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There are 16 Primary Care Trusts in the North East Region and all were represented at a meeting in September when it was agreed to submit “an expression of interest” to the Department of Health for part of the £8.5m funds allocated for clinical services for CFS/ME for 2004/2005.

A total of 92 “expressions of interest” were received, which gives some indication of the very high level of need across the country (as if we didn't already know).

Newcastle Primary Care Trust (PCT) are the lead for this region and were subsequently invited to tender for two different levels of service, within a prescribed cost.

Firstly they may tender for a Clinical Network Coordinating Centre (CNCC) for a sum of £60,000. Closing dates for the tender were set for mid November giving very little time for discussion. However it was agreed to submit a bid within the time limit rather than miss on year one funding for 2004/5. This Networking Centre would incorporate specialist advice, develop training needs for clinicians, ensure parity and equality across the region, collecting data and determine services for children. Newcastle PCT will lead this service.

This tender has now been submitted and ME North East have written a letter of support of this application. A decision is
expected by early 2004 and if successful the centre will be on line by April. We will be closely involved in the planning and development of this service and will consult widely with the local support group network and members.

The second level focuses on local needs. Sums of up to £100,000 may be secured for Local Multi Disciplinary Teams (LMDT’S) and PCT’s have been invited to tender in their localities.

Discussion amongst the 16 PCT’s came out in favour of 4 teams (with perhaps one more covering Cumbria should their independent bid not be successful). Two teams in the North of the region (North Tyne and South Tyne), two more teams for the South - one in Durham and one in Cleveland.

The Department of Health stated teams should cover ideally 5-10 PCT’s. It was generally agreed because of the geography of our region this was unreasonable, accessibility is a priority for patients.

Sunderland PCT have prepared an outline bid for services in South Tyneside and are willing to submit this by the November deadline in order to implement services in 2004. Newcastle PCT also wished to re-visit a model they had prepared earlier, it was agreed both would be finalised and sent in.
County Durham and Darlington (covering 5 PCT’s) also made a late decision to complete a tender application and this too was incorporated and submitted in November.

The Cleveland PCT’s have not made any moves so far. The 4 trusts have been represented at meetings by North Tees, but to date we have been unable to speak with anyone who would be involved in preparing bids.

That is not to say it’s too late. It was suggested that in order to plan services to meet the needs of the patients and the area covered decisions to wait until April 2004 to submit tender was an option. One more important factor for each team bid
is that it requires the agreement of all Primary Care Trusts within the locality to sign up to continuing funding of services beyond the 2 years pump priming of £8.5m.

We will continue to work closely with all parties involved in planning and delivery of services for ME, at a local and regional level, and we will keep you informed of progress.

Celebrations are on hold until we know the outcome of the bids. It isn't a huge amount of money - but it’s a start - a first small step to secure services but a huge step in recognition, understanding and fair treatment for all with ME.

Representing the voice for ME in the North East
Getting your views

As soon as we were informed that the “expression of interest” for clinical services for ME/CFS had been acknowledged and Primary Care Trusts in the North East region, led by Newcastle, were being given approval to bid for funds, we moved quickly to engage all our members to express their views about the kind of services that should be provided.

Approximately 850 questionnaires were circulated to all members with ME. We received 360 replies (42%) a fantastic response and we thank everyone who took the time to participate. We would like to express our gratitude to all of you who included thanks and support for the work we are doing on your behalf, it is much appreciated. We kept the questions brief and found many of the additional comments extremely helpful in the evaluation process.

We also held a public meeting in Bullion Hall on Saturday 1st November and 20 people managed to attend. A very interesting meeting with lots of comments and views gathered.

A full report on this consultation process was produced and submitted as part of the bid to the Department of Health and we show some of the findings for your information below.