Scottish Parliament.In 2012 a group of patients presented a petition, PE 01463, to the Scottish Parliament, highlighting problems with diagnosis and treatment of thyroid disorders and a committee was set up to consider the concerns raised . The Public Petitions Committee considered this complex issue and many patients in Scotland have reached out to their MSPs for support.
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MSP Elaine Smith led a debate in the Scottish Parliament in November 2017, see video:
here is the Petitions Committee Report published in March 2018.
And the Government response published in June 2018.
here is the Petitions Committee Report published in March 2018.
And the Government response published in June 2018.
A follow up debate took place on the afternoon of Tuesday 4th December 2018. Public Petitions Committee Debate: Petition PE1463: Effective Thyroid and Adrenal Testing, Diagnosis and Treatment. Patients were reassured that any issues would be resolved and that L-T3 should be available on the NHS in Scotland for those who need it.
The petitions committee referred the petition to the Health and Sport Committee, with the proposal that the committee should hold an inquiry. Along with Elaine Smith MSP and other patient groups, we suggested that patients in Scotland, friends, family and interested professionals, should write to the Convener of the Committee, Lewis McDonald MSP, by 27th June 2019. Using this template letter to add their own story.
The petitions committee referred the petition to the Health and Sport Committee, with the proposal that the committee should hold an inquiry. Along with Elaine Smith MSP and other patient groups, we suggested that patients in Scotland, friends, family and interested professionals, should write to the Convener of the Committee, Lewis McDonald MSP, by 27th June 2019. Using this template letter to add their own story.
On 26th September 2019 the Scottish Government closed the petition as they agreed they were taking robust steps to address the issues it highlighted. This including making funds available for research and agreeing to write to @NHSTayside. Here is a link to the official report. How are Scottish thyroid patients faring now? Let us know.
MSP Elaine Smith put a motion to the Scottish Parliament for International Thyroid Awareness Day 2020, 25th May.
Motion Number: S5M-21790
Lodged By: Elaine Smith
Date Lodged: 18/05/2020
Title: Thyroid Awareness Day on 25 May
Motion Text:
That the Parliament acknowledges International Thyroid Awareness Day on 25 May 2020, which starts Thyroid Awareness Week; considers that, despite ongoing parliamentary debates and petitions in the UK, people, the majority of whom are women, are still not being fully listened to; acknowledges that the COVID-19 pandemic is adding to this challenge; appreciates the work being done by charities, such as the Thyroid Trust and Thyroid UK, in supporting people to fully understand and manage the disease, and hopes that Thyroid Awareness Day will help encourage ministers and health providers to ensure that all people with thyroid disorders are given full and easy access to all options of treatment, including Liothyronine.
We encouraged all thyroid patients in Scotland to contact their MSPs and ask them to sign the motion and we continue to encourage you to be in touch with them about any concerns you may have regarding how thyroid conditions are being treated in Scotland. Here is a link to find the details of your MSP https://www.parliament.scot/msps.aspx
The following MSPs supported the International Thyroid Awareness Day 2020 motion and we thank them warmly for their support:
Iain Gray, Anas Sarwar, Alex Neil, Alison Harris, Jackson Carlaw, Richard Lyle, David Torrance, Bill Kidd, Sarah Boyack, Neil Findlay, Monica Lennon, Clare Adamson, Colin Smyth, Ruth Maguire
On 17th March 2021 Elaine Smith MSP kindly put down another motion for thyroid patients for International Thyroid Awareness Week in May 2021.
Scottish Parliament Motion Number: S5M-24420
Lodged By: Elaine Smith
Date Lodged: 17/03/2021
Title: Thyroid Champions
Motion Text:
That the Parliament notes that World Thyroid Day falls on 25 May 2021; acknowledges what it considers to be the ongoing failures in the treatment of people with thyroid conditions, the majority of whom, it understands, are women; expresses disappointment that many are reportedly still having daily struggles to secure proper diagnosis and treatment; understands that those who can afford it have to pay privately for diagnosis and medication; acknowledges that current research being compiled by The Thyroid Trust suggests that there are currently patients in at least five NHS board areas who are reportedly being refused liothyronine; believes that the Scottish Government would understand the issues better if it undertook a similar project to the UK Government’s current call for evidence as part of its new Women’s Health Strategy, to better understand women’s experiences of the health and care system; considers that large drug manufacturers appear to have control over the supply and reportedly inflated costs of life-saving drugs such as liothyronine in the UK, compared to other countries, and hopes that future MSPs will continue to work as thyroid champions to help progress the ongoing issues.
Motion Number: S5M-21790
Lodged By: Elaine Smith
Date Lodged: 18/05/2020
Title: Thyroid Awareness Day on 25 May
Motion Text:
That the Parliament acknowledges International Thyroid Awareness Day on 25 May 2020, which starts Thyroid Awareness Week; considers that, despite ongoing parliamentary debates and petitions in the UK, people, the majority of whom are women, are still not being fully listened to; acknowledges that the COVID-19 pandemic is adding to this challenge; appreciates the work being done by charities, such as the Thyroid Trust and Thyroid UK, in supporting people to fully understand and manage the disease, and hopes that Thyroid Awareness Day will help encourage ministers and health providers to ensure that all people with thyroid disorders are given full and easy access to all options of treatment, including Liothyronine.
We encouraged all thyroid patients in Scotland to contact their MSPs and ask them to sign the motion and we continue to encourage you to be in touch with them about any concerns you may have regarding how thyroid conditions are being treated in Scotland. Here is a link to find the details of your MSP https://www.parliament.scot/msps.aspx
The following MSPs supported the International Thyroid Awareness Day 2020 motion and we thank them warmly for their support:
Iain Gray, Anas Sarwar, Alex Neil, Alison Harris, Jackson Carlaw, Richard Lyle, David Torrance, Bill Kidd, Sarah Boyack, Neil Findlay, Monica Lennon, Clare Adamson, Colin Smyth, Ruth Maguire
On 17th March 2021 Elaine Smith MSP kindly put down another motion for thyroid patients for International Thyroid Awareness Week in May 2021.
Scottish Parliament Motion Number: S5M-24420
Lodged By: Elaine Smith
Date Lodged: 17/03/2021
Title: Thyroid Champions
Motion Text:
That the Parliament notes that World Thyroid Day falls on 25 May 2021; acknowledges what it considers to be the ongoing failures in the treatment of people with thyroid conditions, the majority of whom, it understands, are women; expresses disappointment that many are reportedly still having daily struggles to secure proper diagnosis and treatment; understands that those who can afford it have to pay privately for diagnosis and medication; acknowledges that current research being compiled by The Thyroid Trust suggests that there are currently patients in at least five NHS board areas who are reportedly being refused liothyronine; believes that the Scottish Government would understand the issues better if it undertook a similar project to the UK Government’s current call for evidence as part of its new Women’s Health Strategy, to better understand women’s experiences of the health and care system; considers that large drug manufacturers appear to have control over the supply and reportedly inflated costs of life-saving drugs such as liothyronine in the UK, compared to other countries, and hopes that future MSPs will continue to work as thyroid champions to help progress the ongoing issues.
Previous updates
7th February 2019
Patients in Scotland continued to report difficulties. The Petitions Committee revisited the thyroid petition, PE 01463, on 7th February 2019. The Scottish Minister for Health stated that no-one in Scotland would have their L-T3 prescription withdrawn. However Elaine Smith MSP told of three cases where Scottish national guidance is not being followed and patients are being harmed. More work is required to resolve the issue of access to L-T3 in Scotland. Video below.
Patients in Scotland continued to report difficulties. The Petitions Committee revisited the thyroid petition, PE 01463, on 7th February 2019. The Scottish Minister for Health stated that no-one in Scotland would have their L-T3 prescription withdrawn. However Elaine Smith MSP told of three cases where Scottish national guidance is not being followed and patients are being harmed. More work is required to resolve the issue of access to L-T3 in Scotland. Video below.
13th February 2019
An important letter has been sent by Joe Fitzpatrick. The Scottish Parliament Minister for Public Health, Sport and Wellbeing, to all Scottish Health Authorities, requiring a response by 27th February 2019, confirming that they are all committed to:
The letter restates the Scottish Government’s position:
“...that an endocrinologist can recommend prescribing T3 to the referring GP if it is considered to be the safest and most effective course of treatment for an individual, or recommend prescribing T3 for an individual patient if their symptoms are not adequately controlled with T4.”
The Scottish government recognises in this letter that there are cases in Scotland where reviews of patients established on T3 are not being undertaken in a safe manner.
We are pleased that this letter has gone out and sincerely hope that this swift directive will bring about an end to harm being caused to affected patients in Scotland. We look forward to resolution of the issues still being experienced by patients in England, Wales and Northern Ireland.
An important letter has been sent by Joe Fitzpatrick. The Scottish Parliament Minister for Public Health, Sport and Wellbeing, to all Scottish Health Authorities, requiring a response by 27th February 2019, confirming that they are all committed to:
- a holistic and safe review of patients prescribed T3 which is undertaken by a healthcare professional based on the needs of the individual patient.
- clinicians initiating and continuing T3 where it is safe and clinically appropriate to do so, as agreed with a consultant who specialises in endocrinology.”
The letter restates the Scottish Government’s position:
“...that an endocrinologist can recommend prescribing T3 to the referring GP if it is considered to be the safest and most effective course of treatment for an individual, or recommend prescribing T3 for an individual patient if their symptoms are not adequately controlled with T4.”
The Scottish government recognises in this letter that there are cases in Scotland where reviews of patients established on T3 are not being undertaken in a safe manner.
We are pleased that this letter has gone out and sincerely hope that this swift directive will bring about an end to harm being caused to affected patients in Scotland. We look forward to resolution of the issues still being experienced by patients in England, Wales and Northern Ireland.
Tayside response is "unacceptable" says Cabinet Secretary
Elaine Smith MSP raises a question in General Question Time - in light of the recent comments by the Chief Medical Officer for Scotland, what action it is taking to tackle gender inequality in the practice of medicine. Jeane Freeman, Cabinet Secretary responded that this month there is to be a special focus on women's and girls' health.
Elaine Smith welcomed this response but added that the issue of thyroid treatment is very concerning, particularly for women, as recognised by the Minister, Joe Fitzpathrick's, letter to Scottish Health Authorities last month.
Elaine asked what the Scottish Government will do about NHS Tayside who "blatantly ignored the Minister's letter and only yesterday refused to allow a prescription of T3 to a patient who needs it said, wrongly, that liothyronine is "non-formulary", and allowed a panel to overrule a specialist clinician's opinion that she should have it."
Jeane Freeman's response was direct and clear. If what Elaine had said was correct then that appeared to be "a completely unacceptable response" and she would ask the Minister to follow up and pursue this matter "urgently".
Watch the video below from 11:53am
Bravo and thank you to Elaine and Jeane!
Elaine Smith welcomed this response but added that the issue of thyroid treatment is very concerning, particularly for women, as recognised by the Minister, Joe Fitzpathrick's, letter to Scottish Health Authorities last month.
Elaine asked what the Scottish Government will do about NHS Tayside who "blatantly ignored the Minister's letter and only yesterday refused to allow a prescription of T3 to a patient who needs it said, wrongly, that liothyronine is "non-formulary", and allowed a panel to overrule a specialist clinician's opinion that she should have it."
Jeane Freeman's response was direct and clear. If what Elaine had said was correct then that appeared to be "a completely unacceptable response" and she would ask the Minister to follow up and pursue this matter "urgently".
Watch the video below from 11:53am
Bravo and thank you to Elaine and Jeane!