Hansard

When the Parliament last debated this issue, and the petition, in Elaine Smith’s members’ business debate, I gave her an assurance that the Public Petitions Committee would bring the subject back to the chamber to allow it to be debated more widely. I am pleased that we have been able to honour that commitment, albeit with a shorter time slot than some would have preferred.

I am also pleased that, thanks to your generosity, Presiding Officer, we have heard more about the issue from Elaine Smith than would normally be the case in a debate of this length. It was right that we did so, given the strong interest in and backing for the petition that Ms Smith has shown from day 1. In fact, as I said in the previous debate, I, too, have followed the petition from day 1, having been a member of the committee since 2012. As we have heard, although the petition was drafted in broad terms, it focused on hypothyroidism and patients who continue to experience symptoms when undergoing the recommended standard treatment.

The issue is clearly complex, and the committee has rightly taken its time to explore it and to examine all sides of the arguments that have been put before us. It is clear that while there is no one-size-fits-all solution, there is the chance to listen to patients’ experiences as well as to introduce a clear single protocol for the whole of Scotland. I am pleased to hear from the minister that the Scottish Government is committed to improving diagnosis and access to appropriate treatments for thyroid disorders. It is good to know that the chief medical officer’s speciality adviser for endocrinology is leading work to support a consistent approach to specialist input across Scotland.

Before I go any further, I thank all members who have taken part in the debate. We have had informed and passionate contributions from everyone who contributed—not least from Elaine Smith, who, as I mentioned earlier, knows and understands the complexities of the issue inside out. There were salient contributions from others, too. Brian Whittle highlighted a situation that he likened to a postcode lottery. He spoke of the differences in patients’ experiences of diagnosis depending on who had undertaken them, and highlighted the case of a patient in his constituency who had been lucky enough to be prescribed T3. David Torrance highlighted the need for effective testing and clear diagnostic guidelines.

Elaine Smith told us of her own heartfelt experience and highlighted the intervention of Dr Toft, from whom the committee was pleased to take evidence in its consideration of the petition. Ms Smith also rightly highlighted the ludicrous situation in which patients have to source desiccated thyroid from abroad. Rachael Hamilton highlighted concerns regarding the various types of treatment and the lack of proper diagnosis, leading to self-medication. Most speakers, including David Stewart, raised the issue of there being a fundamental lack of understanding by many GPs.

Jackie Baillie brought to our attention the fact that, a year down the line since our last debate, the problem has still not been fixed. I share her frustration, as I am sure do all members of the committee, along with the petitioners. Ms Baillie also highlighted the scandal of Concordia’s charges and the postcode lottery regarding diagnosis. David Stewart, too, sought an end to the postcode lottery and supported calls for a full inquiry by the Health and Sport Committee. Miles Briggs joined the calls for early diagnosis and highlighted the cost of drugs, especially through Concordia. However, there was welcome clarification from Elaine Smith that costs are coming down.

Of course, the minister’s commitment to contact health boards regarding the supply of T3 is extremely welcome. The Public Petitions Committee is aware that the then Minister for Public Health and Sport met Elaine Smith and the petitioner Lorraine Cleaver in March of this year, which was shortly before the committee published its report on the issues raised in the petition, and it has been extremely helpful to hear the views of the current minister today.

Throughout consideration of the petition, it has been very clear to the committee that clinicians have an important independent role in diagnosing and treating patients. In performing that duty, they are guided by evidence-based guidelines, which have been developed by independent experts and are informed by the available peer-reviewed research on patient treatment. The committee welcomes the fact that the profile raising that has been brought about by the petition appears to have been influential in key sources of clinical guidance being produced or updated by professional bodies and national health authorities. The Scottish Government has acknowledged that work in raising awareness of hypothyroidism and the challenges that are experienced by patients, and the influence that those have brought to the additional sources of guidance that have been produced during the life of the petition.

The committee welcomes the minister’s confirmation that NICE intends to develop a guideline on thyroid disease, with publication expected in November 2019. It hopes very much that the petitioners and others with an interest in the petition will engage in the development of such a guideline.

We also welcome the work that is being done to develop stronger links between GPs on communication and consistency of approach in the diagnosis and primary care referral of people with thyroid conditions, and we note that the deputy chief medical officer met representatives from NHS Education for Scotland to develop an endocrine learning module for GPs. That development is very welcome indeed. The committee understands that the chief medical officer’s speciality adviser on endocrinology, whom I mentioned earlier, has been asked to review that in light of the issues raised through the petition.

Although there seems to be an acknowledgement that the standard treatment is not a one-size-fits-all and does not work for everyone, the convener touched on the fact that, too often when the committee considers a health-related petition, a theme that seems to emerge is that patients are often not listened to. That must change, which is why, in the committee’s view, better means of capturing patient experience need to be developed so that clinicians can deliver the Scottish Government’s aim of promoting realistic medicine that ensures that the most appropriate treatment is given to patients. That is why the committee has recommended that the Scottish Government should develop guidance for listening exercises to ensure that they are designed in an impactful way.

Listening exercises should also be designed to capture anecdotal evidence in a way that can meaningfully inform the development of future clinical studies, clinical guidance and public policy. In that regard, the committee was pleased about the fact that, in its written response to the committee’s report, the Scottish Government said that it was encouraging anyone with an interest in thyroid conditions to engage in the development of the NICE guideline.

The committee recognises that there are differing views on the evidential basis for the current system of diagnosis, testing and treatment and the changes that are called for in the petition, and we recognise that discussions about those differing views will, and should, continue.

On behalf of the committee, I thank the petitioners for raising this important topic, and I thank all the public bodies, clinical representatives and thyroid patient representatives who have engaged with the committee in its consideration of the petition.