Suffolkres
Senior Member (Voting Rights)
I will look up the whole "Questionnaire" used by the Norfolk & Suffolk Service- which patients say can take up to an HOUR to do---- which the service manger told us -they uploaded to the "NOD Database"- yes, you know the one- BACME-Bristol -EC etc- BUT this was closed down in 2015 and discontinued I was told by the guy with responsibility for .....so who is telling Porkies here?Another consideration. CCGs?/NHS ME and CFS Services have to PAY to use the Chandler Scale I am told as it is a "commercial product". Patients find it lengthy, onerous and challenging- and for what outcomes....?
It should be discontinued on lack of cost effectiveness and for dissipating the few precious £ spent on any ME services. We have tried (unsuccessfully) to challenge local commissioning asking them to address this within the service specification and contractual arrangements. CCGS have "patient participation" within their target for the year locally but, watch this space- they are not really taking our participation seriously. We have challenged the use of this scale within the business model for the 7 CCGs across Norfolk & Suffolk.