Who we are
We are people with ME and CFS and carers of people with ME and CFS in Norfolk and Suffolk who are working with NHS Commissioners to improve service provision for people with ME and CFS in Norfolk and Suffolk.

We worked closely with NHS Norfolk to produce a comprehensive Needs Assessment, finalised in 2012, to identify the appropriate level of service provision for people with ME and CFS, and their carers in our area.  This is a lengthy but very important document as, along with the 2009 Patient Survey, it helped form the basis of the new Service Specification.  We are unable to publish the new Service Specification as it is a commercially sensitive document.

We were members of LINk (Local involvement network).  LINk worked with individuals and groups who wish to improve local health and social care services. Until the summer of 2012  Norfolk LINk supported us in our negotiations with the NHS and with our submissions to the Health Overview and Scrutiny Committees. Suffolk LINk then took over.  Local support groups continue to be involved in the service development process.

LINk's were disbanded in 2013 and were replaced by Healthwatch.  We have met with Norfolk Healthwatch and Suffolk Healthwatch to discuss the work we have been doing and the difficulties surrounding the implementation of the Needs Assessment and the new Service Specification.

A Service Specification has been agreed between Service Users and the NHS. Please go to the Local News page to view the position statement regarding this work received from the NHS on 28 March 2013.

The NHS has undergone a fundamental change in the way services are commissioned, please seen 'NHS Services' below for more information.  This has added a further layer of complication in implementing the changes that have been agreed for the new service.

Work continues with the NHS to develop the ME and CFS Service in Norfolk and Suffolk.  There have been considerable delays due to the coronavirus pandemic. 

We have remained in contact with NHS Commissioners in Suffolk. We anticipate that we will meet again with NHS Commissioners to discuss Service Development now the rewritten NICE guidelines have been published. NHS Commissioners in Suffolk are meeting next week to discuss the M.E. and CFS Service.

Updates are posted on the Local News page.

There are two strands of ongoing service development:
Commission of a new Consultant Led Service
This will be led by a biomedical consultant who will focus on the needs of those with severe/complex ME and CFS.  The consultant will also assist in shaping the new service as it develops.  A comprehensive Needs Assessment (to review health needs and priorities of people with ME and CFS in our area) has been undertaken as part of this process.  Issues reviewed include:
  • The provision of ongoing care
  • Domiciliary support
  • Guideline adoption
  • GP registers and proactive GP management
  • Consultant input, including onward referral and prescribing rights
  • The integration of education and service awareness with social care and carer's organisations

Improvements to the current service 
This is to be done by opening more clinics across Norfolk and Suffolk and providing GP education and training.

Go to our Local News page to see how we are progressing.

You can contact us via your local ME and CFS Support Group or by emailing us

The Current ME and CFS Service
ME and CFS are classified by the World Health Organisation (ICD10 G93.3) and the UK Department of Health as a neurological illness. 

There is agreement between Patient/Carer LINk members, the NHS and Norfolk LINk that the current 'Therapy Led' service is inadequate, although we appreciate that service staff are doing their best in difficult circumstances.  The level of service falls below that which is offered to people with other long term conditions, for example Multiple Sclerosis, and does not does not comply with all of the Quality Requirements in the National Service Framework for Long Term Neurological Conditions  

What we want
Patients and Carers have told us via our 2009 Patient Survey and local support groups that the Norfolk and Suffolk ME and CFS Service should:
  • be led by a biomedical consultant
  • use the Canadian Clinical Case Definition for diagnosis
  • care for people of all ages and all levels of severity and complexity
  • include physical testing and scans
  • provide ongoing care and regular reviews
  • offer advice on pacing, rest, activity management and nutrition
  • provide care closer to home
  • prescribe and monitor medications
  • carry out a full functional assessment taking into account light, sound, chemicals, aids and equipment
  • provide details of symptoms & functioning to assist people in dealing with educational authorities, employers, social services and benefit claims
  • provide support and information for carers
  • identify and ensure appropriate referrals for co-morbid conditions and symptom control
  • provide training for Healthcare Professionals, especially GP's

NHS Services
The provision of NHS services to patients is split into two ‘arms’:
COMMISSIONING – who decide what services should be provided
PROVIDER – who deliver the service to the patients

The Norfolk and Suffolk ME and CFS Service is provided by East Coast Community Healthcare

The NHS has been going through a period of transition.  Responsibility is for commissioning ME and CFS services has been passed from Suffolk NHS and Norfolk and Waveney NHS to Clinical Commissioning Groups (CCG) led by GP's.

The lead for service development is currently with the Suffolk CCG's.

The CCG's are as follows:
Norfolk and Waveney - 5 CCG's
Suffolk - Ipswich and East Suffolk  and West Suffolk

In April 2013 the Clinical Commissioning Groups took over full responsibility for commissioning health services and the Primary Care Trusts have ceased to exist.


This website has been set up by Patients and Carers to keep you in touch with the development of ME and CFS Services in Norfolk and Suffolk