Clinical Network Update

August 2008

Recently the Northern CFS/ME Clinical Network (the Network) completed its annual strategic review of progress to date, and possible future developments. All of the local care teams reported being fully staffed, including important administrative support. On average each team sees 10 patients per month in a mixture of group and one-to-one therapy.

This is good news, but it has taken 4 years to secure this partial service. There is still no dedicated service for Teesside, despite efforts to encourage the local Primary Care Trusts to fund a local team. Services for children and young people are sparse, and for the severely affected, teams are struggling to resource this patient group. Despite the gaps, the clinical services appear to have been successful – our own survey shows that the majority of patients have experienced a positive outcome.

This year one of the Network’s most exciting projects has been a review of specialist services for children and young people in the Northern Region, led by Dr Esther Crawley (Clinical Lead Bath Paediatric Services, and Chair of the NHS CS/ME Collaborative). It is hoped that this study will generate a business case to secure funds to develop specialist services for children and young people in the Northern Region.

In the meantime there have already been major benefits arising from this exercise. Dr Crawley has delivered a number of training sessions across the region including Paediatricians, Consultants, GP’s and therapists in Physiotherapy, Occupational Therapy and Psychology. Education and social services have also attended the training sessions and are actively wanting to work in collaboration to support young people with ME. Over 250 people have attended this series of events.

Dr Crawley has also held joint clinics with local Paediatricians and has developed a rehabilitation programme, focussing on the needs of each individual person, and this is already showing signs of improvement in a number of cases. One more outcome from this exercise is the 50% increase in the number of referrals to ME North East of young people with ME from a range of professionals across the region.

The Network is seeking to address the lack of provision for severely affected patients. ME North East has been commissioned to perform a pilot project to establish the need for and benefits of a support and advocacy service for severely affected adult patients. For ME North East the overall aim will be to support people to obtain the best possible care from all statutory service providers.

Another principal issue for the Network is that the NHS standard clinical reporting tool (Minimum Data Set or MDS) does not produce measurable outcomes on the treatment of people with ME. Without this evidence any business case for clinical services for ME is weakened.
Patient surveys conducted by local therapy teams showed the success of treatment and our own ME North East survey supports this conclusion. Local teams have agreed to work together to identify the best ways to measure the effectiveness of clinical services which will be used across the region, which will affect the potential to increase funding for CFS/ME Teams to include all people with ME.

Since 2004 ME North East has worked closely with the Northern Clinical Network to secure and develop NHS services for us in the Northern Region. Despite these successes, further developments are still required to achieve comprehensive provision for all people with ME.

ME North East will continue to campaign for such improvements.