CCGs can only guide on Liothyronine prescription - Thyroid UK

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CCGs can only guide on Liothyronine prescription

amasufindme profile image
22 Replies

I wanted to share this letter with you from my GP who wrote the terms of service for GPs in this country. CCGs can only offer guidance, but they cannot instruct GPs what they should or should not prescribe. So if you are in this predicament whereby GPs are refusing because CCG say so, then the GP should be prescribing Liothyronine for you as per their Terms of Service.

I hope this gives some clarification :-)

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amasufindme
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22 Replies
SlowDragon profile image
SlowDragonAdministrator

That is a truly brilliant letter. How nice to see a GP prepared to clearly state, in writing, the legal situation.

amasufindme profile image
amasufindme in reply toSlowDragon

I had doubted and questioned my GP so many times, anxious that one day the CCG had the power and was going to withdraw the LT3 medication regardless of my clinical need. I know that there a lot of us out there who have Endocrinologist support for LT3 clinical need and the GPs are refusing to prescribe!! Its despicable. I hope this letter will help change the situation for some patients who are being denied it purely down to cost. GPs need to adhere to their Terms of Service.

This is my 12th GP since diagnosis! :-)

SlowDragon profile image
SlowDragonAdministrator in reply toamasufindme

Exactly, the number of people on here struggling to get, or keep hold of, NHS T3 prescription is national disgrace.

Fortunately my GP is of similar persuasion as yours.

Mandy2007 profile image
Mandy2007 in reply toamasufindme

👊 BOOM!!! Well done you....and thank you for posting this letter from your GP, it will definitely help to empower anyone struggling against unhelpful GP’s. How can they argue with that?!!

amasufindme profile image
amasufindme in reply toMandy2007

Prescisely Mandy2007 :-) we are kept in ignorance ...GPs will have read their Terms of Service, so they are knowingly breaching those terms and failing the patient.

I read all of my employment contracts ...when I was able to work.

Clutter profile image
Clutter in reply toamasufindme

Amasufindme,

May I have your permission to post this on Twitter. I'd like to send it to Somerset CCG who have blacklisted Liothyronine and have tweeted that Liothyronine is not safe.

bantam12 profile image
bantam12 in reply toClutter

Our GP in Somerset is still prescribing T3.

Clutter profile image
Clutter in reply tobantam12

Bantam12,

Perhaps your GP knows that the CCG can't dictate what GPs prescribe? Some GPs seem to think they'll be fired if they don't do what the CCG tells them.

amasufindme profile image
amasufindme in reply toClutter

Yes of course Clutter I have taken out names with that in mind

:-)

WOW - If they think Liothyronine is not safe then who left it in the BNF !!!!!!!!!! This just makes me so mad (reverting to overuse of exclamation marks)

Clutter profile image
Clutter in reply toamasufindme

Amasufindme,

Thank you :-D

Not sure if you're being ironic but Liothyronine is safe for long term use.

thyroiduk.org.uk/tuk/resear...

ncbi.nlm.nih.gov/pubmed/269...

amasufindme profile image
amasufindme in reply toClutter

Oh very, very ironic Clutter - I would not take anything that was not safe for me.

I am fuming that a CCG - obsessed with their spreadsheets and so disregarding of patient's health - can manipulate the facts by declaring a medication which is in the BNF and gone through all the MHRA checks is not safe

lynmynott profile image
lynmynottPartnerThyroid UK

I LOVE this doctor! Can I use this in our campaign? :-)

amasufindme profile image
amasufindme in reply tolynmynott

Yes of course lynmynott I have taken out any names with that in mind

:-)

lynmynott profile image
lynmynottPartnerThyroid UK in reply toamasufindme

Excellent, thank you! I've pointed someone already to your thread. I think it's going to help some people. x

Treepie profile image
Treepie

Given your GP wrote the terms of service would he allow his name to be shown?

amasufindme profile image
amasufindme in reply toTreepie

I have shared this letter in the hope that it will help others as it clearly states what GPs should be doing when a patient has clinical need for LT3.

This GP in being one of the author's of the Terms of Service is simply stating what the procedure is.

This dysfunctional health system is prioritizing budget over patient health - which we are experiencing directly - and in my view has created a fearful and confusing time for HPs who are allowing their integrity to disappear.

What would your purpose be in specifically having this GPs name and how would it benefit you Treepie?

Treepie profile image
Treepie

No benefit to me but I wondered if others might benefit ,as someone involved in determining terms and conditions should be a fairly well known name to other GPs and as a result the letter might carry more authority than an anonymous letter.

amasufindme profile image
amasufindme in reply toTreepie

Thanks for the clarification Treepie ... the contract carries the authority and doesn't need a fellow GP to remind another to read and adhere to it.

Lilian15 profile image
Lilian15

I believe that is so, and so does my GP. So she referred me back to the endocrinology department. The consultant who said I needed it has now left and there is another one. She tells me that she has been told (possibly by CCG) that she must wean her patients off T3. Therefore that is what she is going to do. She told me she was going to tell my GP to stop prescribing it. In her clinical opinion I do not need it. As her clinical opinion is mightier than God's, regardless of how she comes to it, and it seems she has come to it by being ordered to come to it rather than taking notice of history and test results, my GP has stopped prescribing it. So my GP is covered by not prescribing it because the endo has told her she shouldn't.

What faith can anyone have in doctors / consultants when their decisions are made on everything else but the actual health of the patient. It is such a pity doctors are not paid by results and the satisfaction of their patients.

amasufindme profile image
amasufindme in reply toLilian15

Hello Lillian15, this is eloquently put and it is a travesty of our time. Any infrastructure of accountability and performance review is unfortunately not likely in the present climate of GP shortages...as such an infrastructure would not be welcomed by them.

I am so sorry you are experiencing this. Did you receive in writing from your previous Endocrinologist that you have clinical need? If so would it be a good idea to write to this new Endocrinologist and request an explanation as to why she has disregarded this stated clinical need, your symptomatic history and test results in her new clinical decision? Also ask to confirm in writing who specifically has told her to "wean her patients off T3". Send registered post to her etc.

Depending on the reply (really need her to state in writing that cost has been the factor in withdrawing your LT3 - so wording in your letter is crucial) it may be that you want to action a complaint to PALS, Healthwatch and GMC.

It is so hard for us who have such little energy to enter this fight. I am beyond outraged!

Your GP does sound truly supportive and I wonder whether you could discuss with her doing another referral to an Endocrinologist (refer to TUK patient recommended HP list).

Even though I have this letter from my GP I still doubt that I will continue to receive LT3, as a chronic medication. I am seeing my Endo in April and anticipating that there has been a new wave of bullying from the CCGs etc.

Please keep us informed and best wishes to you :-)

Foggy73 profile image
Foggy73

Thank you. This is very helpful.

Hillwoman profile image
Hillwoman

amasufindme I've only just seen this post. Thank you for such an informative and encouraging discussion.

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