RiME and ToR

[Guest guest]

Permission to Repost

Draft Terms of Reference for

APPG Inquiry into NHS Service

Provision

RiME's Comments

RiME objects to the following:

1. That Dr 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 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:

... ( 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

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

, 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:

Des :

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 , AfME and the MEA; a business plan for

the APPG had been discussed involving issues such

as supporting the development of NHS Services....

Secretariat:

AfME:

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 AfME 10/4/07 asking to

see the evidence (Website, Clinics folder); no reply.

3. Its contributions to APPG Meetings eg November

2005 then AfME Director said a fantastic

start had been made on the NHS initiative; July 2006

Trish 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.

ME Association:

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

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.

Waffle

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.

CNCCs

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....