Epilepsy and Ontario’s Healthcare System
Epilepsy affects over 95,000 people in Ontario, with 30% living with uncontrolled seizures, and 6000 new diagnoses every year. Epilepsy has significant effects on a person’s life including their mental health, employment, education and family.
Epilepsy also impacts Ontario’s healthcare system. Every year approximately 20,000 people make over 31,000 visits to Ontario Emergency Rooms with a main diagnosis of either epilepsy or unspecified seizures. Amongst those with a main diagnosis of epilepsy, 77% arrive by ambulance, over 70% have no other diagnosis during the visit, and 57% receive no medical intervention during their visit.
Many of these visits are unnecessary, contributing to Ontario’s Hallway Medicine crisis. Most epileptic seizures are not emergencies unless they last longer than 5 minutes, the person is injured, or they have another medical condition. In 2018, ESWO published a report called “Living with Epilepsy: Voices from the Community“, which is unique in Canada. It is the only report to document the community based needs and program preferences of 425 individuals and families living with epilepsy from Southwestern Ontario. This data was obtained through program evaluation and took 3 years to collect, however it empowered individuals living with epilepsy to tell us in their own voices about their experiences living with epilepsy. When asked, people living with epilepsy cited fear, needing reassurance, or not having had seizure first aid training as the main reasons for unnecessary Emergency Room visits.
Ontario’s Community Epilepsy Agencies
Ontario’s Community Epilepsy Agencies provide support to people with epilepsy and their families. A key component of this is epilepsy education, particularly how to manage the condition, reduce seizure frequency, and respond to seizures appropriately.
Living with Epilepsy: Voices from the Community data revealed that 86% of participants felt more confident about when a seizure is, and is not, a medical emergency following completion of a short information session. This is especially critical given that most program participants had been diagnosed nearly a decade before taking part in the program and were therefore unaware of when an ER visit would be considered necessary.
Despite their effectiveness, Ontario’s Community Epilepsy Agencies do not receive core government funding, instead relying on project grants and charitable fundraising. This means they are not delivering programs to as many people with epilepsy who could benefit from education and support.
Epilepsy Agencies and Ontario Health Teams
Epilepsy Ontario has proposed a provincial funding model to support the work of Ontario’s Community Epilepsy Agencies and submitted it to the Ministry of Health. Individual Community Epilepsy Agencies are also reaching out to their local Ontario Health Teams to begin the process of integrating into the new healthcare delivery model.
Community Epilepsy Agencies are well positioned to work with Ontario Health Teams given their local focus and experience providing community and health education services to people with epilepsy. Their approach supports several of the OHT Building Blocks, including facilitating engagement with the epilepsy patient community (Building Block #3) and providing Individualized Care planning, Health Literacy supports, Self-management planning and support, Proactive chronic-disease management, and as part of the system’s Coordination and Integration measures (Building Block #4).
The Clinic 2 Community epilepsy education program developed by ESWO, and adapted by several other community epilepsy agencies across Ontario, is modelled on the success of Alzheimer’s First Link program that has been funded and integrated into Ontario’s healthcare system in recent years. Our goal is to formalize our program delivery in a similar way through the emerging Ontario Health Team model.
How you can help!
We look forward to discussing with you how our Agency can work with your Ontario Health Team. Given the somewhat unusual position Ontario’s Community Epilepsy Agencies occupy, connected and contributing to the healthcare system without being formally integrated into it, we need your help to work through the process of formalizing this relationship and setting up a funding relationship to guarantee an optimal level of service delivery.