Lord Philip Hunt asked a question about our survey report on behalf of thyroid patients. The answer mentions the meeting that we attended with NHS England, NHS Improvement and NHS Clinical Commissioners and Healthwatch England. We weren't mentioned unfortunately, but we were definitely there!
The meeting went very well and we are hoping that the outcome will make change!
You can read the question and answer here:
England parliament.uk/business/publ...
[ Edited by admin to make link work. ]
Thank you! 🤸🏿♀️🥛
No mention of the price hike then ? Why isn't the NHS forced to source T3 from outside the UK ? The fact this has not happened smacks of snouts in the trough and corruption. A box of 30 x 25mcg still under €1.50 in Greece. I thought the NHS was in financial difficulty - obviously not 😎
I hope there are changes but I am not convinced it will happen.
"but there may be circumstances where prescribing of the medication is clinically appropriate for individual patients as determined by endocrinologists providing NHS services"
It will ultimately depend on the decision of the endos, if they say, "no", little will change for patients.... the decision makers can turn round with a clear conscience and say they made T3 available but were ignored. We need clear evidence, with analysis of the facts, to prove that "no" is the best decision.....someone's future is at stake!
It will be interesting to discover how endos in England respond.
Cynical maybe, but I've been there.....in Scotland!
The endo I saw (briefly) admitted he could not interpret my diagnostic labs from 20 years ago! He indicated LT4 as my treatment (which had kept me unwell for those 20 years) despite knowing that I was now improving by self medicating with T3 ....and I'm now progressing well on a supraphysiological dose. He did not offer T3 and said (in writing) that what I was doing seemed to be working but that it would not be his advice! In other words not "clinically appropriate"!
I understand I'm not alone in this situation.
All that despite the Health Minister's letter to all Health Boards in Scotland, some months ago, saying that T3 should be prescribed where there is a clinical need.
The quotation above from, Lord Batheil, echoes this. Hopefully the outcome from this meeting will be more positive and that it will become clear that patients like me ( throughout the UK) who would cost the NHS thousands of pounds are denied T3 wholly because it is not "clinically appropriate"....not because of any other reason.
Those of us who have managed ( with much help and support from TUK) to diagnose ourselves, source T3 and understand how to use it carefully, are the lucky ones. My heart goes out to those who are wrongly diagnosed and undermedicated and left to die a long slow, miserable death which in all probability is certified as heart disease or some such.
The truth and extent of this debacle is never likely to be known!
Until medical schools throw away the current text books, listen to the scientists ( and medics of yester year) and change what is taught to students I feel we are stuck on a tread mill going nowhere.....but we need to keep fighting this battle.
To quote Ovid, " Dripping water hollows out stone, not through force, but through persistence."
Huge thanks and very, very best of luck with the massive efforts you all are making
Ever in hope
DD
Great quotation! Not really up on my Ovid.
Don't be fooled...
Just showing off!
I like Buddha Quotes myself "If we fail to help others when they need help, who will look after us?"
The interpretation of "clinically necessary" can be the stumbling block.
No hope there - they do not even notice myxoedema !
Many thanks Lyn .....and to Lord Hunt too ......he keeps asking the questions, refusing to give up
Anyone wrote to Jeremy Hunt?
Jeremy Hunt now Foreign Secretary
T3 debate House of Lords
