Joint HOSC 16/01/09

At this meeting NHS Gt Yarmouth & Waveney stated that:
- there had been provisional agreement to the draft service model pending agreed amendments/additions
- when the service model was agreed there would be a 3 month consultation
- no changes would be made to the current service until the new specification was agreed
- the changes to the service in 2005 did not amount to a 'substantial variation' to the service
- attention was to be focussed on moving to a service that fitted in with NICE Guidelines

Concern was raised re
- the lack of consensus between the NHS and Patient/Carer Representatives regarding the shape of the new ME/CFS Service
- the length of time it would take to put the new service into place and the level of care provided in the meantime
- inequality of care for people with ME/CFS

Joint Committee to revisit when the revised service specification drawn up.

For more details please click here

SDPG Meeting 09/01/09

Draft minutes for this final Service Development Project Group meeting were not issued by NHS Gt Yarmouth & Waveney until 10 March 2009. The minutes were not agreed by the Patient and Carer Representatives.

Patient and Carer Representatives were concerned that there had not been resolution to the areas of disagreement that arose out of the discussion of the Draft ME/CFS Service Model presented at the meeting on 9 January 2009. Specifically:
  • The inclusion of CBT/GET
  • The failure to specify a biomedical consultant
  • The failure to specify the Canadian Criteria as the diagnostic criteria
  • The failure to specify timescales for ongoing care reviews other than 'at least annually'
  • The failure to include specific provision for children and young people and the severely affected
On 13 January 2009 Patient and Carer Representatives therefore emailed all of the attendees of the 9th January SDPG meeting stating:

For the avoidance of doubt the PRG are writing to you to reiterate our stance regarding the essential components of the ME/CFS Service Model for people in Norfolk and Suffolk.