Public Petitions Committee

Meeting date: Tuesday, December 9, 2014

Official Report 560KB pdf

---

Current Petitions

---

Thyroid and Adrenal Testing and Treatment (PE1463)

Item 5 is consideration of three current petitions. The first is PE1463, by Lorraine Cleaver, on effective thyroid and adrenal testing, diagnosis and treatment. Members have a note by the clerk and a submission from the petitioner, whom I welcome to the meeting.

I also welcome Elaine Smith, who has a long-standing interest in the petition. I met Elaine Smith, Lorraine Cleaver and two members of our clerking team last week to look at the issues in more detail. Elaine, would you like to give us a brief summary of where we are with the petition?

I thank the committee for the amount of work that it has done so far, and for its interest. Members have been thorough and interested, and they have understood the issues, which is more than can be said for some people in the medical profession. You have done a pile of work, but unfortunately we have not as yet had better outcomes for patients or any money saved for the NHS. That is where I am starting from.

We have Lorraine Cleaver’s letter, which will be useful in guiding the committee in what it should request from the Scottish intercollegiate guidelines network. The SIGN guidelines might be helpful, but they could take up to two or three years to emerge, and there are other areas that still need to be addressed. I propose that the committee keeps taking an interest, not only because SIGN might have to liaise with you, given that you are asking it to carry out the work, but because you have not yet had any feedback from the Scottish Government’s work on patient experiences.

If members do not mind bearing with me for a minute or two, I will just go over why you should keep the petition open, as I suspect that you might be considering closing it. First, there are outstanding issues. We know that more research is required on the condition and on what other options there are for patients. The lack of research in areas such as triiodothyronine—T3—prevents medical professionals from prescribing medication that could improve the lives of their patients. We need a programme of trials for T3 and for desiccated thyroid hormone. Patient experiences should be included in those trials, so that we listen to the patients and do not just look at test results, which is really important.

As the committee knows, there is still only a sole supplier of T3 in the UK, which means that there is a monopoly. There are current issues, again, with the supply of T3, according to the chemist who I spoke to last week.

We also know about misdiagnosis from the committee’s work. You will know that misdiagnosis has an impact on the patient and on the NHS as a whole. Patients are often misdiagnosed with conditions such as depression, myalgic encephalitis and Addison’s disease—the list goes on. Members can see that from the stories that you have received from 50 patients.

As Lorraine Cleaver’s letter to the committee notes, the Royal College of Physicians says in its policy statement:

“We recommend that those patients whose thyroid blood tests are within the reference ranges but who have continuing symptoms, whether on Levothyroxine or not, should be further investigated for non-thyroid cause of the symptoms.”

That is increasingly worrying, because, as members know, that is what happened to me. Over several years, the NHS spent thousands of pounds putting me on heart monitors and giving me brain scans, and on hospital admissions and prescriptions for this, that and the other, including for a low immune system. The cost to the public purse of that approach is huge and leaves people on medication that they do not need and that does not help them.

There is the specific issue of ME, where people are economically inactive and are living a half life, or no life at all. That is something in which the committee could take an interest.

There are 87 medicines for type 2 diabetes, 47 medicines for depression, 45 medicines for acne, 16 medicines for athlete’s foot and just one for underactive thyroid, which is an immense condition, as the committee will know from all its work.

We know that people are resorting to sourcing T3 and pig thyroid from abroad. That is allowed under the Medicines Act 1968, but there is no regulation of what people are taking and no knowing what is in the medicines. People should not have to go to such lengths, but they are doing it, because they feel as if they are rising from the dead.

Many doctors are concerned about the guidance from the Royal College of Physicians, which really only helps people who convert normally. People who do not convert are a real problem, as the committee is aware. It is fair to say that endocrinologists are scared to push the boat out and try other things. They are worried about the stricture to do no harm, but they are actually doing harm by not trying other things that might bring people back to life.

The correct testing is out there, but it is not available on the NHS a lot of the time. People are paying to get the correct tests and to get on the right medicines, if they can afford it. Others who cannot afford to pay are left to languish. There is also the issue of telling patients that they are borderline, which is a scandal. People could be trying thyroxine—T4—in those situations.

The Healthcare Improvement Scotland scoping report that the committee received recently is telling. It found that the use of thyroid function tests is based on generally poor-quality non-peer-reviewed evidence. If a doctor carries out a test, it is usually only for thyroid stimulating hormone—TSH—and occasionally for T4, but the evidence for the adequacy of those tests is weak. At a Thyroid UK conference in October, Dr John Midgley said:

“There have been long, sad and unsatisfactory developments in thyroid function testing, including up to the present day”.

He says a lot more than that and I am happy to share his report with the committee.

It has been admitted that 15 per cent of diagnosed sufferers do not do well, but we think that the figure is likely to be higher than that. It could be considered medical negligence not to treat those people properly. Even those sufferers who supposedly do well on T4 are still obese—we have a huge obesity problem. They also have thinning hair, dry skin and are tired.

It is estimated that only 20 per cent of people who are diagnosed are referred to endocrinologists. More people need to be referred. I have heard of several women recently who have had strokes that could have been caused by their underactive thyroid. They are not doing well and are suffering from ME-type symptoms, but they have not been referred to an endocrinologist by their GP. That is just not right for people with a complex condition such as an underactive thyroid.

Thank you for bearing with me, convener, but there are many issues to cover, including research, testing, medication and the supply of medication. I do not think that SIGN guidelines would address all those points, although they would help. An inquiry by the Public Petitions Committee would be helpful and welcome. There are so many areas to cover. The committee is still waiting for the patient experience feedback from the Scottish Government. There is a new public health minister, so it might be helpful to pass all the information to her and ask her to address the committee on the issue. The committee has done such a power of work and now is not the time to stop.

Thousands of women are desperate for help. It is specifically a women’s issue, so another line that the committee could take is to ask the Equal Opportunities Committee to look into the matter from the perspective of discrimination against women and report back. The bottom line is, if the committee stops now, it will have wasted the time that it spent doing the work that it has already done. That work has been fantastic, but we need to change the outcomes for women and save the NHS thousands of pounds. The committee has the ability to do further work to enable that to happen.

Thank you. That was a comprehensive submission. For my own part, I do not intend to close the petition, and I have some suggestions about how the committee might go forward. I should also say that Elaine Smith has done excellent work on this matter.

I suggest that we write formally to SIGN and forward the evidence that we have received, including the patient testimonies and the petitioner’s suggestion of specific areas for investigation. SIGN should be invited to work with the petitioner to initiate the process of developing guidelines for the diagnosis and treatment of thyroid conditions and formulating the necessary questions.

We certainly want to keep the petition open, see what we get back from SIGN and, obviously, consider any other longer-term aspects that we can deal with. I certainly would not want to close the petition at this stage. What are members’ views on that suggestion?

I am happy to agree to the recommendation.

I, too, am happy to agree to it. The issue for me is that we should, as Elaine Smith has said, write to the Scottish Government, particularly the new minister, to keep it updated and in the loop on how we are dealing with the matter. It would be useful if the Scottish Government brought some pressure to bear to ensure that SIGN takes up the committee’s recommendations.

I thank Elaine Smith in particular for the power of work that she has done on this issue.

I agree with the convener’s suggestion, but I wonder whether we can pick up on a few outstanding matters highlighted by Elaine Smith that would not be covered by SIGN. One of my major concerns is about the supplier of T3, which Elaine Smith mentioned. We have been down this road before, and I never thought for one second that we would back here again so soon. Can we seek to resolve the issue and ask the health minister why what is happening is happening?

We could put that in our letter informing the minister of the SIGN guidelines.

In addition to the supply of T3, what has struck me throughout this whole saga—for want of a better term—is the failure to prescribe natural desiccated thyroid hormone. I do not see why that is not happening. I hope that we can get answers to that question and that it will be prescribed in the future, as it is a no-brainer to me. It just looks like a solution to the problem.

Thank you for that. We will add that to the letter.

Kenny MacAskill, I appreciate that you are coming cold to the matter.

What has been suggested seems a sensible way forward.

Although endocrinologists know that desiccated thyroid hormone might help their patients, they are keen not to do something that nobody else is doing; they are a bit worried about that. The following quote, which is from a report by a medical investigative journalist, was made by a lecturer in geriatric care, but the same principle applies. That lecturer told a conference:

“We like to stick with the standard of care because when the”—

I will not use that word—

“hits the fan we all want to be able to say we were just doing what everyone else is doing—even if what everyone else is doing isn’t very good.”

That is a problem.

I do not want to extend the debate, but has the National Institute for Health and Care Excellence been asked for its view on prescribing desiccated thyroid hormone? We might have raised that issue at previous meetings.

I am not sure about that—I will check.

I think that the problem is that although desiccated thyroid hormone can be prescribed—members will know that, because the health scoping report says that it can be prescribed as “a specials product”—our endocrinologists are not prepared to do so, because they are concerned that they will be put in front of the General Medical Council, as Dr Skinner was for years. He was never found guilty of anything, because he helped his patients by prescribing the product. Many general practitioners who prescribe it simply say nothing about it, because they are scared. The overriding and overarching guideline of “Do no harm” makes them worried about trying such things in case they do harm. However, by not trying them, they could be doing people harm—in fact, I would say that they are doing harm.

Perhaps you can explore that matter and get back to us on it.

Again, I thank Elaine Smith for coming to the meeting. As she has heard, we are very keen on the petition, and we will pursue it in the ways that I have identified and the additional ways that my colleagues around the table have suggested. I also thank Lorraine Cleaver, who is in the gallery, for coming along.

---

Tinkers’ Heart of Argyll (PE1523)

The next petition is PE1523, by Jess Smith, on giving the Tinkers’ Heart of Argyll back to Travelling people. Members will have a note by the clerk and the submissions, including the recent letter that we received from Ms Ramsay.

I welcome to the meeting Mike Russell, the constituency MSP, who has taken great interest in the petition, and I ask him to make a brief opening statement to the committee.

12:00  

Convener, I am sorry that Jess Smith is not here. She is otherwise engaged but she is grateful for the interest that the committee has shown and the work that has been done. However, I should also say that she is disappointed with the progress that has been made to date, as am I.

I will quote from a letter that I received last week. I am not at liberty to say from whom I received it, but it was somebody in the heritage sector. The letter, which really gets to the nub of the problem, states:

“Although no one knows the origins of Scottish Travellers for sure, they have been part of Scotland’s history and story for hundreds of years, playing an important role as armourers to the clans, as bringers of news and useful items to rural communities across Scotland and today as the keepers of oral traditions that were once all of ours, but which have become largely lost in our world so dominated by technology. Their story is an important one within the story of Scotland. As Historic Scotland aims to preserve historic sites that help to tell the story of the people who have lived in Scotland over the past 10,000 years, by leaving Travellers out of this history the story of Scotland cannot be complete and an opportunity to recognise the contribution of this community is missed. It also adds to the cycle of discrimination in which Travellers are not visible within the telling of our history and this vacuum allows negative attitudes to this community to flourish unchecked.”

Regrettably, that is what lies at the heart of Historic Scotland’s response. It has not grasped the importance of the issue. If its procedures are such that it cannot properly recognise the only site associated with the Travelling people across Scotland, those procedures need to change.

I am also disappointed because I am unaware of any substantive response from the landowner. Am I correct in assuming that?

There has been nothing at all.

That is extremely disappointing. As a public body, Historic Scotland is bound to respond, even if it does not do so adequately. For the landowner to ignore this Parliament, just as she has ignored the petitioners, is disgraceful. In the circumstances, there is much unfinished business with the petition, which has received more than 1,000 signatures and generated an enormous amount of public interest. I shall certainly continue to back Jess Smith and those who work with her to ensure that that tiny spot of ground is given proper recognition and that we can include the Travelling people of Scotland as we tell our story and move forward as a nation.

Thank you for that submission. What would be useful in taking the petition on to the next stage?

Three things would be helpful. The first thing is to remind the landowner that, whatever her view, she is not above the democratically elected representatives of the Scottish people. The second thing is to return to Historic Scotland and the minister to question their position on the intangible cultural heritage, to question the procedures that they are following for scheduling monuments, and to see from them a solution to the issue. There might be solutions other than scheduling, but we need a solution that achieves the end that is sought, which is the site’s proper preservation. At the moment, the site is not properly preserved; when I drove past it this morning, in the grey, wet light of an Argyll dawn, I saw that it had a metal container around it and nothing else. It needs proper signage and proper parking, and it needs to have attention drawn to it.

The third thing is something that I know Jess Smith would welcome, although it might not be possible for the whole committee. If the convener, as a Highlands and Islands MSP, were to visit the Heart, I am sure that Jess Smith would be there to welcome him to it, and such a visit would also draw attention to the fact that the Parliament is determined to do something to recognise the heritage of the Travelling people of Scotland.

The clerk has advised me that the landowner rang the clerks to speak to them. She knows that she has been invited to write to the committee, but she has not done so yet, and I hope that we will get a written submission.

I will suspend my criticism until we see the letter, but if the letter went to her, as it did, timeously at the end of September or beginning of October, she must be gey busy if she cannot reply in that time.

I welcome Mr Russell’s contribution to the discussion. The Travelling people and tinkers have made an important contribution to the history of Scotland, and the Tinkers’ Heart plays an important role in that heritage.

For me, the issue goes back to the issue of land ownership. We received a useful submission from Councillor Robert Macintyre. In the third paragraph of his submission, he says:

“I can confirm that in a minute of a meeting of Argyll County Council held in April 1969 there is record of a decision made that an area of ground at this location shall cease to be a highway within the meaning and for the purpose of Section 42 of the Roads and Bridges (Scotland) Act 1878.”

Would it be possible to get clarification of the question of whether that means that the land reverted back to the private landowner? If the site was part of a public highway, why the land reverted back to a private landowner is beyond me. That raises issues about the suggestion that, as Jess Smith indicated previously, the site of the Heart and the access route to the Heart were public-access land. There is an issue about land ownership and whether the landowner who now claims ownership of the land has title to the land.

I think that, if possible, every committee member should act on Michael Russell’s suggestion that they visit the site. It is not only this site that is under threat; the issue affects a number of sites across Scotland.

The submission from Historic Scotland of 3 November says:

“under the terms of the Ancient Monuments and Archaeological Areas Act 1979, scheduling does not provide any specific onus on an owner to care for or provide interpretation for a monument”.

I hope that the committee will write to Historic Scotland to ask whether there needs to be a change to the act to ensure that the appropriate protection of these sites is put in place, particularly with regard to monuments that are on private land. As Jess Smith says, the landowner can do whatever she wants with the land, and has been doing so, up until recently, when the fence was erected around the site. We need to ensure that monuments such as this one are protected and we need to state that we see the value in protecting them.

We should write to Historic Scotland to ask whether it intends to introduce legislation that would amend the 1979 act to ensure that we get appropriate protection for sites that are on private land.

I believe that Mr Wilson’s suggestions are competent. With regard to the first one, about roads, we should write to Argyll and Bute Council and ask for a comment on that from its director of legal services.

Do members have views?

I am happy to go with the recommendations.

I thank Mr Russell for his presentation, and I would also like to take up the offer to see the Tinkers’ Heart. However, I am concerned about Historic Scotland’s reply. It worries me that, although this is Scotland’s only site of this nature, the issue does not seem to be being taken seriously. Can we meet representatives of Historic Scotland to discuss the matter further?

We can certainly invite representatives from Historic Scotland to appear before us in the new year, if the committee is willing. I am sure that we can invite Mr Russell to come along on that day, too. That will make for an interesting meeting.

If we are going to invite Historic Scotland, could we invite the Cabinet Secretary for Culture, Europe and External Affairs to the same meeting, so that we get the Government and Historic Scotland speaking from the same page?

That is a good idea.

I am happy to go with the recommendations that have been made so far.

I think that there are two issues. The first is land ownership. Land ownership brings rights, but it also brings responsibilities. It is therefore disappointing that the landowner has not taken the opportunity to write to us. We should perhaps pursue the roads issue with Argyll and Bute Council, but it seems to me that someone owns the land, and that those who have a vested interest in the site, whether through their statutory responsibilities or their ownership of it, should do that bit more in relation to the site.

Equally, on the historical aspect, I think that it is appropriate to push Historic Scotland on the issue. The community that we are dealing with might be marginal, but it is part of Scotland’s historical tapestry, as Michael Russell said.

As you have heard, Mr Russell, we are very enthusiastic about the petition. We are going to invite Historic Scotland and the cabinet secretary to appear before us, and we will write to Argyll and Bute Council to check out the legalities involved. We will also send a gentle reminder to the owner to give us a written submission. In addition, we will write to Historic Scotland to try to get the heritage criteria correct, because they currently do not seem fit for purpose. Are members happy with that comprehensive approach?

Members indicated agreement.

Those will be excellent developments. I should have mentioned my gratitude to Argyll and Bute Council for responding positively. Historic Scotland is of course going into a new incarnation and, with new management, it might have a more comprehensive view of what Scotland’s heritage is, which would be great.

I thank Mike Russell for coming along today.

---

Sex and Relationships Education (PE1526)

The final current petition is PE1526 by Jack Fletcher, on behalf of Sexpression:UK, on making sex and relationships education in Scotland statutory for all schools. Members have a note by the clerk, the Scottish Parliament information centre briefing on sex and relationships education in other European Union countries, and the written submissions.

Members might have other views, but it seems to me that we have two main routes forward on the petition: to refer it to the Education and Culture Committee for it to consider whether the provision of sex and relationships education in schools should be mandatory, or to close the petition under rule 15.7 on the basis that the Scottish Government will shortly issue revised SRE guidance that the petitioners support; that the Scottish Government has given a commitment to raise the profile of SRE when it publishes its revised guidance; that Education Scotland will monitor and assess the implementation of the new guidance; and that those who gave views to the committee were supportive of SRE continuing to be non-mandatory.

Which of the two options do committee members think we should pursue? Are there other options?

I am happy to close the petition as the petitioner is supportive of the Scottish Government’s actions on it.

Are members agreeable to taking that course of action?

Yes. We cannot decide the timetable for Scottish schools, which have been under pressure to include areas such as business and financial advice. The Government is showing willing on the petition, so we should leave SRE to those in charge of it.

I thank members for their views. Do we agree to close the petition under rule 15.7 for the reasons that I gave?

Members indicated agreement.