Developing a National Scottish Fontan Service and Transplant Pathway

That the Parliament recognises the life-saving role of the Fontan procedure for children born with complex congenital heart disease and a single-ventricle circulation; notes that the Fontan operation is a form of open-heart surgery, which enables oxygen-poor blood returning from the lower body to bypass the heart and flow directly to the blood vessels of the lungs, separating oxygen-poor and oxygen-rich blood and significantly improving oxygen levels throughout the body; recognises that, following Fontan surgery, many children experience improved oxygenation, energy and quality of life, allowing them to survive into adulthood; further recognises, however, that the Fontan circulation is a form of palliation rather than a cure and that people living with it require lifelong specialist surveillance and multidisciplinary care; notes what it sees as the growing current and foreseeable clinical needs of people in Coatbridge and Chryston and across Scotland who are living with Fontan circulation and complex congenital heart disease; understands that international prevalence data suggest that between 300 and 400 individuals in Scotland currently live with it, with adult survival now up to 90%, resulting in a growing adult population at increasing risk of Fontan-associated complications and multi-organ disease; notes that complications can include progressive heart failure, arrhythmias, protein-losing enteropathy, plastic bronchitis, kidney dysfunction and liver disease, with up to 50% of adult Fontan patients developing clinically significant liver disease; understands that approximately 20 to 30% might ultimately require multi-organ transplantation such as heart, liver and/or lung transplants; believes that the increasing number of adults living with Fontan circulation represents a significant and evolving clinical need for NHS Scotland; notes with concern that Scotland currently lacks a dedicated national pathway for failing Fontan circulation and complex congenital heart disease requiring transplantation, resulting in some patients being referred outwith the country, most commonly to specialist centres in England; recognises the physical, emotional, financial and logistical burden that this can place on patients and families, including 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 these existing strengths provide a strong foundation for developing a coordinated Scottish Fontan service; further believes that there is a strategic opportunity to develop a national Scottish Fontan hub to provide structured lifelong surveillance, early identification of Fontan-associated complications, multidisciplinary assessment, risk stratification, transplant planning and coordination, and post-transplant shared care; considers that such a model could improve patient safety, equity of access, continuity of care and clinical outcomes, while supporting the principle of providing specialist care as close to home as clinically appropriate; notes the view that, in the context of any future changes to the organisation or provision of specialist health services in Scotland, particular consideration should be given to the arrangements required to ensure continued access to specialist transplant centres in England for patients from Scotland, where clinically appropriate, and notes the view that clear and sustainable cross-border pathways should form an important part of the long-term planning for Fontan and complex congenital heart disease services, and acknowledges the calls on the Scottish Government to engage with NHS Scotland, SACCS leadership, transplant centres, relevant clinical specialists and patients and families affected by Fontan circulation to undertake a feasibility assessment for the development of a national Fontan hub and structured complex congenital heart disease transplant pathway, including consideration of workforce planning, specialist training, infrastructure, cross-border arrangements, research and data collection, and the long-term sustainability of the service.