Department of Health £8.5m
For CFS/ME Services
NEWS UPDATE

Early in the New Year the Government announced the decisions we were all waiting for. Across the UK 28 local multi-disciplinary teams (LMDT’s), and 12 Central Network Co-ordinating Centres (CNCC’s) are to be developed.

One Co-ordinating Centre (led by Newcastle) and two Local Multi-Disciplinary Teams have been approved for us in the North East so far.

1) The Central Network Co-ordinating Centre
With only £44,500 per year allocated for this “virtual centre” we are not looking at a bricks and mortar clinic. The key post will be a Clinical
Co-ordinator who will;

Ø Map the services presently available and link the known “lead experts” as clinical champions to support patients
Ø Provide access to specialist assessment, diagnosis and advice on treating patients
Ø Develop education and training resources for health professionals to improve the knowledge and skills of staff
Ø Support clinical research into the causes and treatment of CFS/ME

The lead clinicians from the 12 centres ( Dr Gavin Spickett, Consultant Immunologist is our lead) are working with the Dept of Health, led by Professor Anthony Pinching. They will produce a national framework and guidance for services, whilst allowing a level of flexibility for the different models to suit localities. They will also ensure equity of services across the country. These funds are available from 1st April 2004. After this two-year period similar amounts will be incorporated into Primary Care Trust budgets and will be ring-fenced.

2) Local Multi-Disciplinary Teams
Two area bids have so far been successful to develop local teams. County Durham and Darlington have been allocated £59,000 for year one and £118,000 for year two. North
of Tyne (covering Newcastle, North Tyneside and Northumberland) will receive £57,500 and £155,000 for similar periods. This means services will be planned to start in October 2004 and will run until March 2006.

A bid for South of Tyne, led by Sunderland Primary Care Trust (covering Sunderland, South Tyneside and Gateshead), was not successful. This is very disappointing, not least to all those who worked so hard in putting the bid together Professor Daymond particularly, and also those dedicated members of Sunderland and South Tyneside ME Support Group. This bid was very similar to the others in our region and it does seem rather odd it didn’t gain approval.

The Cleveland and Easington Primary Care Trusts did not submit a bid in this first round, and they, together with Sunderland PCT for South of Tyne will be applying in April for 2005/6. We are led to believe both bids will be favourably received to ensure clinical services are available equally across the region, and avoiding the postcode lottery that presently exists.
A key part of the local teams will include;

Ø Providing specialist rehabilitation programmes for patients to help increase energy and activity levels.
Ø Developing a network of local domiciliary services (health, education and social services) for those more severely affected.
Ø Supporting GPs and other health professionals and in partnership with local self-help groups develop expert patients and self-management initiatives.

ME North East are continuing to work closely with the North of Tyne and County Durham and Darlington in developing local services, and we are working jointly with the Cleveland ME Support Group with the Cleveland and Easington PCT’s. The South of Tyne have the support of the Sunderland and South Tyneside ME Support Group, and are aware that they have our full support should they require any assistance.

We are working closely with Newcastle PCT who are leading on the bid for the Clinical Network Co-ordinating Centre and will consult with all local groups as plans take shape. The report we produced from the members survey has already proved very valuable as part of success of the applications, and we will continue to press the needs of the patient in the planning and development over the coming months.