Back in August we wrote to the Chief Executive of the Shropshire, Telford and Wrekin NHS Trust to raise a number of concerns relating to the care and support for people with ME/CFS and the lack of implementation of recommendations in the new NICE guideline
Three months later we have now received a reply from the Chief Executive.
Unfortunately, it is clear from the ‘private and confidential’ reply that progress is slow and there is still plenty of work to do if people in Shropshire are going to have a diagnostic and management referral service that meets all the requirements and recommendations on diagnosis and management in the new NICE guideline on ME/CFS.
In particular, we remain very concerned about how this service is going to provide proper care and support for people with severe and very severe ME/CFS. I will be raising this again when I respond to the Chief Executive.
I will also be asking why all the information on the progress that is being made should be not made available to the public
The MEA will continue to monitor service developments in Shropshire, Telford and Wrekin.
However, it is equally important for people with ME/CFS at a local level to also monitor what is happening and to maintain the pressure for a referral service that is consistent with the new NICE guideline and one that provides a high standard of care for everyone with ME/CFS.
People should also contact the Shropshire, Telford and Wrekin Patient Services Team if they want to make their views known on what sort of ME/CFS referral service they want, or if they are having problems with the existing service.
The STW Patient Services Team can be contacted by phone (01952 580407) or by email (stw.patientservices@nhs.net).
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.
