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.

ME/CFS Service Development Meeting 19/09/12

Summary of points raised
  • Matters arising
    • Group concerned that they had not had feedback concerning complaints that had been passed on to the manager of the service
    • Manager responded that some of the complaints were bound by confidentiality
    • LINk can play an important role in complaints and areas of concern can be placed on a 'watch list', this role will be taken on by Health watch
  • General Update
    • At the beginning of October responsibility for Commissioning in Norfolk will pass to the Commissioning Support Unit, there will also be commissioning support in Suffolk
    • The draft service spec has been taken to the CCG's and it is expected that they will agree to the specification sign off
    • There was recognition that a consultant led service was needed and that there is work to be done around providing education for GP's
  • Consultant
    • Work is still being done to try and secure a biomedical consultant
    • It is hoped that when the spec is signed off the provider will also help in the search for an appropriate consultant
  • Current service
    • There is an action plan in place to deal with complaints about the current service
    • It was agreed that a user group to link in with the provider would be a good step forward and the manager of the service agreed to set this up
  • Service Specification
    • Aim to agree by the end of the meeting
    • Amendments agreed by the group and amended version to be circulated by 21st Sept
    • Final version to be circulated week commencing 1st October
  • Plan B
    • Brief discussion of what could be done if a consultant could not be identified to lead the service

ME/CFS Service Development Meeting 18/07/12

Summary of points raised
  • General Update
    • Norfolk LINk has not prepared minutes of the last meeting
    • Agreed that all papers to be discussed to be circulated at least 7 days prior to the meeting and hardcopies to be sent out if requested
    • NHS Norfolk currently in the process of transferring staff and responsibilities to the Clinical Commissioning Groups (CCG's)
    • The first CCG board meeting has taken place and they will take on the work of the ME/CFS Group
    • A rep from the CCG's and HealthEast to be invited to the next meeting
    • The group wished to sign off the specification at the next meeting in September so the CCG's can take it forward
  • Service Specification
    • Detailed discussion regarding the service specification including discussion of written submissions from those unable to be present
    • Revised service specification to be circulated
    • Key performance indicators for the new service also discussed
  • Current Service
    • Both therapy and GP input increased (5 GPwSI)
    • Service in Lowestoft, Gt Yarmouth, Halesworth, Norwich and hoping also to move into Kings Lynn
    • Waiting time for diagnosis 18 weeks, GP referral 14 weeks
    • Concerns raised re staff training as some complaints had been recevied via the support groups from patients using the service.
    • If patients don't want to complain formally concerns can be passed on anonymously via support groups or this group and then to the manager of the service to address