Creating communities of practice for epilepsy

March 26 is Purple Day, founded in 2008 by Cassidy Megan, who at that time was a young girl from Nova Scotia. Cassidy was motivated by her own experience living with epilepsy and wanted to get people talking about the disorder, lessen stigma and let others with epilepsy know they are not alone.

As paediatric neurologists with a focus in epilepsy, we are keenly aware of the impact this disorder has on the everyday lives of children and their families. Countless stories are shared with us here at SickKids about how our patients have been misunderstood and underserved in their communities. Patients and families are particularly frustrated when these situations happen in school or when engaging with the health care system.

Not many Ontarians know that over 90,000 people in this province live with epilepsy. While medications can be effective in controlling the symptoms of epilepsy, one-third of patients do not respond to drug therapy, leaving them with life-disabling seizures.  We also know that many children with epilepsy have significant concurrent disorders including mental health and neurodevelopmental disorders such as ADHD and autism.  All of these complexities conspire to increase social and educational needs which in turn create enormous challenges for families, schools and health-care providers.

We have days like Purple Day to help bridge an understanding of what it means to live with the impacts of this disorder and to continue to learn and share those things that enhance the quality of life for our patients and their families. In that spirit, this year we are launching a program called Project ECHO Ontario: Epilepsy Across the Lifespan.

Our new program endeavours to create communities of practice to expand awareness about how to better support children living with epilepsy within their communities. The Project ECHO model leverages video-conferencing technology to deliver care-based continuing professional education directly to frontline care providers in remotre, rural and underserved areas. It is proven to be an effective way to improve patient outcomes for diseases typically cared for by specialists, who are frequently based in city centres.

Project ECHO Ontario: Epilepsy Across the Lifespan brings together nine other comprehensive paediatric and adult epilepsy programs across the province and embraces an all-teach, all-learn information sharing approach to improving epilepsy care for children and youth. We intend to engage Ontario's paediatricians, family doctors, nurse practitioners, social workers, and many others who touch the lives of children living with epilepsy. By creating a partnership between community providers and epilepsy specialists, we will enrich and empower each other in practice, working collectively to enhance care for children and youth living with epilepsy.

If you are involved in the care of children who have epilepsy, please consider joining our community of practice or pass along this information to someone you know who could benefit. 

Dr. Elizabeth Donner and Dr. Carter Snead are Co-Leads of the Project ECHO Ontario: Epilepsy Across the Lifespan program.