Introduction

The allocation of funds (a total of £8.5m over two years) to develop designated ME/CFS services was announced in May 2003. It has been a long journey to secure the funds in our region and to plan and shape a service to suit the needs of people with ME. It has also been a steep learning curve to develop something new in the NHS from scratch and to work in partnership with patients and patient representatives in a truly collaborative way.

It has been complicated, at times frustrating, and has involved a diverse range of health professionals in the Acute & Mental Health Services and the Primary Care Trusts, in both clinical and management fields. We started cautiously and with a little scepticism. Is this new service going to deliver what we require? Will it be truly multi-disciplinary and not merely an opportunity to develop a psychiatric model of care without recognising this medical condition and the needs of patients with ME?

Patients and patient representatives (including ME North East) have played an important role in shaping the new services. All four teams have patient involvement and have invested a great deal of time and effort to ensure the needs of ME are properly addressed. We have all been involved at every stage of the process and we can now say at last WE ARE THERE!!! Whilst recognising Consultants have been seeing new patients for several months, we can now confirm that almost all of the Therapy Team Staff are in place and are starting to see patients.

This is just the beginning – there is much to do to mould and shape the service working with the teams to get the best possible support, to recognise what is working (or not) and to be confident we can build on these foundations to deliver the best treatment methods.

We recognise that the funds to kick start this new service are limited. This has resulted in careful fine-tuning the make the most of what is available. The next steps are to convince the fund holders of the future, not only continue to invest in the service, but to increase the funding to meet the needs of patients.

Monitoring and evaluation will be a regular and ongoing process. Patient feedback and response will be critical in measuring success and directing change where necessary. Here at ME North East we are excited and optimistic. Having met many of the therapists across the four teams, there is an air of enthusiasm and willingness to learn from the patients to help them help ME.