Epilepsy Ontario is urging the epilepsy community to help end disparities in epilepsy care in the province.
Many people living with uncontrolled seizures in Ontario do not get access to the medical services they require.
To address the problem and help people access services, a panel of epilepsy experts, in conjunction with the Ontario Health Technology Advisory Committee (OHTAC), have developed a strategy that will be submitted to the Ministry of Health and Long-Term Care for consideration.
The aim of the current proposed epilepsy-care strategy is to provide people living with the neurological condition better access to care and treatment. This is especially important given that one in 100 Ontarians is living with epilepsy, says neurologist Dr. Jorge Burneo.
Of this one per cent of Ontarians, 30 per cent have epilepsy that is not responsive to medication. It’s these individuals the strategy is especially aimed at helping.
The proposed epilepsy strategy recommends standardizing and co-ordinating epilepsy care across the entire province and increasing capacity at epilepsy centres in Ontario.
Epilepsy Ontario is urging the epilepsy community to contact the Ontario Health Technology Advisory Committee (OHTAC) to tell their story of living with the neurological disorder and explain how the provincial epilepsy strategy would be an important step in providing improved access to services.
OHTAC, a provincially-funded agency advising the Ministry of Health and Long-Term Care about how to best utilize funds, is using evidence-based analyses as a benchmark. OHTAC is now collecting public comment which will be an important component in the final report that goes to the Ministry of Health.
“People need to write in and tell OHTAC what a difference this strategy is going to make in the quality of life for people living with epilepsy,” says Epilepsy Ontario’s executive director Rozalyn Werner-Arcé.
Werner-Arcé adds that Epilepsy Ontario is strongly supporting a provincial epilepsy-care strategy because there’s a significant need for co-ordinated care and better access to diagnosis and treatments. Epilepsy agencies are collaborating with health care professionals who specialize in epilepsy to develop a comprehensive strategy that will meet both the medical and non-medical needs of people with epilepsy in Ontario.
Epilepsy agencies provide important supports and services for people living with the neurological condition: they help people to better understand the disorder after receiving their diagnosis; they provide strategies to help people live with epilepsy; they provide support to parents, other caregivers and employers; and they connect people with others who are also living with epilepsy.
As part of the strategy, three major hospitals with epilepsy expertise — Toronto’s Hospital for Sick Children (SickKids), Toronto Western Hospital and London Health Sciences Centre — have been selected as access points.
Adding to this, the strategy’s proponents are hoping to establish district epilepsy-care centres with state-of-the-art equipment in Hamilton, Ottawa, Kingston and one in northern Ontario, which will serve as primary access points.
“The idea is that patients will be referred by their neurologist to any of those district epilepsy centres and the initial work will be made in a timely manner,” explains Burneo.
“If the case is complicated, they will be referred to one of the major epilepsy centres, either in Toronto or London.
“Once the ministry recognizes that there is disparity in the way epilepsy is being treated in the province, maybe they will support this.”
To become involved, please contact OHTAC at OHTAC_Comments(at)hqontario.ca to share your thoughts about the need for a provincial epilepsy strategy.
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Writer: Deron Hamel