In Saving Lives: our healthier nation, the government announced its intention to introduce an expert patients programme to help people with chronic illnesses maintain their health. This will be led by chief medical officer Professor Liam Donaldson, and will start by setting up a taskforce.
One in three people in the UK suffers from a chronic illness or disability such as asthma, diabetes, arthritis or osteoporosis.1 Most treatment and care takes place at home, where a lack of understanding of how to maintain health can increase hospital admissions, emergency treatment and further illness.
In the UK, there have been few patient self-management schemes, yet research shows they have beneficial effects, including improved health status, better communication with health professionals and fewer hospital admissions (see box).
Issues for the taskforce
The taskforce will have to take note of the fact that health professionals carry out the lion's share of patient education in the UK. The agenda is driven by what the professional considers the patient needs to know to manage their condition. Often this is based on a biological and medical view of illness rather than a holistic one that takes into account the social circumstances in which people live.
This approach may offer clinically accurate information, but instructions may be difficult for patients to carry out because of the way they live. More importantly, information might not address the aspects of the condition of most concern to the patient, so troubling symptoms can continue for years when ways of alleviating them are available.
Programmes led by lay people are more likely to address issues from the patients' perspective. The Lill project (see box) is one example, but is this what the DoH has in mind for its expert patients? It seems likely because Saving Lives references Professor Lorig's work and includes details of Arthritis Care's self-management programme. In addition, a representative from the Long-Term Medical Conditions Alliance will join the taskforce to design the expert patients programme.
If the DoH increases the number of programmes led by people with a long- term illness this could create conflict between patients and health professionals. Patients may enter consultations with a clear idea of what they need to help them manage their condition, and an unprepared clinician could find this threatening. If programmes led by lay people offer information and advice inconsistent with that offered by health professionals, patients could end up confused. Programmes led by lay people need to include an awareness of training provided by health professionals and foresee any potential conflict. Accreditation may be needed to ensure patients receive a good standard of advice.
Professional reluctance to recognise self-help
Another concern is a marked lack of willingness by health professionals to refer patients to self-help groups to date. A study of community-based cancer support groups found that hospitals did not make information about local support groups freely available to patients but instead were 'inclined to be cautious'.2 Some staff were unaware of groups, others waited for patients to ask, while some only gave information to those for whom they thought it appropriate. NHS staff tended to see providing information about a self-help group as a referral rather than a way to offer choice.
If services for people with a chronic disease are to become a central part of the NHS, health professionals will need to recognise the value of patient and carer-based support, and to acknowledge that it can be difficult for those who have not experienced a chronic condition to understand the physical, emotional and psychological demands it brings. Other sufferers can bring insights into day-to-day management needs, as well as help making the decisions that are often necessary if treatment choices are available.
Information about self-management programmes should be easily available in many health service locations, including GP surgeries, health centres and outpatient departments, as well as community sites such as libraries and supermarkets.
If the patients' perspective is to influence care more, health professionals need to liaise with programmes led by lay people. They could work together to develop programmes, although there is a danger that they will dominate unless safeguards are introduced.
Another consideration is the lack of evidence about what is effective. This is largely due to a lack of co-ordination between evaluation of education for different clinical conditions. In some areas, poorly designed studies are a factor - for example, in diabetes. Researchers who conducted a review for the BDA reported that the methodological quality of many trials could be improved and said: 'Given the apparent enormous potential of educational and psychosocial interventions to benefit patients, similar methodological rigour should be applied to their development and evaluation as occurs with new pharmaceutical products.'
The expert patients programme should include evaluation. It should draw together information about what is effective and ensure it is disseminated.
Finally, this programme can be seen as an integral part of the broader agenda to involve patients to a greater extent in health decisions.
Shirley McIver is senior fellow, health services management centre, Birmingham University.
The government's proposal to set up an expert patients programme to enable those with chronic illnesses and disabilities to manage their condition is a welcome step towards greater user involvement.
The programme should avoid a medical model and take account of patients' social circumstances.
The programme must include evaluation.
Health professionals in the UK have yet to embrace patient self-management. To date they have been reluctant to refer service users to self-help groups.
1 Department of Health. Saving Lives: our healthier nation. Department of Health, 1999.
2 Bradburn J et al. Community-based Cancer Support Groups: an undervalued resource? Clinical Oncology 1999; 4 (6): 377-380.
3 Lorig K et al. Evidence suggesting that a chronic disease self-management program can improve health status while reducing hospitalisation. Medical Care 1999; 37 (1): 5-14.
4 Griffin S et al. Educational and Psychosocial Interventions for Adults with Diabetes: report to the British Diabetic Association. 1998
5 Hilton S. Patient education in asthma. Family Practice 1986; 3 (1): 44-48.
6 Cooper J. To cope on your own. Patient I 1999; 26, May. Further information on the Lill project from www.lmca.demon.co.uk or 0171-813 3639.