Meeting of the Parliament 13 January 2026
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 medical background and I recognise the tongue-twisters that we seem to be approaching.
I recognise the experiences of individuals and families across Scotland who live with this rare and lifelong metabolic disorder. I thank Fulton MacGregor for lodging the important motion and welcome those who are in the gallery to the Scottish Parliament—it is your Scottish Parliament. The event that was held in the Parliament has informed members’ contributions to the debate, which shows the importance of raising awareness among MSPs and ministers.
Like Christine Grahame, I reflected on the debate on aphasia that I responded to late last year. That debate and this one have been two important debates through which members have been able to raise awareness of conditions and challenge what the Scottish Government is doing and ensure that it speaks to health boards. Christine Grahame is absolutely right that the debate is not party political.
I extend my sincere thanks to the NSPKU and everyone who attended the drop-in event in December. Their advocacy and willingness to share the realities of living with PKU have been absolutely invaluable. Paul McLennan’s point that food becomes a calculation for those with the disease stuck with me. Being shown the traffic light system, as it was explained to me, was very powerful. I know that other members have talked about that, too. It is fair to say that the people who I met who are living with PKU described a life of constant challenges, living only with foods classified as red, amber and green. However, once they were able to access sapropterin, life was more like a rainbow.
I take on board Katy Clark’s point about social isolation.
I would be pleased if Douglas Ross could write to me about his constituent. I am very happy to look into the situation in NHS Highland. I confirm that the reason why I shook my head is that I do not like describing any of our constituencies as remote. Remote is a state of mind—let us look at it that way.
The Scottish Government is committed to improving the care and support available to people who are living with rare conditions, including PKU. I pass on the Cabinet Secretary for Health and Social Care’s apologies for not being present for the debate. The subject is close to his heart and I know that when he was an MP at Westminster, he worked very hard with the NSPKU and many of his constituents. I pass on his gratitude to them for the clear arguments that were provided to him to improve the service.