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Scottish Parliament Petition 2012 - 2013

www.scottish.parliament.uk/GettingInvolved/Petitions/PE01463

 

Update:
28/03/2014

Rudolf Hoermann, MD & John E M Midgley, PHD (medical advisors to TUK) have submitted the following document in response to the BTF letter dated 14 November 2013, Reference PE1463/AA

Comments on The Role of FT3 Measurement in Thyroid Disease and The Comorbidity of
Addison's Disease in Hashimoto's Thyroiditis

Click here to download a copy (PDF format)

Update:
7/02/2014

Office of Elaine Smith MSP:
Has asked us to inform everyone that they can't accept any more thyroid stories as they are now sorting them out for the petitions committee.

Samantha Byrne, Parliamentary and Constituency Assistant to Elaine Smith MSP, has sent an email to everyone who sent in their story to Elaine Smith MSP. If you sent in a story, Samantha needs you to confirm the following:

  • That you have read their policy on treatment of written evidence and want your communication to be treated as written evidence by the committee
  • Whether or not you wish to remain anonymous
  • That you are content that we have had to remove the names of certain doctors from some submissions

Make sure that you look out for Samantha's email and respond to her by Wednesday 12th February 2014.

Update:
31/01/2014

In March 2013, Julie Cameron submitted a letter in support of the Scottish Parliament Petition, which was accepted as written evidence.

Julie has since compiled and submitted a list of campaigns/petitions/attempts by the 'hypothyroid community' to raise awareness.

Click here to read this addendum (PDF format).

Update:
2/10/2013

The Recording of this Public Petitions Committee meeting on October 1st is available to watch on
www.youtube.com/watch?v=4ABnBkOI79E

Update:
1/10/2013

Scottish Petitioners ask for stories from Scottish thyroid patients.

SCOTTISH THYROID SUFFERERS: MALE AND FEMALE.

After the round-table meeting today the 1st October, it was decided that we would gather stories from Scottish Thyroid/Adrenal Patients who are unhappy with their diagnosis, treatment and medication. We would like to hear from 100 + dissatisfied patients.

Some ideas!

How long have you been ill?
Have you been diagnosed?
What was your first diagnosis?
Have you been given any other diagnosis?
How long did your doctor take to recognise your symptoms?
Did she/he test your Free thyroid hormones?
Or was it just the TSH/T4 test?
What were the results?
What were you prescribed?
Were your adrenals checked?
Were your vitamins/minerals etc checked?
Were you referred to an endocrinologist?
Do you still have symptoms?
How happy were you with your overall treatment?
Etc etc etc...

Because it is the Scottish Parliament, it has to be Scottish Patients. Thank you for participating. You are helping to bring change.

Please send your story (concise version please) to: Elaine.Smith.msp@scottish.parliament.uk


October 2nd 2013:- MSP.ELAINE SMITH HAS SENT THE FOLLOWING MESSAGE TO US THIS MORNING:-

I would be grateful if you could ask on the site if I can have an address & phone number with the stories. It will make the testimonies more real for the committee with that information. I will reply to those I already have to ask for this info. Is everyone clear that I am going to pass these to the committee?

 

Update:
25/07/2013
Thyroid UK Invited to Round-Table Discussion at Scottish Parliament
Lyn Mynott has now received Thyroid UK's invitation to the round-table discussion at Scottish Parliament, where the Scottish Parliament Public Petition PE1463 on effective thyroid and adrenal testing, diagnosis and treatment will be discussed.

We don't know who the other participants are yet but have asked to be kept informed.

Although this is a formal meeting, witnesses giving evidence and the Committee Members will sit alternately around the table to encourage more of a discussion, as opposed to the more familiar question and answer format with a panel sat opposite the Committee.

The meeting is to be held in public on 1st October 2013, and a substantially verbatim transcript of the discussion will be published and made publically available.

Following the discussion, the Committee will be invited to agree what action it will take.

Lyn Mynott says, "I will ensure that the Committee is given the evidence it needs in respect of the problems patients face in the diagnosis and treatment of thyroid disease including the fact that other conditions are often missed such as adrenal insufficiency as well as B12 and Vitamin D deficiency."

 

Update:
25 June 2013
The Committee took evidence from Alex Neil, Cabinet Secretary for Health and Wellbeing, Lesley Metcalf, Policy Manager, Clinical Priorities Team, and Alpana Mair, Deputy Chief Pharmaceutical Officer, Scottish Government. The Committee agreed to hold a round-table discussion at a future meeting.
Click here for the Official Report 25 June 2013 (499KB pdf)

Update:
13 June 2013
The Petitions Clerk has emailed the Scottish Petitioners to say -

" I am writing to confirm that your petition PE1463 will be considered by the Public Petitions Committee at its meeting on Tuesday 25 June. The meeting will be held in Committee Room 2 in the Parliament and is scheduled to start at 9.30 am. The Committee will be taking evidence from Alex Neil MSP, Cabinet Secretary for Health and Wellbeing, on the petition and will be the first item on the agenda at 9.30."

Update:
28 May 2013:
The Committee agreed to invite the Cabinet Secretary for Health and Wellbeing to give evidence at a future meeting and write to the Medicines and Healthcare products Regulatory Agency and Amdipharm Mercury.

Update:
27 May 2013:
Lorraine Cleaver and Sandra Whyte were filmed by Scottish TV News. They took the opportunity to make mention of the fact that UK licensed liothyronine (T3) was currently unavailable. Lyn Mynott, CEO of Thyroid UK and endocrinologist Dr Anthony Toft were also interviewed for the news item.

Click the link below to watch the broadcasted interview and read the accompanying article.
news.stv.tv/scotland/226965-thyroid-disease-sufferers-call-for-an-inquiry-into-treatment/

17 April 2013
Lyn Mynott interviews Scottish Petitioner Lorraine Cleaver.
Click here for a PDF of the transcript

Update:
16 April 2013:
The Committee agreed to write to the Scottish Government.
Link to Official Report 16 April 2013 (473KB pdf)


The meeting with Scottish Parliament on 5th February 2013 to discuss the petition was filmed and is available to watch on this youtube link:
http://www.youtube.com/watch?v=CVXvYrJJ5dU

PDFs of the petition itself and all related documents regarding this petition can be downloaded from:
www.scottish.parliament.uk/GettingInvolved/Petitions/PE01463

 


Reference PE01463 - Tuesday 5th February 2013

Scottish Parliament logo

A petition entitled "Effective Thyroid and Adrenal Testing, Diagnosis and Treatment", was discussed in the Scottish Parliament on Tuesday 5th February 2013.

The petition:

Calling on the Scottish Parliament to urge the Scottish Government to take action to ensure GPs and endocrinologists are able to accurately diagnose thyroid and adrenal disorders and provide the most appropriate treatment.

was lodged on 19th December 2012 by Sandra Whyte, Marian Dyer and Lorraine Cleaver, who are resident in Scotland. These ladies all have a heart-rending story to tell which led them to filing the petition on behalf of all thyroid patients.

Unfortunately, Marian was not too well on the day of the meeting but Sandra and Lorraine attended and gave a very real picture of what is happening in a clear and concise way, showing no signs of how nervous they were feeling.

Scottish Parliament Public Petitons Committee

The MSP's were very interested in what they had to say and agreed to write to various people about the problem, including Thyroid UK. We will, of course, give them all relevant information to aid them in this matter.

On behalf of all thyroid patients who are not doing well on levothyroxine only therapy, we would like to thank Sandra, Lorraine and Marian for submitting this petition and for all the work they have done on this for thyroid patients.

Thyroid UK will help them in any way they think is necessary to move this forward.

 

Page last updated 25/07/2013