ME agenda: Position on the unofficial APPG on ME inquiry into NHS service provision for people with ME
Given the apparent lack of funding and resources to support the undertaking of an inquiry; given the APPG on ME’s failure to properly consult with the ME community (other than with the APPG on ME Secretariat) over the inquiry’s remit and before publishing its Terms of Reference; given the many concerns that were expressed to Dr Turner in October and November, last year, and given continued concerns over the Terms of Reference, the tightness of deadlines and the administrative procedures for the collection of evidence and data, I cannot support this inquiry.
I consider that Dr Turner should have postponed taking this initiative forward until proper consultation has taken place over what the aims and objectives of any inquiry carried out in the name of the ME community should be, and how the APPG on ME might best set about achieving those objectives within the limited resources available to the committee.
In failing to recognise this inquiry’s shortcomings and in failing to acknowledge and respond to the levels of concern, our national patient organisation cannot be said to acting in the interests of their membership and the wider ME patient community.
RiME: NHS Services Inquiry Notice 5 June 2009
Campaigning for Research into ME (RiME) www.rime.me.uk
NHS Services Inquiry
RiME is about the neurological illness Myalgic Encephalomyelitis (ME) as described by ICD G93.3 ME and the Canadian Criteria.
The Inquiry: Is it not about something else?
It would appear that the clinics set up following the CMO Report 2002 are opening their doors to patients with a range of illnesses and conditions. This is apparent from referral criteria (see RiME Website, Clinics Folder) and feedback from people who have attended.
In some cases eg clinics in Kent, according ot the referral criteria patients with neurological illness ie ME should actually be excluded.
ME patients are boycotting the centres; not only because they feel they are irrelevant to their illness but because they deem treatments inappropriate and/or harmful eg: The Sussex service says patients need to be ‘willing to have a biopsychosocial and management assessment’. Barts London uses GET and CBT.
Consequently, is the Inquiry not flawed? And its results – will they not be skewed and misleading as far as G93.3 ME is concerned?
We have a dilemma. Do we:
(1) Boycott the Inquiry? To take that route I feel one would need to be confident that one had widespread support; this does not seem to be the case.
(2) Submit evidence (but with qualification)?
Having given the matter considerable thought and consulted widely, I say 2. But I would make the following suggestions:
If you deem the project flawed then make this clear in the opening statement of your evidence.
Then, if you have criticism of your local clinic(s), make those points.
Setting up a Bank
The Terms of Reference which are on the new Inquiry website – www.appgme.org.uk – say that written evidence has to be submitted by June 30 (for details see end of piece).
On the website is also a questionnaire which people who have attended services can fill in.
Please send us a copy of whatever you submit.
We feel it useful that a ‘bank’ of evidence is set up. If the Inquiry was to report favorably on the clinics 2010 saying along the lines that ‘there were few, if any, adverse comments’ that statement could then be rebutted (if substantial evidence from ME patients had been collated to the contrary).
Copies of evidence sent to RiME would be stored away while the Inquiry is in process. RiME guarantees anonymity. If the evidence was published after the Inquiry reports, one would ask for people’s consent and maintain patient anonymity.
NB Note that they ask for addresses on evidence. Dr Des Turner MP guaranteed anonymity at the APPG meeting April 1 2009 saying, ‘Yes. I can give the assurance that we will not name anybody’. But I would make it clear still that you want your details treated confidentially, if that is the case.
Evidence (last part of Terms of Reference)
Organisations and individuals are invited to submit written evidence. The strong preference is for written evidence to be in Word format-not PDF format-and sent by e-mail to email@example.com
However it recognised that many people with ME will not have the use of computers or internet facilities and so typewritten scripts and legible hand written scripts will also be accepted.
The body of the e-mail or covering letter must include a contact name, telephone number and postal address. The e-mail/covering letter should also make clear if the submission is from an individual or on behalf of an organisation. The deadline is 30 June 2009.
Submissions must address the terms of reference. They should be in the format of a self-contained memorandum and should be no more than 3,000 words. Paragraphs should be numbered for ease of reference, and the document must include an executive summary. Submissions should be original work, not previously published or circulated elsewhere, though previously published work can be referred to in a submission and submitted as supplementary material. Once submitted, your submission becomes the property of the APPG. The APPG will expect to publish the written evidence it receives.
Evidence sessions are likely to commence 14 July 2009 and a later notice will give details of these.
Paul Davis 10 Carters Hill Close, Mottingham, London SE9 4RS firstname.lastname@example.org