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 Münchhausen 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

ME/CFS Service Development Meeting 02/12/10

Cancelled due to bad weather

ME/CFS: Suffolk Internal Scrutiny 25/10/10

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ME/CFS Service Development Meeting 07/10/10

NHS Norfolk is continuing negotiations to secure a consultant for the ME/CFS Service with a view to creating a multi-disciplinary team. A clinic will be opening for a day a week in Norwich on 20 October. The next clinic location in Norfolk is planned for Kings Lynn.

There is recognition that there is a lot of work to be done educating and supporting GP's.

NHS Suffolk have identified 2 locations for clinics, one in Stowmarket and one in Ipswich. The problem is identifying appropriately trained healthcare professionals.

Social care was raised and the possibility of providing an integrated service. NHS agreed to explore whether social workers can attend meetings to provide input. The issue of Personal Health Plans was raised and NHS Norfolk to advise further at the next meeting.

The Needs Assessment is in its early stages. One of the difficulties will be in obtaining accurate epidemiological data.

Concerns again raised about whether or not the ME/CFS Service refers to Lightning Process practitioners. NHS Gt Yarmouth & Waveney to check and report back. Also concern raised regarding a pain consultant at West Suffolk Hospital whose name is mentioned on the LP website.

The aim is to have the new service up and running and bedded in before the advent of GP Commissioning in April 2013.

Further details here.