the needs of people living with long-term conditions. Currently the LMCA has a membership of 109 organisations.

In September 1998 the LMCA began a project called Living with Long-term Illness (Lill). The original aims of the project were:

• To increase the number of lay led self-management programmes;
• To create a self-management information sharing network;
• To facilitate robust monitoring and evaluation processes and
• To map self-management programmes.

The report of the Lill project was launched at a conference for the Royal College of Physicians at the end of February 2001.

One strand of the project aimed to help people living with long-term conditions to develop a range of life skills, which enable them to better self-manage their condition on a daily basis and to better self-manage in partnership with their healthcare practitioners. For this to happen, people with long-term conditions need to be willing to take greater responsibility for their wellbeing. Health professionals also need to recognise patients as the expert in their individual illness. The programme used by the LMCA helps people acquire skills to enable them to develop greater confidence in managing the emotional and social consequences of their disease.

"A disease is a condition of the body. An illness is the way a disease interferes with every day living. Doctors are experts in disease, but only patients can experience the consequence of illness."

In order to increase the number of self-management programmes, the LMCA piloted a generic self-management course developed by the Patient Education Centre at Stamford University, California called the Chronic Disease Self-Management Course (CDSMC). CDSMC is a generic course, which means it can be delivered to a group of people living with a range of long-term conditions. Most importantly, it is lay led. This means that it was developed using the experiences of people living with long-term illnesses as its starting point. People living with long-term conditions are then trained as volunteer tutors who go out into their local community an deliver the course to others in a similar situation.

These tutors are facilitators, helping people to discover their capacity to solve problems. In effect tutors and participants work together, discovering new skills and techniques to break the vicious cycle of pain, depression and anger, which is often part of living with a long-term condition. People must deal not only with the disease but also with the impact that it has on their lives. To achieve the main goal of greatest physical capability or optimum health the tutors offer strategies, options and techniques needed to deal with and challenge the different aspects of a long-term condition. Many topics covered not only help a long-term condition; they also help in other areas of life. People who live with a long-term medical condition face progressive and constant changes. This course teaches how to face these changes in long-term illness, not as a threat, but as a challenge.

Topics covered by the course include action planning or goal setting, breaking the symptom cycle, relaxation, fitness, fatigue, living wills, communication skills and pain management. The aim of the course is to increase self-efficacy or confidence, which in relation to long-term illness can be defined as one's perceived ability to manage or control various aspects of the condition.

The course is not about replacing existing healthcare; it is about complementing it. An example given showed that self-management interventions alone can provide a reduction in symptoms of between 15% and 30%. Best healthcare alone can provide relief of between 40% and 60%. But together self-management and best healthcare can provide a reduction of symptoms of between 57% and 90%.

Post-course research has been carried out by the Psycho-Social Research Centre and has demonstrated significant increases at four months after the course in cognitive symptom management, self-efficacy, communication with doctors and a general rating of mental health. Significant decreases have been found in fatigue, health distress, anxious mood and visits to specialists. Findings from the research to date are consistent with randomised control trials and the centre will now continue to complete follow-up of participants at four months and twelve months after attendance on the course. Self-evaluation by the tutors, which was recorded through weekly learning journals, showed that the most significant change to them was an increase in confidence both as self-managers and as lay tutors.

To sum up what difference has been made by the Lill project.

• There has been an increase in the number of organisations using lay led self-management programmes from two in 1998 to 13 at the end of last year and that number is set to increase.
• There are now more self-management courses for people living with long-term conditions running across Britain.
• There have been positive outcomes for participants, tutors and organisations. New partnerships have been facilitated between people living with long-term conditions, volunteers, voluntary organisations, researchers and healthcare providers.

More information about the LMCA and the Lill project can be obtained from the Long-term Medical Conditions Alliance, Unit 212, 16 Baldwins Gardens, London EC1N 7RJ.