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Clinical Network Coordinating Centre (CNCC)
Funds were allocated earlier this year (£44,500 per year for two years).
With such a small amount of funding it is fairly clear that this “Centre” will not be a bricks and mortar clinic service, more of an administrative base.
It was agreed we needed a person to lead this and a job description for a Clinical Network Coordinator was agreed. This has now been advertised and interviews for the post are scheduled for Mid-October 2004. It is hoped to have someone in place as quickly as possible.
Dr Gavin Spickett the lead clinician for the CNCC is one of 13 such leads across England. He has been designated to devise an audit trail for all of England. With this in mind a meeting was held in August and a general outline was discussed. The option for patient held records, because of the complexity of the illness, and the variety of specialists involved in the multi-disciplinary approach was discussed.
General guidelines for the operation of the local multi-disciplinary teams was discussed, with emphasis on the needs for the teams to operate independently, balanced with the requirement for a common approach to enable information gathering.
The next meeting of the CNCC will be mid-October 2004.

Local Multi-Disciplinary Teams (LMDT’s)
Decisions were made at the end of July 2004 for the second round of applications for local teams.

This bid was not successful. This leaves a big gap within our region where services will not be available for local people with ME. A total population of 650,000 (which based on DoH prevalence rates equates to 2,600 people with ME.) Easington made a decision to bid in with Cleveland (as opposed to joining with County Durham & Darlington, or South of Tyne – we are given to understand that both made offers). We have been in touch with the Department of Health to discuss this. It would appear we are not the only region with gaps and we are told we have faired much better than some others. Little consolation. This funding is now allocated and there is no appeal – we must continue to lobby and pressure the Primary Care Trusts in Cleveland and Easington to deliver a service – that by submitting an application in the first place they acknowledge is required.

South of Tyne covers the area of Sunderland, South Tyneside and Gateshead. Whilst the first round bid was not successful, we are delighted that the second time around they won through. The team had to trim the bid and reduce the total amount – this they did and funds will come on stream in April 2005. The Sunderland & South Tyneside ME/CFS Support Group have worked very closely with the South of Tyne Steering Group, not least Professor Daymond, who will be leading the services. They played a large part in making the bid a winner and will continue to work with the implementation group. They have held one meeting since July and we await a response to our request to join this steering group to work with the Sunderland & South Tyneside Group, and to gain an overall picture of how services develop across the whole region.

Covers five Primary Care Trusts; Sedgefield, The Dales, Darlington, Durham & Chester le Street and Derwentside.
Funds for part year 2004/5 are now available (£58,000). Year two is for £116,000.
The Steering Group have met on several occasions, showing great enthusiasm and a will to get on with the job. A post of Clinical lead was agreed and was widely advertised; only one person applied and sadly withdrew before interview. We are looking at other models of good practice for ideas on how to move forward. This area does not enjoy the interest of lead clinicians willing to become involved in setting up and running services.
We do of course have Dr Nigel Speight, Consultant Paediatrician who is willing to lead on Children’s Services but we do need a lead person for adults.

Covers Newcastle, North Tyneside and Northumberland.
Funds for part year 2004/5 are now available £56,000. Year two is for £112,000.
This implementation group have met and discussed the outline of how services will operate. Both Dr Gavin Spickett (Immunology) and Dr Mike Snow (Infectious Diseases) are lead clinicians who will take referrals. Referral guidelines will need to be strict and GP’s will be asked to undertake a standard set of simple tests as part of the process.
It is expected that the “team” would be able to see around 100 patients per year. In order to meet even that small number it would not be able to offer domiciliary visits in the first year. It was agreed that a proportion of “clinic time” be set aside specifically for training purposes. Training would be for a range of health professionals, GP’s, Physiotherapists, Occupational therapists, psychologists etc.,

Funds were allocated in the second round and a Steering Group was held on the 6th September 2004.
North of Tyne LMDT were more than happy to welcome this. They have a responsibility to North Cumbria as part of their regional remit, and should the bid not have been successful they would have had to incorporate the needs of this area in their services. Dr Gavin Spickett travels to Cumbria to see patients in his Immunology Clinic and is aware of the numbers of people seeking treatment and support.
The Chair of the Steering Group is coming to Chester le Street next month to discuss how we can work together.

Progress is slow – but it is taking some shape. Once the Coordinator post at the CNCC is filled we will see further steps forwards.

The funds allocated from this “pump priming” budget are until March 2006 only. Funds will then be incorporated into the Primary Care Trust Budgets and will be “ring-fenced” – which means it has to be used for this purpose only. All good NHS Speak!!!