Chamber
Meeting of the Parliament 13 January 2026
13 Jan 2026 · S6 · Meeting of the Parliament
Item of business
Living with Phenylketonuria
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 with clinicians, patient groups, the third sector and our counterparts across the UK. Their insights and partnership working are essential in shaping services that truly meet people’s needs.
A number of people have asked about the work that the Scottish Government is doing. I confirm that the chief pharmaceutical officer will meet the chair of the medical advisory panel at the NSPKU in early February to discuss the challenges experienced by people who live with PKU in obtaining specialised low-protein food products on the NHS. The chief pharmaceutical officer is in the chamber tonight, so she will have heard many of the points that have been raised and I will ask her to ensure that they are reflected in her conversations.
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.