APPG on ME Inquiry on NHS service provision: Draft terms of reference

APPG on ME Inquiry into NHS service provision for people with ME: Draft terms of reference

During the last meeting of the All Party Parliamentary Group on ME (held on 8 October 2008) Dr Des Turner MP*, the group’s chair, presented a draft Terms of Reference for the “APPG Inquiry into NHS service provision for people with ME” – a project Dr Turner had proposed at the group’s previous meeting, in July.

Extract from the Minutes of the July 2008 APPG on ME meeting:

“Dr Turner also announced that he intended to mount an inquiry into the state of NHS services for people with ME – in much the same style as the inquiry into the state of research chaired by Dr Ian Gibson, which reported in November 2006. The services inquiry would call for written evidence and select key witnesses who would be asked provide oral evidence to the inquiry team. He said he would ask the APPG secretariat to meet with him to discuss terms of reference and the administration. In answer to questions from the Countess of Mar and Sir Peter Spencer, he said he expected the inquiry would be taking evidence on progress made since the CMO Report in January 2002.”

Between the July and October meetings, Dr Turner met with patient organisation reps to discuss his proposed inquiry, but the ME community, itself, has been marginalised from influencing the inquiry’s remit and from the drawing up of its terms of reference.  The terms of reference were presented at the meeting in October, where it was agreed that this document would be accepted, in principle, subject to minor amendments.  [The official Minutes of the October meeting are not yet available and I cannot confirm what these minor amendments were.]

This proposed inquiry into “NHS service provision for people with ME” is an ambitious undertaking for an informal group and already concerns are being expressed about deadlines for the submission of written evidence and what type of evidence will be admissible, who will make up the inquiry panel, through what process those who are going to be invited to present oral evidence will be selected, whether the panel members will have the time to devote to the assimilation of the material submitted and the data collected, who will be given responsibility for the collection of data and the oversight of the project’s administration and how independent this inquiry will be, whether any draft document emanating from this project will be put out for consultation before it is published.

However this proposed inquiry is to be undertaken, the ME community will be anxious to ensure that the project avoids descending into the fiasco that was the “Gibson Inquiry”. 

In the YouTube video from GBCOne recorded immediately after the October meeting [ view video here ] Ciaran Farrell reports:

“[…] However, the next important point is the matter of an Inquiry conducted by the APPG on ME into the state of NHS services for people with ME.  You could read this as Gibson Mark 2 because the modus operandi of this new Inquiry will be very similar to that of the Gibson Inquiry.

“Already there are questions about the time scale of the Inquiry. Who is going to be able to submit evidence and whether or not anyone will be able to submit evidence about the vitally important clinics issue. How well these CFS clinics are indeed serving patients in the ME community. Are the clinics needed at all and if so then why are we actually having an Inquiry. Is that Inquiry going to get to the bottom of these matters or is it going to be another Gibson whitewash? This remains to be seen but the point is here that I want to alert you to the fact that there is this Inquiry so that you are going to be able to submit evidence, if you are allowed to, and so that you can make your views heard through this Inquiry however imperfect it may be.

“There is another factor about this Inquiry. They are seeking funding and support from external sources to Parliament. They will be using Department of Health personnel, via, we were told, Lord Darzi.

“Most controversially of all, Charles Shepherd of the MEA proposed that sponsorship should be sought from a drug company in order to provide secretarial support for this Inquiry. One has to ask if these people are prepared to take the money from drug companies, assuming they could get it, will the Inquiry be independent? Des Turner, the Chair of the APPG says that it will, but I have my doubts. I am concerned about the fact that Charles Shepherd, of all people, should want big pharmaceutical funding to be involved, not only in the APPG but also in this Inquiry.”

Mindful of time scales, the ME patient community awaits news of a deadline for submissions of written evidence and a schedule for oral hearings – it’s not clear when the APPG intends to issue a notice about these. The next meeting of the APPG is scheduled provisionally for December but it is hoped that more information will emerge before then.

I have no information about who has already been (or who might be) approached by Dr Turner to make up the parliamentary team of MPs and members of the House of Lords who are going to be charged with responsibility for carrying out this proposed inquiry nor whether the APPG envisages setting up an ad hoc group, like the now disbanded GSRME group, specifically to carry out this project.  Dr Ian Gibson, Secretary to the APPG, who had set up and chaired the GSRME group, did not attend the October APPG meeting and it is not yet known whether he will have any involvement with this project.

It should be understood that like the “Gibson Inquiry”, this project of Dr Turner’s will be an unofficial inquiry and any report that results out of this project will be an unofficial report. This inquiry into NHS service provision for people with ME will not be carried out by a Select Committee or a Standing (now General) Committee, nor will it be a commissioned inquiry and it will not be in a position to draw down government funding or employ dedicated research and administrative staff. In parliamentary terms, APPG groups are considered informal groups and the reports they publish have no status within either House of Parliament and they do not have the authority of parliament nor any government ministry or department.  As unofficial documents, they are not published nor distributed by HMSO.  Any report or document that results out of this project of Dr Turner’s should not be described as a “Parliamentary Report” or a “government report” or an “official report” into NHS service provision for people with ME.

Although the panel who carried out the unofficial “Gibson Inquiry” would have received written submissions expressing concerns about the quality of services being offered in the new “CFS” clinics and the fact that many of these services have been set up within psychiatric departments with psychiatric lead clinicians offering nothing more that “illness management strategies”, CBT and GET, the Gibson Report had very little to say on the subject of the ME patient community’s concerns about these new services which were then in the process of being rolled out.

*Dr Des Turner MP, is a Patron to the Sussex and Kent ME/CFS Society which is affiliated to the national patient organisations AfME (Action for ME) and AYME (Association for Young People with ME).  The Sussex and Kent ME/CFS Society is chaired by Mr Colin Barton – a champion of the “CFS” clinics.


Extract from the ME Association’s summary of the October APPG meeting:

APPG on ME: Brief notes on meeting 8 Oct, Dr C Shepherd


Des Turner gave further details of the APPG Inquiry into NHS Services. Following discussions with the Secretariat on a number of practical issues relating to setting up this inquiry, a draft Terms of Reference has been produced. This document was circulated to the meeting and it was agreed to accept this in principle subject to minor amendments. 

The next step is to set up the parliamentary team of MPs and members of the House of Lords that will carry out the Inquiry.

As with the Gibson Inquiry into Research, the process will involve gathering written and oral evidence from people with ME/CFS and those involved with providing NHS services.

A great deal of work will be involved – so the issue of administration and possible sources of funding were also discussed.

Des Turner also dealt with some of the misunderstandings that are already appearing – for example, there is no intention of sending people round to inspect and report on what is happening in the new clinics.”

DRAFT terms of reference for APPG Inquiry on NHS service provision

Click here for Draft Terms of Reference  in PDF format, read Text version, below:

Text version

DRAFT Terms of reference


The 2002 CMO report recommendations, which were accepted by the government, raised expectations of major improvements in the provision of primary and secondary healthcare services for patients with M.E.

A central ‘ring fenced’ budget of £8.5 million was announced in 2003 with the specific aim of developing new secondary referral services for people with ME in England. The Department of Health funding was released in two phases in 2004/05 and 2005/06. This resulted in the establishment of 13 Clinical Network Co-ordinating Centres and some 50 Local Multidisciplinary Teams.

Subsequent changes in NHS organisation and budget setting arrangements have since made it far more difficult to establish the level of investment into the care of these patients. It has also become apparent that some of these newly established secondary services are having to cope with significant reductions in funding. As a result, some have either closed or are under threat of closure – an issue that was discussed by the APPG at its meeting on 12 July 2007.

Patient group surveys continue to identify high levels of patient concern about the services which are being provided and further concerns about the way in which the evidence-based recommendations contained in the 2007 guideline on ME/CFS from NICE could result in an inflexible approach to management.


The inquiry will evaluate the extent to which the NHS is providing care for people with M.E. (Myalgic Encephalomyelitis/ Encephalopathy) in England, particularly in primary and secondary care, and in specialist centres/teams.

Specific areas of enquiry

The inquiry will focus on collecting data from each Strategic Health Authority (SHA) and Primary Care Trust (PCT):

. about their service framework for caring for people with M.E., including children with M.E. and those severely affected by M.E.

. about the funding they had available in 2007-2008 for caring for people with M.E., what they will have in the budget to provide services for people with M.E. in 2008-2009 and what funding they would need to implement the NICE guideline

. on plans for the establishment of new clinical services where no such service currently exists

. on what currently happens to people with ME where a secondary referral is required but no local service currently exists

. about the ways in which patient outcomes are measured and seeing how this compares with how patients measure outcomes

It will also consider:

. the extent to which the National Service Framework for Long Term Conditions addresses the generic issues affecting the management of the illness, sets standards for treatment and care and supports health and social care professionals to deliver high quality services.

. how well the reality and impact of the condition and its symptoms are acknowledged in primary and secondary care and in specialist centres/teams

. how well health professionals in primary care, secondary care and in specialist centres/teams provide information about the range of interventions and symptom management strategies available, including benefits, risks and likely side effects

. the extent to which health professionals in primary care, secondary care and in specialist centres/teams receive appropriate professional training in the range of interventions and symptom management strategies available, including benefits, risks and likely side effects

. whether health professionals in primary care, secondary care and in specialist centres/teams provide adequate information on the possible causes, nature and course of M.E.

. the extent to which health professionals in primary care, secondary care and in specialist centres/teams take account of the:

– age of the person with M.E., particularly for children younger than 12 years

– the severity of the patient’s M.E.

– patients’ preferences and experiences and the outcome of previous treatments

– and provide diagnostic and therapeutic options to people with M.E. in ways that are suitable for the individual, including providing domiciliary services (including specialist assessment), or using methods such as telephone or e-mail.

. the extent to which health professionals in primary care, secondary care and in specialist centres/teams share decision-making with the person with M.E., establish a supportive and collaborative relationship with that patient and their carer(s) and recognise their right to refuse or withdraw from any component of their care plan without affecting other aspects of their care or future choices about care.


Organisations and individuals are invited to submit written evidence. Written evidence should be in Word format – not PDF format – and sent by e-mail to (tbc)

The body of the e-mail must include a contact name, telephone number and postal address. The e mail should also make clear if the submission is from an individual or on behalf of an organisation.

The deadline is (tbc)

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 (tbc) and a later notice will give details of these.



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