Update on #T3Campaign

[lynmynott]

You may be aware that a coalition of thyroid organisations, including the British Thyroid Association (BTA), worked together on a Dossier for the Lord O'Shaughnessy in respect of the harm being done to patients in respect of the NHS England guidance on liothyronine.

After the publication of the Dossier, the Regional Medicines Optimisation Committee (South) (RMOC) published their own guidance which was felt by all the thyroid patient organisations to not be in line with the NHS England guidance. This guidance was then available for all CCGs in their area to use.

Since then the patient organisations and the BTA have been talking with NHS England, the outcome of which was that they agreed to clarify the RMOC guidance.

We know that many patients are still having their liothyronine withdrawn or not being referred to endocrinologists for a trial and this is not acceptable.

However, we are also hearing, at long last, that some CCGs are recognising the need for liothyronine by some patients.

Hopefully, the clarification of the RMOC guidance will enable patients to have their liothyronine reinstated and trials to be given to patients who do not resolve all of their symptoms with levothyroxine.

The RMOC have published a small article in their March 2019 Newsletter as follows and we look forward to giving feedback to the draft. We will keep you informed of progress.

Liothyronine

The RMOC guidance concerning the prescribing of liothyronine was published in November 2018 in order to provide advice to CCGs regarding the application of the national NHS England and NHS Clinical Commissioners’ guidance: ‘Items which should not routinely be prescribed in primary care: Guidance for CCGs’ which had been published in November 2017 (available at england.nhs.uk/wp-content/u....

Following the publication of the RMOC guidance, variation in practice was documented in the House of Lords dossier entitled ‘Case Details with Clear Evidence that NHS England Guidance on Prescription of Liothyronine is not Being Followed by CCGs; Evidence in Response to a request from The Lord O’Shaughnessy, Parliamentary Under-Secretary of State for Health and Social Care’ (btf-thyroid.org/images/docu....

The RMOC guidance was discussed with key individuals including senior clinical and academic representation from the British Thyroid Association. The reduction in variation of practice as a result of implementing the RMOC guidance was welcomed, but clarification was requested concerning some of the statements in the RMOC document. The document is being considered in light of the House of Lords dossier, with the aim of providing clarification rather than a change in guidance A draft revision of the published RMOC guidance, with clarification of the wording, has been discussed at the South RMOC and is currently being circulated to the South RMOC for review. This will then be circulated to other RMOCs for comment.

[Hennerton]

Thank you, Lyn, for all you have done on this travesty and we can only hope that slowly the tide is turning in our favour.

[NWA6]

This sounds good? Is there any way to share or a link to try and get more support out there? I feel like lots of people talk about mental health and Fibro and CFS but people draw a blank when Hashimotos is mentioned. What campaigns are there for my friends and family to sign up to?

I’m 10yrs diagnosed but only now trying to take charge and educate myself.

[lynmynott Partner Thyroid UK in reply to NWA6]

Unfortunately, Thyroid UK can only deal with one campaign at a time as we are a small team. Once the #T3Campaign is finished, we will be looking at other campaigns. Sad to say, there are so many things that need campaigns - lack of prescribing of NDT; not understanding Hashimoto's; excipients within thyroid medications; test results being misinterpreted etc. etc.

[NWA6 in reply to lynmynott]

Sorry I don’t understand your reply. Maybe my own response was confusing. I want to spread the word about the T3 campaign. I think I need it to be well so I’m stuck in a system of T4 only that doesn’t work for me. I was just asking if there are any links that I could post on Social media to try and draw peoples attention to what is happening to us Hypothyriod people.

[lynmynott Partner Thyroid UK in reply to NWA6]

Sorry, Paula6, I thought you meant campaigning about Hashimoto's!

You could post links to our campaign page - thyroiduk.org/tuk/campaigns... and to our car sticker - thyroiduk.org/tuk/tuk_shop/...

You could share our Facebook posts and retweet our tweets if you are on Twitter.

Thanks for your support!

[NWA6 in reply to lynmynott]

That’s great. Thank you. Thank you for your support! I’m so grateful for people like you 🙌

[sy28]

Thank you, Lyn, but crucially isn't it disappointing it states 'rather than a change in guidance.'

[lynmynott Partner Thyroid UK]

I'm not allowed to say anything about that!

[africa75]

Hi Lyn - you really do speak for all of us ; thank you. I've been on combination therapy T4/T3 for 5 years...the local GP surgery have refused me a T3 script they tried to refer me to an Endo who refused outright to give me my T3 and cancelled the appointment. I then sent the surgery the RMOC guideline along with a letter ; they brushed both aside and fobbed me off. I then drafted a letter to the CCG along with all the correspondence between myself and the surgery/ endo. The surgery has now finally agreed to grant me a temporary T3 script "to tide me over" until I see the NHS Endo (whom told the GP on the phone that he "doesnt believe in T3") ; its taken 2 months of fighting to get my script issued.

[MissGrace in reply to africa75]

‘Doesn’t believe in T3?’ It’s a drug not a bloody religion. What a pompous tw*t. Take a packet to show him - see Mr Endo - you have to believe it now - it really does exist. Nothing like a closed mind in the medical profession to promote patient wellbeing. 🤸🏿‍♀️🥛

[crimple]

Thanks for posting Lyn. I know the guidance to CCG's is a different campaign to the cost of T3, but it is the cost of T3 which has resulted in CCG's not doing what they should, that is prescribe T3 to those who need it.

So what is happening about the rip off charging to NHS for UK T3? What has happened to Competition and Markets authority investigation?

I have just received my second order of T3 from Germany, Thybon Henning which costs me under £50 including p&pfor 100 x 20 mcgm tablets. Boots told me I would have had to pay £1000 for the scrip from them. Even if we have Brexit, I can't see the price reaching what UK companies charge. We are in the usual lottery. Those who can pay can pay, those who can't pay can have an existence.

[holyshedballs in reply to crimple]

The CMA is s till carrying on with its investigation. It has widened the scope of its investigation which suggests to me the the evidence is strong, otherwise they would have closed the investigation. Unfortunately these cases take a long time because the companies have a righto f reply and also a right to appeal, while selling vital medication at inflated prices until told not to.

[helvella Administrator Thyroid UK in reply to crimple]

Your problem will be that German pharmacies will not accept UK prescriptions. They do so now under EU cross-border prescriptions rules/agreements.

[crimple in reply to helvella]

Yes, I wondered if that would be the case. I have enough T3 now for 18 months if I don't have to up my dose! I will be ready to fight my corner with CCG as Endo endorsed my use of T3 just wouldn't prescribe it! Just hope CMA comes up with goods before then!