T3, NDT, CCG's, Gp's, Endo's, Drug Companies, Government...how effectively as individuals we can help and push for change

[juliat]

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

Juliat x

[Hidden]

juliat - I admire your determination and hard work that you're putting in to this and sincerely hope that it comes to fruition.

Many of us though have been beaten down by the NHS and its GPs and Endocrinologists who've shown no interest in helping us recover our health. I believe the premise that doctors care about their patients is wide off the mark, to my mind they're more interested in covering their backs and protecting their jobs.

As an example, the NHS Endo I was under told me that he wasn't concerned about my symptoms hence he never prescribed T3 whilst admitting that it was what I needed.

Currently have ongoing complaints about a number of GPs, the Regulator doesn't give a stuff about their many mistakes and have been waiting over 2 years for the PHSO to respond to my complaint.

If one is to believe Pulse magazine then doctors hate their jobs and their patients in equal measure.

I've been a member of this Forum for too many years and, in my view, thyroid patients are no further forward. There seems to be little being done to change the status quo and let's not forget that fat, middle-aged moaning women with a thyroid condition (with apologies to the men for this generalisation) is hardly newsworthy. This perception badly needs to be changed.

Compare it to John Caudwell's Lyme disease charity where it's taken a multimillionaire with influence to be listened to by the Government with action being taken.

As well as being hypo and buying my own T3 I've recently been diagnosed with Lyme, paying for my own testing obviously. The bottom line is I can not afford for much longer to be paying for my own healthcare, including medications, whilst being unable to hold down a job. I'm worn out and now have little interest in life.

Sorry for sounding so cynical but we live in a world where people are no longer valued. Good luck with your battles.

[Marz in reply to Hidden]

I hear you cinammon_girl x

[Hidden in reply to Marz]

Thank you Marz.

[nightingale-56 in reply to Hidden]

I think you speak for most of us Cinnamon-Girl.

[Hidden in reply to nightingale-56]

Thank you j_bee.

[juliat in reply to Hidden]

Blimey!

[marigold22 in reply to Hidden]

I have known for decades that GP's hate their job. One had a bottle of vodka under his desk, another on being asked by me to read about thyroid replied he really didn't have any spare time. To get anywhere the whole lot need to be hit hard by a legal action

[Hidden in reply to marigold22]

marigold22 - good post! Do you think that the doctor's drink problem was (conveniently) ignored? Agree that they need to be hit hard by legal action, I so wish thyroid charities would work together and really be a force to be reckoned with.

[NataschaM in reply to Hidden]

Check my post from today...united we stand and divided we fall.

[juliat]

Blimey!

[Bluemaxx]

Hey sounds great but maybe we should also lobby the professors who train future doctors so that they are properly trained.

[Hidden in reply to Bluemaxx]

Who sponsors the medical colleges that churn out these hard of thinking students?????

[thyr01d]

I agree and am about to start a letter to my GP and have been considering making an appointment every week to repeat my request for T3, over and over and over again until she decides she would rather not have her time wasted. Don't think I'm really that brave but in my head it's good!

[juliat]

Hi thyr01d

Go for it!!!

We need more pro-active people who will not accept this nonsense xx

Doctors are not GODS, you do not need to be frightened of them.

They are not omnipotent!!

We pay their salaries

They work FOR US

Yes they are the 'gate keepers' to other services which is why we need to push HARD against that gate and when it cracks open put our foot firmly in the gap and keep going till we open the door to common sense and legality.

what have we got to lose? Only our lives as we know them today and the future health and wellbeing of our kids and grandkids

GO FOR IT and let us know how you get on so we can support you.

x Juliat