Patient representatives campaigning for improvements to the NHS service for people with ME/CFS in Norfolk and Suffolk – which has been without a lead consultant since the retirement of Dr Terry Mitchell – launched a website today to enlist the support of ME/CFS sufferers, their families and carers.
And there's a prize draw to encourage patients with ME/CFS to take part in a confidential online patient survey. People are being asked to say what they want for an ME/CFS service in the two counties. The results will be passed on to NHS service commissioners.
One of the website organisers said: "The website has two functions – to publicise the patient survey and to keep people in Norfolk and Suffolk up to date with the development of ME/CFS services in the region."
When the NHS has written its Draft Service Model, this will be put up on the website and patients encouraged to send in their own comments.
The Norfolk and Suffolk ME/CFS Service Development Group was set up at a meeting chaired by the Great Yarmouth and Waveney Primary Care Trust in August 2007. There are patient representatives on it for each of the following: Norfolk, Suffolk, Great Yarmouth and Waveney, the severely affected, and children and young people.
The patient survey is supported by Beccles and District ME/CFS Support Group, Suffolk Youth and Parent Support Group, local members of the 25% ME Group, ME Drop In Support Group Great Yarmouth, West Norfolk ME Support Group, and ME Support – Norfolk. Their members will be helping to get paper versions of the survey to sufferers who don't have access to the internet.
Click HERE for the new website.