During the 2012 Epilepsy Action Day at Queen’s Park, Ontario’s epilepsy support agencies, along with people living with seizure disorders and their families, asked MPPs for a provincial epilepsy strategy to address their needs. At the 2013 Action Day on Sept. 24, the same people were thanking government officials for launching the Epilepsy Strategy Implementation Task Force in spring.
This demonstrates what’s possible through engagement with government decision-makers, and it was one of the many ingredients that made the event an “amazing day,” says Epilepsy Ontario executive director Rozalyn Werner-Arcé.
“It’s quite amazing when you think that one year ago we were at Queen’s Park and we were asking for a strategy and here we are one year later, thanking them for the strategy,” she says.
During the many meetings, teams of people representing the epilepsy community held with the province’s decision-makers, this year’s Epilepsy Action Day focused on discussing the social burden of epilepsy as well as what needs to be done to improve epilepsy awareness through education.
Ensuring access to all treatments and finding a solution to the serious problem of drug shortages were among other major issues discussed with political leaders.
What was especially noteworthy about the day was the fact that the engagement level was deeper than ever, Werner-Arcé says.
MPPs and other leaders were interested in the discussions and asked “really good” questions, provided valuable feedback and, perhaps most importantly, offered ways they could help, she adds.
For example, some MPPs offered to introduce epilepsy agencies to important leaders, while others offered to spearhead initiatives or to provide assistance in decision-making processes.
“Epilepsy Action Day at Queen’s Park has come a long way in the last four years,” Werner-Arcé says. “One of the things we heard (from MPPs) was, ‘Keep doing what you’re doing.’ ”
Looking ahead, Werner-Arcé says increased recognition of the importance of community-based supports and services for people with epilepsy and their families, realized through funding of patient education and self-management programs offered by epilepsy support agencies, would be the best possible long-term outcome from this year’s Epilepsy Action Day at Queen’s Park.
The day concluded with a reception attended by MPPs, government officials and stakeholders. Health and Long-Term Care Minister Deb Matthews, Progressive Conservative health critic Christine Elliott and NDP deputy house leader Cindy Forster spoke at the event.
Writer: Deron Hamel
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