Compiled by Suzy Chapman | 23 January 2009
Next meeting of the APPG on ME
The last meeting of the All Party Parliamentary Group on ME took place on 8 October. The Minutes of that meeting can be read here
The next meeting had been scheduled for December, subject to availability of a speaker.
It had been proposed by Ms Diane Newman (The M.E. Society, formerly Peterborough ME and CFS Self-Help Group) that a representative of the Mental Health Alliance should be invited to attend the APPG to discuss how new Mental Health legislation will affect people with ME and how it is being implemented. It is understood that the secretariat had been waiting on Ms Newman to suggest potential speakers.
Since the issue of speakers from the area of Mental Health remained unresolved, the December meeting was postponed. The focus of the next meeting appears to have shifted away from new Mental Health legislation and an alternative speaker is now being sought.
I am advised that Jonathan Shaw MP, new Minister for Disabled People at the DWP, has been invited to attend a meeting proposed for February.
The Minister has been offered dates in early February, that is, prior to the NICE Judicial Review on 11th and 12th and the Parliamentary Half Term Recess (12th to 23rd February) but has also been offered alternative dates towards the end of the month.
So the date of the next meeting has still not been finalised – which is unfortunate as some regular attendees of APPG meetings will be planning to also attend one or both of the scheduled Court hearings for the NICE Judicial Review and some are going to need to book travel and escort arrangements for both these events.
As soon as a date had been firmed up and the agenda available, I will publish a copy here.
Tony Britton, Press and PR for the ME Association, has stepped down from his role as minute taker, a duty alternating between himself and Action for ME’s Heather Walker. It is not known whether the MEA intends to furnish a replacement for Mr Britton or whether the drawing up of agendas and the taking of minutes will be undertaken at future meetings only by a representative for Action for ME.
Proposed APPG inquiry into NHS service provision
With no meeting of the APPG scheduled until February (possible even later, depending on availability of a speaker) this means that there will have been no opportunity to discuss publicly the proposed APPG inquiry into NHS service provision for people with ME/CFS for well over four months.
We were given to understand that some form of patient questionnaire was to be issued before Christmas as part of a call for Written Submissions. This questionnaire has not materialised and no call for Written Submissions, deadlines for submissions or dates for Oral Hearings have been issued, either.
A revised and agreed Terms of Reference has not been published and no announcement has been made setting out the position on source(s) of funding for this project or whether an administrator for the project and admin resources have been secured. It had been mooted by Dr Des Turner, MP (Chair, APPG on ME), in October, that the inquiry might seek to obtain the necessary admin resources via Lord Darzi’s Office.
When the draft Terms of Reference were published in October, there were concerns that many of the processes and procedures through which this proposed inquiry would be undertaken remained undecided, that its aims and objectives remained undefined, and it was questioned whether the Terms of Reference, as they stood, could properly represent the voice of the ME community, in general, and the severely affected, in particular.
One view was that it would have been far better if some of the overall policies, practices and procedures had been thought through, worked out and incorporated into the terms of reference as a means of achieving the inquiry’s aims and objectives and then the matter put out to consultation with the ME community, with a reasonable timescale for people to respond within, and with a far better idea of what the inquiry plans to do and how it intends to carry out its plans.
It is not even known whether Dr Turner has been able to pull together a panel to undertake this inquiry.
So the progress of this project is left hanging.
Status of the ME Alliance
On 20 November 2008, I raised a number of questions in relation to the current status of the existing ME Alliance.
Sir Peter Spencer was identified as the representative who would be taking responsibility for responding to these queries on behalf of the Alliance. To date I have received no response from Sir Peter to this request for clarification.
Since it is now over nine weeks since this request was first made, and since a number of reminders have since been sent, I can only assume that the issue of the status of the existing ME Alliance is not something about which Action for ME is prepared to be transparent.
See previous posting Countess of Mar group Forward-ME website