NSPKU is pleased to note that on 13 January 2026 the Scottish Parliament debated a motion which considered how support and treatment for people living with phenylketonuria (PKU) can be improved across Scotland. The debate recognised PKU as a rare, inherited and lifelong metabolic disorder that, without strict management, can cause severe and irreversible neurological damage.
Opening the debate, Fulton MacGregor welcomed members of the National Society for Phenylketonuria (NSPKU) and families affected by the condition, highlighting the “unrelenting” nature of PKU management and the significant emotional, social and practical burden placed on individuals and carers. He emphasised the need for equitable access to specialist services, emerging treatments such as sepiapterin and home monitoring technologies. Contributions from across the chamber reinforced those concerns noting the need for investment in dietetic support in some areas and improvements and proper staffing of metabolic services.
In her closing remarks, the Minister for Public Health and Women’s Health Jenni Minto acknowledged the extraordinary resilience of families living with PKU and committed to continued engagement with NSPKU, clinicians and NHS Scotland.
The debate is a testament to the work of our members in Scotland who have contacted their MSPs to describe their experiences and concerns about access to treatment and support in Scotland.
The Chair of NSPKU, Andrew Thompson said “People living with PKU in Scotland deserve consistently high-quality care and timely access to modern, evidence-based treatments that can transform lives. I’m pleased to see the Scottish Parliament has been listening to the lived experiences of people with PKU. At NSPKU, we believe progress is best achieved when patients, clinicians, and policymakers work together in a constructive and collaborative way. We remain hopeful that, by doing so, meaningful improvements can be delivered for everyone affected by PKU.”
