Meeting with NHS Commissioners 15 December 2016

A meeting has been arranged for 15 December.  

A report has been written reviewing the options for developing the ME & CFS service within the finances available.  The recommendations of this report is to be discussed between the Patient / Carer Group and Commissioners.


The meeting was held between Suffolk & Gt Yarmouth & Waveney Commissioning and representatives from the Patient / Carer Group.

A final report has now been released following the feasibility study funded by 6 of the 7 CCG's who commission the service.  The feasibility study concluded that cost neutral service change could be delivered to address the significant and longstanding inequalities of care, especially relating to the severely affected.  

If implemented the service change would form the foundation for developing a biomedical service which is more in line with that delivered to people with other neurological conditions such as MS, and also with links to ME research projects.

The feasibility study is now being reviewed by the 7 CCG's and the Provider and a decision will be made in early January 2017.

The Patient / Carer Group fully endorse the recommendations of the final report. 

Further update 28 January 2017

Negotiations are ongoing between the seven CCG's and the Provider.  We will update you as soon as we know more.

Meeting with NHS Commissioners 20 September 2016


A meeting has been arranged for 20 September to discuss the outcome of the feasibility study exploring what can be achieved to develop the service within available finances.

This meeting went well.  We discussed models of care and what could realistically be achieved within the finances available.  A follow up meeting is planned for October/November 2016. 

Meeting with NHS Commissioners 13 July 2016


Patients/Carers met with NHS Suffolk Commissioning and a clinician who has expressed an interest in leading the Norfolk & Suffolk ME & CFS Service.  The Service is currently commissioned by Norfolk, Suffolk & Gt Yarmouth & Waveney CCG's and delivered by East Coast Community Health (ECCH).

A feasibility study will be carried out over the summer to explore what can be achieved in the light of the new service specification and within the finances available. This feasibility study has been funded by Suffolk and Norfolk CCG's.  The Patient/Carer Group very much appreciates that funding has been made available for this review to facilitate the move forward with service development. 

A meeting has been arranged for 20 September 2016 to discuss the outcome of the review.

Meeting with NHS Commissioners 14 April 2016

A meeting with NHS Commissioners (from Suffolk, Norfolk & Gt Yarmouth & Waveney) and the Provider (East Coast Community Health) is planned for 14 April 2016.  Update is below.

We will be discussing:

  • Minutes from the previous meeting
  • The Action Log
  • Patient Experience
  • Service Development and Review
  • AOB
Please contact us if you would like our group to take any of your concerns or comments regarding the Norfolk & Suffolk ME & CFS Service to the meeting on your behalf.  

(The meeting that was planned for the 3 March 2016 was postponed with the agreement of the Patient / Carer Group due to the ongoing work to recruit a Consultant to lead the service)

Minutes for the meeting will be uploaded when agreed.


Representatives from the Patient / Carer Group and NHS Suffolk Commissioning attended this meeting.  However, representatives from the Provider, and Gt Yarmouth & Waveney CCG did not attend.  The representative from the Norfolk CCG's was unfortunately unable to attend due to personal reasons.

As a result this was not a formally processed meeting.  However, the meeting lasted the usual length and the Patient / Carer group was given the opportunity to raise issues of concern.

Work is ongoing to secure a consultant to lead the service in Norfolk and Suffolk.