Seòmar agus comataidhean

How could I resist that invitation, convener?

I understand that this is your last meeting, so I decided to rock up in support of what I think is the most consequential petition that the committee has dealt with. Like you, I acknowledge that Lynne McRitchie, a leading light in the Wishaw neonatal warriors, has joined us today. We are hoping that Tammy Johnstone-Little and her son Kai will make it through, but if not—traffic being what it is—we hope to see her at some point.

I will make a general observation before I dive into the petition. I waded through the minister’s 14-page submission to the committee. I was equally aware that petitioners only get 1,000 words in which to express their view. I make the point for a future committee that, although committee members do not want to be deluged, it should be a level playing field. Therefore, 14 pages from the Government versus 1,000 words from the petitioner could be addressed for the future.

I have to say to you that it is 14 pages of selective information, which is devoid of timetables. Although I thought you were very kind in your comments about the submission from the minister, I am going to be slightly tetchier.

First, the original best start document referred to a reduction in the number of neonatal units from eight to three to five. That was very clear. It was only at the options appraisal part of the process that it became three. You will appreciate the significance of that in a moment. The original best start document was very clear that it was three to five units—not as the minister contends in the opening paragraph of her letter. It has always been our contention that it is right to reduce the number so that we have the specialist capability across Scotland, but that there did not need to be three units; there could have been four or, indeed, five. That has simply been disregarded by the minister and her team.

The second thing I would say is that the involvement of the parents took place after all decisions were made—once the options were decided. If you read through this letter, it gives the impression that they were involved right from the get-go. That is simply misleading: it is misleading to the committee and does not reflect the reality of what happened.

In the online survey that was mentioned, there was a facilitator. The survey had three questions, which were on psychological support, the young patients family fund and information about the unit. People were not allowed to respond to questions on any other points. The conversation was directed in such a way that people wanting to object to the proposal and give details of their experience were not allowed to contribute in that way. Therefore, I stress to members that to suggest that parents have been engaged is entirely misleading

On the issue of misinformation, the Wishaw neonatal warriors have consistently, on their social media platforms, talked about the downgrading of the unit but at the moment, local MSPs are indicating that nothing is changing and there is nothing to worry about, which in itself is probably not quite accurate. I will leave that sticking to the wall.

We have real concerns about implementation. It has gone really slowly. I know for a fact that there are genuine concerns about the capacity in different locations to cope with what is happening. I will give an example of that, which happened at the tail end of last year, I believe, to two parents, who I am not going to name. They come from Glasgow. There was no space in any of the facilities in Glasgow, so they were transferred to Aberdeen maternity hospital. Twins were born to them at 24 weeks; sadly, one of the twins did not make it. They feel that they have been unable to grieve. They have been separated from family support, which has been at a distance. They were transferred from Aberdeen to university hospital Wishaw to be nearer to home, then from Wishaw to the Royal Alexandra hospital in Paisley, and then, finally, back to Glasgow. Both parents are suffering considerably as a consequence of that. Both are on antidepressants, and at least one of them remains off work. [Interruption.] Excuse my cough—that is the problem with having a cold.

I implore the committee to keep this petition open. I think that this is unfinished business. The committee has invested a huge amount of time in it. This change is just not capable of being implemented at this time. I have given the committee a real-life example of somebody’s journey through what might end up being the new system of transfer from hospital to hospital that shows how it is not in the interests of the parents or the children.

I will leave that with the committee, with a plea to keep the petition open. That is the wish of the petitioners. I have explained to them the difference between keeping it open and closing it, and they want to keep it open.

:In fairness, he was not assisted entirely by me. The petitioner has moved, with great judgment, from Dundee to Dumbarton, so he is now my constituent. Other people have been involved, and the assistance has been cross-party.

I will add just a couple of things. I, too, note that members of Isla’s family have joined us in the public gallery. You are correct to say that they met the Cabinet Secretary for Health and Social Care. It is fair to say that considerable progress has been made, and I pay tribute to Isla’s family for pursuing the matter, but the work is not quite yet complete.

I know that the committee is keen to close petitions, but I feel the need to put on the record that we are talking about a number of on-going reviews and that we do not yet have final changes to practice across Scotland in relation to the diagnosis of cancer among children and young people.

It may well be that the family choose to bring back their petition in the new session of Parliament, depending on what happens on 7 May, to make sure that this is finally concluded, but I acknowledge the progress that has been made because of their campaigning and their interest in this issue. Thank you, convener.

:Thank you for giving me permission to speak, convener. I would like to add a couple of things.

You will know that the issue has been raised not only in the Scottish Parliament but in the United Kingdom Parliament, by Dave Doogan MP and now Douglas McAllister MP. There has truly been a cross-party effort on the petition, and Mr Cornock has met the Lord Advocate, as you said, and the First Minister.

Although you are right to say that the process has been helpful and has led to changes, including the minute and guidance that you mentioned, the solution requires more than guidance. If the solution does not involve legislative change, I am yet to hear from the Government what change will consistently deliver the result that people want.

As you acknowledged, the reality is that, since 2007, there have been no FAIs in Scotland for unexplained deaths abroad, while, in England, there have been 1,700. That is not right. There is a gap in the law.

I would argue, given the thousands of Scots who work abroad, that this process is not over and that the petition needs to carry on. It is a matter for the committee whether you continue it, but I would urge you to do so, because the reality is that loved ones need clarity, truth and justice in the event of an unexplained death abroad.

The committee has taken the trouble to make sure that the petition is heard. I hope that you will continue to keep it open but, if you decide not to, please take this as notice that the petitioners will bring the issue back to Parliament, because it is unfinished business.

I know that the committee is no longer routinely inviting MSPs to speak, so I appreciate the opportunity. I join you in welcoming Isla’s mum, dad, aunt, uncle and grandmother to the visitor gallery today.

We all agree that there have been significant advances in cancer care. Our clinicians do an exceptional job, but that is what makes Isla’s experience all the more disappointing. She first went to her GP in July 2022, and she received a diagnosis some two years later. By that time, her cancer had spread and was too advanced to treat.

The family raise three main issues. First, GPs who are diagnosing such conditions see only about 180 children and 200 teenagers every year, so the reality is that a GP will not come across a child with cancer very often. The family want improvements in diagnosis by and guidelines for GPs. In fairness, the Scottish Government is addressing that, which is particularly welcome. Secondly, there is no longer data collection on the number of children and teenagers who get cancer. Again, the Government says that it is addressing that, which is also welcome, but there is work to do before it becomes a reality.

I would like to concentrate on the third issue. Isla’s GP made an urgent referral for a biopsy—it was at that stage that the clinic downgraded the referral from urgent to routine, and we lost even more time. It decided to do that on the basis that she was young—that was it. The sole clinical judgment was that she was young, so the referral was just made routine. It is inappropriate to downgrade on the basis of somebody’s age.

I risk being on the wrong side of the committee, but I think that we should take our chances and keep the petition open. I invite the committee, if there is time remaining, to write to the Scottish Government specifically on the referral point, which the Government has not addressed in its submission to any great degree, and to ensure that children and young people in Scotland will be treated in exactly the same way and as urgently as adults with cancer.

10:00

I know that the committee is no longer routinely inviting MSPs to speak, so I appreciate the opportunity. I join you in welcoming Isla’s mum, dad, aunt, uncle and grandmother to the visitor gallery today.

We all agree that there have been significant advances in cancer care. Our clinicians do an exceptional job, but that is what makes Isla’s experience all the more disappointing. She first went to her GP in July 2022, and she received a diagnosis some two years later. By that time, her cancer had spread and was too advanced to treat.

The family raise three main issues. First, GPs who are diagnosing such conditions see only about 180 children and 200 teenagers every year, so the reality is that a GP will not come across a child with cancer very often. The family want improvements in diagnosis by and guidelines for GPs. In fairness, the Scottish Government is addressing that, which is particularly welcome. Secondly, there is no longer data collection on the number of children and teenagers who get cancer. Again, the Government says that it is addressing that, which is also welcome, but there is work to do before it becomes a reality.

I would like to concentrate on the third issue. Isla’s GP made an urgent referral for a biopsy—it was at that stage that the clinic downgraded the referral from urgent to routine, and we lost even more time. It decided to do that on the basis that she was young—that was it. The sole clinical judgment was that she was young, so the referral was just made routine. It is inappropriate to downgrade on the basis of somebody’s age.

I risk being on the wrong side of the committee, but I think that we should take our chances and keep the petition open. I invite the committee, if there is time remaining, to write to the Scottish Government specifically on the referral point, which the Government has not addressed in its submission to any great degree, and to ensure that children and young people in Scotland will be treated in exactly the same way and as urgently as adults with cancer.

10:00

I know that the committee is no longer routinely inviting MSPs to speak, so I appreciate the opportunity. I join you in welcoming Isla’s mum, dad, aunt, uncle and grandmother to the visitor gallery today.

We all agree that there have been significant advances in cancer care. Our clinicians do an exceptional job, but that is what makes Isla’s experience all the more disappointing. She first went to her GP in July 2022, and she received a diagnosis some two years later. By that time, her cancer had spread and was too advanced to treat.

The family raise three main issues. First, GPs who are diagnosing such conditions see only about 180 children and 200 teenagers every year, so the reality is that a GP will not come across a child with cancer very often. The family want improvements in diagnosis by and guidelines for GPs. In fairness, the Scottish Government is addressing that, which is particularly welcome. Secondly, there is no longer data collection on the number of children and teenagers who get cancer. Again, the Government says that it is addressing that, which is also welcome, but there is work to do before it becomes a reality.

I would like to concentrate on the third issue. Isla’s GP made an urgent referral for a biopsy—it was at that stage that the clinic downgraded the referral from urgent to routine, and we lost even more time. It decided to do that on the basis that she was young—that was it. The sole clinical judgment was that she was young, so the referral was just made routine. It is inappropriate to downgrade on the basis of somebody’s age.

I risk being on the wrong side of the committee, but I think that we should take our chances and keep the petition open. I invite the committee, if there is time remaining, to write to the Scottish Government specifically on the referral point, which the Government has not addressed in its submission to any great degree, and to ensure that children and young people in Scotland will be treated in exactly the same way and as urgently as adults with cancer.

10:00

Thank you, convener. I thank you and the members of the committee for your considerable forbearance and for giving me an opportunity to speak. I do so on behalf of my constituents in the Loch Lomond Angling Improvement Association. The consideration of the regulations has become an annual fixture in my calendar, and in this case we are talking about Scottish statutory instrument 2025/390. Members can also be forgiven for thinking that this is a bit like groundhog day, because I see many of the same faces around the table.

At the heart of the issue is a continuing problem with the reliability of the data that is used. I have been talking about salmon conservation and regeneration since 2017. Members will be pleased to hear that I will not be rehearsing everything that I have said since then, but it is remarkably consistent. Last year, I lodged a motion to annul the SSI. I have chosen not to do so this year but I assure the cabinet secretary, who I hope will read what has happened at committee, that I will do so in the future if things do not improve substantially.

Last year, officials and the cabinet secretary said that data about catches on the River Endrick was robust, which was clearly an aspirational declaration rather than a factual one and I will demonstrate why. Since last year, considerable engagement has taken place between the LLAIA and Marine Scotland, resulting in the identification of new fisheries that were not previously known about, the identification of two stretches of the Endrick totalling 1.3km for which no ownership details have been established, and much more besides.

That demonstrates what we have all been saying all along—the data is not good enough and it is certainly not robust. That is true for other waters. Although I am here representing Loch Lomond, others share concerns about data.

Not for the first time, the LLAIA has invested considerable time and effort in trying to ensure that Marine Scotland has an accurate and complete view of Endrick fisheries and owners. Why it has taken repeated efforts over many years to get to this position is, frankly, more than disappointing, and it is little wonder that confidence in the process and the accuracy of the data is less than fulsome.

I am sure that the committee will appreciate that having an accurate view of the fisheries and owners on the Endrick is one thing, but ensuring that owners return catch data is another thing entirely. There are concerns that there appears to be no real enforcement or follow-up by Marine Scotland of the catch data. We are therefore again faced with relying on incomplete data on fisheries and owners and incomplete data if returns are not made.

As I said, when I looked back to refresh my memory of our discussions, I was struck by how I am making exactly the same arguments year after year and the same arguments that the committee understands. I am, however, not one just to bring the committee a problem. I brought the committee a solution previously, which was a suggestion to use fish counters as a means of removing subjectivity and the need to estimate catches. It would bring real rigour to the process. My recollection is that the cabinet secretary thought that it was a good idea, as did members of the committee. Disappointingly, however, in the time that has elapsed, nothing appears to have been done. Here is a relatively easy way of using quantitative data rather than estimates and assumptions. Convener, I am nothing if not persistent, so I make the suggestion again in the same spirit that I did previously.

However, we cannot keep coming back, saying the same things and having the same conversations because the data has not improved and nothing has changed. Therefore, I respectfully suggest that, if Marine Scotland does not improve what it does, or at least trials the use of fish counters—I offer the Endrick as a suitable site for that—I will regretfully be back here next year with a motion to annul. At the end of the day, we are not doing anything to help salmon conservation or regeneration if we keep relying on poor or incomplete data.

Thank you, convener, for giving me the opportunity to speak.

Thank you very much.

I speak to amendment 56, which I lodged on behalf of Children’s Hospices Across Scotland. I think that we would acknowledge that one of the central problems with the bill as drafted, as identified in the committee’s stage 1 report, is the definition of “terminal illness”. It is extremely complex to diagnose and assess, particularly in young adults. There is a genuine feeling that there is a need for further definition in the bill about young adults specifically and not just about adults in general.

The bill’s definition of a terminal illness does not recognise the significant clinical differences between a young person with a life-shortening condition that might meet the bill’s definition of terminal illness and an older adult with a terminal prognosis. The current definition would bring into scope young people who potentially have years of stable life left to live, which goes against the stated intention of the bill that it should be reserved for those at the end of life.

An example is a young person with complex Duchenne muscular dystrophy, for which medical advances can delay an ultimately inevitable death for years or even decades.

Other conditions such as—[Interruption.]—I am having a problem pronouncing words today; I did not lose my voice as Ross Greer did and I kept going, but sometimes I wonder whether I should have done so. I will try again.

For other conditions, such as spinal muscular atrophy, treatment options are increasingly becoming available that might alter prognosis and quality of life to such an extent that the position of the young person in relation to assisted dying would change dramatically.

Key terms such as “advanced and progressive” do not have accepted standard definitions or interpretations in the clinical context. There are multiple ways to define premature mortality, especially in the context of a young person with a life-shortening condition who, by definition, is likely to die young. My amendment 56 is essential if we want to safeguard young people and provide certainty and clarity to medical practitioners about how they must interpret the act in their clinical assessment of a young person. I believe that a guarantee is needed within the bill. Making provision for such guidance within the bill will help to ensure that young people are not at risk of being approved for assisted dying prematurely.