Q. Where are the flames hottest on a bush fire?
A. around the outside
Q. Which has the biggest contact area?
A The outside
Q. Where is it fought and improvements made?
A. Around the outside.
Q. When are prevention and system changes activated?
A. After it's been put out.
Why am I blithering on about this?
Because I have come to the conclusion we are ONLY going to get change (in our fr*ing lifetimes!)
If WE The patients ( the hottest, biggest most interested party to this)
Go after our BIGGEST FACE TO FACE CONTACT AREA which is GP's (those with a legal (and therefore sueable) duty to provide care and do no harm. (That also means soft target)
If enough GP's are visited, by the same patients week in week out with enough good evidence backed up by reminders about their legal responsibilities and reminding them of their clinical freedom to prescribe anything not on the NHS BLACKLIST ( Not CCG traffic light drugs list)
THEN I do have a firm expectation that GP's will join our voices ( followed by endos ) and stand up to the CCG's for the sake of their patients and their own job satisfaction. (a lot of GP's and Endo's are not happy with stopping T3 but wrongly believe their hands are tied BUT to pass the buck a GP will want to refer you back to Endo who prescribed in first place so the endo can weakly say 'my hands are tied' and let the GP sleep better 'cos 'it's not my fault endo should have stood up for my patient, he knows more than me' etc.)
Why not refuse, politely, a pointless referral back to your Endo, " Why do you feel this is necessary doc?"
If you do see your endo and he proposes swapping you back to T4 "So are you saying that you have been wrong all this time?! What has changed with my health to make you believe you need to change my treatment?"
Nobody is gonna stand up for us, AS EFFECTIVELY FOR US than us as individuals
( NO! I do not mean that the wonderful forums, groups, charities out there of which I've only been having a crash course in for the last few weeks till I got T3 reinstated by our GP are not ENTIRELY WONDERFUL!!! THEY ARE AND THE BIGGEST MOST PROFOUND THANK YOU FOR ALL YOUR WORK AND ALL YOUR WONDERFUL RESOURCES FROM THE BOTTOM OF MY HEART AND FOR YOUR CONTINUING WORK some of it at levels that we mere patients could never make effective contact. love you all and thanks x)
You can't expect a few good Endo's and research chaps like Dayan etc to take on the establishment, risking no doubt their funding for research along the way without us FANNING THE FLAMES AT GROUND LEVEL, INCREASING THE HEAT AND SPREADING OUR MESSAGE OUT.
LETS GET GP'S SPEAKING UP AND THINKING - for themselves, amongst themselves, on their private web forums, with the CCg's etc
After all and I qoute from a Individual Funding Application refussal letter "CCG prescribing formularly is developed...........with the engagement of the GP'S in (county) area. (That's part of their constituion)
CCG'sand NHS have been sued in the high court, a judicial review 5th May 2016, regarding refussal to fund treatment, found to be acting 'unlawfully' etc etc ( not yet a thyroid case - but it's only a matter of time)
Just my thoughts
Live long and prosper