Provincial strategy could create a stronger epilepsy community

July 20, 2012

Gerry Cockburn says one of the greatest possibilities that could stem from a provincial epilepsy strategy would be a stronger sense of community created amongst people living with epilepsy and medical professionals who treat the neurological disorder.

Cockburn, a 55-year-old retired educator, has had epilepsy since he was 10. He says one of the things lacking for many people living with epilepsy has long been a sense of connectivity.

The proposed provincial strategy, which was recently developed by epilepsy experts and is now under review by the Ministry of Health and Long-Term Care, would be a start to helping build a stronger community, says Cockburn, who lives in Milton.

If the proposal is approved by the ministry, people living with epilepsy would have access to an evidence-based system with equitable and timely access to treatment.

As part of the strategy, epilepsy care centres with state-of-the-art equipment would be established provincewide and would serve as primary access points for people living with epilepsy.

Through these facilities, patients would have access to epileptologists, psychologists and social workers.

These factors add up to more supports, both medically and interpersonally, says Cockburn.

“The big piece here is having community of people coming together that can help people who, after they have been diagnosed with epilepsy, are able to access the services,” he says.

“It’s not just neurologists, it’s not just social workers, it’s a community of people. And a system like this would also attract people like myself to try and help other people.”

A strongpoint of the strategy is that it not only includes medical practitioners but also social workers, psychologists and agencies that can help connect people with others who are living with epilepsy, says Cockburn.

A provincial strategy would also help new Canadians affected by the disorder make the connections within the epilepsy community they need.

Cockburn says it can be challenging for people affected by epilepsy who have lived in Ontario all their lives to find needed medical treatment and supports. But for people who move to the province from outside of Canada, searching for services can be even more challenging if they don’t know where to look.

“And (new Canadians) often don’t know the routes to follow for their children or (for themselves),” says Cockburn.

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Writer: Deron Hamel