23. Caring for Children with Medical Complexity: Navigating Choppy Waters Across the Atlantic

Behind so many children with complex medical needs there is an often invisible support system. The people we're talking about are family members of children with medical complexity. Pediatric neurodisability specialist Helen Leonard shares her experience navigating the healthcare system with her son, Matthew. Health systems are generally better at handling single-issue fixable conditions, such as heart attacks or trauma, but fall short for people with complex needs. If we want to truly deliver coordinated and integrated care, we have to support the entire family, because caring for the caregiver is caring for the child.References:Leonard H. Personal health budgets—a view from the other side. The BMJ Opinion. 2010. Leonard H. Children with complex health needs and personal health budgets. Archives of Disease in Childhood 105(3):p 211-213, March 2020. | DOI: 10.1136/archdischild-2019-317092Allshouse C, Comeau M, Rodgers R, Wells N. Families of Children With Medical Complexity: A View From the Front Lines. Pediatrics. 2018;141(suppl 3):S195-S201. doi:10.1542/peds.2017-1284D.De Iongh A, Redding D, Leonard H. New personalised care plan for the NHS. BMJ. 2019;364:l470. doi:10.1136/bmj.l470.Holmes C, Kimbrough T, Davis T, Samuel A, Smyth F. Counseling Families with Children with Medical Complexity. The Family Journal: Counseling and Therapy for Couples and Families. 2023;31(1):157-164. doi:10.1177/10664807221124134.Holmes C, Zeleke W, Sampath S, Kimbrough T. “Hanging on by a Thread”: The Lived Experience of Parents of Children with Medical Complexity. Children. 2024;11(10):1258. doi:10.3390/children11101258.Houlihan BV, Coleman C, Kuo DZ, Plant B, Comeau M. What Families of Children With Medical Complexity Say They Need: Humanism in Care Delivery Change. Pediatrics. 2024. doi:10.1542/peds.2023-063424F.Huth K, Montgomery N, Berry JG, Coller RJ, Houlihan B, Toussaint K, Stringfellow I, Comeau M. What Families of Children With Medical Complexity Say About Their Family Well-Being. Pediatrics. 2025;156(6):e2025071939. doi:10.1542/peds.2025-071939.Teicher J, Moore C, Esser K, Weiser N, Arje D, Cohen E, Orkin J. The Experience of Parental Caregiving for Children With Medical Complexity. Clinical Pediatrics. 2023;62(6):633-644. doi:10.1177/00099228221142102.Zurynski Y, Hutchinson K, Kang Y, Vizheh M, de Groot A. Family Experiences of Integrated Care for Children With Medical Complexity: A Scoping Review. Child: Care, Health and Development. 2025.