"My Journey with ME/CFS"

About: NHS Fife

(as the patient),

I worked as an ITU/ Paediatric nurse for 15 years. Although very familiar with the health service and the critical role it plays in supporting vulnerable people at a very difficult time in their life it did nothing to prepare me for the challenges I would face when 5 years ago I found myself in the role of patient instead of my usual comfortable role as care provider.

The process of getting a diagnosis proved an enormous hurdle in itself with medical personnel I saw repeatedly dismissing my symptoms and trying to tell me I was depressed and should try anti depressants.

It took much effort and persistence to be given a diagnosis, at a time when I had so little reserve and capacity and struggled to cope with walking up my stairs at home. In a matter of months I had gone from working 12 hour shifts, volunteering as a vice chair in a local children's charity and enjoying balancing my role as a mum to 2 young children with my other interests to being almost house bound.

The diagnosis although very difficult in itself was also conversely greatly welcome, as I now had something to work with. After a period of many months of being unheard, and feeling more and more helpless and hopeless I heard about the specialist role that Keith provides.

I requested a referral to the CFS/ME Specialist Service. The relief was enormous when my appointment eventually came through, at last someone who knew something about this incredible debilitating and isolating condition. From the moment I met Keith I felt seen, listened to, understood and supported.

His in depth, varied knowledge, realistic yet hopeful outlook, and gentle manner immediately put me at ease and gave me what I had been searching for for 10 months, validation. His extensive knowledge of the subject, the way he was able to express my challenges, my many symptoms without me having to try to explain it all, portrayed to me that he got what I was going through, he understood this condition in a way that no other professional had.

I remember vividly and believe I always will the small spark of hope, relief, joy and so much more I felt that day on leaving Keith's office. I dragged my weary body, struggling to make my way to the reception, an aged shuffle that wasn't in keeping with my years and slowly sat down and began to cry tears of relief. I felt the heavy fear leave my chest, and weightiness leave my shoulders, utterly relieved that someone was listening and someone could help me.

I later discovered how incredibly committed that single over stretched someone actually was when I learned that Keith runs this service with no support, admin, clinical or otherwise. The incredibly thing that struck me when I discovered this was how he, a true professional, never once gave any indication of how over stretched he is in his role.

It is almost 2 years since I last saw Keith, as my condition has improved to a level where I no longer require the support he offered. I have no doubt he continues to offer the same high quality of service, despite the very real pressures and constraints of time and budgets that he undoubtedly faces.

There are over 20, 000 people living in Scotland with this invisible, poorly understood condition that wreaks havoc on people lives. Like a thief it takes everything that such a short time before was taken for granted.

I am truly grateful for the fact that I was one of the lucky ones, that received the specialist care and support that should be made available to all those that struggle as I did. I will eternally be indebted to Keith and applaud the excellent standard of this unique service that he provides in Fife. It is something, special, unique and so appreciated but it is not enough. How can 1 man, with no consultant support continue to meet the needs of this growing population?

Thank you for taking the time to read this. I hope in taking the time to write it I can highlight, however inadequately what still needs to be done to allow more people the privilege of the exceptional standards of care I received from ME/CFS Nurse Specialist Keith.

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Responses

Response from Louise Ewing, Patient Relations Manager, NHS Fife

picture of Louise Ewing

Dear Claire H

Thank you for sharing with us a very personal description of what has clearly been a very difficult time for you. Your account is very powerful and demonstrates the immense value of having the right people in the right place to deliver care and support. From your description, Keith is obviously a knowledgable practitioner who is empathic in his approach. It is great to hear you speak so positively about him and I wil be delighted to share your feedback with him and the wider team. In terms of the comments you have made about the widere Service, I will seek a more direct response as a I am not able to address the point you make. I will get back to you in due course.

Kind Regards and thank you once again for sharing this with us.

Louise Ewing

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