Improving Care, Equity and Outcomes for People Living with Fontan Circulation in Scotland

That the Parliament recognises what it sees as the growing current and foreseeable clinical needs of people in Coatbridge and Chryston and across the country living with Fontan circulation and complex congenital heart disease; notes that international prevalence data suggest that between 300 and 400 individuals in Scotland currently live with a Fontan circulation, with adult survival now exceeding 85 to 90%, resulting in a growing adult population at increasing risk of multi-organ failure; understands that up to 50% of adult Fontan patients develop clinically significant liver disease and that approximately 20 to 30% might ultimately require heart or combined heart and liver transplantation; believes that Scotland currently lacks a dedicated national pathway for failing Fontan circulation and complex congenital heart disease requiring transplantation, resulting in patients being referred outwith the country, most commonly to centres in England; recognises the physical, emotional, financial and logistical burden that is placed on patients and families as a result of prolonged separation, fragmented continuity of care and ongoing cross-border follow-up requirements; notes what it sees as the absence of a formalised Scottish shared care model for post-transplant surveillance and long-term management; acknowledges Scotland’s existing strengths, including the Scottish Adult Congenital Cardiac Service (SACCS), established heart transplant infrastructure at the Golden Jubilee National Hospital, experienced cardiothoracic surgical programmes and national service planning capability; believes that there is a strategic opportunity to develop a coordinated Scottish Fontan hub to deliver structured national surveillance, early risk stratification, multidisciplinary care, transplant coordination and post-transplant shared care; considers that such a model would improve patient safety, equity of access, continuity of care, clinical outcomes and long-term sustainability, while supporting the principle of care closer to home, and notes the calls on the Scottish Government to engage with NHS Scotland, SACCS leadership, transplant centres and patient representatives to carry out a feasibility assessment for the development of such a national Fontan hub and a structured complex congenital transplant pathway, including consideration of workforce planning, training pathways, infrastructure requirements and long-term service sustainability.