Linda, I hope this finds you well. I am in the process of writing to Nick Clegg as President of the Privy council with a letter for him to pass on to the Privy Council members, urging them to investigate the RCP policy statement that is leaving over 300,000 UK citizens suffering unnecessarily. I have been informed that it is best to hand this personally to Nick Clegg rather than sending it by snail or email, and wondered if you would be happy to do this for me. Please could you respond privately using tpa******@gmail.com rather than FB?
It should be ready during the course of the next week. Also, if you know of any such members of the Privy Council that you feel might be sympathetic towards our cause, please will you let me know?.
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LindaC
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What upset me about Sheila's death is the total disaster that happened to her after her stroke. She had always made sure she took her thyroid hormones regularly. Her quality of life had been appalling without them. When she had a stroke and was completely incapacitated by it, her immediate family forget to let the hospital know she took thyroid hormones and never took them to hospital or ensured she was correctly dosed. I think she went without her thyroid hormones for about 8 weeks.
The fact that she had worked so hard for people with thyroid problems and yet ended up suffering that way just shocked me.
Yes in spite of a little tricky side, she was an extremely strong and dedicated advocate for all of us and very kind underneath. I didn’t know she had been made to suffer without her thyroid meds during her last time. How ironically sad.
How dreadful - such a strong woman - always time for people and so dedicated to our Thyroid Cause! It always seems so much worse when someone like Sheila falls foul of this kind of 'error': poor soul! 💚❤️💛
Early this year, I was admitted to hospital. GP wrote in advance, meaning I had a little time to bathe and put together some stuff, for an emergency ruptured appendix. On admission, I was asked which medications I take, something I've always dreaded. SERC 8 for vertigo [yeah, just another of those signs/symptoms] and the hormone Liothyronine. The guy simply asked me if I had my own with me [I'd always had visions of me having to push and pull with someone trying to 'take them away' or husband 'sneaking them in', it was Covid restrictions so no chance!], which I did have my supply [plus my usual supplements]. To my shock and surprise, nothing was said.
Yes, I think so too - BUT - any endo around... thank goodness it was kind of waved by via someone who probably didn't know what Liothyronine is! Talk about informed choice, informed consent!? Just WHAT are we actually living in?
Another point is that nobody had a health power of attorney for Sheila, so even though friends were informing the home that Sheila had to have NDT (or T3), they were not bound to listen to them, and they did not. They could not even arrange for another doctor to see her. Since then I have not only taken out a power of attorney for finances, I have taken out another one concerning health. There is a lot of talk about lasting powers of attorney but nobody mentions it does not cover health matters and another one is needed for that.
Though I did not know of Sheila no human being should ever be without thyroid meds or any meds that they are on and need. This was/is an awful experience to have to be put through. Heaven help us. Loved ones should be made aware of the meds that we are on to advocate for us if G-D forbid we can't for ourselves.
I had the pleasure of meeting Shelia some years ago at a thyroid conference in Harrogate. She always did her best to help people.
I didn't know about her not being able to access her meds whilst in a home. That is awful.
I do know that certain Drs do write in medical notes above and beyond every minute detail of your conversation with them during the consultation. Just saying.
Yes, a wonderful woman - to hear this is too tragic, given how she had to fight every step of the way for herself and to benefit others, to be denied this at the end. 😭🍀💛💚
Oh, I know all about Drs writing in medical notes - do I - often not 'every minute detail of our conversation...' sometimes even Walter Mitty fantasy!
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