'Two-year programme to project lead the implementation of new services 2004 - 2006'

Chair and Clinical Lead: Professor Tony Pinching of Peninsula Medical School
Directed by: Patricia Noons from the Department of Health

I have reported the progress on this programme and the involvement of ME North East in past editions of Focus. Two years on and the programme has come to an end, although I see it as more of an end of the beginning, and the beginning of the next phase, of health services for people with ME.

Having this national lead was to ensure that services were shaped to suit the needs of CFS/ME and that the funding was invested wisely to give best value for money. Developing a national framework and sharing expertise was made possible by the collaborative approach led firmly but fairly by Director Patricia Noons, seconded to this task by Chief Medical Officer for the Department of Health Sir Liam Donaldson.

Both as a patient representative and as the Clinical Network Coordinator for the North East and North Cumbria region I have been committed to my role in this project, and have spent much time and effort to ensure patient participation.

An end of programme conference was held in March 2006. Clinical champions, lead therapists, health commissioners and senior managers presented models of good practice and shared experiences and visions of future development. Of course it was an opportunity to wave the flag and sing the success achieved, but we all know it has been a real challenge to implement these new health services for CFS/ME, and we still have a long way to go. However the enthusiasm, determination and dedication of those present that helped make it happen served as a huge boost in the confidence of those who must take this initial work forward and maintain and build upon the commitment to future funding.

I was asked to give a presentation on the collaborative approach modelled by ME North East and the North East and North Cumbria Clinical Network Coordinating Centre (CNCC). I outlined the process we followed, the difficulties we faced along the way, the gremlins working overtime, real problems with recruitment and accommodation, the problems we now face with gaps in our region with the Tees PCT bid failing, but of course the benefits we can now gain from the four new clinical teams for CFS/ME in the North East.

I am convinced the patient voice has played an integral part in the shaping and implementation, and it will be the patient’s using the services that will determine the future. An indication of successful patient participation is of a letter received from Professor Tony Pinching, Chairman and Clinical lead for CFS/ME services (contact the office for a copy).

Jennifer Elliott