While a provincial epilepsy strategy would help people affected by the neurological disorder access services in a timely manner, it would be especially beneficial to people living in northwestern Ontario, who often must travel long distances to receive treatment, says Trevor Lewis.
Lewis and his 18-year-old daughter Katie live in Thunder Bay. They are both living with epilepsy and are familiar with the challenges that come with needing access to specialists. And they are not alone. Lewis notes there are many people living in northern Ontario who have epilepsy that would benefit from the proposed strategy.
As part of the proposed strategy under review by the Ministry of Health and Long-Term Care, epilepsy care access centres would be established across Ontario, including one in the north.
Lewis says this would eliminate a significant challenge for people living with epilepsy in the region.
“There are no epileptologists here. Currently, there are a couple of neurologists in Thunder Bay (but) none of them have epilepsy as their specialty,” says Lewis, adding that while these neurologists are excellent doctors, without specific epilepsy training they can only do so much.
“There are gaping big holes here in northern Ontario. There is a huge need in Thunder Bay and across the whole northwest region,” says Lewis.
“It’s really good that they’re looking at putting some kind of regional centre like that somewhere in northern Ontario where there will be epileptologists, where there will be the advanced monitoring, and just a place where people know they can go to get help from people that have specialized education in that area.”
At the moment, there is access to specialists in southern Ontario via videoconferencing, but appointments are short and people often cannot fit in the time they need to discuss their medical issues, says Lewis, adding people need to see live doctors.
If the provincial epilepsy strategy 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 proposed strategy, epilepsy care centres with state-of-the-art equipment would be established provincewide and would serve as primary access points for people with epilepsy.
Through these facilities, patients would have access to epileptologists, psychologists and social workers. The sites would be equipped with the latest in epilepsy monitoring and imaging equipment.
Lewis and his daughter organized the Run for Epilepsy fundraiser in 2011 (keep reading Voices of Epilepsy to see a story on this in coming weeks), and they created a Facebook page to complement the event.
To illustrate the need for more services in the north, Lewis says there has been an outpour of engagement through the social networking site from people in the region who are living with epilepsy and seeking improved access to treatment.
“People are reaching out to us, and we’re just a father and daughter who ran in the name of epilepsy,” says Lewis.
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Writer: Deron Hamel