"M.E./CFS `services` Devon..."
About: Devon PCT Devon PCT Exeter EX2 4QJ
Posted by fluffy (as ),
I appreciate that this is perhaps a nationwide problem - but it certainly is a postcode lottery! It took years to be `diagnosed` with CFS/M.E. - I was given no help or advice ...I was then diagnosed AGAIN (?) 2 years later - it took a further 2 years to be referred to an occupational therapist who I felt was negative and rude (once I turned up at the hospital to be told by the receptionist that the OT wasnt coming and I hadn't been told!) The CFS/M.E. Services in Devon (Catsle Circus, Torquay) have closed.
This is a serious and debilitating neurological/immunological disorder!
Where is the help? Where are the services? Where are the doctors who can acknowledge the facts of this condition - I've felt that sometimes staff have relied on their opinions before.
After paying privately to see a specialist in London (on the International advisory board for M.E. research etc) I went back to my GP - and was then told they couldnt prescribe long-term antiobiotics - why? It seems to me that it is a cheap and easily available drug? I know the implications of antibiotics and am on them anyway every 2-3 weeks for repeated infections...it's my opinion that there is a failure to recognise/treat people with M.E. in this area/country, or to try.
I could go on - and probably will another day but I am too ill to type more. I can`t understand how in some areas you are offered expensive immune drugs/hydrotherapy etc ...and it's taken me years to be thrown what seems like a few crumbs of very short-term service.