Response to the NICE draft scoping document on behalf of LocalME

NICE are currently reviewing the guidelines for ME and CFS.  LocalME have prepared a response to NICE's draft scoping document which you can find here

The response was collated and written by Barbara Robinson, sincere thanks to her for all her hard work on this document in a short time frame.

It is a long document, but is worth reading, especially the general comments at the end which deliver perspective on service change from the experience of the work that has been going on in Norfolk and Suffolk for many years especially:

  • NICE should not make things worse than they already are
  • The needs children and young people are of considerable concern with 'pop up clinics' with no specialist oversight, parents accused of FII and the failure of health and social services to deliver appropriate, co-ordinated care
  • The needs of the severely affected have also been neglected
  • The lack of accountability for services for people with ME & CFS
  • The importance of the patient experience 
  • How in Norfolk and Suffolk the aims of partnership working have hit up against the realities of the fragmentation of service provision, lack of transparency of decision making and of accountability
If you would like to read further on the topic information from the ME Association can be found here

The next stage is the appointment of members to the guideline committee.  The committee will meet in November.  The aim is for new draft ME and CFS guidelines to be published in April 2020.

7 August 2018