Not adequate, not safe, not acceptable (NHS services draft Terms of Reference), Greg and Linda Crowhurst

Ed: Note: The draft Terms of Reference for the APPG on ME’s proposed inquiry into English NHS service provision for people with ME were presented and agreed at the October meeting of the APPG, in principle, “subject to minor amendments”.  According to the APPG Secretariat, the Chair, Dr Des Turner, “had hoped the terms would be agreed at the meeting but some present said they wanted a little longer to digest and the Chair agreed to this. There was no mention of a wider consultation.”

The Secretariat to the APPG on ME is shared between Action for ME (AfME) and the ME Association (MEA)

AfME: Heather Walker Heather.Walker@afme.org.uk   Sir Peter Spencer peter.spencer@afme.org.uk
MEA: Dr Charles Shepherd charles.c.shepherd@btinternet.com   Tony Britton tbritton02@yahoo.com

Chair of the APPG on ME:  Dr Des Turner MP  turnerd@parliament.uk

Secretary of the APPG on ME: Dr Ian Gibson MP gibsoni@parliament.uk

If you are contacting the Secretariat with concerns about these draft Terms of Reference or the APPG’s failure to consult with the ME community over this proposed inquiry’s scope and objectives and would like your comments published on ME agenda site please forward to  me.agenda@virgin.net  and please also forward a copy to Paul Davis, RiME rimexx@tiscali.co.uk   

A PDF and text version of the draft Terms of Reference can be read here

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Not adequate, not safe, not acceptable.

A response to the draft Terms of Reference for The APPG Inquiry on NHS Service Provision For People with ME.

by Greg & Linda Crowhurst
07 November 2008

(may be reposted)

For anyone with neurological ME, these terms of reference are not adequate, not safe and will not necessarily draw out the correct conclusions. This Inquiry could even end up potentially validating the existing clinics and even give PCTs a means to ask for more funding to implement CBT and GET, as recommended by the current NICE guidelines.

No Charity could possibly want the NICE guidelines validated as they have universally decried them, so why make them one of the key elements of this Inquiry?. This is potentially a very frightening and risky path to go down and bizarre even, given that the NICE guidelines are being challenged by Judicial Review in February.

The draft APPG terms of reference are not clear enough about the difference between CFS and ME and therefore any results potentially could well obscure the needs of people with ME.

The use of the term “Encephalopathy” in the Terms of Reference is an invalid and unsubstantiated label for a real WHO validated disease and is of great concern for it potentially validates a wrong psychiatric basis for ME. It is not be just what Authorities are providing, in relation to the NICE guideline, rather there needs be a question about the appropriateness of services for people with ME – or Chronic Fatigue; all of which would dangerously come under this conglomerate term “opathy”.

Because it does not specifically acknowledge the need for biomedical leadership or clinical input, the proposed Inquiry is potentially a vehicle for validating the current lack of biomedical input, by omission.

The Terms of Reference are particularly inadequate in terms of raising the needs of the severely affected.

The need for new, innovative, appropriate biomedical services for people with severe ME might not be addressed under these terms of reference, because they are only asking whether the severely affected are being included in current services or what funding is needed to include them in current services.

This information could easily be misinterpreted especially given that the draft Terms of Reference, only focus upon diagnosis, therapy and management; potentially negating the pressing need for treatment, research and in-depth testing. Unless the term “biomedical” is specifically emphasised in these Terms of Reference the Inquiry will not be able to establish clearly enough that the NHS Provision is inappropriate, not because there is not enough money to provide CBT and GET but because the biomedical input is utterly lacking.

The terms of reference should be clear about who should be representing the needs of people with ME, especially the severely affected, who will be unable to attend.

This Inquiry could well enable PCTs to present appropriate-sounding interventions that are completely inappropriate in reality.

These terms of reference do not, in our opinion, address the real issues.

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