That the Parliament recognises that phenylketonuria (PKU) is a rare, lifelong metabolic disorder in which the body is unable to process the amino acid phenylalanine, leading to a risk of severe and irreversible neurological damage without strict dietary management; acknowledges the significant daily burden placed on individuals and families living with PKU, including the need for constant monitoring and the exclusion of most everyday foods; notes the recent drop-in event hosted in the Scottish Parliament, which highlighted lived experience and current challenges in accessing treatment and support; further notes ongoing UK trials of a home blood phenylalanine monitoring device and the emerging treatment, sepiapterin, both of which offer the potential to improve quality of life; recognises the work of the National Society for Phenylketonuria (NSPKU) in advocating for improved care and access to treatment, and notes the calls on the Scottish Government and NHS Scotland to consider how services for people with PKU can be strengthened to support better long-term outcomes, including in the Coatbridge and Chryston constituency.
Supported by:
Annabelle Ewing, Kenneth Gibson, Jamie Hepburn, Monica Lennon, Rona Mackay, Liam McArthur, Audrey Nicoll, Kevin Stewart, Beatrice Wishart