ME/CFS Service Development Meeting 02/12/10

Cancelled due to bad weather

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.

ME/CFS Service Development Meeting 23/09/10

Concerns were raised by Patient/Carer Representatives regarding the description of ME/CFS on the Gt Yarmouth & Waveney 'Living Life to the Full' website. It was agreed that the concerns would be taken to the Long Term Condition Programme Board on 29 September 2010.

NHS Norfolk are continuing to explore options regarding the provision of a consultant. A response is awaited from the consultant and a meeting arranged with a second consultant. The possibility of contacting clinicians from Breakspear Hospital was also raised.

Amendments to the guidelines for GP's relating to referral to the ME/CFS Service were agreed. These amendments are to be taken back to the clinical team.

Concerns raised about a local website selling the Lightning Process suggesting that referrals were received from the Norfolk and Suffolk ME/CFS Service. NHS Gt Yarmouth & Waveney agreed to clarify whether or not referrals had actually been made.

Further details here

ME/CFS: Joint HOSC 27/07/10

NHS Norfolk confirmed that they are supportive of the Patients and Carers requirements but was having difficulty in securing an appropriate consultant. Development of the new service will fully involve Patients, Carers and LINks.

The Committee will not consider the ME/CFS Service again until the NHS Commissioners are in a position to bring forward a proposal for substantial change.

In the meantime
two Committee members agreed to attend the meetings between Patients/Carers, NHS and LINks to provide a critical challenge to the work going forward.

For more details please click here
LINks submission to HOSC here

ME/CFS: Service Development Meeting 01/07/10

Work is ongoing to secure a biomedical consultant and for further clinic locations in Norfolk. There are problems with identifying appropriately trained healthcare professionals to work in Suffolk. The challenge of training GP's is recognised. However it is hoped that when a consultant is in place the profile of the service will be raised.

The current service is not based on what patients have told the NHS they want, and does not provide the service model which has been commissioned by the 3 PCT's. There is a high level of unmet need especially with regard to ongoing care and acute care. NHS Gt Yarmouth & Waveney agreed that the current service can be 'tweaked' while waiting for the new service to be put in place.

Concern was expressed that the Equality and Diversity Statement signed in November 2009 by NHS Gt Yarmouth & Waveney Provider Arm. In answer to the question 'Is there a known public concern with this service?' The reply was 'no'.

To read more about the meeting click here

ME/CFS: Suffolk Internal Scrutiny & Board Meetings May 2010

Internal Scrutiny Meeting 21 May 2010 - please click here
Board Meeting 26 May 2010 - please click here

ME/CFS Service Development Meeting 29/04/10

NHS Norfolk have held meetings with a ME/CFS Consultant to explore the possibility of providing an outreach service. The Consultant has been asked to provide a detailed specification of the service that could be provided and the facilities he would require.

GP's to be contacted for expressions of interest to expand the ME/CFS Service.

Work is under-way to identify further locations for ME/CFS clinics in Norfolk and Suffolk.

The existing service description to be disseminated around the group and reviewed in the light of comments from users and carers.

Further details here

ME/CFS: Joint HOSC 10/03/10

Work is ongoing to secure a consultant, to open clinics in towns in Norfolk and Suffolk and to address GP education. A formal needs assessment is to begin in September. The Committee expressed concern that the new service is still not in place. To be reviewed again at the July meeting.

For more details click here

ME/CFS Service Development Meeting 19/01/10

On 19 January 2010 NHS Norfolk, NHS Suffolk and NHS Gt Yarmouth & Waveney issued a joint statement providing a time-scale for implementation of the promises made on 11 November 2009.
Phase 1

To re-establish a service comparable to that prior to the changes made in 2004/5 including

  • Provision of a consultant acceptable to the Patient/Carer Representatives (Q1 to Q2 2010)
  • Expansion of the current service delivered by Gt Yarmouth & Waveney Provider Arm to more locations (Q2 2010)
  • Education of GP’s once consultant is in place and additional locations finalised (Q2 2010)

Phase 2

To begin with a full Needs Assessment and then develop a model of care with patients and carers fully involved as strategic partners. (Q3/4 2010) Specific issues to be addressed include:

  • Ongoing care
  • Domiciliary support
  • Guideline adoption
  • GP education
  • Consultant input including onward referral and prescribing rights
  • Social care issues

‘It is the intention of all three PCT’s that the development of services for ME/CFS will be a true partnership venture with patient and carers working with the PCT’s to create a world class service’