APPG on ME: Minutes, Transcript, Legacy Paper, Updates to Welfare Reform Bill

Shortlink: http://wp.me/p5foE-2r9

If you are planning to attend the meeting on Wednesday 2 December a bunch of friendly people will be meeting up before the meeting for coffee and a chat.

2pm, Jubilee Cafe, just off Westminster Hall

A number of APPG on ME documents have been circulated, today.

 

Minutes of the APPG on ME annual general meeting, held on 21 October 2009:

Word doc:   APPROVED MINUTES APPG on ME 21 10 2009(2)

 

Verbatim transcript:

Word doc:  APPROVED Transcript APPG 21 October 2009

 

APPG on ME Legacy Paper: 

(NB: the paper uploaded was an incorrect version supplied by the APPG on ME secretariat; it has been replaced with the correct paper below.)

Word doc: DRAFT APPG legacy paper V5 27 11 2009 (2)

 

Updates to Welfare Reform Bill:

Word doc: All Party Parliamentary Group on ME Update on Welfare Reform Bill 23 11 2009

(The Welfare Reform Bill will be discussed at the next APPG, tomorrow, Committee Room 14, House of Commons, 3.15 – 4.45pm.)

 

Please be advised that the next meeting of the APPG for M.E. will now be held in House of Commons committee room 14, as opposed to room 15.

Agenda for the next APPG for M.E., sent on behalf of Des Turner MP, chair of the APPG.

AGENDA

Meeting to be held 3.15-4.45pm, Wednesday 2 December 2009,

Committee Room 15, House of Commons

1. Welcome by the Chairman

2. APPG Report on the Inquiry into NHS Services

3. Speaker: Mike O’Brien MP, Minister of State for Health Services

4. Minutes of the last meeting

5. Matters arising

– APPG legacy paper (in preparation for the General Election)

– New research: murine leukaemia virus-related virus (XMRV)

– Accessibility of venues for future meetings

6. Welfare update

– Employment and Support Allowance

– Welfare Reform Bill

7. Any other business

8. Date of next meeting

—————————-

UK Parliament All Party Group on ME meeting on Wednesday the 2nd of December

(Previously published on 29 November on Co-Cure mailing list)

The ME community in England are approaching what could turn out to be a critical All Party Group APPG meeting and possibly the last or the penultimate meeting of the APPG before the General Election. When the UK Parliament is dissolved for the General Election all APPGs are dissolved and must be re created in the new Parliament if they are going to continue to exist. A number of the parliamentarians who are central to the APPG including its Chair Dr. Des Turner will not be standing again or are unlikely to be re-elected.

The APPG is concluding its inquiry in NHS services for people with ME and this is one of the main foci of the meeting to be held on Wednesday the 2nd of December. The other main focus of the meeting will be  that the Health Minister Mr. Mike O’ Brien will be the guest speaker and he has been invited to discuss the findings of the inquiry.

The object of the inquiry is to try to get the UK Parliament’s Health Select Committee to take up the inquiry’s recommendations and conduct a further inquiry along similar lines. Therefore the  implications of the APPG inquiry may have far reaching consequences because the Health Select Committee is far more powerful than the APPG and if the APPG is successful in getting their inquiry on the Select Committee’s work programme the APPG’s inquiry initiative will live on after the General Election.

The subject of the inquiry has been the subject of significant discussion at APPG meetings as the way in which the inquiry has been conducted has been controversial. The situation about the minutes / transcript of the previous APPG meeting of the 21st of October is unsatisfactory. I have made enquires of Action for ME who provide the Secretariat for the APPG about these documents and it would appear that AfME have not yet received the verbatim transcript from the Hansard stenographic service from which AfME’s Heather Walker writes up the minutes and the condensed transcript. I think the verbatim transcript may very well be on a 60 day service and this is why it  is not ready.

The latest minutes that are available on the website that has been set up for the APPG are those of the 1st of April as can be seen at :-

http://www.appgme.org.uk

The minutes and transcript of the 8th of July meeting have not been placed on this website and can only be found I think on AfME’s and the ME Association’s websites. Therefore it is clear from this and from the lack of more modern material on the APPG’s Inquiry that this website is not being kept up to date.

The APPG Inquiry Panel held two oral Evidence Sessions on the 9th and the 16th of July and there are no official minutes, write ups or transcripts of these two meetings despite the fact that the APPG Chair Dr. Des Turner made a public commitment to publish the transcripts of the Oral Evidence Sessions at the start of the first Oral Evidence Session. There may have been technical difficulties involved which might have prevented a written transcript being made from the audio recordings of these meetings, but if this were the case, there has been no statement from the APPG Secretariat or Chair that they have been unable to follow through on the Chair’s public commitment to publish these transcripts.

At the last APPG meeting on the 21st of October Dr. Turner decided that despite representations made  to him by Paul Davis of RiME and myself that the APPG Inquiry report ought to be made available ahead of the 2nd of December meeting to enable effective consultation on the report through a fully informed discussion at the meeting, he would not allow the report to be released to the public before the meeting. He considered that the report would loose impact if it came out in what he described in drips and drabs, but he conceded that a summary of the report, or a summary of the report’s recommendations might be made available on Tuesday evening, and that he would make copies of the full report available to the MEA and AfME on a confidential basis.

It was not clear what procedures/mechanisms would be used to disseminate the summary of the report on Tuesday the 1st of December or who would be involved in operating them. This therefore places a question mark over whether or not any form of summary of the inquiry’s report will indeed be made available prior to the APPG meeting on Wednesday the 2nd of December, and also if copies of the full report will be made available at the APPG meeting itself.

This places ME sufferers and carers who attend as members of the public at APPG meetings in a very difficult position as the matter of the inquiry report is listed on the APPG meeting agenda and we either will only have a summary of the report, or perhaps not even that with which to prepare for the meeting where it is expected that the report will be endorsed. Even if full copies of the report are available at the meeting I do not consider that it would be fair or reasonable to expect participants to have to read the report whilst those in the know who already have read their copies of the report discuss the report’s contents with a view to endorsing the report and its recommendations.

I therefore consider that the inquiry panel made up of the parliamentarians drawn from the core membership of the APPG has not made adequate information available for there to be proper public scrutiny of their work, and neither will there be an opportunity for proper or adequate consultation on the findings and recommendations of the APPG on ME’s inquiry into NHS services for people with ME.

I consider that the ME community ought to think through what the implications of simply going along with the endorsement of the inquiry report might be. The inquiry panel have trailed the fact that they have found a very mixed picture in terms of some areas of the country being served by CFS clinics that principally offer only limited diagnostics and psychologically based treatments which comprise CBT and GET. There is approximately 60% coverage of current service provision for adult services and only 15% national coverage for children.

Where a Primary Care trust, PCT does not have a CFS clinic in its catchment area a PCT can contract into a service provided through another PCT, but not all PCTs do this and what are the service issues involved in patients being passed over into to another health service area in order to attend a CFS
clinic?

What view will the inquiry take about the issues around CBT and GET, and will they recommend that these psychological treatments be made available to all ME sufferers in order to overcome the CFS clinic post code lottery, or will they take a more sophisticated approach?

What view will the inquiry report take towards the applicability of CBT and GET in general and at the CFS clinics in particular?

Where there are CFS clinics or adequate access to them further a field there are specialist services for ME patients, but are these services meeting need and what advantage do they offer, if any, over generalist services available at the local hospital or through the patient’s primary care or GP service?

One specific area of controversy that may come up within the inquiry report might be the issue of the Lightning Process, LP, which the inquiry panel took a considerable interest in despite the fact that it does not really fall within the terms of reference of the inquiry as LP is not a treatment offered by the NHS. At the APPG meeting of the 21st of October Dr. Turner was asked by Paul Davis and I to explain the inquiry’s interest in LP and he responded that LP was a potential treatment for ME on the NHS and that he as Chair of the inquiry panel was being flexible about the inclusion of LP within the bounds of the inquiry and also in the way in which the inquiry had invited a witness to the Second Oral Evidence Session to give evidence on LP which was very positive. Some of the other patient witnesses at that session did point out that there was another less positive side to LP, but the panel did not invite another witness to put the opposing view. The panel spent a considerable amount of time on LP with the effect that other areas of inquiry such as children’s services were allocated less time even though they quite clearly fell within the main remit of the inquiry’s terms of reference.

This rather begs the question of whether or not the inquiry panel simply meandered a bit off topic and off task by dwelling so long and delving comparatively deeply into LP, or does the inquiry panel intend to take a specific view about LP, and if so, will they be making any recommendations about LP in their report about LP being a potentially effective treatment that might be offered on the NHS?

Therefore I would suggest that it would be a good idea for the ME community and most particularly the PWME regular attendees at APPG meetings to discuss there matters before the meeting, and even to hold a brief pre-meeting prior to the APPG itself in order to arrive at some kind of general consensus about how the above and other issues might best be handled at the APPG meeting itself.

Ciaran Farrell

29 November 2009

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