Meeting of the Parliament 13 January 2026
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 contacted by constituents in the lead-up to the event before Christmas. It is surprising that so many of us knew so little about it. I pay tribute to my constituents who have shared their personal experiences with me, and I am glad that some of them have been able to join us in the public gallery this evening.
As other members have said, PKU is a rare lifelong metabolic disorder that, without strict dietary management, can lead to severe and irreversible neurological damage. As Rona Mackay said, it is estimated that around one in 8,000 people across Scotland are currently living with PKU.
The condition places a significant daily burden on individuals who have it and their families, given the need for constant monitoring of diet and the need to avoid the consumption of many everyday foods, such as bread. Those of us who spoke to people who are directly affected by the condition were astonished to learn about the impacts that it has and impressed by the amount of work that those people do in attempting to manage the condition.
Many children with PKU are more likely to suffer from issues with their attention levels and their ability to process information, which affects their educational attainment. As has already been said, many young people and adults with PKU are more likely to suffer from social isolation, poor mental health and physical health issues. Almost half of parents have had to reduce their working hours or to give up working altogether to provide the necessary dietary care to their children with PKU.
It is clear that the condition has an impact on many aspects of public policy, so it is important that there is higher awareness of it across the public sector. I would be grateful if the minister could outline what steps the Scottish Government is taking to improve support for individuals with PKU and their families to address those issues. I say to the minister that it is clear that it is not an issue that affects only her portfolio.
A concerning issue that came to light in the meetings that I had around the event in December related to people’s experience of how such matters are dealt with in Scotland and in England. They said that, when it comes to some of the medical care that is available, the situation is better down south. I would be grateful if the minister could respond on that issue when she winds up the debate.
We know that lifelong monitoring of PKU is also vital to safeguard health and reduce the risk of avoidable harms, yet the experience of many people who are living with PKU suggests that the current provision of care by the inherited metabolic disease service is inadequate. That point has been made by a number of constituents. There are stories of no face-to-face meetings being provided, years going by between appointments and individuals disengaging from care altogether due to a lack of regular specialist follow up. It would be helpful for the minister to respond to that in summing up.
We know that it is not only individuals with PKU who have been experiencing issues with the inherited metabolic disease services, with charities such as Genetic Alliance Scotland highlighting that similarly inadequate care is being provided to others with rare diseases. I look forward to the minister responding to some of my points, and I reiterate points that have been made by other members on the availability of specific medications that help those who can access to them.