ME/CFS Service Development Meeting 12/10/11


Summary of points raised
  • Needs assessment
    • the numbers of patients that it is anticipated would use the service needs to be revised as it is lower than the current level of service use
    •  language needs to be more specific around the needs of the severely and very severely affected, prescribing, children and young people and training and improved information
  • Current Clinic
    • Further information requested from the PCT as information requested not received
    • Norfolk NHS is the lead contractor and will push forward with the service specification
    • Support given by the current service for benefits claims is valued
    • Co-production of the new service is vital
    • Funding for clinic in Stowmarket approved
  • LINk
    • Norfolk LINk can help with admin (meeting minutes and agenda) but do not have the resources to continue to support the group any further
    • Suffolk LINk to be contacted
    • Queries regarding the ME/CFS Service now to be sent to Norfolk NHS

ME/CFS Service Development Meeting 17/05/11

Negotiations are ongoing to secure a biomedical consultant. Norfolk and Norwich University Hospital have refused to provide clinical and administrative oversight for a ME/CFS Consultant:
“We do not provide and do not intend to provide a ME/CFS service”

NHS Norfolk will now explore options at other hospitals.
Work is ongoing to secure funding for Outreach Clinics in Suffolk. There is a lack of capacity within current staff and lack of trained staff.
There are now 5 locations from which the ME/CFS service is being delivered. The 18 week waiting target for appointments is not currently being met.
The Clinical Audit on the CFS/ME Change Questionnaire dated April 2011 was disseminated around the group and considered in conjunction with the ‘Quality Account’ for 2010/11. Some members of the group felt that these documents do not accurately reflect the current service.

Members of the group have been given the opportunity to comment on the draft needs assessment.
Liaison with social care, personal health plans and personal health budgets were also discussed.
For more details of the meeting see here

ME/CFS: Joint HOSC 13/05/11

ME/CFS Services were not discussed but an update was provided for the Committee

For minutes please click here
For update please click here

ME/CFS Service Development Meeting 08/03/11

Negotiations are ongoing to secure a biomedical consultant. In addition the Norfolk and Norwich University Hospital has been contacted to explore the possibility of the Hospital providing clinical and administrative oversight for a ME/CFS Consultant.

The draft Needs Assessment is almost complete.

NHS Norfolk are supportive of the work being done by Invest In ME to set up a UK Centre for Biomedical Research

NHS Suffolk have identified two locations where ME/CFS Outreach Clinics can be held. However NHS Gt Yamouth & Waveney do not have the staff to man the clinics. New staff will therefore need to be trained.

Patients commented that they did not have care plans or carer assessments. There is concern amongst people with ME/CFS and their carers that if social services are contacted there is a real risk of being misunderstood or misrepresented. In the past this has resulted in patients being sectioned under the Mental Health Act, parents being referred to the Family Courts or accused of M√ľnchhausen by Proxy.
To read about the meeting in more detail click here

ME/CFS: Suffolk Board Meeting 26/01/11

Page 8 of the minutes state:

A report setting out comparative costs for providing an ME/CFS clinic by Great Yarmouth and Waveney, SCH and the service currently commissioned was to be presented to the Executive Team within the next few weeks.

For the full minutes please click here