Submission #14657

FACETS of Epilepsy Care in NH
www.nhfv.org
Sylvia Pelletier
Project Coordinator
NH Family Voices
Epilepsy
Children/youth with special healthcare needs
Phase III of the project Special Medical Services NH Family Voices Child Health Services CHaD Pediatric Neurology Phase IV of the project Special Medical Services NH Family Voices CHaD Pediatric Neurology
Phase III 2010-2013; Phase IV 2013-2016
Phase III 1. Increase the capacity across the state for children and youth with epilepsy or seizure disorders to insure that they receive quality health care and necessary family & community supports, in a system that is easy to use. 2. Increase parent and youth involvement in health care design to facilitate family-centered approaches and advancement of medical home components. 3. Increase provider knowledge and participation regarding standards of epilepsy care and enhanced communication procedures across all domains impacting children and youth with epilepsy / seizure disorders. Phase IV 1. Increase access to appropriate care and improve capacity of neurology – primary care providers to effectively identify and co-manage children & youth with epilepsy residing in medically underserved / rural areas of NH, through the use of a Consultation Model incorporating telehealth technology. 2. Develop standards and recommendations and create a model of a Transition Clinic for Adolescents as they progress from Pediatric Neurology to Adult Neurology, to be piloted at Dartmouth-Hitchcock. 3. Increase community capacity to understand epilepsy, reduce stigma and enhance partnerships via improved and accessible education awareness initiatives for families, primary care providers and community providers regarding current standards of care, diagnostic & treatment concerns.
Practice, community and hospital setting
Phase III Trainings: Regional trainings by Dr. Richard Morse for parents and community providers (11 sites); Training by Dr Richard Morse for Primary Care Providers at Pediatric Health Symposium (Nov 2011) & Dartmouth Pediatric Winter Conference (March 2013); Regional Coordinator Forums & Post Learning Session Forums; Early Educator / Day care provider trainings Clinical Site Work: Registry Development; Referral Management; Neuropsychological screening; Lunch & Learns for Providers Key improvements: % of CYE who are current with neurology follow up improved from 63.6% to 84.6 %; CYE who had visit who had complete care management plan improved from 22.2% to 62.5% Phase IV - N/A
Phase III Tools for success @ clinical site: Care coordinator and family support workers in clinical site worked with families to use calendars to track appts, referral coordinator set up appts and arranged transportation at time of referral; use of fax back form to communicate b/t providers. Tools for success with trainings: Schedule regionally, in evening for families & community based providers, if dinner hour, provide meal For providers, schedule on site, over lunch break, if so, include lunch Phase IV N/A