Bond of Caution (PE1412)
Agenda item 3 is consideration of current petitions. I am conscious of the time, but I will take the petitions in order.
I note that Elaine Smith MSP has joined us. I am certainly keen to reach the petition that she wants to speak to, but I point out that we also need to consider our annual report. We will just have to see how the time goes.
PE1412 by Bill McDowell is on bonds of caution. Members have a note by the clerk. We have been dealing with this very good petition for some time now. There is a suggestion that we defer consideration of it until after the Scottish Government announces its next legislative programme, given that the Government has made it clear that it does not intend to prioritise this work and that, in its view, there is no clear agreement on the way forward on this and a number of related issues. For these reasons, it intends to consult when other priorities allow.
That seems to be a strong steer that we should defer the petition until the Government’s legislative programme is announced but, again, I will take the committee’s advice and guidance. Do members agree with the suggestion that has been made?
Members indicated agreement.
Thyroid and Adrenal Testing and Treatment (PE1463)
PE1463, by Lorraine Cleaver, is on effective thyroid and adrenal testing, diagnosis and treatment. Members will have received a note by the clerk and various submissions. I remind members that we had a very interesting round-table session on the petition.
I welcome to the meeting Elaine Smith MSP, who has a long-standing interest in the petition. We are very tight for time, Ms Smith, which is something that you will be familiar with from your other role in the Parliament. Could you please make brief comments on the petition?
I thank the committee for the time that it has taken so far to read the evidence and understand the scale of the issue. I also thank you for reading the personal stories, which you will agree are sad and tragic, given that medical help is available in countries other than the UK—for example, Armour Thyroid is prescribed in Belgium.
It is unfortunate that the petitioner, Lorraine Cleaver, cannot be here today. She has submitted a note that highlights her dependency on desiccated thyroid hormone, which—as members will know—many others rely on. It is worrying that, although people were previously able to buy desiccated thyroid hormone from the USA, the Food and Drug Administration now seems to be demanding prescriptions to ship it into the UK. The question needs to be asked why there has been that sudden change. Lorraine Cleaver wonders whether that has happened at the instigation of the UK. There are questions to be answered on that.
Desiccated thyroid hormone was the normal treatment prior to the patenting of T4, and it literally brings people back to life. General practitioners can prescribe desiccated thyroid hormone as long as they take personal responsibility for the treatment. It would be better if people did not have to buy it from the US, but could instead have it prescribed by their GPs if they meet the guidelines, and if they had tried the licensed product first. A lot of people feel that they are being denied health and that their GPs might be breaking the hippocratic oath by denying them treatment that would—and has been shown to—help them, meaning that they have to purchase it themselves from abroad.
There are no financial benefits from desiccated thyroid hormone for the pharmaceutical companies. That may be why, in the Government’s letter to you, when it talks about T3, it says:
“it may be that companies do not see it in their economic interests to enter into such a small market.”
That is a possible reason why there is only one pharmaceutical company making T3. As we know, there were problems because of that when there was no supply of T3. There was another shortage in March—I do not know whether you know about that, convener—which was resolved, but it highlights the fact that there is only one supplier. Some of the evidence that the committee has received for this meeting also shows close ties between pharmaceutical companies and the medical profession.
I understand from Lorraine Cleaver’s submission that she met David Cline and is pleased to have been given the opportunity to contribute to the listening exercise. It is good that evidence is being gathered on a subject that affects so many people in Scotland. However, I am not entirely clear—I do not know whether the committee is—how much of that work will be focused specifically on thyroid problems, which is a question that the committee asked before. I would be happy to contribute to that exercise in any way whatever, and I hope that the fact that it is taking place will be publicised.
I respectfully ask the committee to consider keeping the petition open at least until the listening exercise is finished. I also ask that the committee give some consideration to holding its own inquiry with a focus on gathering the available clinical evidence and taking evidence from patients including those who are parked on T4 to find out whether they are well on T4 and whether they are suffering other symptoms. Finally, I ask the committee to consider why GPs will not prescribe desiccated thyroid hormone when it was previously the safe way to treat underactive thyroid conditions, and brought patients back to life and kept them economically active. There are a lot of things that an inquiry could look into, which would benefit many patients and perhaps also the NHS, in the long run.
I thank Elaine Smith for coming along and giving that presentation. She has suggested that we keep the petition open and consider it again once the Scottish Government’s patient experience project is complete. Do members have any additional points to make?
As Elaine Smith identified, we do not know how many thyroid patients will be involved in the consultation that the Government is carrying out. We should write to the Scottish Government to find out whether it will do more detailed work in speaking to thyroid patients. There is no point in our waiting on the Scottish Government’s response only to find out that thyroid patients were not fully considered in the evidence that was gathered and the report that was produced.
I urge the committee to write to the Scottish Government to request that special consideration be made to targeting thyroid patients to ensure that they are getting the appropriate treatment.
This is one of the most thorough and comprehensive petitions that has been submitted since I joined the committee. I was going to make the same point as John Wilson. I do not know what the terms or remit of the Government’s project are, but I suggest that they do not inhibit people being encouraged to write to the Government to detail their experiences.
12:15
I thank Elaine Smith for coming along. As others have said, we must await the completion of the listening exercise. However, Elaine Smith has raised a number of issues on which answers are outstanding. We have had this petition for a long, long time. Would it be possible for us to conduct an inquiry to answer all the questions that have been raised? Loads of different wee issues are hanging around and certain work is not being done. We need to get answers for those affected, but I am not sure that we will get those solely from the listening exercise even if, as John Wilson said, we ensure that those who suffer from thyroid conditions are included in that exercise.
I thank Anne McTaggart for her comments. It might be useful to ask the clerk to look in detail at the points that you have raised because what you are asking for would mean considerable work for the committee. However, all the members agree that the petition is excellent and that we want to go as far as we can with it. Before doing so, I want guidance on the work implications for the staff before we take a final decision.
I want to hear from the committee clerks about whether it would be possible to hold an inquiry. I also want to acknowledge that the petitioners must be feeling extremely frustrated at the length of time that the matter is taking. We understand that frustration.
Do members agree to keep open the petition? Mr Wilson, did you want to say something?
I am sorry, convener, but I have one more question that I want to ask the Scottish Government.
David Cline’s response makes reference to the batches of T3 and their availability. He says:
“Decisions over whether or not to manufacture particular medicines are for Pharmaceutical Companies.”
The issue for many of the thyroid patients is the supply of T3, not who manufacturers it or whether it is manufactured in the UK. They want to ensure that, if a pharmaceutical company is producing T3, access is given to the drug, irrespective of the country where it is produced.
The issue is therefore about guaranteeing the supply of T3. We should seek clarification from the Scottish Government on whether, if T3 were not available in the UK from UK pharmaceutical companies, it would seek the import of T3 from other countries on the proviso that it met the strict guidance on the materials used and the effectiveness of that T3.
Are we quite clear on how we are to proceed? We will continue the petition, await the results of the Scottish Government’s project and get a note from the clerk on whether a mini inquiry would be possible, which we will consider at a future meeting. Do members agree to that approach?
Members indicated agreement.
I thank Elaine Smith and the petitioners for coming along. This is a very good petition.
I am conscious of the time—quite a lot of pressure has been placed on our timetable—and we still have a couple of petitions to consider and at least one of the petitioners is in the public gallery. Unless there is strong feeling not to do this, I suggest that we defer PE1488 by Pete Gregson to the next meeting and that we deal with PE1508 out of sequence. Do members agree?
Members indicated agreement.
Commonwealth Games Sponsorship (PE1508)
PE1508 by Sean Clerkin is on Atos as a sponsor for the 2014 Commonwealth games. Mr Clerkin was at one of our previous meetings and gave evidence. Members have a note by the clerk and submissions on the petition.
We have written to a series of organisations about the issues that the petitioner raised. We can take a number of next steps on the petition, but there is a recommendation that we close it on the basis that the work of Atos IT Services is integral to the games and a change of sponsor could undermine the smooth running of Glasgow 2014. However, in doing so, we could write to the organising committee drawing its attention to the evidence that we have gathered on the issue so that the organisers are left in no doubt about the strong comments that the petitioner made, which were very clear, and the evidence that we have gathered.
Do committee members agree to that course of action?
Members indicated agreement.
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