Work out what you want to say before a doctor’s appointment and write a list as a memory jogger. It might be worth taking a tape recorder and asking if you could record important consultations, in case you’re not well enough to take everything in at the time. If travelling is likely to be bad for your health do ask (and keep asking) for a home visit or contact by phone, letter or E-mail. You might be able to send a representative, such as a well-briefed friend or carer, and get it tape recorded in your absence. Find out what you can about M.E., as your doctor may not know very much about it. Doctors, as well as patients, find this illness frustrating and difficult. Information sheets are available from M.E. organisations. See page 3 ‘How to find out more about M.E.’. Action for M.E., and possibly your local M.E. group, have a lending library for members. If you want to ask a specific question of a doctor with experience of M.E. some of the M.E. magazines have a ‘Dear Doctor’ column. The ‘Professionals Referral Facility’ is a network of professionals, including doctors, available to Tymes Trust members, who will advise families direct (see Young People for details of Tymes Trust). You could ask your local group or contact if they know of any understanding doctors in your area. If you are very unhappy with your GP, you should be able to change. You can ask for a preliminary appointment with prospective new doctors, either for yourself or a carer to attend. Keep a handout of your medical history, your known allergies, what drugs you are on etc. as you never know what emergency might crop up.
About M.E. : Pain : People : Prescriptions : Visitors
AfME Guidance on the management of CFS/M.E.; YAO Polling Your New Consultant; YAO What is M.E./ CFS? (short introductory leaflet for doctors); Tymes Trust M.E. in Children and Young People (by and for doctors) £1; Tymes Trust GPs pack £2; InterAction 36; 2001; pages 6-15 Hospitals and M.E. – Special focus on inpatient care; InterAction 37; 2001; pages 8-9 NHS: how to make a complaint; InterAction 38; 2001; pages 16-17 Doctors with M.E. ; AYME Getting the best out of your doctor £1.50