Update: AfME has responded via Co-Cure to this RiME notice with the following:
“As our web notice says, the APPG meeting of 8 Oct agreed to accept the draft terms of reference in principle subject to minor amendments. The Chair had hoped the terms would be agreed at the meeting but some present said they wanted a little longer to digest and the Chair agreed to this. There was no mention of a wider consultation. The recent web notice was simply intended to formalise the deadline indicated at the meeting.”
Heather Walker for Action for ME (AfME)
7 November 2008
Campaigning for Research into ME (RiME)
An All Party Parliamentary Group on ME (APPG) Secretariat notice was published yesterday (4 November), by both the MEA and AfME:
“The deadline for comments on the draft terms of reference for the APPG Inquiry into English NHS service provision is Friday 14 November 2008.”
RiME feels the deadline is too short. It will be writing to the Chair and the APPG Secretariat, shortly, proposing that it be extended to and including December 1. If you agree, please write to the people below:
Dr Des Turner MP, House of Commons, SW1A OAA; email@example.com
Heather Walker AfME, Floor 3 Canningford House 38 Victoria Street Bristol BS1 6BY; Heather.Walker@afme.org.uk
Tony Britton MEA, 7 Apollo Office Court, Radclive Road, Gawcott Bucks MK18 4DF; firstname.lastname@example.org
If you do write, please send RiME a copy. The reason we ask is if it is said that only one or two wrote in, that statement can then be rebutted.
The draft which was tabled at the last APPG Meeting Oct. 8 is at
(scroll down to ‘Policies and Documents’)
Summary of APPG Meeting 8/10/08
Politicians present: Des Turner, Andrew Stunell, Tony Wright, The Rt Hon Tom Clarke, Kerry McCarthy, Janet Dean, Damian Green, Sir Robert Smith, Countess of Mar.
The main speaker was James Purnell (JP), Secretary of State for Work and Pensions, accompanied by Dr James Bolton Deputy-Chief Medical Adviser to DWP.
JP explained why the Government felt reform of benefits was necessary; to focus on what disabled people can do rather than what they can’t, along with the steps the Government has already taken (eg Pathways to Work and Access to work schemes) and proposed to take (eg extra funds) to help disabled people back into work.
He did not refer in any detail to the particular problems ME patients had.
These are some of the issues covered in oral questions:
1. Problems faced in assessing people with illnesses of a fluctuating and relapsing nature, resulting in an inability to sustain physical or mental tasks. JP said he was aware of this and it would be taken into account.
2. The MEA pointed out re. 1 that the new capacity tests and questions, while being described as accurate and fair (by whom – ed.?), had not been reviewed independently.
3. Appeals: assurance was given that appeals’ procedures would remain. The stress that ME patients experience was emphasised.
4. Scepticism and non-belief still persist in some doctors performing medical examination for the DWP. JP said examining doctors will now have necessary knowledge of ME through training, and there was no pressure no them re. targets, that is getting so many off benefits.
5. Ciaran Farrell raised the issue of the quality of medical assessments carried out by DWP doctors and why ME sufferers were particularly vulnerable to one size fits all assessment procedures and sceptical doctors. He also raised the issue of the abolition of the existing linking rule between high care DLA and incapacity benefit whereby anyone on high care DLA is not tested for their incapacity benefit. For the new benefit Employment and Support Allowance (ESA) all DLA claimants will be subjected to testing on their ESA even those who are the most ill and most disabled.
6. JP said GPs could not be the sole source of information as they do not always provide the necessary level of independence.
7. Doris Jones raised concerns about ME persons in work.
The Countess of Mar announced she had just chaired a meeting of a newly formed CFS/ME Alliance (2 -3pm). Present were the original four – AfME, MEA, AYME amd TYMES plus others: 25% Group, MERUK, BRAME, IiME, ReMember.*
She said (1) there was agreement on 80-90% of issues (2) that the Group could be further extended, but could not include everyone (3) that the Group would be open and transparent.
Ciaran Farrell said ‘Good god’ to the news that Lady Mar had chaired the Group, then later enquired about accountability ie constitution, agenda and minutes.
Paul Davis RiME: ME patients congratulate Lady Mar on her speeches in the House of Lords:
April 16 2002: Lady Mar condemned the CMO Report saying the terminology was ambiguous and confusing and that it denied the true nature of ME and concluded:
…. Many of those who are severely affected feel let down by the apparent capitulation of the two major charities which appear to accept the bio-psychosocial model of ME….
House of Lords Jan 22 2004: Did she not argue for a strict adherence to G93.3 Code and criticise the use of GE, CBT
…. They (ME patients) have been badly let down by their main charity, AfME. It is now supporting the Wessely ‘management’ program and is, I see, to be actively involved in the development of the new treatment centres. I have serious reservations about the activities of that organisation, but now is not the time to air them….
Why the turnaround. Would she care to explain?
Lady Mar said she would not countenance working with the charities if she thought they had not changed.
Paul Davis: Peter Spencer and Charles Shepherd are here. Do they regret signing the CMO Report? The Chair dismissed the line of questioning.
APPG Inquiry into NHS Service Provision for ME Patients
Des Turner said that following discussions with the Secretariat (AfME + MEA) a draft Terms of Reference had been produced. This document was circulated at the meeting and it is reported that it was agreed it in principle subject to minor amendments (see comment in overview). The next step was to set up a team of MPs and Lords.
Paul Davis read out a question on behalf of a Hereford Committee Member:
‘re. the assessment Dr Turner has mentioned, what exactly does he have in mind? If the assessors go to the clinics the results will most probably be skewed + irrelevant due to imprecise admittance criteria…
Turner dismissed the question saying – if I remember correctly – that it was irrelevant.
Ciaran Farrell asked whether or not the clinics would be perceived to meet ME patients’ needs. Turner did not address the question, again, but moved on to processes….
Annette Barclay said it was necessary to distinguish between ME and Chronic Fatigue with regard to the clinics.
Joy Birdsey condemned the Medway Clinic in Kent, which she had attended.
Di Newman raised concerns about the Mental Health Act and Mental Capacity Bill.
Minutes: It was proposed by Lady Mar and seconded by Charles Shepherd that amendments to the minutes must in future be received by the Secretariat no later than one week before the next meeting.
MPs Referendum on ME Research
I said that 57 MPs had now signed the Referendum, would Des Turner care to make it 58? Turner said he would sign nothing written by RiME. If I remember correctly he then said the Referendum was irrelevant; of course MPs wanted research.
Disclaimer: the above is based on scribbled notes. I can’t guarantee 100% accuracy.
Well, there is quite a lot to take in, here. I think it sensible to focus on two issues:
APPG Inquiry into NHS Service Provision for ME Patients. There is obviously much concern. Common concerns are:
(1) AfME and the MEA’s continued support for the clinics.
(2) whether the APPG on ME (which recognises G93.3) should inquire into something which was never about G93.3 ME (CMO Report wasn’t based on G93.3).
RiME didn’t like the way the Terms of Reference were handed out Oct. 8 then agreed in principle the same day. Surely, organisations and individuals should have the chance to read and digest them, then reply. As aforementioned, the deadline laid down by the APPG Secretariat is too short. RiME will publish a more expansive piece on the subject, shortly.
The newly reformed alliance convened by Lady Mar. There is also much disquiet as to what is going on here. To pick up on one point: Lady Mar says that AfME and the MEA have changed. Well, I don’t know about you but I would like to see her written evidence. Accordingly, RiME has written to Lady Mar asking for that evidence. The letter will shortly be put in the public domain.
Paul Davis email@example.com
5 November 2008
*ME agenda note: According to Invest in ME, the organisation did receive an invitation to attend the meeting organised by the Countess of Mar but was unable to provide a representative on this occasion. Mary-Jane Willows (CEO AYME) has confirmed that AYME was also unable to provide a representative to attend this initial meeting.