Chamber and committees

: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.

Thank you, convener, and my apologies for being slightly late. I missed Liam McArthur saying that he supports amendment 54, but somebody told me that he does. Unfortunately, he does not support amendment 55, and I fail to understand why, given that, should the bill pass, it is important that it fits into the landscape of palliative and end-of-life care.

All that amendment 55 seeks to do is to create a code of practice to ensure that assisted dying interacts appropriately with hospices and other providers of palliative and end-of-life care. All my amendments come from Hospice UK. Although it has taken a neutral position on the bill, it feels that sufficient safeguards are required for the smooth operation of the bill, should it pass. I therefore suggest that we should listen to the views of key stakeholders in that regard.

We all recognise that this is a significant piece of legislation. The Scottish Government has not yet fully engaged in the legislative process. I understand why—it is a member’s bill—but it is safe to say that this is probably the most significant member’s bill that we have ever considered in the Parliament, at this stage. I know that Patrick Harvie and Margo MacDonald introduced such bills previously, but this is the furthest that such a bill has ever got. It is really significant, and I hope that the Scottish Government engages soon.

It is important to be sure that the bill works effectively and, at the very least, does no harm. Therefore, scrutiny and monitoring will be essential to ensure that we get this right. I urge committee members to support amendments that advance reviews and assessment to assure people as to the suitability of the bill. I therefore press amendment 54.

Amendment 54 agreed to.

Amendment 55 moved—[Jackie Baillie]—and agreed to.

Amendments 71 and 71A moved—[Jackie Baillie].