im looking for some intel.
Im wanting to know who “calls the shots” ,criteria-wise in the nhs, with regards to deciding on relapse criteria?
I seem to present knew symptoms as time goes by but it always seems like when i tell the neurologist they always like to put spin on it. Words like “pseudo-relapse” are used and then im sent on my way.
Similiarly, i find new lesions on a scan but im told “not to worry”
I cant help but get angry with these people and i despise the fact that im at their mercy. I refuse to believe they have my best interest at heart, which is prevention of disease activity. We all know that its much harder or impossible to fix things once they go bad.
i need to start changing the game. I need to find out whos calling the shots at the top end.
Is it the drug companies? do they determine specifically how their drugs should be prescribed?
Is there a committee of “clever” neurologists that decide the rules?
How might i go about influencing them?
Is it total bonkers to think i can sue the nhs on the grounds that they are depriving me of preventative medicines?