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Epilepsy strategy creates ‘once-in-a-lifetime opportunity’

June 22, 2012

One of the experts who helped develop the province’s epilepsy strategy is characterizing the proposal as a “once-in-a-lifetime opportunity” for people affected by the neurological disorder and physicians who treat patients with epilepsy.

Dr. Carter Snead, who heads the neurology department at Toronto’s Hospital for Sick Children (SickKids), says the one in 100 Ontarians living with epilepsy need a comprehensive strategy to address the challenges that come with treating the disorder.

If the proposal is approved by the Ministry of Health and Long-Term Care, people living with epilepsy would have access to an evidence-based system with equitable and timely access to treatment.

“(For) anybody who has seizures that would be a candidate for surgery or alternative therapy there (would be) an organized, orderly way to approach those patients, in terms of diagnosis and treatment,” says Snead.

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 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.

Currently, when a patient has a seizure, they go to an emergency room where they may or may not get referred to a family doctor, who may or may not treat them with the appropriate drugs, explains Snead.

“The ideal circumstance, if all this system was to be put into place, is that such a patient would be referred to the district epilepsy care centre, they would then be evaluated by the neurologist, who would then make recommendations to the referring doctor for appropriate medical treatment,” he says.

“If they fail that treatment, they would be sent back to that epileptologist at the district health-care centre and they would then be evaluated as to whether they would be a candidate for surgical treatment.”

If a person is found to be a candidate for surgery, they would then be referred to one of the regional care centres, which would be located in Toronto, Hamilton and London.

“Those centres are able to complete the diagnostic evaluation for epilepsy, plus do everything that a district epilepsy centre can do, in terms of providing advice and referring doctors,” explains Snead.

Snead notes that organizations advocating for people living with epilepsy, including Epilepsy Ontario, will have important roles to play within the strategy’s context.

Epilepsy advocacy agencies, he adds, will likely play an important part in the initiation and development of the epilepsy care centres. Ideally, he adds, when patients come to the district epilepsy care centres, they would be put into contact with the agency in their area.

“Their roles are going to be critical,” Snead says of epilepsy agencies.

“If (the ministry) decides to make this investment, my own view is that they probably will need some kind of advisory committee to help them do it, and I would see groups like Epilepsy Ontario being involved at the outset, in terms of advisory committees and being involved with these centres from the very beginning.”

To become involved, please contact OHTAC at OHTAC_Comments(at)hqontario.ca to share your thoughts about the need for a provincial epilepsy strategy.

If you have feedback on this story, please call the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca.

Writer: Deron Hamel

Epilepsy community encouraged to show support for proposed provincial strategy

June 21, 2012

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.

If you have feedback on this story, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca.

Writer: Deron Hamel

Epilepsy Ontario examines strategy delivery in a changing world

June 7, 2012

Looking ahead into fiscal year 2012-13, Epilepsy Ontario needs to examine ways to deliver its strategy in a world that’s changing for nonprofit organizations. This was Epilepsy Ontario executive committee president Elisa McFarlane’s message at the organization’s May 29 annual general meeting.

Of note, Epilepsy Ontario needs to be looking at four key trends — communication, transparency, governance and demand for services — that are affecting nonprofit organizations and think about ways to meet the demands that will come with these trends, she says.

With respect to communication, McFarlane says this function of a nonprofit organization can make or break it. While the Internet and social media haveplayed increasingly large roles in spreading organizations’ messages, it can be taxing on resources.  “What is clear is the potential to leverage the communication platform collaboratively across epilepsy agencies or indeed outside our sector, to make best use of our collective scarce resources.”

In terms of transparency, McFarlane says Epilepsy Ontario’s members, donors and other stakeholders are looking to have more influence on decision-making processes, which, she says, is a good thing because this helps Epilepsy Ontario stand out against other organizations that are also looking for funding.

The major step this year affecting Epilepsy Ontario’s governance will be to address its two-decades-old bylaws, which, McFarlane says, are “out of step, both with where regulation is taking us and effectiveness in delivering our mission.”

The bylaw review, she adds, will be discussed and developed collaboratively.

Epilepsy Ontario will also be using 2012-13 to look at the more effective ways to deliver services to clients with acceptable accountability to funders and donors. To accomplish this, the organization plans to invite affiliate and partner agencies to join in conversations about the structure of epilepsy services delivery.

Demand for services is a “two-edged sword,” says McFarlane. While government and some funders have cut back on funding to Epilepsy Ontario, they have placed more dollars in other areas beneficial to the epilepsy community. Recent funding for Ontario Brain Institute research programs and the provincial epilepsy strategy underscore this, she notes.

“Agencies will need to reframe how they organize themselves to be part of those initiatives or they risk missing out and finding it even tougher to deliver their services,” McFarlane says.

McFarlane says by harnessing their collective strengths, Epilepsy Ontario and its stakeholders can work together to continue to push the organization forward.

“(Epilepsy Ontario) and agencies each bring unique strengths to the table and can benefit by working together, presenting a unified front with a stronger, consistent message,” she says.

“Accordingly, (Epilepsy Ontario) will seek positive, collaborative relationships with the agencies.”

Writer: Deron Hamel

If you have feedback on this story, please call the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca.

‘It has been a year of change and productive initiative’

May 31, 2012
Epilepsy Ontario executive director Rozalyn Werner

Asked to summarize Epilepsy Ontario’s past year, executive director Rozalyn Werner-Arcé doesn’t hesitate in her response: “It has been a year of change and productive initiative.”

The executive director spoke at the organization’s May 29 annual general meeting (AGM), where she highlighted the successes and changes seen throughout 2011-12.

Werner-Arcé began by paying tribute to former executive director Dianna Findlay, who retired May 31, 2011. She applauded Findlay for being a dedicated champion in Ontario’s epilepsy community who “nurtured dozens of local epilepsy agencies, some of which took root and have grown to become strong, thriving organizations providing much-needed supports and services in their local communities.”

Werner-Arcé also commended Epilepsy Ontario’s affiliates and partner agencies, specifically the staff, board members and volunteers she has met since joining Epilepsy Ontario last year, for their passion for their work and for being “creative in developing and delivering supports and programs in their respective communities.”

Queen’s Park Action Day 2011 saw volunteers and staff from Epilepsy Ontario, epilepsy agencies and the Epilepsy Cure Initiative “enthusiastically” educate MPPs about issues people affected by epilepsy face.

“There was a very positive feeling about the day and that it would lead to even greater possibilities,” says Werner-Arcé.

The Provincial Epilepsy Care Strategy for Refractory Epilepsy was proposed in 2011, a move that is being characterized as having the potential to have a significant impact on Ontarians with epilepsy.

Implementation of the strategy would include a co-ordinated effort that would see the establishment of strategy standards and guidelines of care, training for doctors and other professionals, and the establishment of four regional epilepsy centres throughout the province, Werner-Arcé says.

Epilepsy Ontario is advocating to ensure that the meaningful supports and services that local epilepsy agencies provide are included in the strategy.  This includes things such as providing information and support upon diagnosis, connecting people with peers who have gone through similar experiences, or providing education about epilepsy in workplaces and schools, just to name a few.

Other successes seen during the past year include Summerfest, which provided 24 children and youths with a summer camp experience. The event was made possible through Epilepsy Ontario’s partnership with Camp Couchiching, Anita Allen of SickKids and Epilepsy Toronto.

One of the inspiring aspects of 2011-12 was the OBCL Epilepsy Scholarship, which provided 10 students each with a $1,000 scholarship.

Werner-Arcé says the essays written by the students illustrate how epilepsy is not controlling their lives.

“Indeed, they are in control and acknowledge that epilepsy is just one facet of their whole life,” she says, adding a thank-you to Osler Business Consulting Ltd. for its support of the scholarship program.

If you have any feedback on this story, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca.

Writer: Deron Hamel