Meeting of the Parliament

Meeting date: Wednesday, November 22, 2017

Official Report 884KB pdf

---

Thyroid Conditions

The final item of business is a members’ business debate on motion S5M-07373, in the name of Elaine Smith, on thryoid patients deserving fair treatment. The debate will be concluded without any question being put.

Motion debated,

That the Parliament notes petition PE 01463, which has been under consideration by the Public Petitions Committee since 2012 and highlights the problems with inadequate diagnosis and treatment of thyroid conditions; understands that at least 2% of the population will suffer from hypothyroidism in their lifetime, with some doctors believing that the rate is much higher; recognises that the chronic condition affects mainly women (95%); accepts that, in the 1980s, the standard treatment of Dessicated Thyroid Hormone (DTH) was replaced by synthetic thyroxine (T4); notes that T4 is a prohormone that must be converted to T3 (liothyronine), which is the biologically active hormone; understands that the Royal College of Physicians officially recognises that 5 to 10% of patients on T4 do not do well, a figure believed to be substantially higher by others in the thyroid field; takes account of the fact that many patients are wholly reliant on T3 or combination therapy for health and wellbeing; expresses concern that some health boards, including NHS Lanarkshire, are, it believes, issuing controversial guidelines that imply that GPs can no longer prescribe T3; considers any such instruction to be a breach of their duty of care to those relying on T3 to live, discriminatory in terms of gender and potentially in breach of Article 2 and Article 14 Protocol 12 of the European Convention on Human Rights, and notes calls for health boards to ensure that patients continue to receive T3.

17:03  

I thank members who signed my motion, which allowed me to bring this important issue to the chamber.

This is my first members’ business debate this parliamentary session and, as far as I am aware, it is the first time that thyroid issues have been exclusively debated in the Parliament. That is surprising, as hypothyroidism affects 2 per cent of the population and, given that 95 per cent of sufferers are women, it is a big issue for women’s health. However, perhaps that explains why not enough attention has been paid to the issue by politicians or the medical establishment, as both are male dominated. Clare Pullar, who wrote to me recently, summed it up well when she said that it is

“a male-dominated profession actively silencing a female-dominated patient group”.

Perhaps if 95 per cent of thyroid sufferers were male, and thyroid issues caused them to become economically inactive, diagnosis and treatment might be dealt with differently. There are some men with thyroid problems, but it is undoubtedly a medical issue that affects thousands of women and the scandalous lack of appropriate diagnosis and treatment is a matter of gender discrimination.

Women are now fighting back in ever-increasing numbers, despite being ill. They are becoming experts in the field of endocrinology, and the current threat of withdrawal of liothyronine—or T3, as I will refer to it—has driven them even further. The improve thyroid treatment campaign has motivated people to become involved in the demand for appropriate treatment, and campaigners have also been motivated by the fact that so many women—mothers, sisters, daughters and constituents of MSPs—are suffering unnecessarily, being wrongly diagnosed, living half-lives, dying of heart failure or myxoedema coma, or committing suicide.

There are some patients in the public gallery tonight, and others are watching the live BBC feed, so I hope that the minister will seriously address the issues raised and will not stick to a script that is perhaps prepared by civil servants based on information from the intransigent male-dominated medical establishment.

The thyroid gland controls total health and wellbeing and has been described as the body’s engine. In the 1970s, the standard course of treatment for hypothyroidism changed from naturally desiccated thyroid, or DTH, to levothyroxine, or T4, as I will refer to it from now on. It is a synthetic hormone that is inactive and requires the body to convert it to T3, which is the active form that is needed to function. It is difficult to get a thyroid diagnosis in the first place, as many of the symptoms mimic other conditions such as depression, the menopause and even Alzheimer’s, and many women are told that they are borderline and are not given treatment, despite displaying hypothyroid symptoms. Untreated, they are likely to cost the national health service in other ways, such as through infertility treatments, antidepressants and obesity, because the problems that are associated with thyroid disorders include depression, insomnia, infertility, anxiety, hair loss, weight gain, breathing problems and extreme fatigue.

I have personal experience of all of those, as I have an underactive thyroid. I was originally on T4, but I would not be standing here today if I had not challenged a misdiagnosis when I became symptomatic again a few years ago. I was finally put on T3, which quite literally brought me back from the dead. My full story is available on the Public Petitions Committee website, if anyone wants to look at it.

When I started helping Lorraine Cleaver with her petition on the issue in 2012, I thought that I was doing it for others because my situation seemed to be resolved. Over five years later, along with many other women, I am faced with the withdrawal of my life-saving T3 simply because of cost and not because I do not need it. Unbelievably, we are now going backwards on diagnosis and treatment rather than moving forward with the up-to-date research that is readily available. It is officially admitted that 5 to 10 per cent of patients do not do well on the usual treatment of T4 and that many are unable to convert it. As the medical establishment will no longer allow the use of DTH in the United Kingdom, the only alternative course of NHS treatment for those patients is T3, which is an entirely different medicine from T4. The human body has to convert T4 into T3, and we know that some patients just cannot do that. Therefore, to suggest that patients on T3 can be safely moved to T4 is appalling and shows a complete lack of understanding of thyroid function.

The eminent Scottish endocrinologist Dr Anthony Toft recently said that he suspects that, in time, we will go back to using DTH, which some patients currently buy privately from abroad, but in the meantime all that we have is T3. It is a terrifying prospect for many women that that life-saving medicine is no longer being prescribed, on the instruction of health boards, aided and abetted by NHS Scotland. Most patients cannot afford to buy privately, and they should not have to, but the alternative is unthinkable. The British Thyroid Association recognises that the main reason for the withdrawal is not medical but the astronomical cost that is charged by the company that until recently was the only producer of T3 in the UK. In Germany, the cost of 100 tablets is £25, in Norway it is £15 and in Turkey it is £1.25. Concordia charges the NHS an unbelievable £922 for 100 tablets, a point that was helpfully highlighted yesterday by the BBC. That is a near 6000 per cent increase over the past few years. Why can it not be sourced from abroad? The issue must be resolved by tackling the price and not by attacking patients.

I turn to NHS Lanarkshire, which is mentioned in my motion. Its new clinical guidance on hypothyroidism, which was written by two diabetes experts and a general practitioner, is full of wrong information and out-of-date research, including an irrelevant paper on overactive thyroid issues. When I challenged the board, it admitted the errors, but that guidance must now be recalled from all the GPs it was sent to. The board must then ask thyroid experts, preferably those who know about T3 and who know the difference between hypothyroidism and hyperthyroidism, to rewrite it. Frankly, it is shocking that that guidance could be produced in the first place.

Last year, I got wind that the board might be issuing instructions to GPs not to prescribe T3 and to remove it from patients who were on it. The board denied that and it was only after lodging freedom of information requests that I discovered that there had been such correspondence, including an email saying that T3 is “an expensive medicine” and telling a GP practice that it would have to bear the cost if it prescribed it.

There is no doubt that the underlying message to GPs is to stop prescribing T3. That is outrageous, but it is working, because many women are now telling me that they have been taken off it and they will probably be coming to all their MSPs to tell them the same thing.

GPs have a duty to prescribe the drugs that their patients need. They should be guided by the principle of doing no harm.

The BTA’s 2015 statement has been misinterpreted by medics, because of which the BTA has recently had to clarify its position by saying:

“the BTA position statement on hypothyroidism should not be interpreted as a recommendation to not use Liothyronine or an endorsement for its discontinuation.”

That is pretty unambiguous. It goes on to say that patients who are on it should continue and that new patients can be treated with T3.

Let us be clear: there are numerous rigorous scientific studies showing that T3 is a safe and effective medication. There are hundreds of Scottish women on T3, including me, who have been saved from a slow, lingering death and there are hundreds more who could be saved. Let us remind ourselves that the medical establishment admits that up to 10 per cent cannot function on T4. That means that it admits that well over 1,000 women in Scotland cannot function on T4. What is the choice for them if their T3 is taken away?

Without thyroid hormones, patients die. Taking away T3 will undoubtedly result in patient death. Will the minister put a stop to the removal of T3 and send a clear message that GPs must prescribe it?

I will finish with the words of Morag Webster, who wrote to me bravely about her situation. She said at the end of her letter:

“They have taken my 20s, my career, my friends, but I’m a better person for it”—

Imagine her saying that. She continued:

“I’m just disappointed they have robbed me of a chance to have a family of my own.”

This is a massive women’s health scandal, which must be urgently addressed. Thyroid patients deserve fair treatment.

17:11  

I hope to be here for the whole debate, but I am hosting an event this evening, so I apologise if I have to leave.

I am pleased to contribute to the debate, not least because petition PE1463, by Sandra Whyte, Marian Dyer and Lorraine Cleaver, on effective thyroid and adrenal testing, diagnosis and treatment, has been live with the Public Petitions Committee for nearly as long as I have served on it, which is just over five years. In that time, we have taken large amounts of evidence on the subject.

Before I go into any detail, I congratulate Elaine Smith on bringing the issue to the chamber for debate and I applaud her for the way in which she has championed it in the Parliament, such as by attending the Public Petitions Committee, and outwith the Parliament, most notably with her own and other health boards.

Will the Public Petitions Committee bring the issue to the chamber so that it can be debated more widely?

Indeed, yes. A draft report will come the committee in the next few weeks. We look forward to a further discussion in the chamber on, I hope, a not-too-distant date.

I thank Elaine Smith for outlining in detail in her speech what is a complex issue.

As I said, the Public Petitions Committee has taken extensive evidence on the issue over the years. Recently, it took evidence from Dr John Midgley, who believes that there should be an unbiased review of present protocols for treatment and diagnosis in the light of new evidence that shows that the single use of thyroid stimulating hormone as a test for thyroid deficiency and for treatment is unsuitable and misleading. Dr Midgley stated that the test for thyroid stimulating hormone is now overreaching, resulting in a significant number of patients being wrongly diagnosed and wrongly treated, or not treated at all.

A constituent who is a thyroid patient contacted me. She was diagnosed with auto-immune thyroiditis—Hashimoto’s thyroiditis—and hypothyroidism in September 2016. She is taking T4 levothyroxine medication, which is a monotherapy drug that supplies the thyroid with an inactive hormone—T4. As she is a patient who does not convert T4 into the active hormone T3, the levothyroxine drug is, she states, “next to useless” for her. She has had to lobby hard for months with her GP practice and Forth Valley NHS Board in order for them to provide her with even one other thyroid medication option. NDT, or natural desiccated thyroid, is controversial due to its animal content and unlicensed status in the UK—although I understand that a number of patients are sourcing it abroad—while synthetic T3 is not entertained at all, because of the cost.

As a result, my constituent has had to pay for a private endocrinologist to speak on her behalf to her GP and the health board before they would give approval for her even to trial synthetic T3 as an alternative treatment. She is understandably annoyed at the way she has been forced to “jump through hoops”, as she puts it, to have her condition treated more effectively. As a result of her experience, my constituent feels that thyroid patients should not be limited to a single medication option that may not work for them.

It is clear that, as Elaine Smith mentioned, there is a cost issue. I was shocked to see yesterday that the Canadian drugs giant Concordia, one of the producers of liothyronine, has been hauled over the coals by the Competition and Markets Authority for overcharging for the product. It turns out that in 2007, the NHS paid about £4.46 per pack, but that by July this year, the cost had risen to £258.19 per pack—an increase of almost 6,000 per cent.

The CMA’s chief executive, Andrea Coscelli, said yesterday:

“Pharmaceutical companies which abuse their position and overcharge for drugs are forcing the NHS—and the UK taxpayer—to pay over the odds for important medical treatments. We allege that Concordia used its market dominance in the supply of liothyronine tablets to do exactly that.”

That is scandalous, in anybody’s book.

I believe that, until earlier this year, Concordia was the only supplier of the drug. Clearly, any future competition will be welcomed by the 2 per cent of the population who suffer from hypothyroidism, not to mention the NHS.

Will the member take an intervention?

Can I take it, Presiding Officer?

Yes, briefly.

It is just a brief clarification, Presiding Officer. As I understand it, others have set a similar price.

Thank you for that clarification.

I look forward to improved diagnosis, easier and cheaper access to drugs to treat hypothyroidism, and greater availability in this country of natural desiccated thyroid, which is currently being sourced abroad by sufferers who are desperate to find any form of relief from the symptoms.

I also look forward to debating petition PE1463 further at future meetings of the Public Petitions Committee, and I hope to see some positive action in the future.

17:17  

I congratulate Elaine Smith on securing the debate, acknowledge her work on this important issue on behalf of her constituents with thyroid conditions and thank her for sharing her personal experience. I also pay tribute to those behind the petition that was submitted to the Parliament’s Public Petitions Committee in 2012 for the work that they have done in highlighting the serious concerns around the quality of care for and treatment of hypothyroidism.

I commend the work of the British Thyroid Foundation, which provides advice and support to people with thyroid conditions throughout the UK. Hypothyroidism affects hundreds of people in every constituency in Scotland. As the motion suggests, the condition affects about 15 to 20 women in every 1,000, but only about one man in every 1,000.

The risks of initial misdiagnosis can be significant, because some of the common symptoms mirror the symptoms of numerous other conditions. Early access to accurate blood tests is therefore vital. Hypothyroidism is a serious condition, but, as Elaine Smith said, if it is treated correctly, in the vast majority of cases those with the condition can lead a normal life as long as their treatment is monitored appropriately.

The original petition urged the Scottish Government to

“take action to ensure GPs ... are able to accurately diagnose thyroid and adrenal disorders and provide the most appropriate treatment.”

All of us share that aim.

While some progress has been made since 2012, much more still needs to be done. The lack of specific and formal Scottish guidelines on the diagnosis and management of hypothyroidism is a key issue that has been raised by many patients ahead of the debate.

The Scottish intercollegiate guidelines network is not required to follow the National Institute for Health and Care Excellence’s lead in providing full guidelines on the topic, and I understand the concerns that have been expressed and the focus on the specific needs of a significant minority of individuals who do not successfully convert T4 to T3. I hope that SIGN will be prepared to engage positively with campaigners on the issue and that it will look at how we can make changes.

I very much share Elaine Smith’s concerns about the guidance from some NHS boards that implies that T3 should not be prescribed, given that that treatment, or its use in combination therapy, is essential to maintaining the health and wellbeing of patients who are not helped by T4. The decision to prescribe T3 or, indeed, any non-standard treatment, must be an informed, clinical decision made by a GP and based on the individual circumstances and the best interests of the patient.

The work of the Competition and Markets Authority in relation to the costs to the NHS of the only T3 product available in this country is welcome, and I look forward to the CMA’s findings.

As I prepared for the debate, a big theme that emerged for me is the need for more research into a range of aspects that are related to the diagnosis and treatment of hypothyroidism. As Elaine C Smith—I apologise; as Elaine Smith said, the biochemical processes involved in thyroid function and the interaction between all the respective hormones are extremely complex and not yet fully understood.

There is also significant concern that not enough research has been carried out into the specific group of people who do not respond to the standard T4 treatment, a subject on which little is known internationally. In addition, some people would like to see more research into the safety of the desiccated thyroid hormone, which was used to treat hypothyroidism in previous decades but is now unlicensed. I would welcome an indication from the minister about the ways in which the Scottish Government is working with academia and pharmaceutical companies to conduct new research in this area, because it is about time that that happened.

I would welcome new research, particularly on patient experience. The improve thyroid treatment campaign’s standard letter says that a lot of the current research differs from the previous research, that combination therapy works and that T3 is necessary for those who do not do well on T4.

As the member passionately outlined, patients across Scotland do not feel that their voice is being heard, or that pathways to treatment are being properly considered. The debate is timely: we should make sure that we look to transform treatment for those many people across the country.

I again welcome the debate and the very welcome focus that Elaine Smith has brought to such an important health issue for many thousands of people across Scotland. I hope that the debate will help to increase awareness of hypothyroidism as we look to make more progress in the diagnosis and treatment of thyroid conditions.

17:23  

In referring to the member as Elaine C Smith, Mr Briggs is clearly getting ready for the Christmas panto season. I am sure that he will not mind if we refer to him as Rab C.

I, too, thank Elaine Smith for bringing this members’ business debate to the chamber and for her passionate speech. The debate is hugely important to and long-awaited by the many people who suffer with thyroid conditions, some of whom, as we have heard, have been following the progress of the petition on this issue through the Public Petitions Committee since 2012.

It is thought that almost 3 million people in the UK suffer from a thyroid problem and, as we have heard from Elaine Smith, about 95 per cent of them are women. Hypothyroidism is a crippling illness and many people are being failed by poor and inappropriate diagnosis and treatment protocols. Indeed, some people are left completely undiagnosed and untreated.

Currently, patients in the United Kingdom are waiting more than three times longer to receive treatment than their peers in the United States. In America, they are treated much earlier. We know that thyroid problems can progress slowly over time, which means that many people are left suffering a debilitating illness for many months, or even years, before they receive NHS treatment.

The problems do not stop once a patient is eventually diagnosed. As has been mentioned, the current guidance suggests that thyroxine—T4—should be used as the standard treatment for the majority of patients. That means that alternative treatments such as T3 and NDT—natural desiccated thyroid—are rarely offered, despite the fact that there are many patients who do extremely well on T3, and many more patients who require combination therapies. One of the concerns for patients is the threat of T3 being removed from the prescribed medicines list because of the extortionate costs that are associated with the drug.

Elaine Smith has already mentioned this, but it bears repeating, because it is so shocking and stark: in the UK, 100 tablets of T3 can cost up to £922, whereas, in Turkey, the same dose costs less than £1.25 and, in Greece, it costs £3.24. The NHS is being ripped off by Concordia, the company that, until earlier this year, was the only supplier of T3 in this country. Just yesterday, the Competition and Markets Authority found that Concordia had abused its dominant position to overcharge the NHS by hiking the price of T3 by nearly 6,000 per cent in the past 10 years. That is truly shocking.

We need to remember that there is a real human cost at the heart of this debate. I want to tell members about one of my constituents who is a hypothyroid sufferer. She is currently prescribed T4 and T3 as treatment for her condition. She has been prescribed the same treatment since 2005, despite the fact that tests show that she has a genetic abnormality that means that her body cannot convert T4 to T3 as well as it should. Her doctor refuses to increase her dose of T3 and has instead twice doubled her dose of T4. There is no clinical reason for that and it is making her worse. I have no doubt that that has been done because of the cost. I know that there are patients not just in greater Glasgow and Clyde but in Lanarkshire and Tayside, from whom the health board has withdrawn T3 completely. What have those women to do? Must they book flights to Turkey? That would probably be cheaper for them than having to access T3 through the NHS in Scotland.

I know that the pricing of medicines is reserved, but that should not prevent the Minister for Public Health and Sport or the Cabinet Secretary for Health and Sport from engaging in robust discussions with their UK counterparts. Women across the UK need T3 to give them any kind of quality of life. The drug is being withdrawn from patients only because of the cost.

I urge the minister to implement the recommendations of the improve thyroid treatment campaign group and ensure that T3 is not withdrawn from the prescribed medicines list, that doctors can continue to prescribe it in the clinical interests of their patients and that the treatment protocols include T3 as a standard option. Let us deliver better and more effective treatment for thyroid disease. If this was happening to men, there would be a riot, so I urge the minister to make sure that women are not penalised and that they receive the T3 that they need and deserve.

17:28  

I thank Elaine Smith for securing a debate on this important subject, and for her personal and moving opening speech. It is very brave for any member to come to the chamber to talk about personal experiences, and we could tell from her speech the extent to which Elaine’s life has been affected by this terrible condition.

As my fellow member of the Public Petitions Committee Angus MacDonald said, petition PE1463 has been running for five years, and at times we have been at a loss to know how to make headway with it. I do not profess to be a medical expert on the rights and wrongs of the drugs that are being used to treat hypothyroidism, but I know that it is a condition that has blighted the lives of women—because 95 per cent of those who are affected are women—for decades.

Like so many “women’s conditions”, such as menstrual problems and the menopause—which, of course, is not an illness but a normal part of women’s lives—thyroid problems have in the past been dismissed by clinicians, who have said things such as, “Och, it’s just your age,” or “It’s normal for a woman of your age.” I have been on the receiving end of that advice as, I am sure, have most women. Thankfully, in 2017 such attitudes are changing and the medical profession is displaying a very different attitude to problems that affect more than half the population. We are at last starting to talk about them.

The core of the problem when it comes to thyroid diagnosis and treatment is that it is to an extent stuck in the past, with no clear pathway for diagnosis and treatment. It is clear that one size does not fit all when it comes to treatment. As we have heard, the effects of unmedicated or poorly medicated hypothyroidism are horrific and they include fatigue, weight gain, depression, anxiety, stress, lack of concentration, dry cough, insomnia and much more. The bottom line is that the medical profession must listen to patient groups and individual patients. For example, when we are prescribed antibiotics and find that they are not working, we go back to the doctor to be prescribed a different type, usually with satisfactory results. If one drug does not work, then it is feasible to keep trying until one that does is found. If that drug is T3, as Elaine Smith has described, then that should be prescribed, regardless of cost.

We heard today of the latest shocking controversy surrounding drug companies and T3. This is a terribly serious issue. Patients should never be held to ransom by drug companies, and it is our duty, and that of the Scottish and UK Governments, to ensure that they are not. Buying drugs off the internet is surely the last resort and patients should never have to go there. They end up risking their safety and it costs them a fortune. The quality of life of those who can afford to buy the drug is transformed, but what about those who cannot afford it? Are they doomed to suffer? In Scotland, we pride ourselves, correctly, on the fact that prescriptions are free, thanks to the Scottish Government. No one should have to pay for good health.

I would like to thank the women, such as Elaine Smith and those in the gallery, who have spoken out about this to help other women. They have highlighted a serious issue, and I hope that the medical profession will finally sit up and take action before more women are forced to suffer.

17:31  

I, too, thank Elaine Smith for bringing the debate. It gives us an opportunity to gain clarity about treatments for thyroid patients and the challenges that they face, both of which are complicated issues. Many of those problems are highlighted in petition PE1463, which has been under consideration since 2012. I would like to acknowledge the work Sandra Whyte, Marian Dyer and Lorraine Cleaver have put into that petition.

In the UK, the condition affects 15 in every 1,000 women, or 1.5 per cent, and 1 in 1,000 men, or 0.1 per cent. In Scotland alone, the figure is approximately 100,000, so it is vital that we ensure that they receive the proper treatment. Treatment involves daily hormone replacement tablets for those who have an underactive thyroid. That should allow for a normal healthy life: unfortunately, lack of proper treatment can lead to complications.

We have the expertise and the tools to test for and treat thyroid illnesses, including the state-of-the-art research facility at Ninewells hospital in Dundee, and Axis Shield, which is a Dundee business that is a leader in products for early diagnosis of critical illnesses and hormonal imbalances. Those facilities are a major boon for Dundee, but they are an even bigger boon in helping to improve lives here and elsewhere in the world, so we must nurture and support them however possible.

Sadly, a number of patients in Scotland who suffer from thyroid disorders do not receive adequate treatment. The current T4-only treatment that is prescribed by the General Medical Council is inadequate for patients who are unable to convert T4 to T3, which is the active form of the hormone, as was outlined earlier in the debate. According to the Royal College of Physicians, between 5 per cent and 10 per cent of patients do not respond well to T4. The current T4-only approach is at odds with the work of Dr Anthony Toft, who is considered to be a global expert in endocrinology. Dr Toft stresses the importance of allowing GPs the freedom to treat patients according to their individual symptoms.

Dr Toft also makes it clear that GPs should examine their patients and not their blood tests, because the test often does not show what the problems are: it certainly does not show that patients are unable to convert T4. The test will say that they are absolutely fine. We also do not know what “absolutely fine” is, because everybody is different. Dr John Midgley suggests that a test other than the heel-prick thyroid test that is done on babies should be done when people are in their teens, so that we know what is normal for individuals.

I thank Elaine Smith for that clarification and enhancement of our knowledge. I feel a little bit like a student teacher who is being observed from the back of the classroom and corrected.

Unfortunately, the Scottish Government’s listening exercise, which was undertaken by Thyroid UK, revealed that many patients who do not respond well to T4 have difficulty agreeing alternative options with their GP.

Dr Toft has also made the point that using blood tests alone as a basis for recommending treatment does not always reveal the full extent of a patient’s needs. Basic thyroid testing needs to be improved to include options other than tests for thyroid stimulating hormone. Those TSH tests measure how much of the hormone is in a person’s blood, but doctors can make incorrect diagnoses when they use TSH levels as an indicator. It is good to say that twice. If we are to resolve that situation, alternative testing and treatment options must be available.

Fundamentally, the motion is about the need for personalised treatment. We must trust in the expertise and experience of GPs to prescribe treatments that are suitable for individual patients. Tying a GP’s hands by allowing only T4 treatment is entirely the wrong approach. It is therefore worrying that the motion notes that some health boards are believed to be

“issuing controversial guidelines that imply that GPs can no longer prescribe T3”.

When patients are denied access to treatments, they sometimes experiment with unregulated and unlicensed products. Lorraine Cleaver of thyroid petition Scotland has said that patients, including herself, are spending huge sums of money on their health. They pay for private tests, see specialists or buy medication that is not available on the NHS. That should be of great concern to us all.

We know that a simple change in treatment can mean the difference between a patient living with debilitating symptoms or leading a normal life, so our aim must be that every patient receives the treatment that they need. Let us hope that we can trust the Scottish Government and our doctors to treat patients as individuals, and to treat their conditions properly.

17:37  

I did not intend to speak in the debate, so I might not need the whole four minutes. Members will be glad to hear that.

Two things inspired me to contribute to the debate, one of which was the powerful contribution by my colleague Elaine Smith. As a fellow Coatbridger, I felt inclined to contribute, given what she said.

The second thing that inspired me to contribute was that, just before the debate started, I received an email about the debate from a family member, through an in-law connection. She emailed some of her story. Several years ago, she was diagnosed as requiring T3 and T4 treatment. She was on both for a while before the requirement for T3 treatment was removed. Although she felt a dip in her condition after the removal of T3, she was okay and off it. However, in June this year, her T4 medication was reduced from 300mg to 50mg, and she noted a dramatic dip her condition. Instead of getting more medication or going back on to T3, she was recently taken off medication altogether. She is currently off work unwell. She has a range of symptoms that I do not need to go into, because they have been described by other members. I know that because, as I said, I know her personally. She puts her condition down to her treatment.

There is an issue that we need to look at, and I have every confidence in the Minister for Public Health and Sport and the Scottish Government that they will do that. I am talking about an NHS board difficulty with a particular case. When the individual went for treatment, her GP was not even aware that she required treatment because she had had her thyroid removed. The priority that thyroid treatment is given in Scotland and the UK is an issue. Elaine Smith made that point.

I have noted down a couple of points. The 2 per cent figure has been mentioned a lot. I am no expert on thyroid disease, but I suspect that that relates to 2 per cent who are diagnosed. Are we talking about an even bigger issue? I imagine that the problem is a worldwide one.

When I did a quick Google search using my phone, as we can now do in the chamber, I noted that hypothyroidism is connected to the mineral iodine, and saw an article that said that teenage girls in particular are at risk of iodine deficiency, which can lead to the condition. Again, I do not know as much about the condition as other members who have spoken in the debate, but I note that they have said that more research into it is needed.

I agree with other members that the thyroid issue is gender based and that we need to knock it on the head. I do not think that any of us in the chamber can deny that if 95 per cent of men had the condition, there would be different treatment options.

We have shown with minimum unit pricing for alcohol that we can take on the big corporations: we can do that with the drug companies, as well. I hope that we can all work together to find a solution to the problem of hypothyroidism. I decided to speak in the debate at the last minute, but I should have declared at the start that I am the parliamentary liaison officer to the Cabinet Secretary for Health and Sport.

I call Aileen Campbell, the Minister for Public Health and Sport, to wind up the debate.

17:40  

Like others, I am happy and privileged to take part in the debate. I, too, commend Elaine Smith for bringing the debate to the chamber. I recognise the passion and commitment that she has shown in raising awareness of the issue and bringing her personal testimony to the Parliament to outline the struggles that she and many other women have undergone through having a thyroid condition. Many members described the debilitating consequences of the condition and the suffering that many women have to endure because of it. It is therefore incumbent on us all to do what we can to support those women and help them as best we can. Like others, I also welcome the women in the public gallery.

I know that what I have said might not be all that Elaine Smith wants to hear from me, but I hope that she recognises that there will always be a commitment from us to work with her as best we can to make the improvements that I think we all seek. I know that the petition on thyroid disorders is being considered by the Public Petitions Committee and I sincerely look forward to the report on the petition, which is imminent. The Scottish Government is supportive of those who continue to do vital work in raising awareness for thyroid patients. I am encouraged to see so many people showing their support for the petition, for the debate and for the work that will happen as a result of the Public Petitions Committee’s work.

Many members mentioned guidance for clinicians as a concern. The British Thyroid Association’s position statement of 25 June 2015 set out recommendations on the management of primary hypothyroidism, based on a literature review of the published positions of the European Thyroid Association and the American Thyroid Association. The British Thyroid Association is the leading UK body on thyroid disorders and its guidance is endorsed by a number of expert bodies, including the Royal College of Physicians.

In 2016, NICE published a clinical knowledge summary on hypothyroidism, which provides a concise, accessible summary of current evidence for primary care professionals and focuses on the most common and significant presentations in primary care. NICE also intends to develop a guideline on thyroid disease, with an expected publication date of 20 November 2019. There will be wide consultation with stakeholders and, importantly, patients and service users. I encourage anyone with an interest in thyroid conditions to engage in the guideline development process. I am happy to meet Elaine Smith to consider ways in which we can enable women to take part in that process.

Lorraine Cleaver is involved in that process. Will the minister commit to having a meeting with us to talk about some of the issues after the debate?

Absolutely. We want to reach out to ensure that as many as possible of the women who are suffering in the way that members have described and who feel that they have been disempowered through their diagnosis get an opportunity to feed into the process of guideline development. If Elaine Smith wants to accompany Lorraine Cleaver to a meeting, we will set that up.

The chief medical officer’s report “Realising Realistic Medicine” describes how we ensure that people are firmly at the centre of the decisions about their health and care. The report sets out how we can help people to make decisions about their care, focusing care on what people need and asking them, “What matters to you?” It is about giving people the treatment that is right for them, at the right time, with the right support. Some of the testimony that we heard in tonight’s debate is certainly at odds with that approach, which we want to embed across all practice.

The minister has heard that people have been told that they cannot access the medicine that they require—T3—and that there is a suggestion that that is because of the cost. Is the minister willing to write to health boards to confirm that they ought not to exclude T3 as an option while the process is going on?

I was going to come on to that, in response to points that Jackie Baillie made. She described concern that T3 will be removed from the prescribed medicines list. NHS England might be considering that, but there is no question of such an approach being taken in Scotland.

Will the minister take an intervention?

May I make a bit of progress? I have taken a couple of interventions and I want to move on to issues to do with T3 and T4, if that is okay. If I have time, I will come back to Jackie Baillie.

The BTA position statement, which I mentioned, takes into account the wide-ranging international evidence base and concludes that T4 provides

“a safe, rational ... approach to the correction of hypothyroidism, and for the vast majority of patients, treatment results in improved physical and psychological well-being.”

In August 2017, the effective prescribing programme looked at medication for a wide range of conditions and considered best practice in the management of hypothyroidism. The EPP board concluded that there is currently insufficient clinical evidence of effectiveness to support the use of T3, either alone or in combination, as the first-line option treatment of hypothyroidism.

NHS boards were therefore asked to review the position of T3 in their formularies, to ensure that T3 treatment is initiated only on the advice of an endocrinologist, given the potential for adverse side effects, and to consider switching use of T3 to T4 at medication review. Such a review absolutely must be carried out in a person-centred manner, with full engagement and shared decision making with the individual. Face-to-face consultations are essential before any change is made, and there should be an assurance that the change is for a trial period and that the individual can return to the original treatment if the mutually agreed outcomes are not achieved.

It is recognised that a small proportion of patients do not tolerate T4. T3 use remains available as an option where the appropriate clinician is satisfied that that is the safest and most clinically effective treatment option for the individual.

I thank the minister for taking another intervention—she has taken a lot.

People who are on T3 on the NHS are on it for medical reasons, and taking them off it, even for a short time, will have a really detrimental effect on their health. Also, the medical profession does not seem to be aware that patients who are on T4 only are being put at risk—by the medical establishment—of stroke, osteoporosis in later life, heart attack and so on. That is hugely dangerous.

I was pleased that the minister said that there is “no question” of T3 being taken off the prescribed medication list. We need to tell health boards that, and women need to know that if they are on T3 or their endocrinologist is putting them on T3, they are to stay on it and are not to be taken off it.

I recognise the passion with which Elaine Smith makes her points. A clinician’s primary duty is to do no harm, which is why we expect there to be, through the realistic medicine approach, adequate, proper and meaningful engagement, so that the circumstances that Elaine Smith outlined can be avoided and we ensure that there is a clinically effective treatment option for individuals who cannot tolerate T4.

Members mentioned NDT, which was used until the 1980s. There is a lack of robust clinical evidence that NDT is of any clinical benefit to patients beyond that delivered by the recommended medication T4. I recognise the serious concerns that have been raised in the debate. The treatment is currently not licensed for use in the UK, and I urge anyone who is using the treatment or who is unhappy with their prescribed treatment to talk to the healthcare practitioner who is responsible for their care.

Members talked about research. As I said, I recognise that a minority of people cannot tolerate T4. Further research is required in that regard. In Scotland, the Scottish Government’s chief scientist office is responsible for funding high-quality research projects. The CSO’s research funding committees consider applications from all areas of medicine. The only stipulations are that the research is led by a Scotland-based clinician or scientist and that it has the potential to improve the health and wellbeing of the people of Scotland. The CSO does not initiate research but would welcome applications for research projects that are aimed at the management of hyperthyroidism, which may include clinical trials for both T3 monotherapy and T3/T4 combination therapy. We look to academic institutions to seek funding to lead well-designed research that addresses the evidence gaps. The endocrinological community in Scotland would be happy to consider and assist with those proposals.

All decision making about an individual’s health and care should focus on the individual and be discussed and agreed with them and their clinician. There are clearly areas that can be improved, especially when we consider the human cost that is involved, which has been articulated so well this evening. There is much that we need to do to ensure that people’s voices are heard so that they feel meaningfully engaged.

I again thank Elaine Smith for bringing the debate to the Parliament, the members who have contributed and the people in the public gallery. We will continue to work together, across the Government and health and social care services, to make the differences that we all want to see. I reiterate that I see opportunity in the NICE work and I confirm that we will continue to work with Elaine Smith and others who want to be involved to ensure that we get meaningful representations in that process.

I look forward to the Public Petitions Committee’s work, because I think that it will provide a further opportunity to reflect on the wider issue that people have expressed today: that somehow the issue has not been taken forward adequately because it more commonly affects women across the country. I do not want people to feel that, as the issue is being taken incredibly seriously, However, it is clear that there are areas where we could and must do more to ensure that people do not feel that they have been ignored but instead feel engaged and that they can make progress in their health and contribute. There are opportunities to make improvements and I commit to working with Elaine Smith and others on those opportunities.

Meeting closed at 17:52.