Meeting with NHS Commissioners 24 February 2015

During the meeting we discussed the transition from the old service specification to the new specification.  The new service specification has been agreed with service users and is based on the NHS Norfolk Needs Assessment (link on the Homepage) also agreed with service users,

As part of the process the NHS are to place an advertisement for a consultant to lead the new service.

Minutes of this meeting will be posted as soon as they are available.

The new specification is committed to the reinstatement of an acceptable patient endorsed Consultant led service as recommended repeatedly by Norfolk and Suffolk Joint Scrutiny since 2009.

Failure to do so could lead to patient harm and a failure of duty of care.  If an appropriate service is not implemented service users will consider raising complaints with Clinical Commissioning Groups locally via Healthwatch and/or complaints to the Care Quality Commission under their new enhanced powers as of April 2015 which hold local authority (and Local Authority Public Health Services) to account.




Please contact us if you have any queries.

Meeting with NHS Commissioners 23 October 2014

A meeting between NHS Commissioners and the patient/carer group was held on 23 October 2014 to discuss implementation of the new Service Specification.  Final minutes for this meeting have now been uploaded. Please click here

Please contact us if you have any queries.

Next Meeting with NHS Commissioners - October 2014

It has been well over a year since the last meeting.  Our group has made a number of requests for a meeting and this has now been arranged for next month.

An update will be posted following the meeting in October.


Service Specification - Position Statement from the NHS

In November 2012 the Service Specification for the new Norfolk and Suffolk ME and CFS Service was agreed between service users and the NHS.

The NHS has now agreed to release a position statement with regard to this work.
A copy of the NHS position statement can be found here.

A copy of the full Needs Assessment carried out by NHS Norfolk and on which the Service Specification is based can be found here.

The next meeting between Service Users and the NHS is planned for early June 2013.

Complaint regarding the current ME/CFS Service


On 11 November 2009 the NHS accepted that a significant change had been made the the ME/CFS Service in 2005 and that the needs of all patients, especially the severely affected, have not been met.  The NHS committed to opening clinics in more locations, commissioning a consultant to meet the needs of the severely affected/complex patients and providing more information for GP's.

On 19 January 2010 the NHS committed to re-establishing a service comparable to that delivered prior to the changes made in 2005.  These changes had been made without consultation with service users. The service prior to 2005 did not take a biopsychosocial approach and did not deliver or recommend CBT or GET.  In addition the service was consultant led, not therapy led.

In 2011 a Freedom of Information (FOI) request was made to assess the level of service provision for people with ME and CFS in the East of England.  To see the response to the FOI request please click here. When you have clicked on the link, scroll down to the bottom document which gives details of services in our region.  The following information relates to the Norfolk and Suffolk ME/CFS Service:
Biopsychosocial approach: Yes
Therapy Led: Yes
What management, treatment, therapy options are offered: Advice regarding CBT - but not available direct from service, GET, Pacing
What future plans are there: Further outreach into Suffolk - Stowmarket or Ipswich potentially.  NHS Norfolk developing consultant based provision

Our group and local support groups have received feedback from service users in both Norfolk and Suffolk which indicates that the NHS has not fulfilled its commitments made in January 2010.

Attempts were made to address the concerns with the provider informally.  As the provider did not respond to our concerns a formal complaint was raised in January 2013.  Suffolk LINk made the complaint on our behalf.

We are awaiting a response from the provider.

ME/CFS: Health Overview and Scrutiny Meeting 29/01/13

Update from the NHS regarding progress here

Minutes of the meeting here

ME/CFS: Health Overview and Scrutiny Meeting 16/10/12

Update given regarding the development of ME/CFS Services.

Minutes of the meeting are here.