The following response was sent to Heather Walker, Secretariat, AfME (Action for ME) on 4 November.
May be reposted
Subject: RE: APPG Enquiry into NHS Service provision.
Dear Ms. Walker,
I write in connection with the item below which appeared on the AfME website during the course of today, Tuesday, 4 November, which I have cut and pasted below for your reference. I welcome the fact that the APPG are willing to consult on the terms of reference for the enquiry, but I am very gravely concerned that there is insufficient time for ME sufferers and carers to do so within only 10 days! I am also gravely concerned that many people will be put off from contributing their views because the issue of whether any comments or suggestions or criticism could be taken to be “ minor” or not may in practice be a method by which censorship may be imposed, or may be seen to be imposed.
It was clear from the discussions at the APPG meeting itself that much remains undecided about the policies, processes and procedures of the enquiry and how these would specifically relate to the terms of reference for the enquiry, therefore at the present time it is very difficult to ascertain whether the terms of reference in their present form will give the opportunity for the ME community in general and ME sufferers and carers in particular to participate in the enquiry in a free, fair and unbiased way so that their voices maybe heard on the critical issues the enquiry will examine.
It would therefore be far better in my view if some of the overall policies, practices, and procedures were thought through and worked out and incorporated in the terms of reference as a means of achieving the aims and objectives of the enquiry, and then the matter put out to consultation with the ME community with a reasonable timescale for people to respond within, and a far better idea of what the enquiry plans to do, and how the enquiry intends to carry out its plans. It would then be possible to consult on a fully worked out coherent proposal when nothing is necessarily assumed or presumed as the document that is out to consultation would be a freestanding one and would not be subject to ad hoc alteration via later creation of processes and procedures which could radically change the modus operandi of the enquiry, and thus shift its emphasis, or its route to achieving its stated aims and objectives, or indeed the direction the enquiry may take.
As it stands at the moment, one must interpolate a great deal about parliamentary processes and procedures, and/or infer that this enquiry will operate along similar lines to the Gibson enquiry, which may not be fair or reasonable assumptions to make bearing in mind the fact that such matters have not yet apparently been decided, and that the APPG enquiry would necessarily have to operate along somewhat different lines because the presumed intention of the enquiry is to make recommendations that would be taken up by presumably the health select committee. In addition, there is the matter of the NHS input from the staff in Lord Darzi’s office and the way this changes the way in which the enquiry would collect evidence and assign the worth of the evidence thus collected in view of a survey of regional health authorities who would in turn survey their local PCTs. This is fundamentally different from the way in which the Gibson enquiry was conducted, so any assumptions based on a modus operandi of the Gibson enquiry may therefore not only be unwelcome to those on the APPG enquiry, they may also be misleading.
During the course of the APPG meeting I noted a number of the charity representatives making very disparaging comments about the way in which certain matters were discussed on the Internet, with those concerned considering that the criticism made on the Internet was unwarranted. I would like to point out that where either no information is provided, or a minimum of information is provided which does not describe properly or adequately the initiatives being undertaken by those who would represent ME community and have a leadership role within the ME community, questions will be asked and criticism made that what has been done, or maybe done will not be carried out in an open, honest, and transparent way. Therefore, I would very strongly recommend that the public Internet debacle over the terms of reference of the Gibson enquiry should not be repeated if lessons have indeed been learnt.
It is with this Gibson enquiry public Internet debacle in mind that I point out that this debacle occurred because of lack of adequate consultation over the terms of reference of the enquiry, its aims and objectives, its status and who it would be principally reporting to and how, as well as a highly restricted timetable for making responses against what rapidly became a moving target of policies, procedures, and processes by which and through which the enquiry endeavoured to enquire.
Should my pleas fall on deaf ears as I think they might, then when there is criticism of such matters on the Internet would you please bear in mind the fact that I pointed out to you that things could have been done differently and in such a way as to avoid the sort of criticism that may very well be generated against the APPG and the main ME charities who are clearly backing the enquiry, and therefore the way in which the enquiry will be conducted.
Terms of reference for APPG Inquiry into NHS service provision
04 November 2008
The deadline for comments on the draft terms of reference for the APPG Inquiry into English NHS service provision is Friday 14 November 2008.
The draft was tabled at the meeting of the All Party Parliamentary Group on M.E., which was held on 8 October.
A number of those present welcomed the Inquiry and the meeting agreed to accept the draft terms of reference in principle subject to minor amendments.
The Chair, Dr Des Turner, said that any minor amendments should be sent to the Secretariat by mid November – a date now confirmed as the 14th.
He clarified questions regarding the scope of the inquiry: it would not look at research issues as these had already been covered by the Gibson Inquiry; it would look at NHS service provision across England and not focus exclusively on NHS specialist CFS/ME clinics; it would not send inspectors to assess NHS specialist ME clinics.
The Chair is inviting a parliamentary team of MPs and members of the House of Lords to carry out the Inquiry and membership of this group is expected to be announced by the end of the month.
The Inquiry will invite written evidence from people with M.E./CFS and those involved with providing NHS services and, once it has considered the written evidence, it will then invite a number of people to give oral evidence.
Further information will be posted as the processes, procedures and resourcing are finalised.
4 November 2008