Latest on APPG on ME inquiry into NHS services

Update: Jane Colby, The Young ME Sufferers Trust, advises that the Producer of the BBC “The Politics Show” has informed her that the broadcast has been rescheduled for May 10th.  Part of the APPG on ME meeting held on 1 April is expected to be featured in this broadcast.  I will post more details nearer the time.

Latest on APPG on ME inquiry into NHS services

It’s proving difficult obtaining information around the non appearance of the dedicated website for the APPG on ME inquiry into NHS services for people with ME and also on the availability of minutes for the meeting held on 1 April – a meeting largely given over to discussion of the inquiry.

This is the most recent information I have:

Inquiry website:

At the meeting on 1 April, Dr Des Turner, Chair of the APPG on ME, is reported as having said that the website for the Inquiry would be launched later that week.

The 3 April Press Release had stated:

“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”.

It was intended that the inquiry website would be one method via which comments around patient surveys and service provider questionnaires could be submitted to the inquiry panel.  According to the draft Timetable circulated at the meeting on 1 April, the deadline for “people with ME to submit questions to Dr Turner via website or in writing” was also given as 5 May – next Tuesday.

Four weeks down the line, schedules are already starting to slip and no website has been launched.  Some members of the ME community may have been waiting for the website to appear in order to submit their suggestions.

I contacted the Office of Dr Ian Gibson (Secretary to the APPG on ME and APPG on ME Inquiry Panel Member) on Tuesday morning with concerns about the non materialisation of the website but have received no response.

I have been told by Action for M.E. that the organisation does not have anything to do with the APPG Inquiry other than that it is related to ME and it was suggested I chase Dr Turner.

Dr Turner issued the following on Tuesday afternoon:

That the inquiry website is currently being built but that for the time being, the Terms of Reference have been placed temporarily on Dr Turner’s parliamentary website at:

That once the “APPG ME” website has been built, the information on the parliamentary website will be placed on the new website along with the minutes of the previous meeting.

That currently, the deadline for written evidence is the 9th of June.


Note that the draft Timeline circulated at the APPG on ME on 1 April has not been published on Dr Turner’s website nor on Action for M.E. or the MEA’s websites and is not freely available online. 

Minutes of previous meeting:

At the meeting of the APPG on 1 April, a stenographer was present recording the proceedings. This is not the usual practice at APPG meetings.

Dr Turner is reported as having said that the minutes of APPG meetings were getting too long and that a transcript of this meeting would be available soon.

As already reported, here, Tony Britton had stood down from secretariat duties. I haven’t been able to establish whether, on this occasion, Heather Walker was present and also taking minutes in addition to the stenographer’s presence.

Enquiries have been made of Action for M.E. and of the Office of Dr Gibson (Secretary to the APPG on ME) as to the reason for the stenographer’s presence and to what purpose this transcript was to be put, and when and where it would be made available.

No response has been received from Dr Gibson.

In response to a request for a clarification, Action for M.E. tells me that their understanding is that the APPG was recorded and that the company who made the recording will be using it to provide a full transcript which will be made available via the Action for M.E. and ME Association websites.

Due to pressure of work, Action for M.E. says that it has not chased the company for the transcript.

According to Action for M.E., the intention is that transcripts will be made available for future APPGs – “presumably with a faster turnaround time – but will be funded by Action for M.E. and the ME Association and so will be subject to the usual funding pressures”.


Since this is a departure from the usual proceedings, the costs of which appear to be being met by the APPG secretariat, it would have been appropriate for Dr Turner to have briefly explained the reason(s) behind these changes.

What still isn’t clear, is whether in future the secretariat will still be minute taking during these meetings (or who will be undertaking this task) or whether the minutes will be prepared from these transcripts by Action for M.E.’s Policy Manager, once this new post is taken up.

One of the tasks written into the Job Spec is:

“7. Provide the Secretariat for the All Party Parliamentary Group (APPG) at Westminster, liaising with the office of the Chair of the APPG and others to organise meetings, prepare minutes and agenda and ensure timely posting of information on our website, facilitate actioning of decisions eg. by drafting letters, maintain APPG files.”

If the minutes were going to be largely extracted from transcripts, unless someone is also minute taking during the course of the meeting, I can foresee problems around the identification of speakers, since those making contributions at meetings do not always announce their names before speaking. These are informal meetings, often up to two hours long, with contributions from the floor as well as from committee members, parliamentarians and invited speakers.

Also, it’s not clear whether the production of the minutes for the last meeting is dependent upon the receipt of an externally produced transcript or whether minutes were also being taken during that meeting by Heather Walker; that is, are we still waiting on Action for M.E. to write up the minutes and have them approved by the Chair, or are we waiting on the provision of a transcript before the minutes can be extracted from that?

This was an important meeting, devoted primarily to discussion around the APPG Inquiry. But four weeks down the line, we still have no Inquiry website, no minutes, no transcript and no official explanation for this change in procedure which is said to be being facilitated through patient organisation funding.

A statement of clarification from the ME Association would be welcomed.

Suzy Chapman

30 April 2009