By Deron Hamel
Epilepsy Ontario is embarking on an outreach strategy with first responders to build relationships between epilepsy support agencies and police, firefighters and paramedic teams to create training opportunities and encourage appropriate responses to people who may have had a seizure.
The first step in this process is gathering people’s stories – both positive and negative – to generate a big picture of people’s experience with first responders after having a seizure.
Epilepsy Ontario project manager Nikki Porter, who is spearheading the initiative, says it’s crucial to hear as many people’s stories as possible to identify what needs improvement, what is working well and to commend first responders who are providing people with positive experiences.
“These stories will help us see what some of the consistent issues people are having,” Porter says. “This will give us a larger picture (of people’s experiences) and that will help us identify training opportunities and topics to discuss with first responders.”
One topic Porter says needs to be clarified with first responders is the fact that there are several different types of seizures which look different and can depend on the person. First responders need to know how to address each type of seizure.
“Like the general public, first responders may not know how to identify different seizure types or respond appropriately,” she says.
Marcel Allen shared his story as part of the project.
On Aug. 8, 2010, Allen, an off-duty officer with the Ottawa Police Service (OPS), was driving his children to their home in Pembroke, Ont. when he had a seizure in front of Parliament Hill. He characterizes the events that would unfold as a “turning point” in his life.
Shortly after Allen’s seizure ended that day, a nearby RCMP officer responded, followed by OPS officers. The RCMP officer grabbed Allen’s arm at one point. Allen, now in a “fight or flight” postictal state, began to struggle, prompting an OPS officer, a colleague of his, to Taser him.
While the incident garnered some negative media coverage, Allen says he has never had resentment towards his colleague for using the Taser; what he wants to see is change in how police address situations involving people who’ve had seizures.
“I was reluctant to speak about the Taser incident initially because I understood the position that the officers had to take,” he says. “While I may disagree with their approach, I believe they were acting in my best interest.”
But, he says, not understanding how to properly react to a person having a seizure makes it essential for police and other first responders to have appropriate training when caring for people who’ve just had a seizure.
Allen has a message for anyone with a seizure disorder who has had a positive or negative experience with a first-response team after suffering a seizure.
“Share your story with your local epilepsy organization,” he says. “Those that have epilepsy do suffer in silence. Embarrassment, stigma, or a simple inability to articulate their concerns – for a variety of reasons – are some of the reasons why those with epilepsy can’t report some horrific occurrences.”
To share a story about your experience with first responders, please contact Porter at Nikki(at)epilepsyontario.org, or click here to find your local epilepsy support agency.
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