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Navigating the system is a real issue for people, so thank you for those comments. Does anyone else want to comment, convener? I cannot see the witnesses.

Yes—that is fine. Thank you very much.

Good morning. I think that, with those really robust answers, my questions might have been answered, but I just want to ensure that there is nothing else to add. Will abolishing the two-child limit have a different impact on families compared with mitigating it? Is there anything in particular that the witnesses would want to raise in that respect?

I apologise that, when I am online, it is a wee bit tricky for me to see who wants to come in.

I know that the mitigation payments are not going ahead, but can the Scottish Government learn any lessons from that approach if, in future, it is looking at mitigating certain policies or at having different policies from UK social security policy? We have talked about the cliff edge, and we have some of that evidence on the record, but do the witnesses want to make any other points?

I want to touch on rurality in Scotland, which you have both mentioned, but I will see whether there is anything else to explore. The Scottish Government’s impact assessment showed that rural Scotland accounts for about 17 per cent of the population, with 6 per cent in a very remote situation. Those areas have a different demographic; there is talk of a changing pattern, with people retiring to rural areas, so access to services is very different. Are you satisfied that the plan gives enough consideration to that? Is there anything else that we should be doing to address health inequality in more rural and island areas?

That is helpful—thank you.

I, too, thank Fulton MacGregor for bringing the debate to the chamber, and I welcome the guests in the public gallery. I also thank the people who came to the Parliament—I think that it was last week or the week before—to update us on this important issue.

As other members have said, PKU is a rare but treatable inherited disorder that prevents the normal breakdown of the amino acid phenylalanine, which is a natural component of protein. That results in build-up in the blood and the brain. As other members have said, the condition is managed through a specialist diet that avoids foods that are very high in protein, such as meat and dairy. As Fulton MacGregor indicated, however, that is immensely complex.

Delays in treatment can cause long-term health problems, which is why early diagnosis is crucial. However, the complexity of the PKU diet—as we have heard—means that people have a really restricted intake of food and quite a different life when it comes to the things that we all take for granted. It is the human element in all this that we are discussing today: what impact does that have on people’s lives?

Members will know that, many years ago, I worked as a dietician in the NHS. I have heard other members talk about the role of dieticians, and people who have contacted me have highlighted that important role. During my time as a dietician, I supported a small number of people with PKU and their families. At that time, not only was the dietary regime very restrictive—I remember that—but the amino acid substitute was very difficult to take. That experience really gave me a feeling for how one’s family life can be changed by just one event.

Having a family member with PKU means that people think about and look at food in a very different way. Their daily timetable changes, and the things that they enjoy change. That is why families are so concerned to ensure that modern treatments are available for their loved ones to use.

I will talk about the experiences of a mum who reached out to me ahead of the debate. She has two sons who were diagnosed with PKU as newborns and began receiving sapropterin after it was approved in 2022. I will check the Official Report to ensure that the correct drug is there, spelled correctly, because—as we know—a lot of the medications have similar-sounding names.

Following successful treatment, their daily protein tolerance increased from 10g to 28g, before increasing to 38g and 39g respectively. Their mum had to talk to the medics about increasing that further. I will try to give members some perspective on what grams of protein actually mean. When the boys were on 38g and 39g of protein, they could eat only some vegan diets, and dairy-free and gluten-free products, and they still took about 150 tablets a day.

Now, they have managed to increase their tolerance, by using the drug, to 68g and 72g of protein respectively. That has given them real freedom, and they are now on only 36 tablets a day. It is truly remarkable to hear about treatments that make such a difference and about how much people’s lives have changed since the drug was assessed and approved.

However, I make the point that the journey to that stage was by no means easy. Their mum had to fight hard for treatment—she knew that it was readily available in other parts of the UK and in Europe. Her experience was that the guidelines and best practice were not easy to navigate or consistent for people and families.

Scottish patients appear to be getting treated differently, and mums who have had the kind of positive experience that I just described want other families to get that benefit. That experience is probably not unique, and it is an important example of why we have to hear from the minister whether she can look into the matter and ensure that patients in Scotland receive more equitable treatment.

Some of my questions have already been answered, but I want to get some things on the record for clarity. Much of the focus of the evidence session has been on restoring LHA rates to the 30th percentile of rents. Are there any other calculations that we could use? In fact, are there completely different methods that we could use to help low-income renters to secure a tenancy? We have talked about the strategy for tackling homelessness, particularly by getting people into the private rented sector. It is difficult to support people who might want to downsize, so we can provide mitigations in that regard. There is also the issue of housing supply. Are there other things that we should add to the list?

I want to link my last question, which you have probably answered, to one that I asked the previous witnesses. For the record, much of the previous evidence that we heard focused on restoring the LHA rates to the 30th percentile of rents. Do the witnesses have anything that they want to add about that calculation? Could we do it differently, or are there completely different methods that we could look at to ensure that we get some meaningful movement for lower-income people in particular in their tenancies?

Okay. Thank you.