Following the announcement in May of £8.5m funding for clinical services for ME, we wasted no time in approaching health services to make sure we in the North East got a share of this money.

We immediately wrote to all 16 Primary Care Trusts within our Region, highlighting the benefits of joint working with ME North East to ensure funds are secured - requesting a meeting to discuss the best possible service that people with ME want, and offering our support in the planning process.

Three meetings followed: North Tees, Darlington and Newcastle. It immediately became clear that individual PCT’s would not be in a position to deliver a service in isolation. Interest is clearly there, need is acknowledged and a wish to see improvements in services presently available is recognised.

Following the meeting in Newcastle discussions at a commissioning level led to arrangements to bring together PCT’s from across the region. A meeting was held on Thursday 28th August with representatives from several PCT’s and health professionals led by Dr Ian Kitt Director of Health Commissioning at Newcastle PCT. I was welcomed and presented the thoughts and views of ME members. Much discussion took place and the consensus was there is very little provision to date, what is available is very patchy and not coordinated.

A wish to see improvements was unanimous and for a successful bid for the region PCT’s would have to work together.
Bidding for funds to deliver services raises many questions such as;

• How and where services would be provided.
• The make up of an effective service.
• The problems of raising expectations and managing the high number of patients.
• The costs involved beyond 2006 that would inevitably pass to the PCT’s.

Some PCT’s refer patients to The Leeds Fatigue Clinic and it was agreed that they would be included in discussions on provision in the North East.

The outcome of this first meeting was an agreement to submit “an expression of interest” to the Department of Health. Clarity would be sought on the best model for services and a better understanding of what is possible to deliver.

A second meeting is planned for September 19th 2003 when the group will consider the feasibility of preparing a firm bid for funds.

We are obviously delighted to see this first step - no decisions yet, but the overall feeling is that the only way is up, improving services for people with ME and a genuine wish from all present to work together to provide services.

We’ll be doing our best to ensure patient participation in this process via ourselves, local groups and all members. We will keep you up to date as things progress.