Clinical Network Coordinator Update

Update – June 2006

The new NHS teams are settling into their roles and increasing numbers of patients are being seen, in line with the expected uptake for the first years. I have been out and about meeting the teams which has been motivating and encouraging – things are really moving on with real services for real people who can now be seen by fantastic teams.

As for the clinical network’s work plan… The clinical network will be working on four key topics in the coming months.

• Firstly, supporting NHS services which means helping the new teams with whatever they need to do their jobs and talking to commissioners where a service has yet to evolve.

• Secondly, research and evaluation. We are looking at how to set up an audit database across the region: audit will help us reflect on activity and outcomes to date, and the shape the services of the future. We have also made some small research bursaries available: please contact Jennifer or me for details of how to apply.

• Thirdly, the clinical network is committed to working with patient groups to make sure your voice is heard. Jennifer has been nominated as acting chair of the clinical network steering group – a national first and a demonstration of that duty to work together.


• Finally, education and clinical skills training has been set up for NHS staff working in the CFS/ME teams, in primary care and beyond. We have some expert patient tutors coming along too, which is great news.

We have some big challenges ahead – a new NICE guideline is due out in 2007 (watch www.nice.nhs.uk); services for children are on the strategic horizon and we need to work out how we can effectively and appropriately support people in the region who are severely or long term affected by CFS/ME. We are also starting to plan a region-wide conference for later in the year – watch this space and let me have your comments and ideas for the event.

Send your thoughts, comments and feedback via Jennifer and the ME North East team. We’re listening.

Louise Wilson
CFS/ME clinical network coordinator