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NHS citizen AGM

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NHS citizen AGM

Post by Jasmine2 on Thu Aug 07, 2014 8:50 am

I've just added my discussion point request to this and shared it with everyone I know in the UK who understands what I am going through/have gone through with hyperparathyroidism, years of debilitating illness trying to get diagnosed and cured, due in the main to the lack of knowledge and understanding of parathyroid disease by most GPs and scarily many endocrinologists. Who knows, it might just get them talking about it if they see a pattern of requests forming..... out of little acorns and all that ........

Jasmine x

https://docs.google.com/a/demsoc.org/forms/d/19ID6n9mjgqb6v1SIMY7k--hKnjUPLK93xu5g3WwJYMw/viewform
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Re: NHS citizen AGM

Post by Tigerlily on Thu Aug 07, 2014 9:58 am

Done it, Jasmine - grrrreat idea!

I've also told them that I'll come along and speak to the meeting if necessary - so get ready to jump on a train!

Just joking, but if the opportunity arose I'd try and do it somehow.

Love from Tigerlily xxxx

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Re: NHS citizen AGM

Post by Admin on Thu Aug 07, 2014 10:05 am

You may also be interested in this:  Healthwatch England
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Re: NHS citizen AGM

Post by Tigerlily on Thu Aug 07, 2014 10:31 am

Thanks for this Mr/s Admin - I was wondering about getting in touch with them.

Most useful. Will keep you posted. I had to fight for 16 months with a consultant who still does not see that high Ca and high PTH together are suspicious. I have 4 letters from them that show clearly that they don't understand this. And they teach at Cambs University Medical School .......

Tigerlily xx

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Re: NHS citizen AGM

Post by pilipala on Thu Aug 07, 2014 11:44 am

I've filled one in too. 

I'll happily write them an essay about it and/or speak in person. I am still shocked about the ignorance and arrogance of the medical profession about this. A friend of mine asked me why are doctors so reluctant to make a diagnosis of pHPT and I had to admit that I still don't know. They don't even want to entertain the idea and would rather pretend that you are some sort of medical mystery. It doesn't make any sense. 

Hope all appointments today go well,

Dee
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Re: NHS citizen AGM

Post by Hadleigh on Thu Aug 07, 2014 11:58 am

One GP said to me that they actually get nervous when a patient presents with symptoms that are outside the docs comfort zone, they can test for all the usual things and come up with what it isn't but not always what it is, GP's just don't know enough about it which is fair enough as they can't know everything.

BUT that is no excuse for Endo's not knowing about phpt, my Endo knew about it but wanted to go all around the houses before diagnosing, then again I guess as the only treatment is surgery they have to be 100% sure before going down that route.

Nelly
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Re: NHS citizen AGM

Post by Amanda Lynne on Thu Aug 07, 2014 12:38 pm

Filled one in and sent it.
Thanks Jasmine.
A xxxx
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Re: NHS citizen AGM

Post by Brigitte0 on Thu Aug 07, 2014 1:13 pm

Thanks Jasmine, I also filled one in. 

Love 
Brigitte xx
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Re: NHS citizen AGM

Post by mel123 on Thu Aug 07, 2014 4:36 pm

Hi

I`ve done it, great lets hope things might change for PHPT suffers!

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Re: NHS citizen AGM

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