Public Petitions Committee

Meeting date: Thursday, February 7, 2019

Official Report 706KB pdf

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Continued Petitions

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Referendum on Scottish Independence (PE1700)

Agenda item 3 is consideration of continued petitions. PE1700 is on the progression of the process for a section 30 order to hold a Scottish referendum on independence from the United Kingdom. The petition was lodged by Martin James Keatings on behalf of Forward as One.

We considered the petition in September last year and agreed to write to the Scottish Government for clarity on its position on a possible referendum. The Scottish Government’s response states:

“The First Minister has made clear that she will provide an update on the issue of an independence referendum when there is greater clarity about the terms of Brexit.”

As recently as a day or so ago, in a speech in the USA, the First Minister confirmed:

“I as First Minister have said I will outline my thoughts on the timing of another independence referendum in the next few weeks”.

In recent days, the committee has received around half a dozen emails that urge it to support the petition.

As we have said in previous meetings, the Public Petitions Committee is a cross-party committee, so it is not expected that we will agree on the merits or otherwise of a referendum on independence.

The briefing note includes a comment on engagement with the public, as the petitioner seemed concerned that the public’s views on the issue have not been adequately heard. Do members have any comments on that aspect?

Do members feel that there is anything further to be gained in keeping the petition open?

Clearly, we do not want to get into the merits or not of a referendum. However, I cannot avoid straying into political comment here. As a member of the Scottish National Party, I fully understand the petitioner’s keenness to see a section 30 order requested.

However, the petitioner will be fully aware of the stance of the First Minister and the Scottish Government, which the convener alluded to in her remarks. The petitioner will have seen the most recent utterances from the First Minister that she will be making clear her position and that of the Scottish Government in a matter of weeks.

As the Brexit saga continues and develops into what I would class as a nightmare, it is clear to me that—first and foremost—we need to see what transpires over the next few weeks, before we hear what the Scottish Government’s final position is. The Scottish Government’s position could not be any clearer at the moment, given the turmoil that the country is experiencing.

I will not stray into party politics here. We must respect everybody’s opinion, whatever that opinion happens to be.

My issue with the petition is that it leaves it open for another petition to come in to speak against it. We would then be taking the independence debate among the wider population into our committee debates. We understand that it is the Scottish Government’s responsibility to bring the issue forward, if that is its wish, and that the debate would happen then.

I completely respect the petitioner’s views, but I am not sure how petitioning this Parliament forces or encourages the Scottish Government to do something that it is already considering. Let us face it, it is already the SNP’s raison d’être, so I am not quite sure where the petition lies within that whole debate.

For me, the tests on the effectiveness of the Public Petitions Committee are whether it is highlighting an issue that people are not aware of; whether it is providing the opportunity to have a debate that would not otherwise happen; or whether there is a lack of clarity on the part of those who are in authority on their position on an issue. On all of those grounds, in my view, we would not gain a lot from continuing this petition.

Clearly, the issue will be debated. People in this room will have different positions in that debate, even though we often very much agree on the impact of Brexit and so on.

The issue will be debated, whether I want it to be debated or not—it is very much part of political debate across the country. The Scottish Government has made its position very clear, which is that it will not pursue the issue until a later stage. Nevertheless, the debate will clearly continue and Scotland continues to wrestle with it. However, I do not believe that the Public Petitions Committee is where we should wrestle with it, because the debate will continue anyway. It is not that the committee is putting a block on that debate or preventing it from happening; I am conscious that it still runs like a current through Scottish politics, whether some of us like that or not. Certainly, the Scottish Government has made clear its position.

I am interested in other people’s views, but my own view is that we should close the petition. That is because I am absolutely certain that it would not be the end of the debate, and that the Public Petitions Committee is not the place where the differences that we have on the question will be resolved.

Convener, the Scottish Government has clarified its position, and I am happy to support you in closing the petition. The debate will be carried out elsewhere and it is not for this committee to take it forward.

Is it agreed that we close the petition on the grounds that the Scottish Government has clarified its position, that there are likely to be many opportunities for the Parliament to debate the issue and for constituents to engage with members, and that there are many channels through which the petitioner can continue to raise the issue?

I emphasise that this is not about having a view on what the petition calls for, but about whether this committee is the best place for the conversation to continue. We thank the petitioner for lodging the petition and affording us the opportunity to clarify the Scottish Government’s view on the matter.

Are we agreed?

Members indicated agreement.

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Thyroid and Adrenal Testing and Treatment (PE1463)

The next petition is PE1463, on effective thyroid and adrenal testing, diagnosis and treatment. I welcome Elaine Smith, who is attending the committee for its consideration of the petition.

The petition was lodged in December 2012. It was first considered by the Public Petitions Committee in parliamentary session 4 and consideration has continued in session 5. On 29 March 2018, the committee published a report on the petition, and a debate on it was held in the chamber on 4 December 2018.

Several issues that we might want to consider came out of the debate. The Minister for Public Health, Sport and Wellbeing confirmed that the National Institute for Health and Care Excellence intends to develop a guideline on thyroid disease, with publication expected in November 2019. The minister highlighted that the deputy chief medical officer, Dr Gregor Smith, met representatives from NHS Education for Scotland and that an endocrine learning module has recently been produced for GPs. Dr Smith has asked the chief medical officer’s specialty adviser for endocrinology to review the module in the light of the issues that have been raised through the petition.

In relation to the prescribing of triiodothyronine—or T3—the minister has undertaken to write to health boards to confirm that patients who need access to T3 under an endocrinologist can obtain it. He also asked all members to make him aware of any instances where patients cannot access T3 as a treatment.

There were also a few calls for a short inquiry to be carried out by the Health and Sport Committee. Any such inquiry would obviously be a matter for that committee, which would need to take into consideration its other work programme commitments.

The cost of T3 was raised as a possible barrier to treatment. As was mentioned in the debate, the pricing of medicines is a reserved matter.

Do members have any observations? It might be helpful to hear from Elaine Smith first, given that she participated in the debate and has pursued the issues over a significant length of time.

Thank you, convener, for allowing me to come along to the committee. I thank the committee for its work and for the debate in the chamber. The issues can be difficult to get to grips with, but I think that committee members have done that and know what the issues are.

I thank Dr Toft—I have just heard that he is retiring—who has been on a thyroid journey over the past decade, often against intransigent establishment views. He saved my life and the lives of others.

I also thank Lorraine Cleaver, who had hoped to be here today but unfortunately could not be. T3 was not really her issue, but it took over the debate to an extent because of the massive price hike, which meant that boards refused to prescribe it. When Lorraine started the petition, she wanted to help other people to avoid the horrors that she had been through, and she was hopeful that one of the outcomes might be that she could get desiccated thyroid hormone on prescription rather than having to buy it on the internet. We have not reached that stage, despite it being the only treatment to be extremely effective until thyroxine—T4—was invented and made money for the pharma industry. Desiccated thyroid hormone remains unavailable in this country, and the industry cannot make money out of it, which is unfortunate.

The committee paper is very informative, as was the way in which the convener outlined the issue. The paper highlights some of the remaining outstanding issues, one of which is the possibility of a Health and Sport Committee inquiry, which has been supported by some members of that committee. The main reason to have an inquiry is that the issue is an on-going one that directly affects the health and wellbeing of patients, who are mainly women. Although the petition has helped to raise the profile of the matter, there has not been a resolution to all the issues. We need more clarity on the guidance from Government and health organisations, as there are inconsistencies.

A Health and Sport Committee inquiry might do something like what was done with the mesh inquiry. Hearing about the issues directly from women who are suffering is really powerful, and perhaps that committee could also hear from endocrinologists who are prescribing T3 and have seen the difference that it makes. It is important to support them, because in some ways they are up against the establishment, too. However, obviously, that is up to the Health and Sport Committee. I have written to that committee and sent you all a copy of that letter.

10:45  

As the convener pointed out, the minister said that he would write to health boards, which he may have done, but unfortunately nothing has changed. I sent some examples to Joe FitzPatrick and the reply that I received was rather worrying. He said:

“it is important to emphasise that clinicians can prescribe T3, or recommend prescribing T3 for an individual patient if their symptoms are not adequately controlled with ...(T4). That decision is ultimately for the clinicians involved in the case”.

However, he went on to say that the decision is also for

“the relevant NHS Board ... to take.”

Unfortunately, the three boards that I have been dealing with—NHS Tayside, NHS Grampian and NHS Ayrshire and Arran—are still refusing to prescribe T3 to patients.

I will not take much longer, as I imagine that members will want to come in, but I want to share some of the words of patients. One wrote to the convener and said:

“The words spoken by Mr FitzPatrick gave me real hope that my fight for T3 was finally over.”

However, she went on:

“NHS Tayside have removed T3 from their formulary that is their procedure on prescribing T3. I cannot put into words how angry, disgusted, frustrated and upset I am”.

She said that it was “a cruel blow” and “hard to bear”. That letter was sent at the end of January, so it is recent and she is not getting her T3.

Another patient said that she has

“been on a combination of T4/T3 for ... 10 years.”

She goes on to say:

“Without T3 I am unable to function properly. I’m struggling with my mental health at the moment as it is”

and

“I am only just starting to plan for my future”.

She says:

“Basically if my T3 is stopped they may as well just give me a loaded gun.”

That was dated late last year, after the debate, so it is another live case.

I have another letter here from a woman who could not get T3 from the NHS but who is buying it privately. She says

“I doubled my kidney function on my own and I can breathe without inhalers and steroids”.

She is having to do that on her own because she is not getting the T3.

Therefore, although the committee’s work has been excellent, the debate was good and I was heartened by what the minister said, unfortunately, health boards are taking that clause in his letter saying that it is up to them to mean that they do not have to prescribe it, even when clinicians have done so.

It is essential that the Government addresses the genuine experiences and concerns of patients and sufferers. I suggest that the committee keeps the petition open for now, because there are so many outstanding factors, not least that health boards are still not prescribing T3.

There is a lot of follow-up to be done from the debate. I am going through it at the moment to pick up things of interest that I want to write about, and the committee might want to do that as well. For instance, I want to get some feedback on what has happened in relation to Dr Smith’s comments. However, the most worrying thing is that health boards are basically ignoring what the minister said, they are ignoring clinicians and they are certainly ignoring women whose lives depend on the treatment.

I have had cases in which constituents received a diagnosis and prescription from a clinician but the system then said that it did not have to prescribe T3 for them, even though it had been identified as what they needed. In the debate, I was reassured that that is not now happening but, as Elaine Smith pointed out, people are using powerful and emotive language to talk about the impact on them.

The question for the committee is not about the fact that those issues remain and are significant, but whether we can help or whether we should pass on the issue to the Health and Sport Committee, given the minister’s commitment and the question of accountability. We have to think about how productive we can be and be alive to how long the petition has been on our books.

Interestingly, a lot of my information came from a man—a friend of mine, who feels that T3 has turned his life around. I know that it is predominantly women who are affected, but it is not exclusively women.

I was very hopeful, having taken part in the parliamentary debate and listened to the minister’s reply, that we might be moving to a position in which the committee could step back from considering the issue. However, a couple of things still nag away at me, such as the inconsistency across health boards. I know that the Health and Sport Committee is considering doing an investigation and perhaps we should write to it to ask whether that will happen.

I would also quite like to hear from Joe FitzPatrick what the responses have been from all the health boards. If certain health boards have been highlighted as recognising that there are patients who require T3 as a treatment but are not prescribing it, why do we not just ask them directly why not? That in itself would put a bit of pressure on them.

It is really important to establish the reasons for not prescribing T3 because, in the debate, it was teased out that that was due to cost and supply issues. I wonder whether it is still the case that health boards are not allowing this essential drug to be prescribed due to cost and supply issues rather than for clinical reasons.

I do not know how the committee can make progress on the issue if it is a reserved matter. I think that it would be quite weak to say, “Why don’t the petitioners take this forward with their local MPs, as it is a reserved matter?” Is there anything that could be added to Brian Whittle’s letter to Joe FitzPatrick to find out the true reason why health boards are not releasing T3? Is it due to cost or is it due to choice and clinical reasons?

Although T3 is comparatively expensive, the overall cost—given the number of patients who are being treated—does not come to a huge amount of money. The idea that the reason could be cost nags away at me, because the actual cost to the health budget is not that high.

I think that the Public Petitions Committee has probably taken the petition as far as it can go, especially after having a debate in Parliament. It might be more appropriate to pass it on to the Health and Sport Committee and ask it to hold an inquiry. Brian Whittle and I are on that committee, and I think that it could take it a bit further than we can.

I agree with other members’ comments about feeling disappointed that the minister’s reassurances have not been followed through at health board level. Like everyone else who was at the parliamentary debate, I left the chamber feeling quite heartened by the minister’s response, but if there are still issues, they clearly have to be addressed. The best way to do that would probably be an inquiry by the Health and Sport Committee. To follow on from David Torrance’s suggestion, we need to get confirmation from that committee that it will go ahead with such an inquiry before we can close the petition, out of fairness to the petitioners and to Elaine Smith, who has followed the petition from day 1. We need to get confirmation that the Health and Sport Committee would be happy with that course of action before we close the petition, because it is clear that unanswered questions remain.

We have the option of referring the petition to the Health and Sport Committee, but I detect a bit of unease that, if we did so, we would not have any certainty that an inquiry would be conducted. However, there is a particular role for that committee in holding the minister and the health boards to account in a way that we cannot do.

My sense is that we do not want to close the petition; rather, we want to contact the Health and Sport Committee and get confirmation of its interest in doing an inquiry. The only outstanding point is whether, at this point, we want to do anything ourselves in relation to the health boards along the lines that Brian Whittle outlined.

In the debate, Elaine Smith was very keen on the recommendation that the Health and Sport Committee should hold an inquiry, and Miles Briggs said the same. However, I have a niggle: I think that we should speak to Joe FitzPatrick prior to referring the petition to the Health and Sport Committee. I do not know how onerous that would be for the committee, but we can say that although we have done the inquiry and had the debate, there are still unanswered questions. I do not think that matters have been properly rounded off.

We are not suggesting that matters would be rounded off. I think that everybody recognises that there is more work to be done and, in my view, the best place for that work to happen is the Health and Sport Committee. We are saying that the work needs to be done and that, if the Health and Sport Committee is not going to do it, we do not want to let go of the petition. In any event, Joe FitzPatrick is going to appear in front of a committee, is he not?

We recognise that there are issues that we had thought had been identified and clarified in the debate on which we still have questions. The correspondence that Elaine Smith read out about the position that people feel that they have been left in would trouble anybody.

Our preferred position is that the Health and Sport Committee conduct an inquiry, but we recognise that it is outwith our gift to determine that that will happen, so we can write to it. If that is not going to be done through the Health and Sport Committee, we will need to reflect further on what we will do. That might mean that we would bring representatives of the health boards or Joe FitzPatrick back in front of us. Do members agree to that approach?

Members indicated agreement.

We agree to write to the Health and Sport Committee to urge it to conduct a short inquiry to reflect on the issues in the debate and issues that seem to have emerged from it that we had not really expected.

I thank Elaine Smith for her attendance and close the formal part of the meeting. We now move into private session.

10:57 Meeting continued in private until 11:18.