- Needs Assessment
- Important to stress the service will provide a bio-medical consultant
- Some tweaks to the wording agreed
- When final version agreed Norfolk NHS said the NA can be disseminated
- Norfolk NHS now starting to identify personnel for the service specification
- LINk
- Important for LINk members to have an independent voice to help service users interface with the NHS
- Suffolk LINk to explore if they can provide more support to the group
- Most groups do not need LINk support, but there have been longstanding difficulties for ME/CFS Service Users in dealing with the NHS,
- There has been improvements since NHS Norfolk have taken the lead in service development
- Suffolk
- Anticipated that the satellite Stowmarket service will begin in April
- Other locations eg Ipswich, Felixstowe are being considered
- Consultant
- Initial discussions are being held by NHS Norfolk
- A consultant to take clinical leadership is needed
- Lengthy discussions around provision of a consultant, but what is needed is a biomedical consultant who is interested, can be released by his/her current trust
- Communication
- Norfolk NHS acknowledged that there had been substantial difficulties in the past in the way that the NHS had dealt with the ME/CFS group
- Norfolk LINk had recognised this in 2008 and offered support which greatly assisted service users in their dealings with the NHS
- During the summer of 2011 it became apparent that Norfolk LINk had decided to reduce/withdraw their support for the group
- Despite repeated requests for clarification Norfolk LINk did not do so, resulting in uncertainty and frustration
- AOB
- New group members welcomed
- Importance of support for benefit claims emphasised, Benefits and Work have a very useful website, and functioning rather than diagnosis which is important
- Importance of constancy of language in the service spec especially surrounding severity
ME/CFS Service Development Meeting 18/01/12
Summary of points raised