Another major report on T3 prescribing publishe... - Thyroid UK

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Another major report on T3 prescribing published today

TaraJR profile image
15 Replies

"T3 Prescribing Report". Another major report from joint thyroid groups published today on this inequitable situation. Evidence that most CCGs still do not follow national guidance, despite NHSE telling them they are expected to. Thyroid UK were one of the patient groups involved with this.

We're pushing this as much as we possibly can. It's in the Times and Express today! And there's another question coming in the House of Lords. Lots on Twitter today from ITT and The Thyroid Trust. PLEASE share and comment wherever you can!

Report is here:

thyroidtrust.org/t3-news-an...

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TaraJR profile image
TaraJR
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15 Replies
SlowDragon profile image
SlowDragonAdministrator

Well done to everyone involved in continuing to raise the profile of this ongoing huge issue for thousands of U.K. thyroid patients

Anyone denied T3 on NHS and forced to get privately or without prescription…. Follow the link…..report your issues…….and also write to your MP

TaraJR profile image
TaraJR in reply to SlowDragon

Thank you. And yes, PLEASE everyone affected write to your MP, copy to CCG, and your local Healthwatch office. All the national guidance is named in the report, so you can just quote it.

A2C3 profile image
A2C3 in reply to TaraJR

Have just filled this in! Thank you for advocating!

TaraJR profile image
TaraJR in reply to A2C3

Great stuff!

SlowDragon profile image
SlowDragonAdministrator

Link to questions/mentions of liothyronine in House of Parliament

theyworkforyou.com/search/?...

TaraJR profile image
TaraJR in reply to SlowDragon

More to put into a letter! Thank you

tattybogle profile image
tattybogle

Wonderful piece of work by all involved , thankyou for all your hard work and and for posting it TaraJR.

it's a very useful breakdown of which CCG is currently doing what .... or rather 'not doing what they are supposed to '

and it reminded me to look up my own which i have been keeping an eye on for a while..... am still awaiting publication of latest minutes, which will hopefully include further update of progress on a review of RAG status of Liothyronine ( i assume RAG =Red / Amber / Green ?)

...previous minutes from the meetings of the Lancashire & South Cumbria Medicines Management Group.

lancsmmg.nhs.uk/downloads/m...

meeting 04 April 2022 - minutes published 16/05/2022 (page 13)

lancsmmg.nhs.uk/media/1632/...

"Liothyronine RAG status review – second consultation

CSU to bring update to November LSCMMG meeting.

November 2021 update:

Meeting to be arranged with Primary care, endocrinologist’s and medicines management to

finalise RAG positions.

TOR for liothyronine meeting to be developed.

December 2021 update: 20th

January hold the date circulated.

January 2022 update:

Meeting due to take place 20th January, check attendance and take decision to proceed/defer meeting.

February 2022 update:

Meeting to be rescheduled for April.

March 2022 update:

EB has sent out emails to reschedule meeting, if people could reply in order to get it

booked in.

April 2022 update:

EB has arranged for the meeting to take place on 4th May. If you would like to attend let us know and we will add you to it.

CSU /Open/ 14.10.2021

AGR /Open /14.04.2022

Next Meeting May 12th 2022 "

So ... i'm eagerly awaiting publication of next set up minutes from meeting on May 12th to see if they make any mention of this 'liothyronine meeting' which apparently took place on May 4th .

.. or whether it will just be another 6 months of 'kicking the can down the road'

UPDATE: healthunlocked.com/thyroidu.... (heads-up-for-patients-in-lancashire-and-south-cumbria-wanting-a-t3-trail ......liothyronine-for-new-patients.......now-ALLOWED-by-lscmmg-review)

TaraJR profile image
TaraJR in reply to tattybogle

You could always send in an FOI requesting all papers that mention liothyronine since whenever you choose. There could be more than published. Thanks for your comments. We did want to name every CCG that doesn't fully comply, including those who limit the daily dose

helvella profile image
helvellaAdministratorThyroid UK

I have today pointed out that some CCG documents are three years (or more) out of date - Liverpool CCG guidelines.

healthunlocked.com/thyroidu...

I say to Liverpool CCG: If you are taking on the responsibility of producing guidance, you are taking on the responsibility of maintaining that guidance.

JGBH profile image
JGBH

Tara, many thanks for this information. x

knitwitty profile image
knitwitty

I have responded , I am having my own battle to try and get T3 on the NHS , It's a nightmare and anything that raises the profile of this cause deserves all the publicity it can get. Have filled in the form with my own experiences. :)

crimple profile image
crimple

TaraJR big thanks to everyone involved in this report and putting a spotlight on the post code lottery for treatment with T3. I know I am very lucky to receive a prescription for T3. I did speak to my MP about the difficulties in getting appropriate treatment. You do have to be very strong to keep on slogging away and bring about change.

knitwitty profile image
knitwitty in reply to crimple

I'm really glad some people are getting what they need, you being one of them. :)

humanbean profile image
humanbean

I noticed several references to T3 not being prescribed because it is ‘not on formulary'.

I know that the BNF - British National Formulary - lists liothyronine :

bnf.nice.org.uk/drugs/lioth...

I know that some health trusts and/or CCGs use their own version of the BNF. So they are saying they don't prescribe T3 because it is not in the formulary, but it isn't in the formulary because they didn't put it there!

TaraJR profile image
TaraJR in reply to humanbean

Exactly so! Each CCG (and I assume each ICB from July) make up their own rules.

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