On July 5th we wrote to the South Coast Fatigue referral service with a number of concerns and questions relating to implementation of the new NICE guideline on ME/CFS. A copy of this correspondence can be found here.
We have now received the following reply with answers to our questions.
We have responded as follows
Dear Fran Hill
Thank you for your reply and for being so frank about the reasons why South Coast Fatigue is unable to provide a multidisciplinary service that can carry out all the recommendations for the care and management of people with ME/CFS that are outlined in the new NICE guideline – especially those that relate to being able to confirm the diagnosis, provide medical treatment, and look after people with severe and very severe ME/CFS, and children and young people.
Of major concern to the MEA is the fact that people who are housebound with severe and very severe ME/CFS are having to be referred by their GP to Leeds (a distance by road of almost 300 miles) for assessment and management.
This is clearly unacceptable.
Incidentally, the situation regarding a young person with severe ME/CFS in Leeds was recently covered by The Times
From what you say it appears that the situation will not change unless the current contractual arrangement with Hampshire, Southampton and the Isle of Wight ICS, which was set up before publication of the new NICE guideline in October 2021, is reconsidered.
I note that Paul Hunter, who I understand is the key person responsible for commissioning services for people with ME/CFS in Hampshire, Southampton and the Isle of Wight, has been copied in to this correspondence.
I would therefore be grateful if he could also now address the concerns that have been raised and let me know what the Integrated Care Service intends to do to provide a specialist team and referral service for the South Coast that can carry out the comprehensive recommendations on patient care and management that are very clearly set out in the new NICE guideline on ME/CFS.
Kind regards
Dr Charles Shepherd
Copy
Maggie MacIsaac – CEO Hampshire and Isle of Wight Integrated Care Board
Dr Nina Muirhead – Co-Chair, DHSC Group on ME/CFS Medical Education and Training
Carol Monaghan MP – Chair, APPG on ME
Dr Peter Barry – Chair, NICE guideline committee on ME/CFS
Baroness Ilora Finlay – Co-Chair NICE guideline committee on ME/CFS
Anna Gregorowski – BACME
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.
