Today, Action for M.E. has published the APPG on ME press release launching the APPG on ME inquiry into NHS services for people with ME. When the Inquiry website has been launched, the URL will be posted here. Thereafter, readers should refer to the Inquiry website for information and progress.
APPG press release: NHS inquiry
03 April 2009
Dr Des Turner MP, Chair of the All Party Parliamentary Group (APPG) on M.E., has today issued a press release, launching an inquiry into NHS service provision for people with M.E./CFS in England.
Press release open here: NHS inquiry Press Release or
[Ed: The ME Association has posted a more extensive version of the press release which includes Notes for Editors, Background and a copy of the Terms of Reference. This version of the press release can be read on the ME Association’s news page here: http://www.meassociation.org.uk/content/view/840/161/]
The inquiry committee will consist of Dr Turner MP, Dr Ian Gibson MP, Tony Wright MP, Andrew Stunel MP, Peter Luff MP and the Countess of Marr.
Announcing the terms of reference, Dr Turner said:
Terms of Reference open here : Terms of Reference or
“The committee will consider written evidence from patients and professionals before inviting individuals and organisations to make oral presentations.
“Written evidence will include the findings of questionnaires, for patients and NHS service providers, which are currently being drawn up.
“People with M.E., carers and professionals are invited to submit suggestions for specific questions which should be asked in these surveys. Our deadline for receiving people’s ideas is 5 May 2009.
“The cut-off point for the submission of written evidence will be 30 June 2009. Oral hearings are likely to take place in the middle of July.”
A website is being set up for the inquiry, which will include the timetable of activities.
Until the website is activated, the contact address for the inquiry is: APPG inquiry M.E. services, c/o Dr Des Turner MP, 179 Preston Road, Brighton BN1 6AG.
The launch was announced at a meeting of the APPG in Committee Room 20, House of Commons, on Wednesday, attended by Andrew Stunell MP, Peter Luff MP, Ceri Finnigan representing Edward Davey MP, Dr Derek Pheby of the National ME Research Observatory, Kirstie Haywood, Royal College of Nursing Research Institute at Warwick University, representatives of the Secretariat – Action for ME and the ME Association – and a number of other groups including the 25% Group, MERUK, RiME, K&SAME and Warwickshire ME Network, individuals with M.E. and carers.
Other items on the APPG agenda included a statement from the West Midlands M.E. Groups consortium,
WMMEG statement open here: WMMEG statement 2009 or
entitled M.E./CFS – Education and training in the NHS, which expressed concerns about the balance of speakers at the forthcoming NHS CCRNC conference and an article from Pulse which outlined Care Quality Commission proposals to make NICE recommendations (for all conditions) mandatory.
Pulse article: http://www.pulsetoday.co.uk/story.asp?storycode=4121395
A speaker from the Care Quality Commission will be invited to clarify the implications of its proposals at the next meeting of the APPG, date provisionally set for 24 June 2009 (to be confirmed).
Care Quality Commission site: http://www.cqc.org.uk/
TV presenter Max Cotton and a BBC camera crew from the Politics Show were also present to film and interview 24-year-old Samantha Brown, who has had her benefits withdrawn since she became a student, her constituency MP Des Turner and Jane Colby, Young ME Sufferers Trust.
The Politics Show site: http://news.bbc.co.uk/1/hi/programmes/politics_show/default.stm