Inquiry into NHS service provision for people with ME launched at APPG on ME

Inquiry into NHS service provision for people with ME

A draft Terms of Reference for a proposed inquiry into NHS service provision for people with ME had been presented at the October 08 meeting of the APPG on ME.

This is to be an unofficial inquiry led by a panel of parliamentarians; the full panel has yet to be announced.  Other than a number of caucus meetings held between Dr Des Turner MP, APPG on ME Chair, and representatives from Action for M.E. and the ME Association, the APPG on ME committee has entered into no prior consultation with the ME community over the remit, scope, aims and objectives of this proposed inquiry and no proper consultation has taken place over the inquiry’s Terms of Reference which were presented, last October, as more or less a done deal.

The ME community has not been consulted over whether it considers that an unofficial inquiry into NHS service provision carried out under the auspices of the APPG on ME would be welcomed and if so, what the remit of an inquiry should be and how it should be carried out.

At the meeting of the APPG held, yesterday, Wednesday 1 April, a copy of a Terms of Reference was circulated, together with a Draft Timetable for the inquiry. According to the draft Timetable, a Press Release had been planned to be issued yesterday.  But if any Press Release has been isssued, no copy is available from either the website of Action for M.E. or the ME Association – only the notice, below.  It was announced at the meeting that an inquiry website was anticipated to be launched within the next few days.  In February, it was intimated to me that no funding or adequate resources had at that point been identified to enable an inquiry to proceed.

Since the APPG on ME has sought to consult only with representatives of Action for ME and the ME Association over the inquiry’s Terms of Reference I do not intend to cover the progress of any inquiry on ME agenda site.

If and when a Press Release is issued, I will post a copy here.  I will also post the URL of any dedicated website for the inquiry, a copy of the Terms of Reference and the draft Timetable as these become available.

For all other information around the inquiry, its processes and proceedings and any report that results out of it, readers of this site will need to refer to the inquiry website for I shall not be carrying further information, here.

From the ME Association

02 April 2009

An inquiry into NHS service provision for people with ME/CFS was launched by Dr Des Turner MP at the All Party Parliamentary Group on ME yesterday (April 1)

The inquiry will evaluate the extent to which the NHSS is providing care for people with the illness – particularly in primary and secondary care, and through specialist teams.

The inquiry will take written evidence from patients and professionals before inviting individuals and organisations to make oral presentations.

Written evidence will include the findings of questionnaires, to be sent to patients and NHS service providers.

Fuller details about the remit of the inquiry, its membership, timetable and ways to communicate with it are expected to be announced very shortly.

In attendance yesterday were MPs Dr Des Turner, Andrew Stunell and Peter Luff together with the secretariat provided by the ME Association and Action for ME, and about a dozen individual people with ME and members of the public.

Part of the meeting was filmed by a crew from the BBC’s “The Politics Show” who are following a 24-year-old student with ME, Samantha Brown. Both Ms Brown and reporter Max Cotton were at the meeting. It is expected that Max Cotton’s report will be screened this Sunday, or next, on BBC1. The programme begins at 12 noon.

A fuller report of the meeting of yesterday’s APPG will appear in the May issue of the ME Association’s quarterly magazine, ME Essential.