CCRNC Constitution - transparency, patient representation
The following was kindly read out for us at the October APPG on ME meeting by Jill Cooper - ...
Thank you for agreeing to look at the WMMEG statement again and the issues raised about patient representation, transparency and the suitability of the education and training programme provided by the CCRNC.
 
To open up the discussion further I would like to tell you that WMMEG have pursued these issues with Dr Crawley and have recently received from her a copy of the CCRNC Constitution (copies given out) and this document clearly excludes anyone who does NOT "explicitly" support NICE Guidelines. Therefore a large body of patients and patient charities cannot be part of the process of the CCRNC which at present shapes and defines the NHS services for CFS/ME. 
 
This cannot be acceptable to those who support the definition of patient representation as described by the Dept of Health - briefly that purpose of patient representation is to 'provide a free exchange of ideas, questions, comments or criticisms...'

Whilst we appreciate Sir Peter Spencer's assertion at the July APPG that they are 'a critical partner' on the CCRNC Executive and we are sure they do a good job, AfME do not always represent our views - in that they do support the NICE Guidelines 'explicitly" and we do not. 

WMMEG and all those who co-signed the WMMEG statement hold the view that the NICE Guidelines are unacceptable to those patients with ME and would like the opportunity for those patients to be able to clearly and politely express their views at the CCRNC or to have charity which supports their views to represent them on the Executive of the CCRNC"


The WMMEG subsequent comment:-
"We think that the point we raised at the APPG was perfectly valid and one that we could have reasonably expected and hoped to promote a civilised discussion on this very important procedural point." 

The above refers to the WMMEG statement on CCRNC training & education (presented at the APPG in April).  This statement was further updated to include transparency, patient representation and conference content and presented to ForwardME at the end of April.  This was the document which was co-signed by 27 ME groups and included the results of the LocalME Poll.

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