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.