Earlier this week, I got to preview CNF’s newest Access Child Neurology episodes about the transition of care. Featuring my colleagues from CNF’s Transition Expert Panel, Dr. Michael Sowell and Elizabeth
Stout, the video discusses the 8 Common Principles for Transition of Care, and examines why adhering to these principles is so difficult and suggests ways to improve the experience for clinicians, young adults, and their caregivers.
Dr. Sowell is a neurologist at the University of Louisville who has experience in both child and adult neurology, and improving the transition of care has been his life’s work. His conversation with Elizabeth, a young woman living with epilepsy since her teen years and is now studying to become a public health professional, provided great insight into the clinician and the young adult experience. It’s clear both individuals have deep empathy for caregivers, young adults, and the neurologists who treat them from their own personal and professional experiences.
As an original author of the consensus statement published in 2016 that provided the basis for the 8 Common Principles, it was great to hear that this framework still provides the basis for the partnership between clinicians and caregivers in beginning the transition of care process. However, it was disheartening to learn that so many of the barriers present in my entire career—e.g. a lack of time, financial support, and institutional buy-in—are still challenges for people wanting a smooth transition of care process. Dr. Sowell and Elizabeth both noted that this is a greater challenge for individuals with intellectual and developmental disabilities.
It is distressing and, unfortunately, something that seems all too common, to learn that helping a patient find an adult neurologist was one of the most difficult steps in the transition of care. I was encouraged to hear about the available resources for clinicians and families. I hope you will watch these two episodes and that they empower you to take steps to ensure a smooth transition of care for children with neurologic conditions.
–Ann H. Tilton, MD; CNF Board Member
Watch Part 1 + 2 below!
To see the full list of Transition of Care resources: