Seòmar agus comataidhean

Absolutely, and if I had stuck to my speaking notes, Councillor Robert Brown would have been one of the first people I would have mentioned. When I became a South Lanarkshire councillor in 2012, Robert Brown was the first person to say hello and greet me as a fellow councillor, and we used to sit together on the licensing committee. I was pleased to see Councillor Brown expertly chair the AGM a few months ago. I know that he is completely dedicated, as are all the committee members.

A big thank you to all the volunteers, everyone who is sponsoring events and local businesses. I hope that everyone has a good time, and I look forward to hearing whether the cabinet secretary will partake in any of the events.

13:12

Another fantastic organisation has come to mind: Classrooms for Malawi, which is also based in Rutherglen. Over the years, we have joined forces on the issue of period dignity, and I know that it appreciates the cross-party work in the Parliament that led to the Period Products (Free Provision) (Scotland) Act 2021. Does the cabinet secretary recognise the good work that it does in his portfolio?

I have great faith in Edward Mountain, even though he might be talking himself down today. As convener, he expertly chairs the committee every Tuesday morning.

As I look around at the colleagues who are in the chamber, I know that we can do this. As Douglas Lumsden said—I think that he is flirting with the idea of supporting the bill—it matters to the people of the north-east of Scotland; it matters to my constituents; and it matters to us all.

There are technical points for us to deal with. I understand members’ frustration and curiosity about section 40 of the 2014 act and why there have been no prosecutions. Colleagues have raised concerns about whether we have the right resources in place for our regulators, including SEPA. I hope that the bill has allowed that debate to open up.

I thank Bill Kidd for mentioning Polly Higgins, and I want to mention those colleagues, including Richard Leonard, who brought tears to my eyes. I cannot take people being nice to me—I am not used to it.

However, I reassure members that this is not about being sentimental or about Scotland trying to get headlines. We are now one of the most nature-depleted countries in the world. We all love Scotland and we all care about its future, but we cannot be complacent any longer.

In committee, when the cabinet secretary was giving evidence, colleagues asked, “What if the bill puts off investment? What if people do not want to come to Scotland because we have an ecocide law?”. Well, I want people to know that we will have an ecocide law. We welcome investment and we want development, but we need it to be in the right place and done in the right way, and I have great trust in our planning authorities to do that. Maurice Golden is giving me a look; I note that my husband is a planner, so I have to say that I trust our planners. Planning is where I learned about protecting our environment, and we must recognise that planners already look at environmental impacts.

Amendments have already been set out in writing that we agree on, and we can work on them at pace. I am listening to all committee members, but it is up to the committee to agree the time to do the work. I will be working, and my door will be open to everybody. If we kick the issue down the road, we will do a great disservice not only to our current constituents but to future generations. That is why it is not just environmentalists backing the bill—it is health charities such as Asthma and Lung UK and bodies such as the Children and Young People’s Commissioner Scotland, because they know that our young people need a safer, healthier Scotland.

I thank the Scottish Government and all members who are backing the bill. To those who are not yet convinced because they are worried about the amount of time left, I ask them to give the bill a chance. I assure all members that I will work night and day to ensure that we will have a robust bill at the end of the process.

I declare an interest as a fellow member of the committee, although I was recused from scrutiny of the bill.

I recognise that, like other committees, the committee has a high workload. However, does the member feel reassured by me and the cabinet secretary that work on the amendments has already started? The memorandum that the cabinet secretary sent to the committee in September set out the Government’s thinking. I have been working on the bill for a long time, and I will work rapidly to ensure that we have a small but streamlined set of amendments. Does the member put trust in me, as one of his fellow committee members, that I will not waste valuable parliamentary time but will work to ensure that he can vote on a bill that his constituents in North East Scotland also support?

Scotland’s firefighters are demanding urgent funding to end the SNP’s decade of dangerous underinvestment, which has cut one in six firefighters since 2013—that is 1,250 posts—and delivered a real-terms reduction of £84 million in the fire and rescue resource budget. Will the cabinet secretary explain why her budget does not reverse those cuts and why it fails to fix the £800 million maintenance backlog relating to our fire stations, equipment and ageing vehicles, which are vital to protecting Scotland’s people, environment and infrastructure against fire, flood and storms?

Will the minister take an intervention?

I am encouraged by the minister’s remarks so far. Does she agree that it is important that we get it right for every single PKU patient, including those who have other health conditions or who may be neurodivergent? One of my constituents has been in touch about her children who live with PKU and who are also autistic. Their health outcomes right now are awful—I will not go into detail about those, but I would appreciate the chance to speak to the minister, and perhaps she could meet that family. There are people with other challenges who are not having their needs met.

I thank Fulton MacGregor for securing the debate, and I thank the colleagues who have taken part. It is important that the voices of the PKU community are heard in the Scottish Parliament.

As we have heard, PKU is a rare inherited metabolic condition that demands an extraordinary level of discipline. It is a relentless 24/7 commitment to a diet that is so restrictive that most of us would struggle for even a single day, never mind a lifetime. Yet, for the PKU community, that is a necessity to prevent irreversible neurological damage.

I join colleagues in paying tribute to the National Society for Phenylketonuria. Its advocacy is the reason why we are here. I also thank the individuals and families who attended the recent drop-in event, which was excellent. Their bravery in sharing the realities of their lived experience is what drives policy change. It was a pleasure to meet them all—I can see some of those faces in the public gallery. I mention Mags Lappin from my home town of Blantyre. Mags first contacted me a few years ago to tell me about the condition and her daughter Carys. Carys is an adult, so Mags has a lot of experience. She is a tireless campaigner, but she should not have to be.

Parents and caregivers are exhausted. What has struck me, and what I want the minister to take from my contribution, is that Mags has an adult daughter and she describes the current state of Scottish clinical services for adult PKU patients as “frightening”. In her own words, Mags has witnessed a “demise” in care. She recalls a time when Glasgow had a world-class metabolic team. To see those services erode to the point at which she believes that we have “gone back 30 years” is simply heartbreaking, so we need to get a response to that.

The motion highlights two game changers: home blood monitoring and sepiapterin—I have probably not said that properly. Currently, patients use dry blood spots. They have to prick their finger, mail a card to a lab and then wait days for a result. That is like a person with diabetes having to wait a week to know their blood sugar level. That would not be acceptable. New trials of point-of-care devices allow for results in under 30 minutes via a smartphone app. That does not just provide data; it provides freedom and the ability to make real-time dietary adjustments.

Likewise, the APHENITY phase 3 trials for sepiapterin have shown incredible promise. In those trials, nearly 73 per cent of participants saw a significant reduction in blood phenylalanine—again, from my pronunciation, members will be able to tell that I am not a clinician—and some were even able to double or triple their daily protein intake. For a PKU patient, that is the difference between a life of medical formula and the ability to eat a more normal meal.

However, innovation is no use if it does not reach the patient. Carys was able to trial sepiapterin only because her mum would not let the issue go. Even then, Carys was at only half the European guideline dosage. I ask the minister to take a look at why, in Scotland, we are seeing patients receiving treatment that goes against international guidelines and the standards that are set across the rest of the UK. We need to look at the chronic staffing shortages that leave families feeling left behind and abandoned. Adult care, in particular, appears to be totally unacceptable. We need accountability. We need dedicated metabolic dieticians and a commitment to those new technologies.

We cannot allow the clock to tick backwards. Mags and Carys and many others have fought for long enough, and we need to make sure that we have PKU services for everyone in Scotland that we can all be proud of.

Will the cabinet secretary take an intervention?

I am grateful to the cabinet secretary for taking my intervention before she moves on to the next point. I appreciate the efforts that are being made, and the NHS Inform website is always worth a visit, but I am not sure that a huge number of 16, 17 and 18-year-olds are going on to that site.

Given the growing trend of non-fatal strangulation, which is worrying us all, what more can Government do to get out the message that there is no safe way to strangle or be strangled? How do we get that message into our classrooms and on to social media in a more positive way? What other levers can Government pull, so that we can support that message?