Professor Anthony Pinching launched the report on the CFS/ME investment programme at the Royal Society of Medicine on Friday 15th September. We produce the conclusion as presented for your information.

The programme was initiated to address the major gaps in service provision across England that were highlighted in the Report of the Independent Working Party to the Chief Medical Officer (2002), and acknowledged in the Government’s response to it. This objective has been largely achieved, although there remains much unmet need. There remains some of the legacy of chronic disability and alienation from the previous under-provision, but greater trust and more positive dialogue has been achieved.

We have seen the development of many creative and thoughtful multi-professional service models through this innovative programme, with its firm focus on securing its declared outcomes. Yet these services have a strong consistency of content and style, with an affirmative approach to support and rehabilitation. The common specialist education and training courses have helped this, as well as building formal and informal networks between clinicians and different levels of experience and types of expertise. The wide range of clinical backgrounds amongst Champions and team clinicians has helped to cross-fertilise a range of treatment approaches from other disease areas.

The engagement and advice of patient groups, locally and nationally, has informed and continues to shape these developments, representing many of the aims of the Patient and Public initiative. Commissioner engagement and involvement has been more complex during a period of rapid change in the NHS, but many have been creative in their support to the emergence of these new and much needed services.

The philosophy of ennoblement has been espoused, to help patients to regain control of their health and their lives, and to maximise opportunities for improvement and recovery. Through the increased awareness being fostered in primary care, we are starting to see earlier referral and early appropriate guidance to patients with emerging CFS/ME; this should minimise chronicity and may achieve secondary prevention.

There is now a national specialist multi-professional clinical resource that will be able to underpin the future care of patients with CFS/ME. This will not only provide direct care for the more complex patients, but also will enable skills transfer to primary care clinicians for the identification and management of most patients, and the achievement of significant elements of self-care.

The new services will increasingly link with pre-existing services to ensure commonality of style and purpose. Together we will be able to foster further clinical and basic research to improve the insights into this devastating illness and the treatments available for it.
There is still much to do, but with the continuation of these vital services, their extension to fill the few remaining gaps, and their expansion to meet the evident need, this is within sight. The NHS is now for the first time properly equipped to deal with this major cause of illness, distress and disability.

The achievements and models developed within the CFS/ME Programme have clear relevance and applicability to many other long-term conditions that cause comparable disability and distress. We would encourage others to explore how our experience could be usefully translated or transposed to their care areas.
Colleagues have noted that we have developed some very contemporary approaches to clinical care, whilst espousing the founding values of NHS. If so, these are achievements of which the very many people who have contributed to the Programme can be justly proud. This makes optimistic reading for the future delivery and expansion of CFS/ME Clinical Service Development. However there remains a degree of caution as to continued investment by Primary Care Trusts making local decisions on priority services.

A letter from Professor Pinching to all Clinical Champions and local Multi Disciplinary Teams dated 25/08/06 states his understanding of the financial arrangements for the continuation of the services. “I have been assured that the full allocation for the continuation of all CFS/ME services that have been set up under this programme is included in the Central Programme NHS Bundle”

This assurance sounds comforting - but does not give the absolute commitment for future funding of services we would all wish to see.