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#T3 Campaign Updates

 

27/11/2018

All groupsThyroid UK, along with other thyroid groups including the British Thyroid Association, has worked on a dossier that was requested by the Lord O’Shaughnessy, the Parliamentary Under-Secretary of State for Health and Social Care. 

He wanted to see clear evidence that NHS England Guidance was not being followed by CCGs in respect of the prescribing of liothyronine and this is what we were able to give him.

 

A joint press release has been published to raise awareness of the dossier which you can read here

The dossier can be found here: www.bit.ly/LiothyronineDossier2018

If you are in contact with any journalists, do please send them the press release with a link to the dossier (the document is too large to send via email or to print).

If your MP was sympathetic or interested in this issue, please send them a link to the dossier and ask them to contact Lord O’Shaughnessy for an update.

A meeting is now being organised with NHS England so hopefully, the dossier has given enough evidence to make change.  We’ll keep you informed.

 


 

19/10/2018

Logos

 

The dossier of evidence requested in the Regret Debate led by Lord Hunt in respect of liothyronine has been worked on for many weeks by Thyroid UK, The Thyroid Trust, Improve Thyroid Treatment Campaign Group, Midlands Thyroid Support Group, British Thyroid Foundation, Thyroid Patient Advocacy and Thyroid Support Group Norfolk and the British Thyroid Association.

The dossier includes evidence that NHS England guidance is not being adhered to in the form of patient letters and other documents.

The BTA have said that, "...it looks like a powerful document." so we are very hopeful that this will be the beginning of change in respect of options for treatment for hypothyroidism.

The dossier has now been sent to the Lord O'Shaughnessy, Parliamentary Under-Secretary (Department of Health and Social Care).

It is embargoed for the time being but will be disseminated as soon as the embargo is over. We will keep you informed of progress.

 


 

20/07/2018

Very good meeting at the House of Commons with Thyroid Trust, ITT, Midlands Thyroid Support, Norfolk Thyroid Group, TPA, BTF and BTA.

It was agreed that we would all work on a document with evidence for Lord O'Shaughnessy regarding CCGs not adhering to NHS England guidance on liothyronine.

It was very good to meet up with people we have been working with and to meet them all.

I had a chat with prof Krishna Chatterjee after the meeting. Now to get to work!


 

25/06/2018

House of Lords logo

Debate in House of Lords 20.6.18

As you may know, Lord Hunt of Kings Heath led a regret debate in the House of Lords on Wednesday 20th June, which went really well.

What you may not know is that the person who actually first brought the whole problem to the attention of Lord Hunt was a lady called Kath Bell who was a colleague of Lord Hunt and who had been in touch with me for a little while. Kath has hypothyroidism and has had problems with treatment, like so many of us.

Lord Hunt was very interested in the plight of thyroid patients and contacted Lyn about having a meeting and the rest, as they say, is history.

I travelled to London on 20th June and met up with Kath and we travelled together to meet with Lord Hunt prior to the debate.

We were taken into the House of Lords dining room where we had tea and went through the final draft of Lord Hunt’s speech.  One of the things that he was shocked about was the fact that the Brighton and Hove Hospital NHS Trust were telling patients in an information document that the only way they could access T3 was via a private endocrinologist which goes completely against the ethos if the NHS and I’m so glad that he used this in his speech.

We discussed a few more things and then he gave us a tour of the House of Commons, which was very interesting and very good of him to do.  He then took us to the debating chamber and went off to write the final document.

As we listened to the debate we were so pleased to see the number of other members joining the debate, two of whom had thyroid disease and could really relate to our plight.

After members had spoken, the Lord O’Shaughnessy then stood up and started to speak.  I was very pleased to hear him say, “I want to touch on one other area that my noble friend Lord Borwick described, and that is the poor understanding of that group of the population who are not able to turn T4 into T3. He mentioned that there might be a genetic factor and I would be interested in pursuing that further. Clearly, some very interesting work on rare diseases is going on in the NHS at the moment through the 100,000 Genomes Project. This might be a qualifying illness where the conversion does not take place naturally, and that might be something that we can pursue. I will take that up with him separately.”

At the moment the DIO2 genetic test is not done on the NHS and this may now mean that more research will take place into one of the reasons patients cannot convert very well as well as other reasons for non-conversion.

After the debate was over, he said a quick goodbye with promises for meeting up again once he had mulled over what the next step could be.  I am pleased to say that he contacted me the very next day informing me of his next steps and as soon as I know this has been confirmed, I will let you know.

After the debate we met up with Lorraine Williams from The Thyroid Trust and a patient called Patsy, both of whom I’d had contact with previously.

Photos were taken outside the House of Lords and we then went out for a meal to discuss everything.   We were so excited because the debate brought out all of our concerns and it seems that the Lord O’Shaugnessy took them very seriously.

Thyroid UK and ITT held a meeting with NHS England to discuss the ambiguity of their decision and it was agreed that Thyroid UK and ITT would send them a report of the problems thyroid patients are facing along with some recommendations.  they were going to discuss this with their clinical working group.  We are still awaiting a response but I will be sending the Hansard of the debate and mentioning something else the Lord O’Shaughnessy said, “Tonight, I will commit to pursuing further with NHS England ways in which they can clarify to CCGs the guidelines setting out the circumstances under which liothyronine should be prescribed, including looking at whether greater clarity on the criteria for appropriate patient usage is merited. I will also inform the House—through a letter to the noble Lord, Lord Hunt, a copy of which I will place in the Library—about the progress that we are making on the regional medicines optimisation committee.”

I actually feel more optimistic today than I have for a couple of years and I’ll keep you informed of progress.

Lyn Mynott, CEO, Thyroid UK

Hansard (Hansard is a substantially verbatim report of what is said in Parliament)
for this debate can be found here:
hansard.parliament.uk/lords/2018-06-20/debates/5A689F14-D2F8-4796-8732-CBD0E3B3E508/BrandedHealthServiceMedicines(Costs)Regulations2018

Photo: Lorraine Williams, The Thyroid Trust; Kath Bell, Lyn Mynott, CEO, Thyroid UK



13/06/2018

Debate in House of Lords

Lord Hunt of Kings Heath has secured a Motion to regret - Branded Health Service Medicines (Costs) Regulations 2018 on Wednesday 20th June in the House of Lords at around 7pm.

calendar.parliament.uk/calendar/Lords/All/2018/6/20/Daily#topSpeakers21229

The actual Motion is:

Lord Hunt of Kings Heath to move that this House regrets that the Branded Health Service Medicines (Costs) Regulations 2018 do not propose any action to be taken in respect of the high cost charged by Concordia and other companies for the drug Liothyronine for the treatment of hypothyroidism thereby depriving patients of the use of that essential drug, and further do not put an end to the practice of a growing number of Clinical Commissioning Groups refusing to follow the latest guidance from NHS England on making that drug available to NHS patients via referral to thyroid specialists (SI 2018/345).

Lyn Mynott will be having a meeting with Lord Hunt prior to the debate and will also be attending the debate.

We will keep you informed of what happens.


22/05/2018

NHS England logo

Thyroid UK and ITT travelled to London yesterday to meet with NHS England and NHS Clinical Commissioning to voice our concerns about T3.

The meeting was attended by Julie Woods, CEO of Clinical Commissioning and Alex Williams, Deputy Director, Medicines Policy at NHS England.

We put forward concerns including the fact that the NHS England decision was not clear and that many CCGs are not following the NHS England consultation decision which has caused many patients to have their T3 withdrawn.

Alex Williams stated that this was not the intention of NHS England and that they thought the wording was clear but now realise that it needs clarification

The clinical working group are holding a meeting on 6 June and it was agreed that Thyroid UK and ITT would provide some input to this meeting with the intention of giving clearer guidelines to CCGs.

We will keep you informed as to progress.


15/05/2018

UK Parliament logo

Debate in Parliament on Hypothyroidism

An adjournment debate has been tabled by Vince Cable MP, Leader of the Liberal Democrats for Monday 21st May at 2.30pm, so we have designed a template email that is shorter than the other one and includes the debate info.

Please click here for the template


16/04/2018

T3 Campaign Car Sticker

We need your help!

Please contact your MP

We are pleased to tell you that Thyroid UK has been working with ITT (Improve Thyroid Health) and TPA (Thyroid Patient Advocacy) on a joint report entitled
"Improving T3 Prescription in the UK – a Joint Campaign on behalf of Thyroid Patients"
which has been sent to Mr Simon Stevens, CEO of NHS England and Professor Sir Malcolm Grant CBE, Chair of NHS England Board.

Lyn Mynott met with the Rt Hon Lord Philip Hunt of Kings Heath PC OBE, Opposition Spokesperson on Health, Higher Education and Cabinet Office on 22nd March who has put down on the order paper a regret debate regarding the high cost of T3 and the fact that a growing number of CCGs are refusing to follow the latest guidance from NHS England.

If you know of any Lords, please do contact them and let them know about the regret debate which will hopefully happen sometime this month. Also let me have their details so that I can let Lord Hunt know.

More good news, ITT recently met with Vince Cable, party leader of the Liberal Democrats, and he has offered to try to get a members debate on the subject of T3.

Thyroid UK and ITT have worked together on compiling a list of MPs who have been supportive to their constituents in regard to their plight and this has been sent to Vince Cable.

We now need you to help by writing to your MP sending the joint report which you can download from here.

We have designed a template to make things easier which you can download from here
Delete the parts of the template that you don’t need and either send it to your MP by email or by post.

Alternatively, you can use this template which is more concise and may be easier to use.

You can find your MPs contact details (telephone and email) here:
www.parliament.uk/mps-lords-and-offices/mps

Please help us with this as it is the perfect opportunity to
stop the CCGs withdrawing T3 from us.

 


30/11/2017

NHS England logo

NHS England gave its decision at a board meeting this morning about whether liothyronine will be deprescribed by the NHS:

Liothyronine
15. Of those respondents who either agreed or disagreed with the recommendations, only 16% agree that CCGs should be advised that prescribers in primary care should not initiate Liothyronine for any new patients.

16. The main recurring theme – particularly from patients and organisational bodies - is that this is an effective treatment which can, in the appropriate circumstances contribute to patient wellbeing, quality of life and condition management. The impact on particular cohorts of patients was also highlighted - notably those who are unable to take Levothyroxine-T4, or whose metabolic pathway is impaired in some way.

17. The joint clinical working group therefore recommended the prescribing of liothyronine for any new patient should be initiated by a consultant endocrinologist in the NHS, and that de-prescribing in ‘all’ patients is not appropriate, as there are recognised exceptions. The recommendation would therefore be changed to advise prescribers to de-prescribe in all appropriate patients.

Thyroid UK is not happy with the word "appropriate".
They have not explained who would be "appropriate" to remain on T3. The definition of "Appropriate" is very subjective and NHS England should have gone further and explained that patients who do not do well on levothyroxine should be given a trial of T3.

The section of liothyronine is very interesting and shows that not just thyroid patient groups wanted to see liothyronine continued.

I would like to say a big THANK YOU and WELL DONE to everyone who supported our campaign and who took part in the consultation.

Now is the time for patients who have been de-prescribed to go back to their GP/Endocrinologist and show them the NHS England decision and push for having it represcribed again. 

Patients who are not well on levothyroxine now need to push for an endocrinologist appointment for a trial of T3!

This doesn't mean that Thyroid UK will stop campaigning as we really want T3 to be tested as routine in all patients and trials of T3 given more readily.  Then, of course, there's the fight to get the price of T3 reduced!
You can read a transcript of the meeting here: https://www.england.nhs.uk/wp-content/uploads/2017/11/05-pb-30-11-2017-items-which-should-not-be-routinely-prescribed-in-primary-care.pdf


23/08/2017

T3 Campaign Car Sticker

Thyroid UK Launches

#T3 Campaign

Click here to read the full details