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.

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. 

Meeting with NHS Commissioners 3 December 2015


A meeting with NHS Commissioners and the Provider (ECCH) took place on 3 December 2015.

The minutes for the meeting will be posted when agreed.

We discussed the provision of a new clinical lead for the service, the 2015 Patient Survey undertaken by the service and the culture change needed to put patients and carers at the centre of service development and service delivery.

The next meeting is planned for 3 March 2016.

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. 

ME Association reporting on the advert for a new Consultant / Specialist to lead our service

The MEA say:
If they are able to pull it off, a remarkable collaboration between patients and the NHS will produce what is being hailed as a transformational new service for people with ME/CFS on the borders of Norfolk and Suffolk.

Read more here

Also being discussed on the MEA Facebook page and Twitter.

NHS Job Advert for Consultant / Specialist to lead our service

Today the NHS has published a job advert for a biomedical Consultant / Specialist to lead the Norfolk and Suffolk ME and CFS Service. 

The Patient / Carer Group had input into the wording for this advert.  This is a link to the Job Advert

Applications are invited for a Consultant/Specialist to Lead the Norfolk and Suffolk ME and CFS Specialist Service. We are looking for expressions of interest for the position of supporting Consultant/Specialist to the ME and CFS Service.

Any Consultant/Specialist expressing an interest must have a proven level of expertise and past clinical experience dealing with ME and CFS. This must include experience of dealing with the most severely affected.
Consultant disciplines which will be considered can be wide ranging; e.g. from Haematology, Rheumatology, Neurology, Immunology, Allergy, Endocrinology.

East Coast Community Healthcare CIC (ECCH) is an expanding social enterprise and employer in the East Anglian region, set up in 2010 under the GT Yarmouth & Waveney Divestment programme for Community Services.

We provide a range of NHS in-patient, community and social care services across part of the East Anglian region of the Norfolk and Suffolk, an area covered currently by 7 Clinical Commissioning Groups (CCG’s ).

We offer an excellent range of opportunities for career support and development and a good range of employee benefits, including the NHS Pension Scheme.
We are an organisation that values and invests in its staff and their development. We will provide scope for innovation, further service development and enhancement under the steer of a designated consultant responsible for the ME and CFS Service as we work through to a newly agreed Service Specification under the “Transformation” programme under the lead of Suffolk Commissioning Services.

We are currently embarking on a major “Transformation” programme for the ME and CFS Service in collaboration with both Norfolk and Suffolk commissioners and our regional Patient Group that aims to change the delivery of our existing multi-disciplinary ME and CFS Service. The transformation programme is delivering change from a 'therapy led' service to a multi-disciplinary consultant led service which takes a biomedical approach. This transformation is based on the recommendations of a comprehensive Needs Assessment carried out by NHS Norfolk in 2011.

The Consultant led Service will provide diagnosis support, ongoing care and domiciliary support to both children and adults, including the severely affected 25% of patients, across the whole of Norfolk and Suffolk. This is in line with demonstrated needs identified in a comprehensive Needs Assessment published in March 2012 by the Norfolk Public Health Consultant. 

The service will offer advice on a wide range of symptom control models, access to aids, equipment and other modes of support provided both in-house and via outward referral to specialist services. 

The expansion of our service provision aims to increase the level of specialist support, steer and management available for our patients and staff.

In addition to the above we, intend to expand our involvement within research and this post will be pivotal to that development. Clinicians with a proven track record in patient supported ME research are vital to the new service.

The Consultant Role and expertise.
  • Understand the national and local priorities and policies relevant to the ME and CFS Service. NICE guidance having been considered would adopt a local needs perspective and approach which may accord may accord with locally acceptable aspects of the NICE Guidance.
  • Work with CCG’s to deliver the service in line with the recent agreed Needs Assessment, and the agreed local strategic vision.
  • Oversee the assessment and development of the ME and CFS care pathway.
  • Make recommendations regarding the management of individual cases to the referring medical practitioners, particularly for those patients who are complex and /or severely affected.
  • Work as part of a multidisciplinary team to provide clinical leadership and supervision to the clinical team.
  • Take a service lead in relation to biomedical research by developing the appropriate links with external bodies / academia etc.
  • Participate in the teaching and accredited training of other healthcare professionals, including local GPS
  • Provide advice for related professionals such as Social Workers and educationalists working with patients with ME and CFS in the local CCG network.
We welcome informal enquiries about our ME/CFS service and the organisation. Please feel free to contact Nick Wright on 01502 718600 if you would like to discuss the above requirements. To make a formal expression of interest please press the Apply Now button below to complete our application form.