FACETS (Facilitating Access to Care for Epilepsy and Transition Success) is a federally funded grant project, focused on improving care for children and youth with epilepsy. Activities under this grant have been occurring in NH since 2007. Since 2010, these efforts have been led by NHDHHS, Special Medical Services, in collaboration with NH Family Voices, and Dartmouth Hitchcock Pediatric Neurology.
Goals of the activities have been to:
• Increase awareness of signs and symptoms of epilepsy and seizure disorders;
• Improve family access to services;
• Improve the delivery and coordination of services;
• Increase provider knowledge and skill to co-manage children and youth with epilepsy;
• Increase the ability of adolescents to take responsibility for their own healthcare needs;
• Enhance family-professional partnerships
Grant activities began with a comprehensive needs assessment, gathering information from neurologists, primary care providers, and community based care coordinators, school providers, and family members. Did families have the access to specialty care they needed? Was the system set up in a way that was easy to use? Did everyone have the information they needed to support children and youth with epilepsy?
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Following the needs assessment families remained key members of the project. The voices of parents, caregivers and youth were consistently present. Family members were critical members of the project team participating in focus groups, trainings and in quality improvement efforts at practice sites. Parents at our clinical improvement site, Child Health Services, shared their experiences as parents of children who have experienced seizures. Families identified resources, tools and provided feedback on improvement activities, to be sure that changes were really enhancements. Resources by and for parents and caregivers can be found here.
Youth members also advocated for information and identified challenges posed by the management of their epilepsy at school, home and in the community. Particularly as they sought to take more control of their health care. As a direct result, the newest phase of this grant includes activities focused on health care transition from pediatric neurology to adult neurology and skills building for youth. Resources developed by and for youth can be found here.
Providers working in daycare and school settings also expressed a need for information, and assistance in supporting the health care needs of their students with epilepsy. A consistent theme, regardless of audience, was a need for increased communication and coordination of information. Resources to support school health and other community providers can be found here.
Specialty care providers expressed a desire to work more closely with primary care providers co-managing their shared children and youth with epilepsy. Primary care providers identified a need for up to date information and assistance with managing complex patients. Work in primary care practices focused on communication tools and processes. “Lunch and Learn” trainings were offered improving information provided by practices to families. In the newest phase of the project, the use of technology will be explored to improve access for families, education and consultation for providers. Resources developed by and for providers can be found here.
For additional information about FACETS NH, contact:
Elizabeth Collins, RN-BC, MS, Administrator/
CSHCN Director, Special Medical Services
Phone: (603) 271-8181
Sylvia Pelletier, Project Coordinator,
NH Family Voices
Phone: (603) 271-4525
♦ FACETS is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number H98MC262580202 for $400.000. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.