Following a national mapping exercise of existing CFS/ME services in 2002,
Action for ME was awarded a second allocation of Dept of Health Section 64 funding to Promote Patient Involvement – particularly in the development of the new CFS/ME services.

This resulted in the setting up of an advisory group early in 2004, membership included patient support group representatives from across England, a person who is severely affected (joining the meetings via a telephone link), some of the national ME charities and a representative from health service management with an involvement in the service planning for CFS/ME.

The primary aim of the group was to ensure that the project is firmly focussed on involving patients and carers in the development and maintenance of NHS services.
The objectives are to;

- support and provide a resource of expertise to the project manager
- communicate areas of patient concerns/issues to the Dept of Health CFS/ME Service Investment Steering Group (via the Project Manager)
- contribute ideas to enable positive patient involvement outcomes – ensuring continuation of patient involvement beyond the life of this project
- assist with the promotion and awareness of the needs of people affected by CFS/ME

ME North East asked to be included in this advisory group back in April 2004. It was felt at that time that the group had a sufficient membership and cross section of members.

Because of premises changing at AfME, the project leader left the organisation. A new project leader was appointed in December 2004 – Maria Shortis. Maria is charged with fulfilling the objectives of the group and completing a comprehensive report to be shared with The Department of Health by the end of March 2006.

Having met Maria at two national events in her early days in post, we arranged for her to visit us in Chester le Street. We were able to explain to her the situation regarding the establishment of services in our region, introduced her to Dr Nigel Speight, and arranged at short notice a meeting with a small number of patient representatives involved in setting up services.

It is clear Maria shares our passion and determination to ensure that patient participation and involvement is an integral part of the process. She was very impressed with our services framework for health professionals and also our CD documentary “all about ME”. She also brought an invitation for me to join the advisory group. I did attend my first meeting of the group on 23rd February in London. The meeting was constructive and informative and highlighted that the problems we have in our region are in no way exclusive. The introduction of this new service, is a first in the era of true patient participation under Department of Health Policy Guidance “Strengthening Accountability” Section 11 of the Social Care Act 2001. Maria tells us this is a paradigm shift (dictionary: “A fundamental change in approach or underlying assumptions”), and some health service managers are finding this change extremely challenging. She also feels that all patient representatives need to affirm their important function as part of the decision making team in the shaping of CFS/ME services.

The priority areas for the next year of this group are;
· To lead workshops bringing together patients and CNCC Coordinators to show
a) how shaping and implementing services are working well
b) to support those who are struggling
c) to discuss specific issues particularly those affecting young people and special needs of the severely affected
· To strengthen the Patient Involvement Network (an national group of patient representatives using e-mail to support one another
· To create and distribute a directory of services so we can see the big picture of service development
· To continue to represent patients ensuring Section 64 is used properly to reflect patient voices and make sure patient participation is not just tokenistic.

The next meeting of this group is scheduled for June/July 2005