Send to a FriendYour GP (General Practitioner) is likely to be the medical person who co-ordinates and manages your care. GPs work as part of the primary healthcare team alongside community nurses, physiotherapists, occupational therapists and other healthcare professionals. Most patients who have chronic medical conditions have their care managed within primary care.
Sometimes it is necessary to be seen by a medical team based in a hospital. This is called secondary or tertiary care. If your GP is having difficulty reaching a diagnosis, or if your situation is complex and would benefit from specialist input, your GP will refer you to the nearest specialist or service. This is likely to be a doctor with an interest in the condition but not working exclusively with patients who have M.E. For example it may be a neurologist, immunologist or psychiatrist. Their speciality is not suggestive of the cause of your illness, rather that the doctor has developed an interest in M.E. and is willing to take the lead in your area.
Current NHS services for those affected by M.E. are woefully inadequate and the provision varies throughout the UK. Provision is particularly poor for those who are more severely affected by the condition.
For people who are more severely affected, basic non-medical care such as help with washing and shopping is provided by local social services departments. Again, provision and charges for this varies throughout the UK.
Action for M.E. is working to ensure that the needs of people with M.E. are being met in the NHS services set up across England.
For further information see: NHS healthcare for people with M.E.
View a selection of related articles from past issues of InterAction, our quarterly magazine.
Real experiences
Rebecca
'First I was referred to a consultant of general medicine for diagnosis. He examined me, asked lots of questions and in the end asked what I thought I'd got. When I said M.E. he told me I probably know more about it than he did. That was the end of the consultation: no treatment, no advice. A change of GP later and I was referred to a fatigue clinic. Despite discovering that the clinic was at the top of three flights of stairs with no lift, I survived and was put on a very low dose of an antidepressant coupled with a graded activity programme. I had a lot of help with planning and keeping to the programme and a doctor who really understood the difficulties of M.E. It was the start of a very long but sustained recovery process.'
Fiona
'Being housebound with M.E. can be very isolating, but I try to stay positive. Two years ago I was barely able to speak or walk, but now I've improved enough to be able to have visitors, chat on the phone and read a little, although I still need a wheelchair. I asked to take part in a graded activity treatment programme at a specialist centre, but by the time I reached the top of the 18-month waiting list I was too ill to manage the long sessions and the three-hour journey. After two trips I had a severe relapse and had to withdraw. It was soul-destroying. Now the only contact I have with the NHS is a two-minute phone call with my GP every few months. I'd love to see more help for people like me who are severely affected. At the moment it feels like we're invisible.'
Information first produced November 2003. Currently under review.
