"M.E./CFS `services` Devon..."

About: Devon PCT

(as the patient),

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.

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Response from NHS Devon

Dear 'fluffy',

Thank you for taking the time to contact us about this issue. Please can you let me know which area of Devon you live in so that I can contact the correct people to get you a full response?

Do you live in the Exeter/East/Mid or North Devon area or South/West Devon?

Many thanks.

Kind regards,


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Update posted by fluffy (the patient)

Hi Susan,

I am in the South Hams, S Devon.

Thanks for quick response.


Response from Susan Pearce, Project Support Manager, DART (Devon Access & Referral Team), NHS Devon

Dear fluffy, Thanks for responding again. I have been asked to give you the name of Dilys Slater and her number is 01626 357035 or 07808 779180. She would like to talk the situation through with you if you are able to give her a call. You can also e-mail her on dilys.slater@nhs.net if that's better for you. Please do let me know if this is not suitable for you. Kind regards, Susan Pearce 01626 883888
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