We recently let you know that we would be having a meeting with the Director of Guidelines at the National Institute of Health and Care Excellence.
The meeting lasted 45 minutes and it was reassuring to know that the Institute in general, and the Director and his colleagues in particular, are fully aware of the problems with the way in which the B12 status of patients is assessed and the severe limitations of the assay used to diagnose any deficiency as being caused by Pernicious Anaemia.
Members of this society can be assured that these issues are now firmly on the agenda for possible future investigation by NICE. But don’t expect anything soon; any set of guidelines will take at least three years to develop (at a cost of around £750,000).
NICE Guidelines take many forms; NICE guidelines (clinical, social care, public health, medicines practice), technology appraisals, Interventional procedures, Medical Technologies, Diagnostics and Highly Specialised Technologies. And we, as a patient support group, are competing with many other groups requesting that the Institute investigates the problems faced by patients.
We want NICE to investigate the problems associated with the diagnosis and treatment of Pernicious Anaemia with a view to them producing a set of guidelines that will tackle the problems faced by patients.
The society’s offer of help in any way was warmly received and so we fully hope to be involved in any Guideline developments in the future. We will keep you posted of course of any developments!