Author Archives: DHamel

Action Day 2017 will focus on need for gov’t to translate evidence into practice

February 9, 2017

By Deron Hamel

Epilepsy Ontario is focusing this year’s Epilepsy Action Day at Queen’s Park on the need to standardize care for people with epilepsy across Ontario through dissemination and implementation of the province’s clinical epilepsy guidelines, as well as explaining what the guidelines mean for patients and doctors.

This year’s Epilepsy Action Day is Feb. 28.

While Epilepsy Ontario is commending the provincial government for supporting the development of Ontario’s new evidence-based guidelines for epilepsy care, the agency would like the province to also support a plan to help spread word about the guidelines and have the necessary training and support to implement the guidelines.

Epilepsy Ontario executive director Paul Raymond says that he is pleased that guidelines were finalized last year and hopes Epilepsy Action Day will result in the province working more closely with local health integration networks, community healthcare providers and people living with epilepsy to raise awareness of Ontario’s epilepsy guidelines.

“They’ve invested in the development of a comprehensive series of guidelines on epilepsy care, but what we need from (the government) now is more work around the knowledge translation piece at the community level,” Raymond says.

“The guidelines are great, but if community neurologists and family physicians don’t know they exist, that really won’t improve care.”

For example, one-third of people with epilepsy do not become seizure-free with medication alone but other treatments could result in improved seizure control or stop their seizures all together. Until recently there was no standardized approach to diagnosis and treatment. The new guidelines help health-care providers determine the next steps to improve the care of their patients.

“Things like that are really important to standardize care, the (doctors) need to know where to refer their patients and when to refer a patient to an epileptologist for an evaluation,” Raymond says. “This information needs to be communicated to physicians outside of the district and regional epilepsy centres.”

Epilepsy Ontario will also use Action Day to celebrate the provincial government’s excellent work in helping enhance quality of life for people with seizure disorders, as well as asking for continued funding to support the Ontario Brain Institute’s research.

EpLink, a provincial epilepsy research program funded by the Ontario Brain Institute, is conducting research to find new treatments to stop seizures and new strategies to improve quality of life.

Feb. 28 will be the sixth Epilepsy Action Day at Queen’s Park. The purpose of the event is for representatives from Epilepsy Ontario and other support agencies to meet with MPPs to discuss the needs of people living with seizure disorders and what role government can play to improve the quality of life for those living with the condition.

The last Epilepsy Action Day was in November 2015. For 2017, Epilepsy Ontario moved the date to late February to be closer to March, which is Epilepsy Awareness Month across Canada, Raymond says.

If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 1-800-294-0051, ext. 23, or e-mail deron(at)axiomnews.com. You can also leave a comment below.

Research into link between brain injury and epilepsy is giving Eileen Campbell hope

January 5, 2017

By Deron Hamel

When Eileen Campbell was 14 years old, she was involved in a car crash that resulted in a brain injury. After the accident, she developed epilepsy which caused her to have tonic-clonic seizures.

Now 49, Campbell has lived with the challenges epilepsy poses. She has three grown sons, each of whom has been supportive of her. She is outspoken when it comes to advocating for epilepsy awareness and has passed this on to her sons.

Campbell recalls how, many years ago, one of her sons had a girl in his class who had epilepsy. He explained the condition to his other classmates, something Campbell is proud of him for doing.

“He got them talking and explained (epilepsy) so it wasn’t something to be scared of,” Campbell says. “Like so many things in the world, it’s just ignorance that makes people scared or judgemental.”

Campbell has a saying: “If I could find the store that I could return epilepsy to, I would, because no one who has it wants it.” While there is no cure for epilepsy, research to learn more about the condition is something that’s making Campbell hopeful.

This past summer, Epilepsy Ontario entered into a formal partnership with EpLink, the Ontario Brain Institute’s (OBI’s) epilepsy research program, to study the link between brain trauma and the onset of epilepsy.

While it is understood that people who suffer a traumatic brain injury are at increased risk of developing epilepsy in subsequent years, the precise triggers as to why this happens are unknown.

Dr. Jorge Burneo, associate professor and researcher at Western University and co-director of EpLink, is leading an ongoing study to learn more about what causes epilepsy in people who have sustained brain injury.

Through support from the William Donald Willis Fund, Epilepsy Ontario’s contribution will allow Burneo to compile an extensive database of patients with brain injuries who went on to develop epilepsy.

“We want to see what kinds of epilepsy treatment were most responsive to various types of brain trauma,” Burneo says. “That way we can design better treatments for patients with brain trauma and maybe even prevent the onset of Epilepsy.”

Campbell says research into the relation between brain injury and epilepsy could bring new hope for herself and to others who have developed epilepsy as a result of a brain injury.

“There can never be too much investigation into brain injury,” she says. “To me, it’s fascinating that they’re finding and doing new things (thanks to research). There could be a cure around the corner for epilepsy.”

Donations to Epilepsy Ontario go a long way in helping people living with seizure disorders

December 8, 2016

By Deron Hamel

The story of how Epilepsy Ontario has been able to help a high-school student living with epilepsy underscores the value donations to the organization bring to people who have a seizure disorder.

Thirteen-year-old Ryan is living with epilepsy; he is one of the 30 per cent of people living with the condition who suffers from uncontrolled seizures. His condition has resulted in Ryan having special learning needs.

One month into the school year, Ryan’s resource learning teacher called his mother, Emily, to say the school could not accommodate Ryan’s needs.

Emily contacted Epilepsy Ontario’s director of information and client services, Suzanne Nurse, for help. Suzanne listened to Emily tell Ryan’s story. She informed Emily that she had the right to participate in the decision-making process for Ryan’s education and gave her the tools to help Emily explain epilepsy and Ryan’s specific learning needs to the school.

Each year Suzanne helps hundreds of people living with epilepsy and their families navigate systems to find information and supports they need. It is through funding that Epilepsy Ontario can provide services to people like Emily and Ryan.

“Thanks to the generosity of people who donate to Epilepsy Ontario, Emily is now encouraged with hope,” says Epilepsy Ontario executive director Paul Raymond.

“We can only continue helping people like Emily and Ryan through the generous support of donations.”
Donations Epilepsy Ontario receives help provide information about epilepsy as well as supports to people living with the condition and their families.

Donations also provide funding for advocacy. Epilepsy Ontario is working with all levels of government to improve support services and employment equity for people with epilepsy.

Click here to make a donation to support Epilepsy Ontario.

Advocate explains how people with severe epilepsy can claim disability tax credit

December 1, 2016

By Deron Hamel

People living with severe epilepsy not controlled by medications often find it challenging to obtain the disability tax credit (DTC) because the condition falls into a grey area. However, people with epilepsy and family members supporting people with the condition have avenues to take in order to receive the DTC.

The DTC is used to reduce the income tax people with disabilities or certain conditions pay. The tax credit is available for people with a taxable income who have severe and prolonged physical or psychological impairment. Family members supporting a person with a disability are also eligible. People must be approved by the Canada Revenue Agency (CRA) in order to receive the tax credit.

The purpose of the tax credit is to help people financially with the extra expenses they have as a result of their condition that are not covered by the medical expense tax credit.

Conditions like epilepsy, Alzheimer’s disease and multiple sclerosis do not always present noticeable symptoms, so they are often “hidden disabilities,” says Lembi Buchanan, a Victoria, B.C.-based advocate.

Because of this, it can be difficult to determine how much a disability is impairing a person’s life and at what point they should be able to benefit from the DTC.

Essentially, people with epilepsy must have severe and prolonged epilepsy, and people must have epilepsy that is not fully controlled with medications in order to apply for the DTC, Buchanan says.

“The problem with epilepsy is that there is not a mathematical model to measure how severely impaired someone is, but their physician (can help) make that determination by looking at the spectrum of their patients, and obviously, some people with epilepsy will have more severe (cases) than others,” Buchanan says.

“The Canada Revenue Agency has a tendency to interpret the Income Tax Act very narrowly and technically, so a lot of people have ended up going to tax court. But the judges generally interpret the tax act more broadly and show more compassion.”

Often, people with epilepsy and other episodic conditions do not get the tax credit unless they appeal a CRA decision to the Tax Court of Canada. If people believe they should be eligible for the DTC but are denied, there is an appeal process.

The person needs to first file a notice of objection. This can be a simple letter to the CRA stating the person objects to the decision made. If the CRA responds with a letter of determination that backs its decision, the person has 90 days to appeal to the Tax Court of Canada.

In one case where a person with epilepsy was denied the tax credit by the CRA but challenged the decision in court, the judge ruled that if someone is always vulnerable, due to the unpredictability of seizures, they should be able to access the tax credit, Buchanan notes.

“The chances of winning in the Tax Court of Canada are pretty good; the odds are better than when you’re appealing a decision with CRA,” she says.

Information on how to appeal a decision made by the Tax Court of Canada can be found on Buchanan’s website, fightingforfairness.ca.