Thyroid UK
| Abbreviation | TUK |
|---|---|
| Formation | 2001 |
| Legal status | Registered Charity |
| Purpose | Better thyroid health in the UK |
| Headquarters | 32 Darcy Road, St Osyth, Clacton on Sea, Essex, CO16 8QF |
Region served | UK |
Staff | 4 |
Volunteers | 44 |
| Website | ThyroidUK |
Thyroid UK is a patient-led registered charity and membership organisation in the United Kingdom that provides information and resources to support people with thyroid conditions and promotes effective diagnosis and appropriate treatment. Thyroid UK informs patients of choices with regards to thyroid testing and treatment, providing information about medication that is available in addition to the standard treatment offered by the NHS.
Present Patrons: Dr Chris Steele MBE, Lisa Francesca Nand (Chessy), Piers Hernu and Michael Rosen
Present Medical Advisers: Dr. Johannes W. Dietrich, M.D., Professor Dr Rudolf Hoërmann, MD PhD, Dr John Midgley B.Sc (Leeds) D Phil (Oxford), Dr Sarah Myhill, Jacob Teitelbaum, MD, Kent Holtorf, MD, Dr Alyssa Burns-Hill PhD, MSc, FRSH, MIHPE, Dr Mark Starr
History
Due to ill health, Lyn Mynott started campaigning with patient advocate, Diana Holmes in 1998 under the name Thyroid Action Group.[1] They wrote letters to doctors, MPs and the media to raise awareness of the way thyroid conditions were diagnosed, and a potential problem with thyroid blood testing.
In 1999, Lyn appeared on BBC Watchdog – Healthcheck, and was inundated by calls, emails and letters after the programme aired. It was clear that this problem affected many people across the UK, and so she set up a committee in 2000.
Lyn was elected Chair of the committee, and their aim was to discuss how to raise awareness and try to change the way patients were diagnosed and treated. The following year, their name changed from Thyroid Action Group to Thyroid UK.
Thyroid UK became a Registered Charity in 2008, and with the help of a grant from Awards for All, the team moved into a new, purpose built office in 2009.[2][1]
Function
Since the inception of Thyroid UK, it has worked with various organisations in order to ensure that patients can access up to date information about thyroid disease and related disorders.
Thyroid UK has worked with UK Governments, UK health authorities and the Scottish Parliament Petitions Committee[3] and is now working with a coalition of thyroid support groups to try to ensure that thyroid patients have a choice of medication if clinically appropriate.
Activities
Thyroid UK has a large support network which consists of support groups and telephone support through volunteers, an online community hosted by HealthUnlocked, a community website that Thyroid UK piloted and which has grown extensively since its inception.[4] Thyroid UK also has a Facebook page,[5] a Twitter page [6] and an Instagram page [7] in order that thyroid patients can gain support from different platforms.
Thyroid UK has a website [8] where information can be accessed free of charge and a membership which includes a quarterly magazine [9] where members find information on a range of thyroid and related topics. Thyroid UK also supports people from their office via telephone, letter and email.
Lyn Mynott, Chair/CEO of Thyroid UK often speaks directly with patients about her experiences and the diagnosis and treatment options of thyroid disease.
Thyroid UK is committed to bringing change that will enable patients to have better thyroid health.
Campaigns
#T3 Campaign
In the summer of 2017 Thyroid UK decided to campaign about the rising numbers of patients being refused liothyronine or having their liothyronine prescription withdrawn.
In 2017, NHS England were 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) was 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.” [10]
Thyroid UK was a stakeholder of this consultation and campaigned with other thyroid organisations to stop NHS England from withdrawing T3.
The NHS England decision regarding liothyronine was that it should not be routinely prescribed and that patients should be sent to secondary care for review.
However, it became apparent that some Clinical Commissioning Groups were not abiding by the NHS England decision.
Thyroid UK had a meeting with The Rt Hon. The Lord Hunt of Kings Heath OBE, Shadow Spokesperson (Health and Social Care) and it was decided to ask for a regret debate in the House of Lords which was subsequently held on 28 June 2018:[11]
"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)."
Since the Regret Debate, various thyroid support groups have started working together to try to ensure that patients who clinically need liothyronine can have this medication prescribed.
This campaign is ongoing, and updates can be found on the Thyroid UK website.[12]
Scottish Government Listening Exercise
In 2015, Thyroid UK worked with the Scottish Government on a listening exercise. They designed a survey entitled, “Hypothyroid Patient Experiences Survey” in order to gain information on how patients feel about their thyroid diagnosis and treatment.[13] This survey was then used as evidence for the Scottish Parliament Petition PE1463: Effective Thyroid And Adrenal Testing, Diagnosis And Treatment [14]
Scottish Parliament Petition PE1463: Effective Thyroid And Adrenal Testing, Diagnosis And Treatment
In October 2013, Thyroid UK was invited to give evidence at a round-table discussion at the Scottish Parliament Petitions Committee.[14][15]
Thyroid UK has submitted letters giving relevant information about the diagnosis and treatment of thyroid disease to the Petitions Committee over the time of the petition.[14]
A report of the petition has been written.[16] The petition is still ongoing at present.
Government e-petition 2014
In 2014, Thyroid UK re-submitted a Government e-petition asking the Government to fund research into T3 and/or natural desiccated thyroid treatment which collected 12,114 signatures.[14]
Because there were over 10,000 signatures, the Government responded:
"The National Institute for Health Research (NIHR) welcomes funding applications for research into any aspect of human health, including treatment for hypothyroidism. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.
The NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula has partly supported a review of treatment for primary hypothyroidism published in 2012 in the journal Drug Design, Development and Therapy. The review considered approaches including triiodothyronine (liothyronine) therapy, triiodothyronine-levothyroxine combination therapy, and the use of natural desiccated thyroid.
This e-petition remains open to signatures and will be considered for debate by the Backbench Business Committee should it pass the 100,000 signature threshold." [17]
Government e-petition 2011
In 2011, Thyroid UK submitted a Government e-petition asking the Government to fund research into T3 and/or natural desiccated thyroid treatment which collected 5216 signatures.[18]
Conferences
Thyroid UK holds conferences for patients to enable them to increase their knowledge of thyroid disease and related conditions.[19]
Notes
- ↑ 1.0 1.1 https://thyroiduk.org/about-thyroid-uk/our-history/
- ↑ Thyroid UK History Thyroid UK Website
- ↑ https://archive2021.parliament.scot/gettinginvolved/Petitions/PE01463
- ↑ Health Unlocked Thyroid UK Community https://healthunlocked.com/thyroiduk
- ↑ Thyroid UK Facebook https://www.facebook.com/thyroiduk
- ↑ Thyroid UK Twitter https://twitter.com/thyroiduk_org
- ↑ Thyroid UK Instagram https://www.instagram.com/thyroiduk_org/?hl=en
- ↑ Thyroid UK Website
- ↑ Thyroid UK Magazine Thyroid UK Website
- ↑ NHS England Consultation on "Items which should not routinely be prescribed in primary care" - https://www.england.nhs.uk/wp-content/uploads/2017/11/items-which-should-not-be-routinely-precscribed-in-pc-ccg-guidance.pdf
- ↑ Regret Debate – 20th June 2018 – Lord Hunt of Kings Heath https://hansard.parliament.uk/Lords/2018-06-20/debates/5A689F14-D2F8-4796-8732-CBD0E3B3E508/BrandedHealthServiceMedicines(Costs)Regulations2018
- ↑ T3 Campaign Updates Thyroid UK Website
- ↑ Thyroid UK Hypothyroid Patient Experiences Survey Thyroid UK Website
- ↑ 14.0 14.1 14.2 14.3 Scottish Parliament Petition PE1463: Effective Thyroid And Adrenal Testing, Diagnosis And Treatment http://www.parliament.scot/GettingInvolved/Petitions/PE01463
- ↑ https://archive2021.parliament.scot/parliamentarybusiness/report.aspx?r=8776&mode=pdf
- ↑ Scottish Parliament Report on Petition PE1463: Effective Thyroid And Adrenal Testing, Diagnosis And Treatment https://www.england.nhs.uk/wp-content/uploads/2017/11/items-which-should-not-be-routinely-precscribed-in-pc-ccg-guidance.pdf
- ↑ Thyroid UK Government e-petition (2011) UK Parliament Petition Number 19000
- ↑ Thyroid UK Government e-petition (2011) - UK Parliament Petition Number 64191
- ↑ Thyroid UK 2017 Conference Report Thyroid UK Website
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