GP won’t prescribe t3

[Thyroid36]

good morning everyone my consultant has instructed my GP to continue t3 as he said in the area of Kent the CCG will continue t3 once prescribed by a consultant endo. Before I ring them I would love to hear some views so I can email them foreharmed telling them this is not OK! I am full thryoridectomy patient. Here is his letter and here is their response. Absolutely disgusting! A diabetic would not be refused insulin! I have no parathyroid working glands and no thyroid honestly it’s disgusting that a consulant has told them too because I am low in t3 and I feel awlful and they refuse ! Disgraceful! I’m so angry but before I ring them I would love some advice on where I stand . Thank you

[Indigourchin]

First of all I'm so sorry , and I can't be much help , but I thought Roma T3 was now available on the NHS. Goodluck!

[helvella Administrator in reply to Indigourchin]

Several T3 products are available on the NHS - including Roma capsules.

But it is a widespread requirement that prescribing is initiated by an NHS consultant. (Might even be universal but as the various NHS bodies each do their own rules, it isn't easy to be sure.)

[Thyroid36 in reply to helvella]

Ah thank you ok! My GP is based in Kent and the endo said this to me on email “I have also heard that the CCG in Kent are happy for the GPs to continue T3 in the NHS once started by a specialist. I could also do a follow on letter recommending this which you could pass on to your GP.Please let me know”

[Hay2016 in reply to Thyroid36]

Is he an NHS consultant too?? Some will send letters on their nhs letterhead. RMOC guidelines do say “ In accordance with NHS guidance on ‘Defining the Boundaries between NHS and Private Healthcare’, patients who are currently obtaining supplies via private prescription or self-funding should not be offered NHS prescribing unless the guidelines in this document are met. Patients who have been seen privately retain the option of being referred back to the private service for private prescription.”

X

[Thyroid36 in reply to Hay2016]

yes he is an NHS doctor too, ooh so could I ask him to send a letter on his NHS letterhead?

[Hay2016 in reply to Thyroid36]

it’s worth an ask but your gp may come back and say we didn’t refer. Ask for referral to him under nhs, he may then be able to just send gp a letter saying I recommend t3. Xx

[Thyroid36 in reply to Hay2016]

oh yes great idea! Thank you 🙏

[Thyroid36 in reply to Indigourchin]

thanks

[SarahJane1471]

is this an NHS consultant? If so then I don’t think they can refuse.

Others with more knowledge will come along soon with the guidelines you can quote

[Thyroid36 in reply to SarahJane1471]

I have been seeing him privately but he does work on the nhs in st thomas in London. Honestly it’s just disgusting behaviour . I’m so angry. Ah thank you yes I want to be 💯 certain with what I say to them! Thank you

[Sparklingsunshine in reply to Thyroid36]

In which case you would have to have been refered via NHS to see him, not gone to see him privately. Stupidly it sounds like you need to get your GP to refer you to him via the NHS route and once he agrees to prescribe T3 then he will write to your GP and the CCG will have to take over the cost. Nuts but that sounds like the way the rules are written.

[Thyroid36 in reply to Sparklingsunshine]

I’ve just read the document from the CCG for Kent and in various sections it’s referred to specialist, or consultant or endocrinologist or NHS Endocrinologist, no where does it say only an NHS doctor not a private specialist, so hopefully that will help, It has so many grey areas they are like insurance company pick and chose to pay out as and when it suits until u read the small print. 😂😂😂😂

[Hidden]

I say this very gently; don't speak to them while you're ragey. It won't go in your favour.

Give it a few days and let the rage burn off. You'll be left with a righteous anger let that fuel you instead!

[Thyroid36 in reply to Hidden]

yes hahahaha I always go by the Moto you get a lot more with sugar than you do with salt 😂 and it is true even if your right but speak in a horrible manor they will not help you! It is true I agree with you 💯

[Sparklingsunshine in reply to Thyroid36]

Or send an email which is more neutral. Witching is spot on. Tackling awkward things when you're furious can often backfire.

[Thyroid36 in reply to Sparklingsunshine]

yes great idea

[tattybogle]

Ah i thought that would happen when you said in last post that your endo had told GP to continue prescribing ... see TaraJR 's reply on your previous post healthunlocked.com/thyroidu...

your GP can't prescribe because that region has chosen to not allow it , they are not following national guidelines properly , but until they do .. they can't prescribe it to you , no matter what your endo requests .

Note .. even if they were following national guidelines , in most areas the protocol is that the initial prescribing (for a 'trial' ) and the request for GP to continue prescribing via Shared Care Agreement needs to come from an NHS endo seeing an NHS patient .. not an NHS endo seeing a patient privately ..... so even if you were registered with a GP in an area that is following national guidelines , they would still have to say no to a request from an endo who is seeing you privately. The endo would have to see you on the NHS . start the trial on the NHS . prescribe it themselves on the NHS for the duration of the trial . and THEN if trial was sucessful they can ask the GP to tke over prescribing under a Shared Care Agreement .

It does get very complicated , and hard to give correct details because the different regional areas make their own prescribing policies ... and about half of them are not (yet) following national guidelines properly.

i suggest you look at some of TaraJR's other posts for details, she is involved in the ITT Improve Thyroid Treatment) campaign ..if you contact them , they can help you understand what prescribing rules are being applied in your area .. and can let you know what needs to happen if you want to challenege them re. "not following national guidance".

[Thyroid36 in reply to tattybogle]

ah thank you so much! This is great i will go and take a look. Looks like I am going to have to continue the private prescription until I get it sorted! It’s just disgusting isn’t it.

[tattybogle in reply to tattybogle]

This is where to start i think .. see if you can find your area 'Kent and Medway '? in this document .. then you can see what their local rules actually are ... and then you can contact The Thyroid Trust as indicated on the links if you are being refused . (i'll have a look myself , in a bit . ) thyroidtrust.org/t3-news-an...

( Thyroid Trust org . T3 News and Resources )

[Thyroid36 in reply to tattybogle]

that’s a great idea ok thank you, I’m going to get my highlighter out and highlight all the sections and points.

Thank you so much !

[SlowDragon Administrator]

here’s the guidelines on liothyronine on NHS in England

sps.nhs.uk/wp-content/uploa...

It clearly states that we can only get prescribed on NHS if see consultant on NHS

A private consultation (even with an endo who also works on NHS) does not qualify you for NHS prescription

So you need Gp to do referral to your endocrinologist on NHS (may take a while)

[serenfach]

I cannot add to the brilliant advice above, but just to say I am furious on your behalf! I often wonder if the ratio of people who have thyroid problems were mostly men, whether the T3 thing would even be a problem.

When I have to tackle something like this, I channel Margaret Thatcher - cool, calm, dismissive.. I did not like her, but boy, did she make the men quake in their shoes!