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......
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
Return to Patient-Centred Treatment and not before time!
