Take A Survey To Help Change NICE Guidelines For The Better!
The ME Association want to put forward a better alternative to the current NICE guidelines regarding the treatment and management of patients with ME/CFS. They would like sufferers and their carers to fill in an anonymous survey, so that they can represent sufferers' needs.
Can you help to share your insights by taking the survey?
Comments on Take A Survey To Help Change NICE Guidelines For The Better! »
Arden @ 2:49 pm
In my opinion, it's no use doing surveys: you are up against a ridiculous self-serving bureaucracy in NICE. Its aim is political,not medical. Its about rationing. It is part of the huge waste of resources that cripples the health service.
I believe that we must campaign to abolish it: petitioning or reasoning will do nothing. The upper ecchelon, not the clinical subcomittees of NICE are your propoer target. The system is concerned with QUALYs, which are no way of assessing an individual patient: some drugs work for some patients, others for others: a QUALY assessment is useless in clinical situations. Furthemore, QUALYs can be applied to anything. How long will it be before individual diseases are assessed for QUALYs, not on the basis of new drugs, but on the basis of cost?
Thus, severely damaged children get no QUALY from their treatment- their life is unaffected, and of a very low standard: but the average cost to the NHS is huge- much more than for Avastin. NICE's attitude makes withholding treatment a logical neccesity-the money could be better spent elsewhere. It's my understanding that NICE, its ramifications, the bureaucracy that oversees research, and the MRECs are costing about £250,000,000 a year.
Abolish them all.
Local people should make local decisions- and the more local the better. The local people are amenable to pressure: the horrible hydra the Government has produced is quite impervious to reason or threat.