Once cancer patients are back at home following a hospital stay, life can become lonely and confusing. They no longer have the routine of the hospital and treatments, and their old pre-treatment routines have changed.
Training Development Co-ordinator, Macmillan Cancer Relief
They might have stopped working for a while and feel too exhausted to return to their ordinary life. Sometimes people feel powerless while waiting to find out if their treatments have worked. They might also need to readjust to a different lifestyle in which they have to be more dependent on others. This is often a time when people have to learn to live with cancer and the uncertainty that goes with it; in the USA it is referred to as the beginning of ‘survivorship’.
The Macmillan Cancer Relief pilot project ‘Living with Cancer’ aims to address some of these issues and to help cancer patients to cope more effectively with their lives. The project is initially looking at two different models of self-management:
- A lay-led programme aimed at developing people’s abilities of problem-solving and self-care
- A professionally led programme aimed at developing people’s knowledge of the illness.
The Chronic Disease Self-Management (CDS-M) Programme, one of the programmes being piloted, was developed at Stanford University and pioneered by Professor Kate Lorig. It is being further developed through the NHS Expert Patient Programmes, an umbrella body for national voluntary organisations working with people with chronic illnesses. These programmes are led by people with the illness who are trained to run the courses.
Lay-led self-management courses are an effective way of helping people to take an active role in the management of their illness. According to Macmillan Cancer Relief it could be another way to support people affected by cancer. As more people are living with cancer for longer periods of time, so it seems appropriate to start looking at it as a chronic illness. Developing self-management skills can help cancer patients to live with their illness. The six-week CDS-M programme includes core self-management skills such as teaching patients to take care of themselves by understanding the mind-body connection. It can help people to cope better with their feelings; cancer patients often complain about fatigue and feeling low. The programme helps people to lead a more active life and develop their own ways of coping with difficulties and uncertainties, using methods such as visualisation and problem solving. They also learn how to improve their communication skills so that they can explain more clearly what they need and get positive responses from others.
The advantage of chronic disease self-management programmes such as this one is that they are led by people who have experienced the illness themselves. The limitations are that they do not cater for carers and they are not cancer-specific. The problems encountered by carers of people with cancer are enormous; they often experience similar feelings of loneliness and confusion to the patient and need support too.
The Living with Cancer programmes are specifically designed for people who are affected by cancer and include carers. This project is at a very early stage of development and we plan to look at other models such as The Learning to Live with Cancer programme (Roberts et al, 2002). Its aim is to help people cope better by educating them, and their families and friends, on various aspects of cancer. The eight sessions are professionally led and encourage people to take some control over the illness by being well informed. It has been recognised that not having ex-patients as tutors might take away some of the impact of the programme, so it is being professionally evaluated. Another option being considered is to develop a Macmillan Cancer Relief programme that combines the positive elements of both programmes.
Long Term Medical Conditions (LMCA): www.lmca.co.uk
Roberts, S., Black, C., Todd, K. (2002) The Living with Cancer Education Programme II: evaluation of an Australian education and support programme for cancer patients and their family and friends. European Journal of Cancer Care 11: 4, 280-289. Further reading
Wagner, E. (2001) Meeting the needs of chronically ill people. British Medical Journal 323: 945-946.
Weingarten, S. (2002) Interventions used in disease management programmes for patients with chronic illness. British Medical Journal 325: 925-928.
Wilson, J. (2002) Confident patients as partners. Consumer Policy Review 12: 3, 82.