Book Reviews |
Self-Management of Long-Term Health Conditions, A Handbook for People with Chronic Diseases: NHS Expert Patients Programme
Self-Management of Long-Term Health Conditions, A Handbook for People with Chronic Diseases: NHS Expert Patients Programme. Published by Bull Publishing Company, Boulder, CO, USA. Distributed in the UK by The Stationery Office. ISBN 0-923521-74-7.‘Self-Management of Long-Term Health Conditions, A Handbook for People with Chronic Diseases’ is a 200-page manual given to participants on the NHS Expert Patients Programme (EPP). It came through my door free of charge presumably because I am a doctor and because it does not appear to be on sale. The NHS EPP is a self-management programme for anyone living with any long-term health condition. The programme consists of six 2.5 h sessions, delivered by lay-tutors who themselves have a chronic disease. The sessions deal with pain, fatigue, depression, relaxation techniques, exercise, communication and planning among other things with a ‘strong emphasis on participants setting practical, achievable goals which are monitored each week’. The website (www.expertpatients.nhs.uk) cites the benefits for health professionals as less general practitioner consultations, outpatients visits, A&E attendance and pharmacy visits and 21 000 people have attended an EPP course so far. Patients can self-refer or be referred to the programme and details of courses are on the website although there were none available in the entire city of Stoke-on-Trent when I visited, the nearest in Staffordshire being 40 miles away.
My interest was spiked by the manual. This appeared to contain a lot of the things I find myself telling people repeatedly in my clinics about pain management and exercise among a whole host of other things. In fact the manual is a somewhat overwhelming dos and don'ts list which deals with everything from getting out of bed to preparing to die. It is very American in appearance although efforts have been made to Anglicize it and I use that word because it is aimed at expert patients in England. However, there is adequate acknowledgement to the original American version which came from the Stanford University Chronic Disease Self-Management study.
‘This handbook will help you find ways to manage your condition and learn a healthy way to live with a long-term or chronic illness’ the manual tells us on page 1. ‘If you have a chronic condition you have to choose how you will manage it. You can choose to suffer and do nothing, just take your medicine, or take charge and be an active self-manager’. Chapter one then goes on to talk about the ‘seven steps’ to become a day-to-day active self-manager and instructions are given on how to devise action plans which can be applied to each symptom or problem. The 13 chapters are well organized and deal with managing symptoms, exercise, communication, sex, diet, medicines and planning for the future. The chapter on ‘Communicating’ is about talking assertively and I particularly liked the sub-section on communicating with your doctor which includes how to ask for a second opinion. Other sections, however, are disappointing and drilling down into fatigue gives little in the way of actual management and no mention of energy balance, good-day–bad-day limits or graded exercise therapy. The section on stress and how to manage it is better and contains a number of useful techniques. Work is not listed in the index and there is a single sentence about contacting a ‘Disability Employment Advisor at the Local Job Centre if you are employed’ on page 187.
This is a good resource however and I see a lot of people who would benefit from attending the programme and owning a manual. Its strength is its depth and the breadth of subjects it tackles. Its weakness is the amount of information presented and the language it uses—it does not have the conviction or simplicity of The Back Book. Nonetheless, it is something occupational health professionals can be usefully aware of and in future some of my reports will definitely have recommendations for the individual to contact the Expert Patients Programme.
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