Permission to circulate
Draft Terms of Reference for APPG Inquiry into NHS Service Provision
RiME’s Comments www.erythos.com/RiME
RiME objects to the following:
1. That Dr Turner handed out the Terms of Reference (ToR) at the October 8 APPG Meeting and sought agreement then. How could people at the meeting (many of whom have ME) read, digest, and make a judgement one way or the other.
2. That meetings between Dr Turner and the APPG Secretariat (AfME and ME Association) have taken place with a view to drafting the ToR. It has become evident that AfME was asked to write them, an email from Tony Britton 13/11/08 saying:
… Heather (Heather Walker AfME) wrote the ToR, and the Secretariat pitched in with suggestions and changes at a couple of meetings with Des T in the autumn….
3. That a message was put out by the Secretariat November 4 saying that comments had to be submitted by November 14. Far too short a time, given the nature of the illness. RiME wrote to Dr Turner and the Secretariat November 10 asking the deadline be extended to December 1. There has been no reply.
I don’t know about you but I get a very uneasy feeling about all this? My concerns are not merely to do with procedure but policy. The views of Dr Turner, AfME and MEA appear biased; that is, painting too rosy a picture; I use the word bias advisedly in that the overwhelming feedback RiME gets from around the country is negative; it is difficult to see, therefore, how they are being objective. Let’s look at some evidence:
1. He signed the Gibson Report which said P. 27:
…. The £8.5 million ring fenced by the DOH was used in part to set up 13 new CFS/ME treatment centres nationwide… The Group is extremely pleased with the advent of these centres and we hope they will be maintained and indeed rolled out….
2. He said at the APPG Meeting July 2008:
…. the inquiry (into services) would be taking evidence on progress made since the CMO Report in January 2002.
Progress? Does it not sound like the outcome has been prejudged? (Gibson, incidentally, at a preliminary stage of his inquiry endorsed the CMO Report).
3. He has not answered multiple letters and emails raising concerns about the clinics: for example, at the July 2006 APPG Meeting, RiME presented him with a dossier: a collection of 34 letters from around the UK condemning the clinics, with a covering letter; it has never been answered even after a follow-up from my MP.
4. Caucus Meetings: The Sussex Group’s website mid-2006 said that it had hosted a meeting involving Des Turner, AfME and the MEA; a business plan for the APPG had been discussed involving issues such as supporting the development of NHS Services….
1. It signed the CMO Report and NICE Guidelines: neither are about G93.3 ME and both recommend GET and CBT.
2. Literature about the clinics has been far too rosy. In 2006 AfME launched a campaign to save the NHS ‘CFS/ME’ Clinics. The Campaign Co-ordinator stated 8/8/06, ‘…. there is overwhelming support from service users….’ (no footnote and citation). RiME wrote to Angela Murphy AfME 10/4/07 asking to see the evidence (Website, Clinics folder); no reply.
3. Its contributions to APPG Meetings eg November 2005 Chris Clark then AfME Director said a fantastic start had been made on the NHS initiative; July 2006 Trish Taylor reported that funding might run out in some areas, but raised no concerns; has AfME ever raised concerns at meetings?
4. Pieces in InterAction eg a positive piece on ‘Sussex-wide CFS/ME Service’, InterAction March 2008.
1. It signed the CMO Report. It was not about G93.3 ME and recommended GET and CBT.
2. APPG Meetings: Shepherd said November 2005 that in many areas the new services had commanded the respect and support of patient groups (where – ed.?); July 2006, when I was raising concerns about the Kent Clinics (whose admittance criteria would exclude people with neurological illness, that is G93.3) Shepherd tried to dismiss those concerns by saying Findley was involved.
3. Articles in ME Essential eg NHS Crisis: Keeping it Together in East Anglia, ME Essential October 2007; was it telling the whole story? – see RiME website Clinics, East Anglia file.
4. Has the MEA, like AfME, ever presented concerns about the nature of the clinics? Again, RiME has written to the MEA (Website, Clinics Folder) but correspondence hasn’t been answered.
We are all the more concerned in that Heather Walker AfME stated 5/11/08:
…. There was no mention of wider consultation in Dr Shepherd’s informal summary because none was envisaged….
The Terms of Reference
RiME has a problem in that they do not recognise anywhere that the CMO Report and what followed – the ‘CFS/ME’ clinics – are not about G93.3 ME.
P.1: ‘The inquiry will focus on collecting data from each SHAs and PCTs: on whom? It would appear that ME patients around the country are either boycotting the centres or going only once (because the clinics can’t help them) but that people with other conditions are probably attending; results, therefore, will most probably be skewed and irrelevant.
P.3 Evidence: ‘Organisations and individuals are invited to submit written evidence’.
RiME has/is collating information and is happy to submit it. There is a clinics folder on the RiME Website with files so far on Kent, London and East Anglia; we intend to add to those files over the winter; also, there are many anecdotes from individuals in other areas in the letters folder.
RiME’s position contrasts with that of AfME/MEA but there is a difference. RiME’s is backed up with substantial written evidence – on its website, no fewer that 20 pages so far.
Much of the ToR is just waffle. It refers to finance, structures, symptom management, options…. What is the point if services are irrelevant to persons with ME?
ME patients are confused as to what all this is about. What they primarily want is investigation into what is going wrong with their bodies; that is, biomedical research.
Louise Ellis, Leader of Manchester Group, says in her reply:
We believe that the Clinical Network Co-ordinating Centre system itself is the main cause of the problems with the CFS/ME clinics. We feel it imperative that this inquiry looks into the role of the CNCCs. We believe if this inquiry fails to do so it is unlikely to uncover the root cause of the problems with the CFS/ME clinics….