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T3 Campaign Car Sticker

Thyroid UK's #T3Campaign

As you are no doubt aware, NHS England has been asked by Clinical Commissioning Groups to undertake a consultation for their guidance on “Items which should not routinely be prescribed in primary care.”

Liothyronine (T3) has been listed due to it being an item under the category, “Items which are clinically effective but where more cost-effective products are available, including products that have been subject to excessive price inflation.”

Thyroid UK is a stakeholder of this consultation and will be attending meetings and participating in the consultation.

However, the first point we want to make is that CCGs across the UK have already decided that T3 should not be prescribed and have informed all surgeries and hospitals in their area to stop prescribing and withdraw T3 from patients who are already on it (which we consider unethical).

CCGs do not have the legal right to order clinicians to stop prescribing or withdraw T3 from patients.  The final say on whether a doctor should prescribe lies with the doctor himself.  However, many doctors may be worried that they could get into trouble for prescribing T3 and are therefore doing as they are told by the CCGs.

We are aware that some patients have appealed to their local CCG and have been re-prescribed their T3 so it is worth fighting the decision.

Thyroid UK is running a campaign to stop the NHS cost-cutting exercise and to fight for patients’ rights in regard to receiving an effective diagnosis and appropriate treatment for people with thyroid disorders in the UK, and we need your help to do this.

Our campaign consists of the following activities for you to take part in:

Contact your MP – use our template document here to help you

If you can, please make an appointment to see your MP to discuss your thyroid health and treatment (or non-treatment) or withdrawal of T3 (liothyronine).  Face to face meetings are more likely to make your MP sit up and listen and want to help you.

We are targeting the Secretary of State for Health and the Minister of State for Health.  We will be sending emails out to those of you in their constituencies to ask that you try to make an appointment to see these MPs.

However, we also need MPs across the whole of the UK to be contacted rather than lots of people in the same area contacting the same MP.

Alternatively, write a letter and send it to your MP at House of Commons, London, SW1A 0AA or send it by email using the points and references in our template here.

We want to keep a note of all MPs who have been contacted either in person or by letter to ensure that every MP in the UK has been contacted at least once. 

Please let us know which MP you have visited or written to and send a copy of any response you receive to enquiries@thyroiduk.org
If you have already written to your MP please send us copies of your letter and any response you have received.

To find out who your MP is and to get their contact details (telephone number and email address) go here: http://www.parliament.uk/mps-lords-and-offices/mps/

Discuss with your GP – use our template letter

If you have had your T3 withdrawn, don’t give up.  Collect any evidence you can gather about why you need T3 including any test results that show you either have the DIO2 polymorphism and/or low T3 levels as well as a list of symptoms that improved when you started taking T3.

Make an appointment to see your GP and make sure he receives your letter a few days beforehand.

If you manage to get a prescription from your GP for the Thybon-Henning or Sandoz brand you can take this to your local pharmacy or go to our forum for more information on how to access these with a prescription – www.healthunlocked.com/thyroiduk

Click here for a template letter to your GP. (Word Document)

Take part in our survey – we will let you know when this is ready

Our survey will be asking relevant questions about the treatment (or non-treatment) of T3 and withdrawal of T3 from patients.  There will also be questions about the burden and impact of this on patients.  We will be sending the survey reports to all relevant bodies.

Take part in the NHS England consultation

Make sure you mention the points in our template for your MP -
https://www.engage.england.nhs.uk/consultation/items-routinely-prescribed/ -

Attend one of the Face to Face Meetings or the Webinar organised by NHS England:

    • 5 September 2017 10:00am – 12:00pm at the Grange Holborn Hotel, 50 - 60 Southampton Row, London WC1B 4AR
    • Webinar - 10 October 2017 1:00pm – 2:30pm (WebJoin link: https://www.webjoin.com/ Participant passcode: 68479351, Leeds)

Purchase a limited edition #T3Campaign car sticker and place it in your car.  

These car stickers have been designed for us by Alex Davies and you can place one in your car or in any window in the house where passers-by can see them.  Why not buy one for friends and family too!

To purchase a car sticker click here

What Thyroid UK is doing:

As part of the #T3Campaign Thyroid UK is communicating with various bodies regarding this situation such as National Voices, an umbrella organisation that helps charities to engage more effectively with policy makers.

Thyroid UK will also be writing to various other relevant bodies such as the Chief Medical Officer, NHS England, Healthwatch etc. and doing a media campaign so if anyone knows a journalist who would be willing to interview myself or a patient about this, please let me have their contact details.

To try to change the current situation, Thyroid UK has had several talks with Concordia International and how we can help patients.  During these meetings, Concordia International explained several aspects of producing T3 such as the fact that the MHRA changed the standards in respect of the manufacture of this drug and how difficult it is now to produce. These standards are very strict which may be why T3 made in other parts of Europe is much cheaper.  Thyroid UK has contacted the MHRA about this.

Please help us fight this injustice!