"Good timing for ME/CFS specialist nurse"

About: NHS Fife

(as the patient),

I have had ME/CFS for many years now. The support and understanding of the condition by the medical profession has mostly been quite poor and I have found that I needed to look elsewhere for ways to try and manage the symptoms to give myself the best quality of life.

It was during looking for support on the internet that I came across a specialist service in my area of Fife. When I asked my GP if they could refer me to this service, they said they would give it a go but they had never heard of this service and thought it might be private.

It turned out to be an NHS service and I have been getting support, information and advice from the service for over a year now. The timing could not have been better as I had a relapse of my symptoms following surgery about 8 months ago.

I was assessed by a health worker as being fit to travel by train to Glasgow for the operation. The nurses insisted that I needed to leave the hospital within the alloted time and seemed to thing I was faking the exteme fatigue that I felt.

What should have taken about 2 weeks of recovery, left me taking 8 months off work and still not being any where near back to my pre-op fitness.

Thankfully, I have been given sound advice on becoming more active; I have changed some medication on his suggestion that is making a difference and I no longer need to bother my GP about my condition to try and get help that they are rarely able to provide.

They are not specialists and their knowledge of the condition varies from complete ignorance ("mm, ME, does it exist? The jury is still out on that one") to sympathy and at least being believed. This specialist service has saved me from using precious resources that are not equipped to deal with this complex condition. We need this service in the same way that diabetics etc need their specialists. I believe it makes economic sense.

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Responses

Response from Louise Ewing, Patient Relations Manager, NHS Fife

picture of Louise Ewing

Dear Annemac

I was checking on our stories this morning and noticed that yours did not have a response - I am so sorry! You will however see that your story has been read by a number of staff in Fife which is very positive.

From reading your story it is clear that your condition went un-recognised for quite some time which had a big impact on you. I am so glad you found helpful information which signoposted you to a place where you were able to receive appropriate advice and support. This highlights the importance of making information accessible and ensuring that staff are aware of the range of services available.

Your comments are very welcome and it was good to hear of the sway in which the support offered has helped you.

I will highlight your point about knoweldge of the service and availability of information to see if there is anything else we could be doing on that front

Thanks for taking the time to post

Regards

Louise Ewing

Patient Relations Mnagaer

NHS Fife

01592 648153

patientrelations.fife@nhs.net

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