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Committee

Public Petitions Committee 09 February 2016

09 Feb 2016 · S4 · Public Petitions Committee
Item of business
Continued Petitions
Thyroid and Adrenal Testing and Treatment (PE1463)
Watt, Maureen SNP Aberdeen South and North Kincardine Watch on SPTV
Good morning and thank you for inviting me to give evidence. At the outset, I make it clear that I have not only an on-going interest in the petition as Minister for Public Health but a personal interest, as I have previously made public. I was substituting at the Public Petitions Committee in 2013 when the petition was discussed. I am aware that many people are affected by thyroid problems and that some of them have been unwell for some time, having experienced difficulties in obtaining diagnosis and appropriate treatment. I am sympathetic to the challenges that they face. First and foremost, I stress that we take the petition and what the petitioners are saying very seriously. Although I have an understanding of the issues that will be raised today, I recognise that the committee may ask questions of a more clinical nature, so I may require to refer some questions to Professor Graham Leese, who is the chief medical officer’s specialty adviser on diabetes and endocrinology and is also an honorary professor in diabetes and endocrinology at the University of Dundee. As the committee is aware, the Scottish Government commissioned a listening exercise to be carried out by Thyroid UK on the experiences of hypothyroid patients. An online survey was carried out during the summer of 2015 across the whole United Kingdom. Respondents were invited to complete the survey from a variety of sources, including the Thyroid UK website, a forum, Facebook and Twitter. There were approximately 5,000 respondents to the survey and just over 4,000 surveys were fully completed. The purpose of the listening exercise was to obtain a comprehensive picture of what was happening in patients’ experiences of diagnosis and treatment. The survey was aimed at patients who have been diagnosed with hypothyroidism, as well as those who have symptoms of hypothyroidism but have not yet been diagnosed. A number of questions were asked to cover patient experience, diagnosis, treatment and general practitioner knowledge. The results of the survey are available on Thyroid UK’s website and I take the opportunity to thank the charity for carrying out that useful work in helping us to obtain a better understanding of patients’ condition, diagnosis, treatment and experience. Committee members will be well aware that the Scottish Government’s role is to provide policies, frameworks and resources to national health service boards to allow them to deliver services that meet the needs of their local populations. In that context, the provision of healthcare services is the responsibility of local boards, which take into account national guidance, local service needs and priorities for investment. It should be recognised that progress in clinical science has been, and should continue to be, based on properly conducted, scientifically based trials that strive to eliminate any error or unrecognised confounding issues. It is appreciated that progress can sometimes be frustratingly slow, but that is the consequence of trying to get things right and ensure patient safety, which is paramount at all times. Anecdote and clinical observation can be useful to raise scientific questions, but such questions need to be tested rigorously; otherwise, the approach can be potentially detrimental and dangerous to patients, as well as wasteful of NHS resources, not just for thyroid disease but for all other medical conditions. The position statement by the British Thyroid Association, which was published in May 2015, clearly sets out its recommendations on the management of primary hypothyroidism on the basis of the current literature and a review of the published positions of the European Thyroid Association and the American Thyroid Association, and it is in line with best principles for medical practice. The recommendations have been endorsed by the Association for Clinical Biochemistry and Laboratory Medicine, the British Thyroid Foundation, the Royal College of Physicians and the Society for Endocrinology, and they therefore reflect current best practice in the management of primary hypothyroidism, about which Professor Leese will be able to speak more if needed. The British Thyroid Foundation is a patient support group that has worked since 1991 with medical professional bodies, such as those that I just mentioned, to provide guidance for all patients—and their relatives—who have thyroid disease, including those with underactive thyroid, overactive thyroid, thyroid cancer and thyroid eye disease. The foundation has endorsed the British Thyroid Association guidelines. In addition, the foundation has written a frequently asked questions sheet for patients and published it on its website. Guidance that has been written for GPs is expected to be published later this year in a GP-oriented medical journal. I am aware that the petitioner has met representatives of the Scottish intercollegiate guidelines network and that an outcome of that discussion is that the SIGN council hopes to determine, in conjunction with the Royal College of Physicians, whether it may be helpful to produce a good practice guide on the topic for general practitioners. Ultimately, that will be a decision for the SIGN council, and the Scottish Government cannot influence that decision, although I welcome SIGN’s consideration of the proposal.

In the same item of business

The Convener Lab
Our second item of business is consideration of PE1463, on effective thyroid and adrenal testing, diagnosis and treatment. We will take evidence from the Min...
The Minister for Public Health (Maureen Watt) SNP
Good morning and thank you for inviting me to give evidence. At the outset, I make it clear that I have not only an on-going interest in the petition as Mini...
The Convener Lab
Thank you—that was a comprehensive overview of the situation from your perspective. As you said, the petition has been running for a substantial time. Commit...
David Torrance (Kirkcaldy) (SNP) SNP
The Thyroid UK survey report shows that 42 per cent of respondents considered that their clinician was not open to discussion about treatment options and tha...
Maureen Watt SNP
As I said, the survey was UK wide, so we cannot extrapolate the Scottish situation from it. It did not involve a randomised sample, as one would normally exp...
Professor Graham Leese (NHS Tayside and Chief Medical Officer Specialty Adviser)
I am not directly involved with that, but we have been involved with the British Thyroid Association. As the minister mentioned, the British Thyroid Foundati...
The Convener Lab
Elaine Smith has a question—is it a supplementary on this specific point?
Elaine Smith (Coatbridge and Chryston) (Lab) Lab
My question is relevant to the point. I might have asked it later, but it is perhaps better if I ask it now, if you do not mind.
The Convener Lab
We will take your question now, then I will come back to David Torrance.
Elaine Smith Lab
The petitioner has told me that the British Thyroid Foundation changed its advice online as recently as this week. My question is directly for Professor Lees...
Professor Leese
I cannot comment on the British Thyroid Foundation document that you refer to, as I am not sure that I have seen it. However, it probably refers to the Briti...
Elaine Smith Lab
Will you also comment on the range? The committee has been looking into it. It is different in different countries. We have heard evidence that, far too ofte...
Professor Leese
The evidence suggests that patients who are on thyroxine are treated very much at an individual level. The guidelines, and most GPs, try to adapt the levels ...
Maureen Watt SNP
I say, perhaps for people who are not so involved in the issue, that anybody who is on levothyroxine gets tested. They get a thyroid-stimulating hormone—TSH—...
Professor Leese
It is worth noting that there is a wide range of what is deemed to be acceptable TSH, so there is scope for moving doses, perhaps to small amounts, to mainta...
David Torrance SNP
The minister said that new guidelines for GPs would be published later in the year. Will you expand a bit on what is in the guidelines and how quickly SIGN w...
Professor Leese
There needs to be increased general awareness of the guidelines. That comes down to educating GPs and advertising the guidelines. Each year, every GP must do...
Maureen Watt SNP
The condition is something that most GPs will come across in their practice. Just as Diabetes UK’s website includes information on tests for people with dia...
Hanzala Malik (Glasgow) (Lab) Lab
I accept what the minister said about the figures in the survey report being UK based, which means that the true picture in Scotland is not clear. Perhaps sh...
Professor Leese
The guidelines, which have been available since May, are not a one-off. As with any advertising campaign, it comes down to continuing to promote them—to incr...
Hanzala Malik Lab
You are stepping around the issue and you are still not giving me a clear guide on how you are focusing on it. How will we assess the success of the advertis...
Maureen Watt SNP
There are already SIGN guidelines for GPs. We are talking about whether there will perhaps be revised SIGN guidelines. One of the petitioners has been invol...
The Convener Lab
I ask for order in the public gallery, please. I ask the minister to stop for a moment while the matter is dealt with. Interruption. I am sorry for the distu...
Maureen Watt SNP
As I said, my understanding is that the petitioner was involved in discussions about SIGN guidelines—I do not know whether anyone else wants to come in on th...
Hanzala Malik Lab
I accept what you say and I am sure that you will try to ensure that the guidelines are fit for purpose, but I have been pressing you on the matter—I will st...
Maureen Watt SNP
As I said in my opening statement, the timing is not up to the Scottish Government. It is up to the SIGN council—we cannot really determine its timeframe.
Professor Leese
The guidelines are being distributed at the moment. You talked about measuring their success, Mr Malik, and I would welcome your thoughts as to how we do that.
Hanzala Malik Lab
Shall I respond to that, convener?
The Convener Lab
If you are being asked a question, you can respond if you have an answer.
Hanzala Malik Lab
I am happy to do that in a bid to help. I have already indicated that we do not have Scottish figures.