From the ME Association’s news page: new website and online patient survey for people with ME/CFS in Norfolk and Suffolk.
The Norfolk and Suffolk ME/CFS Service Development Group
“The NHS is changing ME/CFS Services in Norfolk and Suffolk…
We need your views to clearly demonstrate to the NHS what patients want and don’t want from their ME/CFS Service.”
NHS service in Norfolk and Suffolk – patients launch new website
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 new 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.
Dawn Whittaker, one of the people behind the website, 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, and West Norfolk ME Support Group.
The website and online questionnaire is here: