Another local MP Interested in our Service Development

The MP for Gt Yarmouth, Brandon Lewis has recently agreed to contact the Gt Yarmouth & Waveney CCG (also known as Health East) to raise our concerns regarding Service Development.

Local MP Jo Churchill contacts MP's in Gt Yarmouth & Waveney regarding Service Development

The 7 CCG's which commission the Norfolk and Suffolk ME and CFS Service will be meeting shortly.  They will be discussing the way forward in response to the feasibility study for service change which was undertaken in the autumn of 2016.  This study concluded that cost neutral service development can be delivered which addresses long standing inequalities of care, especially for those severely affected by ME and CFS.  The post, 'Hanging in the Balance' explains in more detail.

In the meantime members of our group have been contacting our local MP's to ask for their support for this unprecedented opportunity to deliver the care that patients have repeatedly told us they want.

Most recently, the MP for Bury St Edmunds, Jo Churchill has kindly agreed to contact Brandon Lewis MP (Gt Yarmouth) and Peter Aldous MP (Waveney) on our behalf.  Both Brandon Lewis MP and Peter Aldous MP have also recently been alerted by constituents of our group to the risks of further delay in delivering on promises made by the NHS to local patients in 2010. It is the hope of our group that the combined interest by local MP's can make a difference.

The service development process is at a critical and time sensitive stage after many years of work both by Commissioners and our group.  If you live in Norfolk or Suffolk, and are well enough, a letter or email to your MP in support of service development would be very welcome.


Meeting of the Joint Health Overview and Scrutiny Committee (HOSC) 20 January 2017

You may recall that the service development process began in January 2010 following recommendations of the Joint HOSC, which the NHS accepted. 

Documentation from the Joint HOSC from 2009 can be found here
And from the NHS in 2009 and 2010 here and here.  Norfolk LINk made a submission to the CQC which also informed the process, the document can be found here 

Regular updates have been provided to the Joint HOSC by the NHS since 2010.  The most recent NHS briefing for the Joint HOSC can be found here.

At this meeting there were presentations from the Patient / Carer Group and Gt Yarmouth & Waveney CCG.  Audio recordings were taken at the time and I will upload the transcripts shortly.

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.