Wow! What a busy month we’ve had at The Thyroid Trust. Things have been moving so quickly we’ve only just got a chance to update you all on what’s been happening. Thanks to volunteer Nicky Mailey for kindly writing this report.
Liothyronine (T3) prescribing advice – Meeting with Lord Kamall
As many of you are aware, the prescribing of liothyronine (T3) for hypothyroidism is a a post-code lottery with large numbers of CCGs misinterpreting or ignoring national guidance. We were therefore incredibly grateful when our tireless supporter, Lord Hunt, raised this in the House of Lords during discussion of the Health and Social Care Bill on 26th January, robustly supported by Lord Borwick. Following correspondence from Lord Hunt to Lord Kamall, Minister at Department of Health and Social Care (DHSC), The Thyroid Trust, together with Lynn Mynott from Thyroid UK, were invited to attend a meeting with Lord Kamall and DHSC officials, Lord Hunt and Lord Borwick.
The meeting was very constructive, and officials listened to four key asks;
DHSC have offered in the first instance to liaise with National Institute for Health and Care Excellence (NICE) and it is our expectation that they will ensure that the NICE guideline is updated to provide clear and explicit signposting to the RMOC recommendations in the body of the guidance, to clarify that whilst liothyronine may not be routinely prescribed in primary care, it is not banned and absolutely can be prescribed where the clinical need arises.
We think this a breakthrough in our efforts to ensure patients have access to liothyronine and we will be watching this situation carefully. Hopefully, we will be able to update you over the next few months with more good news on this front.
Face to Face Meeting 26th February 2022
We were delighted to be able to host our first face to face meeting since before the pandemic, on Saturday 26th at Crown Court Church, London. We are most grateful to Lord Borwick who kindly gave up his time to talk to attendees and update everyone on the recent developments with T3 highlighted above. We didn’t broadcast the event as it was not practical to do so as we wanted everyone to be able to relax and focus on being in the space, unrecorded, but we do have another online event coming up later this month, which will also be available to watch online afterwards.
Systems Modelling and Quantitative Biomedicine Workshop
This week we have been invited to attend a two-day workshop bringing together science, patient and public communities to bridge understanding and build greater trust and transparency in mathematical and computational approaches to solving medical and healthcare challenges at the University of Birmingham. We were privileged to be invited but unfortunately Lorraine was unable to take up her place as she tested positive for COVID the Saturday before (also missing our London meeting for that reason). We hope to be able to share a report from the meeting from another attendee in due course.
Date for the Diary 29/3/22 – Interview with Billy Kenber
For those of you who have been following the Liothyronine price increases story, Billy Kenber will be no stranger. He is a Times and Sunday Times journalist whose determined investigative journalism uncovered the pharmaceutical industry’s strategy to maximise their profits by increasing prices for generic medicine and broke the story in 2016. Billy’s evidence was key in the Competition and Markets Authority’s subsequent determination in handing out £100m fines to the original sole licence holder for liothyronine and their backers.
We will be interviewing Billy and discussing his book “Sick Money – The Truth about the Global Healthcare Industry” on Zoom on the evening of 29th March 2022. Do join us if you can. We simply request a donation of any amount to secure your place.
Book via Eventbrite
Our First Ambassador – Michael Rosen
We are proud to announce our first Ambassador is the distinguished and much loved author, Michael Rosen, who has hypothyroidism. It took 15 years for Michael’s condition to be diagnosed, something which many members may relate to.
He has written a moving prose poetry book “This is Not My nose” about his experience and recovery.
You can find a copy of our “TTT 24 questions” interview with him and a copy of a new poem he wrote last year about hypothyroidism which he contributed to special issue of Fahmidan Journal, published in World Thyroid Day at The Thyroid Trust website https://www.thyroidtrust.org/michael-rosen.html
Application to become a Society of Endocrinology Approved Patient Group
We have been in recent discussion with the Society of Endocrinology to become recognised as an approved patient group, following previous discussions before the pandemic. We are hopeful that this approval will be forthcoming which in turn would enable us to apply for funding from the Society.
As ever, we are grateful for all the time and effort our volunteers provide. But as a small charity we are always looking for more support. In particular we are looking for people with time to spare and expertise in bid writing and PR skills. Please let Lee know if you can help in any way by emailing firstname.lastname@example.org
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This blog is by members of Thyroid Trust Friends Network who have signed up to our Ground Rules and blogging guidelines. Please get in touch if you'd like to write something for possible publication on our site.