Healthwatch Heroes award for Norfolk thyroid campaigners!

[TaraJR]

I hope it's ok to share this press release. And we'd LOVE it to inspire other people to campaign in their area - it CAN be done!

THYROID CAMPAIGNERS RECEIVE HERO AWARD FOR SUCCESSFULLY GAINING ACCESS TO LIFE CHANGING MEDICATION FOR HUNDREDS OF PATIENTS

Tracey Howlett and Tara Riddle have been awarded Healthwatch Heroes awards for their tireless work in their 6 year campaign to ensure all thyroid patients in their area were able to receive an important thyroid hormone that was previously restricted by their local NHS.

They were contacted by Healthwatch Norfolk saying they were to be given “Healthwatch Heroes” awards, to celebrate ten years of Healthwatch. They were delighted that their work to improve thyroid treatment for patients had been recognised, and gratefully accepted the award on behalf of the patients they represent. Healthwatch recorded a video about their work, and this was shown when they received their awards in October at Norwich Forum.

You can find their video here:

youtube.com/watch?v=EisBNwY...(Not working as expected?)...

When Tracey set up Thyroid Support Group Norfolk in 2017, Norfolk patients were not allowed access to the thyroid hormone liothyronine (T3). New patients were prevented access to the medication, and it was being removed from those already well on it. This significantly affected patients, so Tracey and Tara decided to try to challenge the system to make positive changes.

For the next 3 years, Tracey and Tara challenged the Norfolk CCGs’ position. It was a long hard journey! Several patients put themselves forward for radio and press interviews, and interest in TSGN grew fast. They say “After finally achieving a face-to-face meeting with the Norfolk Head of Medicines Optimisation and the Chief Nurse to discuss the issues, we could debate national guidelines at length. At last, we were met with a more supportive attitude; finally, everyone worked towards a common goal to make sure that those patients who met the NHSE criteria would be able to access T3.

At last, in May 2020 the ban on T3 in Norfolk was reversed and a clear patient pathway approved. We believe it was the first such approved pathway for T3 in the UK and still the only T3 national pathway. This was the start of T3 being prescribed to all patients who need it in Norfolk, and the end of the extreme difficulties many of those patients had experienced. We’ve heard heart-warming stories from patients who are now well on T3, which makes our campaigning so worthwhile.

Throughout our campaign, we had tremendous support from Healthwatch Norfolk who were pivotal in helping us navigate the CCG systems.”

In 2020 Judith Sharpe, Deputy Chief Executive of Healthwatch Norfolk said: “TSGN worked tirelessly on this important campaign; they operated with composure and dignity, sticking to the facts and the evidence to ensure all their information was accurate.”

Has your area got a T3 pathway, or have you contacted your local Healthwatch for help accessing T3? Tracey and Tara have shown that with persistent and well-informed advocacy, it is possible to navigate healthcare systems and create significant positive changes for thyroid patients. Their successful campaign provides a motivating example that determined efforts can indeed bring about impactful improvements.

Link to the Healthwatch Norfolk Live event

healthwatchnorfolk.co.uk/.....

9th October 2023

[SlowDragon Administrator]

Absolutely brilliant…..well done to you both

👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏👏

We need to get people involved with campaigning for this pathway in each and every ICB area (previously called CCG areas)

[Jaydee1507 Administrator]

Very well done!

[amala57]

Such tireless work from both of you. So well done! Thank you, thank you. 👏👏👏

[TaraJR in reply to amala57]

Thank you so much for starting this off! Six years ago - who'd have thought?!

[humanbean]

Congratulations! 😘👍

[Niteflite]

Well deserved. Thank you for all you are doing.

[1tuppence]

Congratulations. Amazing work. Thank you for all you do.

[JGBH]

Well done to you both! Thank you, The whole system needs to be shaken up. Better education for endocrinologists and GPs should be promoted.

[radd]

TaraJR

Extremely well deserved

👏🥇+ 👏🥇

[waveylines]

Fantastic!! Thank you for fighting so hard for better treatment for patients with Hypothyroidism. 🤗🤗🤗🤗🤗🤗

[crimple]

Thank you for working so hard on behalf of patients who need T3. I was so lucky to get T3 without too much of a battle with GP and local CCG. (there was a very good endo in the area who was on my wavelength)

[StillEverHopeful]

Echoing the thanks already said. A very big thank you.

[Agitator23]

Thank you on behalf of all hypothyroid sufferers. A result we can point to wherever we are in the country. You're an inspiration!

[Summer64]

Well done Tara and Tracey. Well deserved

[Fruitandnutcase]

That is nothing short of amazing isn’t it. Well done Tara and Tracey, what you have done is one giant step for thyroid patients. Thank you 💐

[Giulia12]

Wonderful! I am grateful to them both for being so determined in succeeding. I am grateful to this group as well for helping us navigate different problems that we have along the way.

[Suzi-B]

I love this article, i’ve been buying my T3 liothyronine from Turkey i’m Essex based

[Kowbie in reply to Suzi-B]

Hello suzi B hope you don’t mind me contacting you I’m in bury st Edmunds, was wondering if you could give me the details of the place and how much they cost please , ( hope you don’t mind )

[Annib1]

Absolutely brilliant! I think I should send it to Healthwatch Devon.

[TaraJR in reply to Annib1]

Please do. Please please do. HW Devon could always contact HW Norfolk about it.

[Bella59]

Well done ladies for achieving a great way forward for your area.Hopefully it may help to spread this to other areas in the not to distant future.Well deserved Award.

[wellness1]

Brilliant! Very impressive. Well done.

[nightingale-56]

Congratulations and well done Tara and Tracey. Do hope other Healthwatch groups take this on board.

[TaraJR in reply to nightingale-56]

Patients need to request the own Healthwatch groups to support this. Patients need to initiate it

[nightingale-56 in reply to TaraJR]

I did try a few years ago Tara, but they did not seem interested and then they changed people and the place it was held at. Thanks for all you have done for Thyroid Patients though.

[TaraJR]

Thanks for everyone's comments on this post. A few extra thoughts...

We worked very hard on Norfolk to achieve this result and, at the start, there was no national guidance on T3 apart from the 2017 NHSE consultation.

Now there are several pieces of guidance which can be quoted, and several statements given in the House of Lords by DoHSC. So patients in other areas can do what we did. Yes it's hard work, but we've proved it can be done! And it can benefit all patients needing T3 in your area. We've often said 'If 2 little ladies in Norfolk can do it, anyone can!'

We'd love more people to take this up. Working as a local group seems to have more impact. And setting up a group can be simple eg via Facebook.

The campaign group ITT Improve Thyroid Treatment has the 'Norfolk Toolkit' on suggestions of what to do, and links to all documents to quote.