 That is a tremendous opportunity. I thank the cabinet secretary and members for their ferbariants. That concludes the typical questions. We'll move on to our next item of business, which is a debate on motion number 14984, in the name of Joanne Lamont, on the report on petition PE1463 on thyroid and adrenal testing diagnosis and treatment. I would encourage all members who wish to speak of this debate to press their request to sweet buttons as soon as possible. I will call on Johann Lamot to speak to and move the motion on behalf of the Public Petitions Committee. Thank you very much Presiding Officer. The Public Petitions Committee has been considering this petition since 2012, and I have only recently become a convener, but it's my privilege to speak to this report, which is the accumulated understanding over a long period of time of the Public Petitions Committee itself. I want to acknowledge a number of people who have assisted with the consideration y pethysiwn, yn cyfnodd y pethysiwners, Sandra White, Marion Dyer i, Lorraine Cleaver, i wneud o'r ddifudio cymrydau o'r cymryd ddoddau, o'r cymrydau o'r ddoddau o'r ddoddau i'r ddoddau. Mae cyfnoddau, ddwylo'r Cyfnodd Cyfryd, Cyfryd Ddiolch, Cyfryd Ddiolch, Cyfryd Ddiolch, Society for Endocrinology i ond o'r The petitioner has explained that, by definition, primary hypothyroidism is a problem with the thyroid gland, but the condition that we are talking about is not with the thyroid gland, it is about the hormone that comes from the thyroid gland that becomes inactive. The condition that we are talking about is a conversion failure of the inactive T4 thyroid hormone to cross over into the active T3 hormone. The Public Petitions Committee's scrutiny of the issues has therefore focused on a subset of thyroid and adrenal diseases, hypothyroidism and those patients in particular, who continue to experience symptoms while undergoing the recommended standard treatment. I would like to set the scene with some medical detail for consideration of the issues that have been raised in considering the petition. Hypothyroidism is a condition in which the thyroid gland produces insufficient amounts of thyroxin, a hormone important for regulating the body's metabolism. A healthy thyroid gland normally produces hormones called as triodothyrin, T3, much easier, and thyroxin T4. Low levels of thyroxin can result in symptoms such as tiredness, weight gain and depression. Testing for hypothyroidism occurs mainly in primary care on patients presenting with symptoms. Once diagnosed, hypothyroidism is usually treated in primary care with the prescription of thyroxin, T4 tablets, usually levels of thyroxin. Level of thyroxin T4 is a standard treatment. Level of thyroxin is a thyroid medicine that replaces a hormone normally produced by the thyroid gland to regulate the body's energy and metabolism. Level of thyroxin is given when the thyroid does not produce enough of this hormone on its own. Patients then undergo monitoring to ensure their levels of thyroid stimulating hormone, TSH and T4 are within normal limits. Thyroid conditions can have a significant impact on the lives of those who are diagnosed with having them. While the majority of patients with hypothyroidism will be diagnosed and treated successfully using the standard treatment and testing regimes, there is a proportion of patients for whom this is not the case. Elaine Smith I just want to, if the convener, acknowledge that even those patients who are on T4 may have other symptoms persisting that they do not know what is associated with the thyroid condition. That can be an issue for those who are even on the standard treatment. I would certainly say that the evidence suggests that constituency has spoken to me as a fundamental lack of understanding across the board about the impact of this condition on those who suffer it. That is both an understanding of people around them and the professionals as well. The position has raised the profile of that cohort of patients who either do not respond to the standard treatment or do not respond to the extent that they feel sufficiently well. The committee states in its report that it is important that those patients are believed when they report on-going symptoms to clinicians, and this is something to which I will return. The condition that we are talking about today was explained by one of the petitioners as a conversion failure of the inactive T4 thyroid hormone to cross over into the active T3 hormone. That does not happen in the thyroid gland at all. The Royal College of Physicians' guidance seems only to cover people who can convert normally, and we agree with it that level theroxin is the right treatment for those people who do not convert normally. The British Thyroid Association has acknowledged that some patients continue to experience ill health and standard treatment, and the committee welcomes that as a positive step forward in bringing the issue to the attention of clinicians and mainstream endocrinology. I referred earlier to the majority of patients with hypothyroidism who will be diagnosed and treated successfully. The petition in the committee's work also focused on that diagnosis. A key concern of the petitioners is the recommended method of diagnosing and testing hypothyroid patients who do not respond well to standard treatment. Existing guidance recommends that where a patient is not satisfied with the response to standard treatment, they quote, should be thoroughly evaluated for other potentially modifiable conditions. According to NICE and the Royal College of Physicians, the starting point for diagnosing a patient with suspected hypothyroidism is to arrange blood tests for thyroid-stimulating hormone, TSH, and free thyroxin, FT4. Thyroid UK told the committee that, quote, part of the problem is that in some areas only a TSH test is done, whereas in others a free T4 test is done as well. It is very rare to get a free T3 test done. The committee considers the consistency of testing practices across Scotland and, in particular, the issue of whether testing for T3 is required. The petitioners were of the view that it should be done as a matter of course. However, the committee heard from medical experts and the President of the British Thyroid Association who did not currently support that view. The President of the British Thyroid Association said, quote, is very misleading to be thinking about measuring T3. I agree with Dr Toft that the optimal measurement for patients who are taking T4 and who have a hypothyroidism should be the TSH and the T4. I do not think that there is a place at the moment for T3 because we do not understand enough about it, end quote. However, Dr Toft subsequently clarified his own view by saying, quote, there is no reason why T3 should not, from time to time, be measured in patients who are being treated for an underactive thyroid. To add to the potential confusion and massive information that patients have to grapple with is the reference range that is used in some testing. In the course of forming a diagnosis, clinicians and laboratory biochemists rely on typical reference ranges for normal thyroids to interpret the results from blood tests. Those ranges are only a guide and will often vary according to laboratory because different tests or methodologies might be used. Some respondents were critical of the process by which the reference ranges are developed and their use in diagnosis. Thyroid patient advocacy notes that different ranges are used in other countries and its view is that the range used in the UK should be reviewed. The Royal College of Physicians notes in its guidance, quote, we recognise that different methods used for testing blood can give differing results. We support the international initiative for greater harmonisation of reference ranges and of the units used in expressing results. The committee is recommending in its report that consideration should be given to moving towards the development of a single national protocol for testing, along with an accompanying process for issuing consistent advice to primary care practitioners for use when considering and interpreting diagnostic tests for suspected hypothyroidism. In relation to treatment options, I intend to offer a short summary only, as I am keen to hear from other members, in this debate about their experiences and possible treatments. According to the British Thyroid Association, the standard treatment for hypothyroidism is synthetic T4-level theroxin. The standard treatment appears to work for most people because they can naturally metabolise T4 into T3, the active form of the hormone. The lead petitioner argues, however, that some patients are not able naturally to metabolise T4 into T3. I continue to experience symptoms, despite receiving the standard treatment. The petitioners contend that such patients should have access to alternative treatments such as T3 or natural desiccated thyroid. The committee recognises the concerns that the petitioner has raised about the issue of supply of T3. The committee notes that the licensing of medication is reserved, but the Government's action has included discussing previous supply issues with the UK Department for Health to monitor the supply of T3 in the UK. In relation to the production and costs of T3, the committee understands that the market for this treatment in the UK is relatively small. For the majority of the period in which the petition has been under consideration, there has only been one licensed supplier of T3. The committee, however, understands that two further licences were granted in the summer of 2017. Following that development, the Scottish Government told the committee that the price charged by the pharmaceutical companies for generic and branded drugs are generally competitive. However, where excessive costs and drugs are identified, it would be for the independent competition and markets authority to take the appropriate action against those companies. We understand that the CMA is currently an advanced stage of investigation involving the production and supply of T3. Leaving aside the medical facts and the arguments for certain treatments, there is the issue that was touched on previously about patients being believed. The Public Petitions Committee considers a great many petitions that are linked to health issues. A common and worrying theme that seems to emerge too often is that patients are not believed when they report symptoms. I think that it is essential that that general experience and concern is addressed by government. We would be interested in the conversation with clinicians who are being told that, when people are presenting with symptoms in whatever the condition is, they are not believed and dismissed. That has compounded the problem for the people with particular conditions. I again thank the clerks, all the committee members and those who gave evidence on what is a complex issue, but for many individuals across the communities a very serious one. I move motion 14984 in my name. I thank the Public Petitions Committee for securing the debate and the convener, Johann Lamont, for moving the motion. I also offer my personal thanks to the petitioner, Lorraine Cleaver, Elaine Smith and all those who I would like to commend for sharing their own personal experiences throughout the work of the petition. The Scottish Government is committed to ensuring that everyone in Scotland living with thyroid and adrenal conditions is able to access the best possible care and support. The petition urges the Scottish Government to take action to ensure that GPs and endocrinologists are able to accurately diagnose thyroid and adrenal disorders and provide the most appropriate treatment. The petitioner also asks for the inclusion of free tests for T3 and reverse T3 thyroid hormones, as well as tailored treatment consisting of either T4 alone, T4 in combination with T3 or T3 alone or natural desiccated thyroid. I would like to highlight some of the progress that has been made since the members' business debate on hypothyroidism last November. My predecessor, Aileen Campbell, met the petitioner and Elaine Smith MSP in February of this year, where it was agreed that stronger links of communication and consistency of approaches by GPs was important. Following that meeting, the Deputy Chief Medical Officer, Dr Gregor Smith, met representatives from NHS Education Scotland to discuss developing an endocrine learning module for GPs. That would set out helpful steps in diagnosis and pathways of care for GPs. In response to the committee's final report on the petition that was published this March, the Scottish Government confirmed that the Scottish clinical biochemistry managed diagnostic network had agreed to review evidence in relation to variation in thyroid testing, the point that was raised by the convener. I can now confirm that the network is in the process of developing a guideline, which I hope will be helpful. Through the hard work of the committee, I am pleased that lab tests online now also provides people with the relevant information regarding testing options. The chief medical officer's specialty adviser for endocrinology is also leading work to support a consistent approach to specialist input across the country. This includes exciting work to develop an endocrine IT system to support modernisation of outpatient endocrine care and to facilitate clinical audit and research. It is imperative that accurate guidance is available to all clinicians to ensure accurate thyroid diagnosis. The leading UK body for thyroid disorders, the British Thyroid Association, clearly set out recommendations in their 2015 statement on the management of primary hypothyroidism. That was based on current literature review of the published position of the European Thyroid Association and the American Thyroid Association. A number of expert bodies, including the British Thyroid Foundation and the Royal College of Physicians, endorsed that. In 2016, NICE published their clinical knowledge summary on hypothyroidism. They are also currently developing a guideline on thyroid disease and with an expected publication date of November next year. I appreciate that this is a year away, but this reflects the extensive and rigorous processes of guidelines and development, which include a wide consultation across stakeholders, including, very importantly, people living with thyroid conditions. With regard to the treatment, the British Thyroid Association position statement takes into account the wide-ranging international evidence base and concludes that T4 provides a safe and rational approach to the correction of hypothyroidism and that this improves the physical and psychological wellbeing of the vast majority of patients. However, this is a very important point, and one that was made by the convener. Healthcare professionals should recognise that there is a small proportion of patients who do not tolerate T4. In this instance, patients can, with the expert opinion of an endocrinologist, be prescribed a combination of T4 and T3, or indeed T3 alone, where they feel that it is safe and effective to do so. In that case, I am going to come to a bit more in my own speech, but would you expect health boards to get in line with that and not to stop people getting T3 and not to stop them starting on T3? I think that what people are experiencing on the ground is really important. If we are recognised that, for an individual, T4 is not working, the guidelines are clear that the endocrinologist is able to prescribe T3. That brings me to accessibility of T3. In 2017, the Scottish Government's effective prescribing programme looked at medication for a wide range of conditions, including best practice in the management of hypothyroidism. The effective prescribing programme board concluded that there is insufficient clinical evidence of effectiveness to support the use of T3, either alone or in combination, for the first line of treatment of hypothyroidism. First Reflects current best practice that T4 is the preferred first line treatment in the vast majority of patients. NHS boards were therefore asked to review the position of T3 in their formularies to ensure that T3 is only initiated on advice of an endocrinologist, which is the specialist. The review must be carried out in a person-centred manner. That means face-to-face consultations, which are essential before any change is made. There should be an assurance that the individual can return to the original treatment if mutually agreed outcomes are not achieved. That is specifically when we are talking about somebody who is currently on T3. The Scottish Government is clear that an endocrinologist can prescribe T3 for an individual patient if the symptoms are not adequately controlled by T4, but I recognise the point that Elaine Smith made just now. The diagnosis and management of hypothyroidism should not rely solely on the results of biochemical tests and should take account of the individual's circumstances and their experiences and goals. That is in line with the realistic medicine approach, which emphasises the decision making about an individual's healthcare should be focused on the individual, discussed and agreed with them, their family or carer and the clinician. Time has rushed by a few more points that I will take and manage to cover in my closing later. I thank the committee for the huge amount of work into the petitioner and the others in the gallery, as well as Elaine Smith, who has put a huge amount of effort into it. As John Lamont has said, this particular petition has exercised the petitions committee for some time. I would like to thank the petitioner, Sandra White, for bringing it. I also mentioned the work that Elaine Smith has done over the length of the petition and in keeping the petitions committee in line. In discussions about the disparity in healthcare provision, we regularly hear the term postcode lottery. What became clear during the committee's investigation is that, when it comes to diagnosis and particularly treatment of thyroid conditions, it is often not a question of postcode but of individual medical practitioners. Although I recognise that the conventional T4-only treatment is successful in the majority of cases of hypothyroidism, I am concerned that, when the conventional treatment is not effective, the options available to patients seem to be driven more by individual opinion of treating physicians rather than by any clear guidance. Both inside and outside the committee's investigation, I did get the opportunity to speak with a number of thyroid patients about their own experiences. What struck me the most was the vast range of different experiences they had from those who received faultless treatment to some who are now having to pay for their own T3. To me, that level of inconsistency in treatment is a real cause for concern. To give you an idea, let me read you a description of one hypothyroid patient who gave me their path through diagnosis and treatment. In their own words, T3 changed my life. It's as simple as that. At least it should be as simple as that. Before T3 could change my life, I had to get it. That was more difficult than I believe it should be. Lock played an enormous role in my experience. Hypothyroidism is less common in men, so when I went to see my GP suffering from depression, low energy and other symptoms, hypothyroidism was never considered. That's why it was years of different ineffective medications, some with fairly unpleasant side effects before I received full diagnosis. Even then, it was pure luck. An endocrinologist consultant looking into an unrelated issue ran a blood test that diagnosed me. When I was put on T4 and even higher doses were having little or no effect, it was luck that my GP at the time suggested that I asked my consultant about taking T3 as well. Then it was even more luck that my consultant was willing to try using T3. It was only later that I discovered that he was the only consultant in that health board who would have prescribed it. I understand that the medical profession has mixed views on the use of T3. When there are so many people like me who rely on it to function, it's unfair that so much is left to chance. T3 works for me. Most people with hypothyroidism don't need it, but that's not an argument to say that it shouldn't be available to those who do. When I was diagnosed with depression, I went through various different combinations of medications, and the most commonly effective combination didn't work. My GP knew that they had to try other options. When it comes to T3, the options are there, but it's up to the doctor to decide whether they're worth trying or not. That is simply wrong. The effectiveness of a treatment may always have an element of luck, but whether or not someone can get a prescription for a treatment shouldn't. T3 changed everything for me without it. I don't believe that I'd have a job, the friends or the life that I now have without it. I really don't know where I'd be. I hope that Parliament can do more to ensure that it can change the lives of others. That is by no means an isolated case or evidence that we took. Although it's not a remit in this place to make any kind of medical recommendations, this kind of inconsistency and clarity in the healthcare profession cannot be allowed to pervade. Because healthcare is not an exact science, there will always be differing opinions in treatment options. That is what healthcare professionals are trying to do in the vast majority of cases. That would be in line, I would assume, with what we would all take. However, when the medical profession is so split on a treatment, a special condition that can have such a devastating effect on a person's quality of life, I do think that it's incumbent on the Scottish Government, and specifically the Cabinet Secretary called for a strong guidance to be given to healthcare. We cannot allow a situation where patients are left to order their own medicines. Medicines that they know are making a difference and a significant contribution to their quality of life. That would seem a situation that has a clear direction from the Scottish Government to ask the medical profession for guidance to be given to the front line where appropriate. Elaine Smith will now open for Labour. I've made many speeches in this chamber over 20 years, but this is one of the most important. It's quite literally a matter of life and death, including my own. I'm not sure how I can address six years of evidence in around six minutes, but I must start by thanking the lead petitioner, Laryne Cleaver, who resolutely stuck with the process during that time and is in the gallery today along with other thyroid sufferers. I would also like to thank the convener, the committee, the clerks, the Government and many witnesses who gave evidence, including 50 personal stories. One of those stories was my own. I have Hashimoto's, which is an underactive thyroid, and I started on T4 in my 20s, but I became very ill 10 years ago. I would have told my whole story today, but we are short of time, so I just say that I managed to persuade my GP to refer me to Dr Anthony Toft after I was wrongly diagnosed with ME, and Dr Toft put me on T3 and I came back from the dead. Many thyroid sufferers have similar stories. In fact, Brian Whittle told one that is similar to my own, but many more are not here to tell theirs, because, sadly, some have committed suicide or others have died of associated medical complications. Diagnosis and treatment of what is primarily a women's health issue is quite frankly a scandal, and many are disbelieved by the medical profession. It is accepted that 5 to 10 per cent do not do well on T4, and the real figure is thought to be much higher than that, so those people must be helped. The Petitions Committee report, regarding such patients, concludes, as the convener pointed out, that it is important that those patients are believed when they report on-going symptoms to clinicians, and it is also important that they get the right treatment. The Government response recognises that the stronger links of communication and consistency of approaches between GPs in both diagnosis and referral could be developed, and the minister referred to that in his opening. He also acknowledged that an endocrine learning model has been produced, and Dr Gregor Smith was reviewing that, so I am pleased to hear that that is happening. The Government response also expects all clinicians to demonstrate a person-centred approach, and that would certainly help. Again, the Government response acknowledges that symptoms must be taken into account and not just the test results. That is hugely important. In the Scotsman recently, Dr Catherine Calderwood to the chief medical officer said, I want us to move away from the doctor knows best culture to ensure a more equal partnership with people. Shared decision making does not seem to be applying at the moment to endocrine patients because they are not told of all the available treatments, and GPs are not working with them to reach the best treatment decisions. That is the reality at the moment. Six years on from the petition being lodged, unfortunately, the situation did actually get worse with T3 being withdrawn when I started helping with the petition. I thought I was doing it for others and not myself because I thought my own situation was sorted. Due to that, and having admitted that the previous listening exercise did not meet its objectives, I wonder if the Scottish Government would now consider undertaking a proper listening exercise to hear directly from thyroid sufferers here in Scotland. That is something that I put to the minister. Thyroid patients having to buy desiccated thyroid or T3 from abroad rather than just lie down and die is appalling, but so many of them are doing that because there is no other choice. The medical establishment is not listening to them. If I had time, I would have addressed desiccated thyroid, which was a perfectly good treatment before synthetic thyroid was invented in the 80s. People started using it and NDT is widely used abroad, but I really have to limit my remarks to T3 today. I think that the Scottish Government response on T3 is the most important aspect for those needing it to survive. The Scottish Government position is that treatment for hypothyroidism in Scotland should be consistent with the BTA guidance in relation to lyothyronine T3. Clinicians in Scotland can prescribe T3 where it is safe and clinically appropriate on the advice of a consultant in endocrinology. The minister backed that up as well in his speech. The most pressing, life-saving and immediate task for the Scottish Government is to instruct health boards that they cannot stop prescribing T3 to existing patients or stop new patients from accessing it. It is not safe or clinically appropriate for health boards to take patients who are functioning well on T3 off it and put them on T4. It is a death sentence. There are completely different medicines, Presiding Officer. The MHRA states that the products are not considered interchangeable, and they say that, I quote, "...levels of oxygen and lyothyronine are not substitutes for each other." In a letter dated 31 July to my MSP colleague Lewis MacDonald, and he has given me permission to quote it, NHS Grampian says, "...no new patients should be prescribed T3 or armour thyroid products, regardless of the source of the recommendation, regardless of the clinician." He goes on to say, "...patients currently prescribed T3 or armour thyroid should be reviewed by their GP and where possible switched to level theroxine therapy T4." He claims that this advice is evidence-based and reflects the view of the British Thyroid Association, "...isn't and no it doesn't. There appear reviewed studies showing that T3 works and there are many patients like me who can bear witness to that." Let me just again quote the BTA. "...the BTA position statement on hypothyroidism should not be interpreted as a recommendation to not use lyothyronine on an endorsement for its discontinuation." Of course, when T3 cost very little, no NHS boards were stopping it. But what is the cost to human life, not to mention our economy, of taking women off their life-saving treatment? To put that in context, it's like taking insulin away from diabetics and no one would dream of doing that. So it would be helpful as well if the Health Committee would consider undertaking a short inquiry into the issue with direct evidence from the women who are taking T3 and the endocrinologists who are prescribing it, and that would add to the work that the Petitions Committee have done. Health Secretary down south, Lord Roshon, recently commissioned evidence from thyroid organisations, including the British Thyroid Foundation of Thyroid UK. In that report, Professor Chatterjee, the BTA president, says, "...the current uncertainty with lyothyronine treated individuals either been denied ongoing prescriptions or needing to source the treatment themselves at their own cost seems very much against patient interests." The report also shows that prescriptions for T3 have fallen most dramatically in areas where levels of deprivation are greatest and the poorest patients therefore are being hit the hardest. Every MSP in this chamber will have constituents or relatives who have a thyroid disorder and are being let down badly by our health service. I hope that the Government can stop the harm that is being done to them. In conclusion, I remind the chamber that hypothyroidism affects 2 per cent of the population and 95 per cent of sufferers are women, so it's a huge issue of gender discrimination. Most clinicians and men, which led thyroid patient Claire Poehler to say, it's a male-dominated profession actively silencing a female-dominated patient group. That group of women will no longer be silenced and, as their representatives, we must listen and act on their behalf. On behalf of Scottish Labour, can I say that we are on the side of patients, mainly women who are suffering and dying due to the scandal of thyroid diagnosis and treatment in the country. Today's debate, the committee report and the Government response should be a start to getting thyroid justice for them. Thank you very much. I return now to the open part of the debate. I call David Torrance to be followed by Rachel Hamilton. Thank you, Presiding Officer. I'm extremely pleased to be given the opportunity to speak today. I was on the public petitions committee when this petition was lodged in 2012. Since that time, an extraordinary amount of time and work has been contributed towards the consideration of this petition, allowing the committee to reach its conclusions and recommendations. Thanks must be given to a petitioner, Sandra White, Marian Dyer and Ryan Cleaver, my colleague Elaine Smith MSP, the committee clerks and the witnesses that are taking time to give evidence to this committee. It is only by listening to the voices of these people whose lives have been so affected by this issue that we can all begin to learn and understand the challenges that must be tackled. Hypothyroidism is a lifelong debilitating chronic health condition, but is left undiagnosed or is wrongly diagnosed can cause much greater health problems, including high cholesterol, carpal tunnel syndrome, hearing loss and cardiac issues. Therefore, our timely diagnosis and the appropriate treatment is vital. Evidence presented to the committee has shown that many people, mostly women, have endured many years of suffering due to prescribing or wrong medication or misdiagnosis. Whilst around 4.5 million people in the UK have thyroid problems, it is a condition that disproportionately affects women, 20 in every thousand women compared to one in every thousand men. The condition is most common in women aged between 40 and 50. This can also contribute to tell-tale symptoms being missed or simply ignored as they are wrongly attributed to the menopause. I believe that it is more important to note that the most cases are indeed diagnosed and treated successfully. However, for those that aren't, the consequences can be life-changing, causing out-tored misery and detrimental effect in family life and personal relationships. It is now widely understood that accurate diagnosis and treatment of hypothyroidism can be problematic for GPs and endocrinologists due to often vague and non-specific nature of symptoms to be prescribed by patients and are faced with making decisions on the management of patients who display little or no clinical signs of thyroid dysfunction but who do return abnormal tests. With an estimated 2 million people to believe to be to have undiagnosed thyroid issues, the case for constant and effective testing, diagnosis and treatment of thyroid disease and adrenal disorder is clear. The process must be reliable and ensure that GPs and endocrinologists are given the best support possible, allowing them to provide dependent treatment. There have been some harrowing accounts brought to light as a direct result of this petition and the personal stories have provided greater awareness and understanding of the issue. I have been shocked to learn that some patients have suffered symptoms for many years with the condition of going untreated either due to the absence of diagnosis or due to them belonging to a subset of hypothyroidism patients that do not respond to standard treatment. It is crucial that the better understanding and clear diagnostic guidelines are required to prevent any more people suffering needlessly. Those very personal stories have illustrated the adverse effects of misdiagnosis or ineffective treatment can have. Frequently untreated conditions have plunged people into extreme despair and resulted in the inability to participate in everyday life and often act as a barrier to employment. This only serves to intensify an already miserable situation and compounds it with financial uncertainty and additional stress. The importance of an increase in general awareness of the guidelines and developments in professional guidance and public information since the petition was lodged in 2012 cannot be overstated. I would like to highlight the National Institute for Clinical Excellence and Clinical Knowledge summary regarding hypothyroidism, which is in line with both the British Fire or dissociated physician statement and the Royal College of Physicians guidelines and to welcome their work in developing new guidelines on assessment and management of a thyroid disease due for completion in 2019 and the commitment by the Scottish Government to improving diagnosis and access to appropriate treatment for thyroid disorders. Debates such as these are extremely important in helping to raise awareness and improving people's understanding of complex issues such as these and I'd once again like to offer my heartfelt thanks to everyone that has contributed to this process since 2012 and allowed us to reach where we are today. I welcome a continuation of discussions surrounding the development of future clinical guidance and public policy and look forward to further consideration being given to moving towards the development of a single national protocol for testing. Thank you very much. Can I remind those in the public gallery that we do not permit applause in the public area? Thank you very much. I'll call Rachel Hamilton, followed by Jackie Baillie. First, I'd like to thank Sandra White for highlighting the importance of thyroid-related conditions and for working so hard to bring us to this point today. I'd also like to thank Elaine Smith for her hard work and for bringing her story to Parliament. The consideration of the petition has spanned nearly six years and in that time a significant range and volume of evidence has been gathered by way of submissions and oral evidence to the committee. I'd like to thank those who have made such valuable contributions. According to NHS choices, in the UK, thyroid underactivity affects 15 in every 1,000 women and 1 in 1,000 men. Whilst most are effectively diagnosed, many live on with mental and physical problems arising from the lack of diagnosis. Back in December 2012, the petition was submitted and it called on the Parliament to urge the Scottish Government to take action to ensure that GPs and endocrinologists are able to accurately diagnose thyroid and adrenal disorders and provide the most appropriate treatment. Many years later, we still learn of people living with thyroid conditions who are still negatively impacted upon a daily basis. It was only this morning that I spoke to a friend and a GP from my constituency who spoke about how hard it is to diagnose thyroid conditions because they can mimic other conditions. The petition highlighted four main concerns and raised the need for the inclusion of tests for free T3 and reverse T3 thyroid hormones for medical professions to acknowledge that adrenal insufficiency exists and to incorporate the Adrenal Stress Index test, which NHS thyroid testing procedures. There's lots of big words today and I'm eating my own tongue trying to say them, so apologies for that. Moreover, it calls on medical professions to acknowledge and take account of variations in individual biochemistry and tailor treatment accordingly, which we've heard lots of members talk about today. Treatment may consist primarily of T4 only, T3 only, or natural desiccated thyroid. The petition raises concerns that currently NHS procedures do not include testing of autoimmune status, minerals, enzymes and vitamins. To talk a little bit about the experience of those with thyroid conditions, people are living, real people are living, day in, day out with those conditions, and people's experiences of living with thyroid conditions range from weight gain to lethargy and depression. I'm grateful for all those brave people who contributed to the evidence sessions in front of the committee just to tell those stories. In the telegraph just yesterday, I read about a remarkable woman, Fiona McGowan, who is living with hypothyroidism, and she realised she was putting on weight and claimed her mother's death as a reason. Despite living a very healthy and active lifestyle, eventually it was a nutritionist who realised she had an endocrine issue. Whilst she then went on to obtain the correct medication to help in some way to treat her condition, the pricing of her medication then became an issue. We know that people do self-medicate and those people go on to purchase medication from the internet and perhaps through other countries. That's mainly due to the high costs and availability in this country. In conclusion, we know from the contributions today and various accounts of those with thyroid conditions that those issues have had a significant impact on people's lives. Elaine Smith suggested for the health committee to conduct an inquiry to take evidence from those people is a great idea. While the majority of patients with thyroid conditions will be diagnosed and treated successfully, there remains a proportion of patients for whom this is not the case and we must support them here. The Scottish Government must take note of those issues. There is a need for a review in the way in which professionals deal with thyroid conditions, whether through guidelines developed by independent experts, including health authorities and clinical boards, or through peer-reviewed research on patient treatment. Finally, whilst I acknowledge the licensing of medication is reserved, it would be beneficial for a better dialogue to ensure that the supply issues of T3 are dealt with to avoid the cost of medicines increasing, which ultimately leads to people making those internet purchases. I look forward to the Scottish Government supporting those people and, once again, I thank everybody who contributed. Thank you very much. I call Jackie Baillie, the last speaker in the open debate. Ms Baillie, please. Thank you, Presiding Officer. It's over a year since we last debated access to T3 for those suffering from thyroid conditions. I beg the question, what has changed? Despite all the activities that have been described, I fear that it is not matched by reality on the ground. I welcome the opportunity given to members by the Public Petitions Committee in bringing this to Parliament again because the problem is not yet fixed. Essentially, as Elaine Smith said, this is an issue of women's health equality. 3 million people in the UK suffer from a thyroid problem. 95 per cent of them are women. Hypothyroidism is a crippling illness, and many people are being failed by poor diagnosis and poor treatment. Some, indeed, left with no diagnosis and no treatment at all. Patients in the UK wait on average three times longer than patients in the US for treatment. Because the condition progresses slowly, it can be many months, if not years, before treatment actually begins. T4 is indeed the standard treatment for patients, but there are some who do not get any benefit from this at all, but instead thrive on T3. There is no clinical reason for not prescribing T3. It is simply a matter of cost. I have no doubt that the drug company responsible for the manufacture of T3, Concordia, is engaged in excessive profiteering. The Competition and Markets Authority found that Concordia had abused its dominant position by increasing the charge to the NHS by 6,000 per cent in the last decade. They should be ashamed of themselves. When we last debated this, the cost of 100 T3 tablets in the UK could be as much as £900. In Turkey, it is £1.25. In Greece, it is the equivalent of £3.24. That is a shocking and unacceptable difference. I know that pricing of medicines is reserved, but it has been more than two years since the Competition and Markets Authority expressed that view, yet we do not appear to have a final decision and little has changed on the ground. We have heard from numerous speakers this afternoon that there are very real and very serious physical and mental health challenges for women who cannot access T3. However, despite that knowledge and guidance from the Scottish Government, health boards are withdrawing T3 because of the cost. There is little regard for the actual consequences to individuals, and that is simply not good enough. I want to know in practical terms what the Scottish Government will do now. Last time we debated this, I spoke about constituent who was on a combination of T4 and T3, and she is in the gallery today. She has a genetic condition that makes T4 largely ineffective. Her consultant knew that, but tried to increase the dose of T4. There is absolutely no clinical reason for doing so. Her condition worsened, and she had to give up her job as a university lecturer. She is on T3 now after a long fight, but her consultant is trying to reduce the dosage again based on cost, not clinical need. The cabinet secretary is aware of all this because I wrote to her about it and I wrote to her predecessor about the matter. In a rather formulaic response, she says that it is a matter for health boards, but that is an absolute abdication of responsibility. How can it be right that, Grampian, you cannot get T3, but in Greater Glasgow and Clyde, after a bit of a fight, you can? Where is the fairness and equity in that? I am sure that the minister is not suggesting that women should move to another health board area, or perhaps they should book a flight to Turkey or Greece. Although ludicrous, it would undoubtedly be cheaper to prescribe T3 with a dose of sunshine. The minister set out how some actions are being taken, but that is not matched by the experience on the ground. The Scottish Government cannot sit by and watch health boards do their own thing. Will the minister this week write to health boards to tell them to allow T3 to be prescribed? Will he monitor what happens afterwards? It is not enough to issue guidance and hope that they follow it. He needs to be very robust. Presiding officer in finishing, the NHS was founded on the principles of meeting everyone's needs free at the point of delivery and based on clinical need, not ability to pay. It really is time for the Scottish Government to deliver on those principles and not preside over a postcode lottery in care, which has such dreadful consequences for the women affected. Thank you very much. David Stewart, close for Labour, please. Mr Stewart. Thank you very much. I think that this has been an excellent, well-informed debate. I also thank the Petitions Committee for all their hard work. I would particularly like to acknowledge the contribution of Elaine Smith, who has been a fantastic campaigner on this issue. Well done to Elaine Smith, you have made a huge difference in this campaign. I also warmly thank the campaigners in the gallery for their courage, their patience and their dedication on this issue. They should all be applauded for the hard work that they have done over many years. Presiding officer, I was pleased to be the convener of the Petitions Committee when the petition was first received. I noticed that there are a couple of survivors from these days in the shape of Angus MacDonald and David Torrance, who were involved in the evidence sessions. While some may feel that this is a very technical issue and, undoubtedly, it is, the key issue is an absolutely crucial issue, particularly about women's health. As Jackie Baillie said, 95 per cent of those effects are women. As Elaine Smith said, given that at least 2 per cent of the population suffer from thyroid disease, it is clear that many of our parliamentary colleagues, many of our neighbours, many of our friends and many of our constituents will be in this patient cohort. It is quite obvious from the evidence taken and the report produced that thyroid diagnosis and treatment as part of endocrinology has lag behind other areas such as diabetes. Members will know that specialists in this area suffer from metabolic disorders, some cancers and excesses for insufficient production of hormones. It is interesting to quote the British Thyroid Association, as others have done, that they have expressed real concern that taking patients off T3 has been due to cost and not clinical lead. I may say that, but let me just quote their words in their guidelines of December 2016. They say that the BTA executive has been made aware of recent difficulties encountered by some patients in obtaining T3. In some instances, patients who have been long established in T3 had their treatment abruptly withdrawn and some commissions have received requests from local health authorities to switch patients from T3 to T4. We are concerned that these actions are driven by cost considerations rather than clinical need and it is the BTA position on its management that it is inappropriate to cite to support those requests. In fairness, the Scottish Government has made it clear in their response to the committee that T3 prescribing must continue. They say that the Scottish Government's position is that the treatment should be consistent with the BTA guidance in relation to T3. However, as Jackie Baillie has said, could the minister perhaps in his wind-up make it very clear that where appropriate there should be no postcode lottery on this issue and patients should have the ability to get the medications where necessary. I think that that is vitally important. During the consideration when I was a convener, we were issued with a dossier of over 50 patients with different stories. Time I sense, Presiding Officer, is against me to give them full justice, but perhaps if I can just quote one of them. That was Leanne and I'm just quoting. She said, prior to my diagnosis, I was slipping into such a black hole, reacting very badly to antidepressants which caused panic attacks, full body spasms in Sonia, clenching jaw, two saddle thoughts and list goes on. When I poured this reaction to my GP, her answer was to double the dose. That was of antidepressants. In summary, Presiding Officer, I first of all again would acknowledge the fantastic work that the Petitions Committee have done on this. It just shows the very innovative role that the Petitions Committee can carry out in this Parliament. Again, I would like to thank the committee and the campaigners for all the sterling work. As a member of the health and sport committee and I can't speak for the rest of the members, I would certainly support a full inquiry by the health and sport committee into this whole matter. I know my colleagues who are also on the committee and the chamber may wish to support me on that issue. Thank you, Presiding Officer. Thank you very much, Mr Stewart. I call on Miles Briggs to close with the Conservatives. Mr Briggs, please. Thank you, Deputy Presiding Officer. As members from across the chamber have today, I think that it's important that we pay tribute to the petitioners and the opportunity which the petition committee has given to Parliament again today to debate this important issue. I think that it's particularly important to pay tribute to the work of Lorraine Cleaver for her relentless campaigning on this issue, as well as past and present members of the Parliament's Public Petitions Committee since 2012 now for the work that they've been doing to highlight the serious concerns around the quality of care and treatment for patients in Scotland with hypothyroidism. I also think that it's important to note Elaine Smith's consistent work in Parliament on this issue and her personal interest. I always think, in my time as being MSP, that when we take up concerns of individual constituents it's important, but the passion which I know Elaine has brought to this and brought to all members across the political spectrum in here I think is really important to note in this debate. I also want to welcome and commend the work of the British Thyroid Foundation, which provides advice and support to people with thyroid conditions throughout the UK and a number of my constituents have asked me to make that point as well. Hypothyroidism affects hundreds of people in every constituency in Scotland, and for too long now they've been waiting for action. As David Torrance and Rachel Hamilton mentioned, the risk of initial misdiagnosis can be significant because some of the common symptoms mirror symptoms of numerous other conditions. The original petition urged the Scottish Government to take action to ensure that GPs are able to accurately diagnose thyroid and adrenal disorders and provide the most appropriate care. All of us share that aim, but as Jackie Baillie has stated, I don't think that we've seen enough action and progress that is actually needed. Early access to accurate blood tests is therefore vital, and I welcome the points that the minister made with regard to the report on this, and it's important that we now see that taken forward. The lack of specific formal Scottish guidelines on diagnosis and management is a key issue that was raised by many patients ahead of the member's debate and this debate as well. I certainly have received emails from constituents ahead of this debate, so I welcome the points that the minister has made regarding the development of pathways of care, but I think that we really need to see timescales around that and hold the minister to his word on what the Scottish Government has said they will take forward. I wanted to also touch based on the cost of drugs, which has also been mentioned by the petitions, the committee chair and also by Jackie Baillie, because the work of the competition and markets authority in relation to the cost to the NHS is important. Where companies have been found to breach competition law, the NHS should seek damages and invest that money into patient care and front-line services. Most recently, the manufacturer Concordia has been provisionally found to have abused its position in order to overcharge our NHS. Where companies have been conclusively found to have breached competition law, the Government should seek damages and invest that money in our NHS. I think that... Yes. Well, actually, the member said there was last minute. Oh, sorry. I must have additional time. If you don't mind losing a little, yes. All right. Thank you, Presiding Officer. It was just to say that, unfortunately, even though there are two other companies now producing it, the price doesn't seem to have come down. Miles Babes. I know that point. Given my 30 seconds, well, maybe he discussed that outside of the chamber. But I think that it's important, and to finally sort of close on this point, that we note Elaine Smith's ask on this, that a short inquiry for the Health and Sport Committee to undertake. I support this call, and I think that it's also important that we use that potentially to follow up the conclusions and recommendations from the report. Today's debate is an important step forward, and the Petitions Committee has been helpful in moving that debate forward. But what we must see now is real progress to take forward these recommendations for all the people we represent. Thank you very much, Mr Briggs. I call on Joe Fitzpatrick to close the Government minister, please. Presiding Officer, again, I want to put on record that I'm very grateful to members who've shared their experiences this afternoon, and I appreciate the work that some members have put into this in advancing this issue on behalf of their constituents. The Scottish Government has and will continue to strive to ensure that everyone in Scotland, living with thyroid and adrenal conditions, are able to access the best possible care and support. I recognise the passion that we've heard from across the chamber, as members have made their points. Everyone here recognises that there is, I think, a small minority of people for which T4 is not an appropriate treatment. For those people, I understand particularly from hearing the personal accounts across the chamber today and reading the accounts put forward as part of the petition that the journey to diagnosis and treatment can therefore sometimes be longer than we would expect. We must ensure that people receive the most timeliest diagnosis and the correct form of treatment. Referring to our realistic medicine approach, all discussions making about an individual's health and care should focus on the individual and be discussed and agreed with them and their clinician. It's unfortunate that in some cases there has been miscommunication in regards to prescribing T3, and in some cases, as we've heard from Rachel Hamilton and Brian Whittle, that's led to patients buying medication online, sometimes NDT or other medicines. We obviously want patients to be able to access safe treatment options and would like to urge patients to discuss options with their healthcare profession because patient safety is paramount. Miles Briggs. Miles Briggs. I thought that what was a useful point made during this debate was the fact that we do see this postcode lottery across Scotland. From what Jackie Baillie said, would the minister commit to writing out to all health boards to make sure that that guidance is being followed? Minister, I'll come to that point. First of all, I want to re-emphasise that the Scottish Government's position is that T3 can be prescribed by an endocrinologist if that is considered to be the safest and most effective course of treatment for the individual. On that point, and the point that was made, I think, first by Elaine Smith and also by Jackie Baillie, I think that when Elaine Smith put the point to me, she asked if I would instruct health boards and of course Jackie Baillie then got to the form of words that ministers need to use in terms of these things. I absolutely will write to health boards to confirm that patients who need access to T3 and endocrinologists are able to obtain it. I think that that is really important. Ms Baillie, I am very much welcome his confirmation of that, but will he monitor whether they pay attention to him or not? Minister. I suspect that if they do not pay attention to me, then there is a large number of members in this chamber who will come back and make sure that I am aware of that. I think that that is a really important point. If people are not accessing the treatment that we all think that they should be getting, that their endocrinologist say that they should be getting, then please write to me. I think that we need to chase that up, because it is not acceptable for some of the stories that we have heard and some of the experiences that we have heard. Moving on, in terms of the pricing of medicines, Rachel Hamilton and Johann Lamont both mentioned that pricing of medicines is a matter that is reserved to the UK Government. Scottish Government officials have been working with the Department of Health in the preparation of a UK-wide health services medical supplies act, which was given royal assent in April 2017. In summary, that act sets out a range of measures to control the cost of drugs, including a power to limit the price of unbranded medicines, generics where competition in the market fails and companies charge the NHS unreasonable lay-high prices. Jackie Baillie made a really good point about one example. We will continue to liaise with our counterparts in the Department of Health and Social Care in relation to issues where Scotland's interests are affected. I urge anyone who is unhappy with their prescribed treatment to talk to their healthcare practitioner who is responsible for that care. Another point that was made that I did not manage to cover was about research. The Scottish Government's chief scientist officer is responsible for funding high-quality research projects, building capacity in the NHS and ensuring that research in the NHS is carried out to a high standard. The chief scientist would welcome applications for research projects aimed at the management of hypothyroidism. Those would go through the same rigorous independent review, of course, as other applications. We would look to academic institutions to lead on well-designed research to address the evidence gaps, particularly around where T3 and T4 co-prescribing might be helpful. I understand that the endocrinology community in Scotland would be happy to consider and assist with those proposals. Although there are areas that we can still work to improve on, from the short debate and the Government's response to the petition that people see as an important area, we very much appreciate the work that the committee and the petitioner, Lorraine Cleaver and others in the gallery, have taken to get us to this point. We will continue to work together across Government and health and social care services to make the difference that we all want to see for people impacted by thyroid conditions. I call on Angus MacDonald to close with the committee. A tight seven minutes, please, Mr MacDonald. Okay, thank you, Presiding Officer. When we last debated the issue and the petition in the chamber during Eileen Smith's debate, I gave her an assurance then that the Public Petitions Committee would bring this issue back to the chamber to allow it to be debated more widely. I'm pleased that we've been able to honour that commitment, albeit a smaller time slot than some would have preferred. I'm also pleased that, thanks to the Presiding Officer's generosity, we've heard more about the issue from Eileen Smith than would normally be the case in a debate of this length. It was right that we did so, given the strong interest and backing that Eileen Smith has shown for this petition from day 1. In fact, as I said in the previous debate, I followed this petition from day 1 to having been a member of the committee since 2012. Although drafted in broad terms, the petition, as we've heard, focused particularly on hypothyroidism and those patients in particular who continue to experience symptoms while undergoing the recommended standard treatment. Now, this is clearly a complex issue, and one that the committee has rightly taken its time to explore and examine all sides and arguments put before us. What is clear is that, whilst there is no one-size-fits-all solution, there is the chance to listen to patients' experience as well as introducing a clear single protocol for the whole of Scotland. I'm pleased to hear from the minister that the Scottish Government is committed to improving diagnosis and access to appropriate treatments for thyroid disorders. It's 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. So, Presiding Officer, can I take this opportunity before I go any further? To thank all the members who have taken part in the debate today, we've had informed and passionate contributions from everyone who contributed, not least Eileen Smith, who, as I mentioned earlier, knows and understands the complexities of the issue inside out. There were also salient contributions from Brian Whittle, who highlighted what he likened to a postcode lottery, the differences in experiences of diagnosis depending on who undertook the diagnosis, and highlighted a constituent who was lucky enough to be prescribed T3 in his constituency. David Torrance highlighted the need for effective testing and clear diagnostic guidelines. Eileen Smith, who gave her own heartfelt experience and highlighted the intervention of Dr Toft, who, incidentally, we were pleased to take evidence from during the course of the petition. She rightly highlighted the ludicrous situation where desigated thyroid is having to be sourced by patients abroad. Rachel Hamilton highlighted concerns regarding the various types of treatment and the lack of proper diagnosis leading to self-medication. Most speakers, including Dave Stewart, have raised the issue that there has been a fundamental lack of understanding by many GPs. Jackie Baillie brought to our attention that a year down the line since the last debate, it is still not fixed, and I share that frustration as I am sure all the members of the committee do along with the petitioners. Ms Baillie also highlighted the scandal of concordia charges and the postcode lottery regarding diagnosis. Dave Stewart also sought an end to the postcode lottery and supported calls for a full inquiry by the Health and Sport Committee. Miles Briggs joined calls for early diagnosis and highlighted the cost of the drugs, especially through concordia, although the clarification from Eileen Smith was welcome that costs are coming down. Of course, the minister's commitment to contact health boards regarding supply of T3 is extremely welcome indeed. The Public Petitions Committee is aware that the then Minister for Public Health and Sport met Eileen Smith, MSP and the petitioner, Lorraine Cleaver, earlier this year in March, shortly before the committee published its report on the issues raised in the petition. It has been extremely helpful to hear the views of the 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 carrying out this duty, clinicians are guided by evidence-based guidelines, and those guidelines are 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 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 this work with awareness of hypothyroidism and the challenges experienced by patients and the influence that has brought to the additional sources of guidance that have been produced during the life of this petition. The committee welcomes the minister's confirmation that NICE intends to develop a guideline on thyroid disease with publication expected in November 2019. We clearly welcome that and hope very much that the petitioners and others with an interest in this petition will engage in the development of that guideline. We also welcome the work that has been undertaken to develop stronger links of communication and consistency of approach between GPs and the diagnosis and primary care referral for those with thyroid conditions. Note in particular that the Deputy Chief Medical Officer met representatives from NHS Education Scotland to develop an endocrine learning module for GPs. In fact, that development is very welcome indeed. The committee understands that the chief medical officer's speciality advisor for endocrinology, whom I mentioned earlier, has been asked to review this in light of the issues raised through the petition. A loader seems to be an acknowledgement that standard treatment is not a one-size-fits-all and doesn't work for everyone. The convener in our opening remarks touched on the fact that too often, when the committee considers a health-related petition, one of the themes that seems to emerge is that patients are often not listened to and that has to change. That 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 to promote realistic medicine that ensures 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 or public policy. In this regard, the committee was pleased to see in the Scottish Government's written response to the committee's report 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 as to the evidential basis of both the current system of diagnosis, treatment and the changes that are called for in the petition. The committee recognises 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 for all the public bodies, clinical representatives and thyroid patient representatives who have engaged with the committee and its work in considering this petition. Thank you very much. Thank you very much. That concludes the debate. I have a short point of order. The deputy convener might have misheard me because he said earlier on the record that the price does not seem to have come down at all. I think that it is important to set the record straight on that point. As you know, as a former resident of the seat, that is not a point of order, but I will let it pass. I am in a good mood. That concludes the debate on the report of petition PE1463 on thyroid and adrenal testing diagnosis and treatment. It is now time to move on to the next item of business. I will now let the front benches take their positions, please.