New CCG guidance

[MissFG]

After speaking to my PCT Medicine Mgt twice today and my Endo’s secretary I’ve found that it’s the hospital that have blacklisted my Endo being able to prescribe me T3.

They obviously haven’t updated the hospitals policy based on the new guidelines introduced for the CCG - do they even have to is my question? Or if they do I’m sure they will drag their heels!

I’m going to write to my Endo including a copy of the new guidelines and want to include evidence to say they are in breach of my human rights blacklisting T3 when it can be prescribed to those with a proven clinical need on prescription on the NHS by my Endocrinologist. They have removed any responsibility from my Endo to make that decision and blocked it for everyone - not taking into account mine or anyone else’s individual physical needs.

Please can anyone direct me to where I can find evidence to show they are breaching my human rights so I can include this in my letter and hopefully save me some time. Many thanks

[shaws]

I believe that many Endocrinologists no longer prescribe T3 to their patients. Despite the advice that patients who had improved on it shouldn't have it withdrawn. I think many might have been waiting for an excuse not to prescribe.

[MissFG in reply to shaws]

My Endo has been battling the blacklisting and wants to prescribe it. His hands are tied by the hospital which has removed any responsibility from him.

[shaws in reply to MissFG]

It must make doctors very angry when they want to prescribe a prescription for a patient but they have had permission withdrawn. I think that they also put their livelhioods in jeopardy if they don't toe the line.

Even though articles like the one below are ignored.

btf-thyroid.org/information...

[MissFG in reply to shaws]

Luckily I have a good Endo however not beneficial when due to cost he can’t prescribe it. Even Medicine Mgt were really understanding and good over the phone. When I explained my bloods ie poor conversion plus ultrasound results showing thyroiditis after 8 months on levo I have a clear clinical need. My Endo agrees but even with the new guidelines the hospital are overriding the CCG. That’s why I need to go down the NHS Constitution and challenge the hospital with negligence etc

Think I’m well enough for a battle now especially as I know potentially I should be able to get it and even the CCG agrees!

[shaws in reply to MissFG]

We will all be awaiting the outcome of your case. It is anger which drives us on and being denied life-giving hormones even though thousands seem to do well on levothyroxine but there are a group who cannot.

[MissFG in reply to shaws]

Well I’m confident in how I can present my case in writing and believe my clinical evidence would be sufficient for at least a trial of T3. Any if I hit a brick wall I’m quite happy to find a solicitor who I hope might take my case on for neglect by the hospital. This situation has to be resolved

[shaws in reply to MissFG]

It is nothing but cruel and regulations are made by those who we expect to know better. Even when the T3 was much cheaper they still stuck to levo only.

I do hope you have success in being prescribed T3.

[MissFG in reply to shaws]

One of us sooner or later will make a break through and hopefully that will set precedence for others

[amasufindme]

HI MissGF,

... please try facebook.com/groups/ITTCamp...

Thyroid HUB UK facebook.com/groups/1360871...

as there are a lot of peeps on these two FBs that are on the pulse as it were although they may just catch you here on HU TUK!

Best wishes

[MissFG in reply to amasufindme]

I’m not on Facebook but thank you. I have now found the NHS constitution which I can use 😊

[amasufindme in reply to MissFG]

Ok MissFG ... I set up my FB account with anonymity simply to connect with all these groups.

So my humble take on the situation is if your Endo and GP both support you and presented a clinical need then the hospital cannot withhold the T3 prescription...however if the CCG has blacklisted then your GP needs to apply for independent funding (?) for your T3 prescription. As my GP pointed out this drug Liothyronine is in the BNF and therefore should be prescribe if clinical need has been demonstrated and the NHS constitution has the phraseology to assert duty of care.

Legally I don't understand what is happening and if someone with resources can present this as a test case, with breach of human rights, and set precedence that would help our plight enormously.

I have been fighting for clinical need with my DIO2 gene polymorphism and robust anecdotal evidence of benefit with combination therapy. I know that my Endo has been pressurized to remove T3...luckily my GP has more of a backbone and has said that as long as the Endo keeps prescribing he will follow and also that Jeremy Hunt needs to stand up in Parliament and state the nationwide withdrawal of the drug...from the BNF.

Hope this helps!

The two FBs have a lot of resources -files, facts, templates - you can use

[MissFG in reply to amasufindme]

GP’s can’t prescribe T3 as it is required that a specialist ie Endocrinologist has to prescribe it as they need the knowledge to identify a clinical need and supervise the patient undergoing treatment - This I agree with and want my Endo to look after me. My Endo also wants the power to prescribe T3 where he identifies a clinical need for the patient.

The CCG based on new guidelines agrees the above and although T3 is still red lighted they confirmed the above new guidance to me.

Where I have the problem is the Hospital has blacklisted the prescribing of T3 and withdrawn the power from my Endo or any Endocrinologist to prescribe T3 to anyone. This now goes against the new guidelines. So I believe means they are breaching the NHS Constitution.

The new guidelines were only published recently so maybe the hospital have yet to update its policy on this. I was also advised by my Endo’s secretary that all applications for funding have also been rejected so that isn’t even a route I could go down with any success at this stage. Maybe now is the ideal time to begin to force their hand!

[amasufindme in reply to MissFG]

This is the petition you might like to sign and share

change.org/p/itt-campaign-g...

[Clutter]

MissFG,

The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association...

CCGs are expected to do impact consultations with the public and stakeholders before implementing change. Failure to do so leaves them open to legal challenge so check whether your CCG did an impact consultation before advising your hospital to withdraw T3. You might be able to check whether the hospital did an impact assessment if it was their decision to withdraw T3 prescribing.

mills-reeve.com/files/Publi...

[MissFG in reply to Clutter]

Does it matter that I was never prescribed T3 personally as it was already red lighted in December 2017 when after months of not improving and an ultrasound showing I still had thyroiditis on levothyroxine I decided to self medicate?

[Clutter in reply to MissFG]

MissFG,

Yes, it matters. If you were never prescribed T3 the hospital/CCG hasn't withdrawn your prescription.

I don't know how it stands if your endo has told you that you need T3 and the hospital won't permit it to be prescribed.

[MissFG in reply to Clutter]

Yes I’ve spoken to him and he agrees it’s outrageous. He had 7 patients including myself 3 have bought it privately so he can still monitor them myself and the others can’t afford to. I’ve not been discharged they are waiting on file for me to state if I’m buying the UK licensed T3 or not so I’ve said I’m don’t want to be discharged and I will put a letter in writing based on the new guidelines

[Clutter in reply to MissFG]

MissFG,

Why don't you say you are getting UK licensed T3 privately but use the prescription to buy Thybon T3 which is €35 for 100 x 20mcg, or buy 25mcg Tiromel or Grossman Cynomel online. The blood tests won't tell which brand you are taking.

[MissFG in reply to Clutter]

Because he can’t prescribe for me privately maybe he only works for the NHS not private practice. He said he could refer me to a private Endo but it also has to be a UK licensed T3 which as I understand is only one which is the one the NHS prescribe that’s expensive

[Clutter in reply to MissFG]

MissFG,

There's nothing to stop you seeing your own private doctor without referral from your endo or the hospital. There's nothing to stop you saying the T3 you are prescribed is UK licensed unless they ask for sight of the prescription or the actual tablets you are taking.

[MissFG in reply to Clutter]

That’s very true however I want to be honest and I genuinely think I’m entitled to the treatment and aftercare on the NHS and shouldn’t have to lie to get it.

However the CCG did say that as long as I am being prescribed a thyroid drug my GP would have a responsibility to look after me and do regular bloods. So in this case I will just start taking a low dose of levo so least I still get my bloods done and I’m supervised. However when I started talking to my GP today he was lost and didn’t have a clue about bloods levels dosage etc so I literally knew more than him! Worrying isn’t it

[MissFG in reply to Clutter]

Plus the CCG have only red lighted T3 the hospital have black listed it. Medicine Mgt confirmed that following the final publication of the consultation an Endo can prescribe it now if there is a clinical need. Mine can’t as the hospital won’t let him

[MissFG]

I will once written to the hospital

[Musicmonkey]

MissFG you are in a similar position to me in that my Endo is happy to oversee me on T3 (in combination with T4). I have meticulous records showing I have come to no harm on it and I have the DIO2 polymorphism. I have been acqiring my T3 privately though.

My CCG have not yet responded to the NHS England Consultation. What is the position that CCG's are taking in response to the Consultation?

[MissFG in reply to Musicmonkey]

Has your Endo acknowledged your DIO2 gene? My Endo said it’s not recognised and wouldn’t help me get T3 so I didn’t want to waste my money or go through the hassle of getting it.

Fortunately my CCG seem up to date and was very understanding and support the final Consultation Report. Quoting it to me. Based on this I’ll write to the hospital because them blacklisting T3 is now totally against the new guidelines.

[Musicmonkey in reply to MissFG]

Not exactly. I have shown him my test results and he seems to sit on the fence about it, but I am grateful that he does take note of my symptoms in conjunction with my blood test results.

Which is your CCG? I might have to move!! 😀

[Flecmac]

Where can I find the new CCG guidelines please?

[MissFG in reply to Flecmac]

england.nhs.uk/wp-content/u...

This is the final consultation report - see pages 19 & 20

[Musicmonkey in reply to MissFG]

But I think many CCG's are interpreting this advice in different ways, not always to benefit patients.

[MissFG in reply to Musicmonkey]

I think it puts the onus back onto the Endocrinologist and as long as there are clear clinical evidence and the patient has been on levo at least 3 months it’s down to their discretion.

However if hospitals block this by blacklisting T3 that’s a whole new issue which I’m facing but have the report I can use against them.

Have it spoken to your CCG Medicine Mgt about the final report? It was only published recently

[Musicmonkey in reply to MissFG]

They've had their meeting, but the minutes are not yet available

[MissFG in reply to Musicmonkey]

You might find they have he same stance as my CCG then! Fingers crossed all CCGs are consistent on this

[Musicmonkey in reply to MissFG]

I very much hope so!!

[Flecmac in reply to MissFG]

Thank you!!!