Before anyone with skin disease can hope to manage his or her own treatment, he or she has to learn about the condition and about the principles that underlie its treatment and how to apply them in everyday life. When this is achieved, the patient has much greater control and is more confident and self-reliant, although of course some advice and help from professionals will still be needed at times.
Many self-help groups or PSGs are founded by people who have been given no information about their condition, or whose questions have not been answered adequately. Often a PSG can resolve the practical everyday problems that health professionals are not aware of or avoid dealing with, through either embarrassment or a lack of understanding. Patients may have difficulty asking the questions that most concern them. They may be too embarrassed, or feel that the subject is too trivial and a waste of the doctor's time.
PSGs have a clear role to play in providing just such information, through fact sheets, leaflets, newsletters, in confidence on the telephone, CDs, videos or, increasingly, through their websites, so reaching wider international audiences. Most of this information is of course not yet rigorously evidence based, but as consumers acquire the skills of critical appraisal and an understanding of levels of evidence by working within organisations such as the Cochrane Consumer Network, information should become better and more reliable.
The UK Vitiligo Society is unique in publishing a book,5 about to be revised and updated, on all aspects of vitiligo, its management and current research. Most self-help organisations have developed a raft of fact sheets, written in good lay language but with professional input where necessary to ensure accuracy. These help not only patients, but also professionals. Leaflets and fact sheets can be tailored to different groups, such as children, parents, teachers, health and other professionals, as well as to the general public.
Information produced by PSGs can cover a wide range of topics, including diet, clothing, complementary therapies and useful tips on various aspects of managing the disease. Some of the information provided may not be easily available from any other source. Here are some examples.
• The UK Raynaud's and Scleroderma Association gives information on heating aids and tips on how to keep warm, including the use of electrically heated gloves and socks provided by the UK NHS. Few patients are aware of this.
• The UK Psoriasis Association publishes handy hints gleaned from their members in their newsletter. They also give information on "Dead Sea therapy".
• The UK National Eczema Society publishes booklets on PUVA, itching and scratching, and wet wraps, as well as the psychological aspects of eczema, and fact sheets on diet, topical steroids, sun protection and the use of Chinese herbs for eczema.
PSGs are careful to state that they do not recommend alternative treatments but they give sound advice on things to look out for to minimise trouble, for example checking that alternative practitioners have appropriate qualifications.
Self-help groups can also make valuable contributions by helping to collect patients' own personal experiences of illness - which often raise concerns that medical accounts do not consider. These narratives can be systematically analysed and made accessible to patients, professionals and students, so that everyone can be much better informed. The Database of Individual Patients' Experiences of illness (DIPEx) is an ambitious project that is establishing such collections for a wide range of diseases.6 So far it does not include experiences of any skin disease; that is planned for the future. The DIPEx website is at http://www.dipex.org.
The importance of all this work to the patient cannot be overstated. An understanding of the disease enhances the patient's ability to cope. An informed patient is empowered to take responsibility for his/her disease, and can learn to manage it more confidently. It is not uncommon for some patients to be better informed than their family doctor about their disease and its treatment. This can lead to problems in the doctor-patient relationship if it is not handled properly, but it can also contribute to much better collaboration between the patient and the doctor.
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