Meeting of the Parliament 13 January 2026
I congratulate the member on securing the debate and I welcome the guests in the public gallery. I apologise for being unable to be at the event in December.
I will come clean and say that I knew nothing about PKU until I heard about this debate but, after I spoke to Fulton MacGregor briefly and asked him what it was about, I wanted to find out more. I have been here for 27 years and I have never heard PKU mentioned—nobody has mentioned it to me. A bit like Douglas Ross said, that was the pricking of the heel, and I now want to tell my constituents about the issue.
My summary might have mistakes, because it has been gleaned from members’ contributions, and I will not even try to pronounce the clinical terms. However, as I understand it, broadly, the condition is to do with a failure to process proteins appropriately. It is inherited, it is incurable and the damage is neurological and very serious. The condition means that people have to calculate what they are eating and how they are eating it, almost down to the single frozen pea. An example was given of a toddler. It is bad enough feeding a toddler at any time, but imagine feeding a toddler and having to calculate what they have eaten, knowing that it could have devastating effects if it is not done properly.
That took me onwards to think about what happens when children go to nursery, and then to primary or secondary school. What happens when they go to a pal’s birthday party? There is a ripple that extends throughout their childhood. For a very long time, children will not understand why they have to do that, and they will certainly resent it. That will place huge stress on the person who is dealing with it. As I understand it, that is usually the women in the family. It means that people have to give up their work and therefore lose income. The ripples are enormous, and the challenges are huge.
I have heard that there are certain therapies and drugs that might alleviate the condition, although I do not think that they have gone before the Scottish Medicines Consortium yet. I also heard about dieticians, and I heard from the colleague who has been a dietician about what is required.
I represent the Borders and Midlothian, and I have no idea how many people in my constituency have PKU or what the facilities are, but that is not the end of the matter, because I am going to find out. After the debate, I intend to put a link to the debate on my Facebook and to ask people who know about the issue to tell me what is happening in their area. I will also write to NHS Borders to ask what facilities it has in place.
We all know about allergies, such as peanut allergies, milk allergies and this, that and the oatcake, but it is a sadness that people do not know about PKU, which is a fundamental, very serious and devastating inherited disease. However, I say to Fulton MacGregor that the good thing about members’ business debates—I do not like it when we have members’ business debates that are controversial and really party political, but this debate is not one of those; PKU is deserving of a debate, as was the subject of Tourette’s, on which we had a debate a few months back—is that we can bring a very serious and important minority issue into the public arena.
As I said, I am going to put a link to this debate on my Facebook, I am going to ask about it and I am going to find out what is happening in my constituency. I say to the guests in the public gallery that they have educated a politician, which is no mean feat, and that that politician will endeavour to educate her constituents. I hope that that will be helpful.
17:51