Chamber
Meeting of the Parliament 13 January 2026
13 Jan 2026 · S6 · Meeting of the Parliament
Item of business
Living with Phenylketonuria
Fulton MacGregor has anticipated what I was about to say. Sepiapterin—I hope that I have pronounced that correctly—is expected to be launched in the United Kingdom in late 2027.
Some points have been made on national guidance, on which I am happy to write to members, and on the home monitoring kits, which I understand are in a research phase to demonstrate their efficacy and overall value. The chief pharmaceutical officer will be discussing that issue in the meeting that she will be having next month.
Families such as those known to Fulton MacGregor and to others in the chamber and across Scotland show extraordinary resilience in their management of PKU day in, day out. I assure them that the Scottish Government remains deeply committed to improving outcomes and to making a real and meaningful difference in the lives of everyone living with PKU and other rare conditions in Scotland.
In the same item of business
The Deputy Presiding Officer (Liam McArthur)
LD
The final item of business is a members’ business debate on motion S6M-20160, in the name of Fulton MacGregor, on improving support and treatment for people ...
Fulton MacGregor (Coatbridge and Chryston) (SNP)
SNP
I warmly welcome members of the National Society for Phenylketonuria who are in the public gallery, and I acknowledge all those who are living with the condi...
The Deputy Presiding Officer
LD
We move to the open debate. 17:59
Annie Wells (Glasgow) (Con)
Con
I thank Fulton MacGregor for bringing this very important topic to the chamber. I feel privileged to have the opportunity to speak about phenylketonuria, kno...
Paul McLennan (East Lothian) (SNP)
SNP
I am pleased to speak in support of the motion, and I thank Fulton MacGregor for lodging it. It is about recognising PKU, which is a rare, lifelong metabolic...
Carol Mochan (South Scotland) (Lab)
Lab
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 th...
Rona Mackay (Strathkelvin and Bearsden) (SNP)
SNP
I thank my colleague Fulton MacGregor for bringing this much-needed debate to the chamber. The debate is important, as the condition is relatively rare and w...
The Deputy Presiding Officer
LD
Before I call the next speaker, I encourage all members who wish to speak to make sure that their buttons are pressed. 17:38
Douglas Ross (Highlands and Islands) (Con)
Con
I, too, congratulate Fulton MacGregor on securing the debate and welcome representatives of the NSPKU who are in the gallery listening to the debate. I also ...
Monica Lennon (Central Scotland) (Lab)
Lab
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 he...
The Deputy Presiding Officer
LD
Before calling the next speaker, to allow all those who want to participate in the debate a chance to do so, I am minded to accept a motion without notice, u...
Christine Grahame (Midlothian South, Tweeddale and Lauderdale) (SNP)
SNP
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....
Katy Clark (West Scotland) (Lab)
Lab
I, too, thank Fulton MacGregor for securing the debate and for his work on the issue. Like Christine Grahame, I did not know about the condition until I was...
The Deputy Presiding Officer
LD
I call Jenni Minto to respond to the debate. 17:55
The Minister for Public Health and Women’s Health (Jenni Minto)
SNP
I, too, welcome the opportunity to respond to the motion on phenylketonuria—I will use “PKU” for the rest of my speech because, like others, I do not have a ...
Monica Lennon
Lab
Will the minister take an intervention?
Jenni Minto
SNP
I would like to make a bit of progress first, please. We are equally committed to listening to those with lived experience and to working collaboratively wi...
Monica Lennon
Lab
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 ...
Jenni Minto
SNP
I recognise the fact that many people in Scotland are living with more than one condition. It is important that we as a Government recognise that—I believe t...
Jenni Minto
SNP
I note that Fulton MacGregor would like to intervene. I will take his intervention quickly because I have an event after this.
The Deputy Presiding Officer
LD
Briefly, please.
Fulton MacGregor
SNP
The minister will probably go on to talk about this, but are she and the Government aware of the three drugs that can be used? She has mentioned sapropterin,...
Jenni Minto
SNP
Fulton MacGregor has anticipated what I was about to say. Sepiapterin—I hope that I have pronounced that correctly—is expected to be launched in the United K...
The Deputy Presiding Officer
LD
Thank you, minister. That concludes the debate. Meeting closed at 18:05.