Clinical Network Update

April 2008

Northern Clinical Network Report for Focus

For the April edition of Focus the Northern Clinical network report is provided by Philip Burns – our Chairman and patient representative on the network. Louise the Network Co-ordinator, is on maternity leave.

The Northern Clinical Network goes from strength to strength despite the perturbations of NHS budgeting and boundary changes. The main event this year (so far) has been the regional conference on 12 March. I was unable to attend this event (due to commitments in London) but a full report is available. The Network has also recently published a booklet and leaflet for the guidance of patients and clinicians. These documents are based on the latest NHS guidance and provide advice and information for newly diagnosed patients and GPs. They will be distributed to all GP practices in the region and should help to ensure that no person with ME has to deal with a doctor who is ignorant of or unsympathetic towards their condition. If such attitudes are encountered then please contact ME North East or the Clinical Network.

The Network has also been trying to close the gaps in services that exist in the North East. Apart from another attempt to persuade the Teesside Health Authorities to accept their responsibilities for people with ME, the Network has also been running a very exciting project to develop and enhance clinical services for children and young people in the region. This work has been led by Dr Esther Crawley, Consultant Paediatrician who leads a service for Children and Young People in Bath and Bristol, and is Chair of the National Collaborative for CFS/ME.

ME North East has been closely involved in all of this activity: Jennifer has been seconded to provide the co-ordination role whilst Louise Wilson is on maternity leave; Sheila has been playing a key part in the project to establish clinical services for our young people. Our input shows the value the NHS is now prepared to place on the patient contribution to shaping clinical services. Of course, this is the best way for the NHS to become more patient-centered.

A further development of this theme is the appointment of patient representatives to the NHS National Collaborative for CFS/ME for the first time. This body is a “network of networks” and its main role is to identify and promote effective clinical treatment for people with ME. Please note that it is a forum for the exchange of good ideas rather than an executive body in charge of money. Therefore it can champion our cause but not issue instructions to health authorities (shame!). I have been selected as one of the four patient representatives for England. My first meeting was on 10 March and was basically a whirl of trying to keep pace with very capable people whilst learning a new role. Some of you may remember having this ability - I certainly regretted not having it any more! Nevertheless, this is a valuable opportunity to express the views of patients at a high level in the NHS; I believe we shall have an ever greater impact on the work of the Collaborative.

There are also several research projects underway with the sponsorship of the Northern Clinical Network. One of these will be carried out by ME North East. This is a pilot project to establish the need for and benefits of a support and advocacy service for severely affected adult patients. The aim will be to support such people to obtain the best possible care from statutory service providers (not just the NHS). This project will also provide a template for the longer term project that will hopefully funded by the Big Lottery.

We send our congratulations and best wishes to Louise and her family. Baby Fleur arrived on February 14th, a beautiful baby sister for James and Alistair.