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.