Author Archives: DHamel

Epilepsy guidelines should enhance care, empower patients: neurologist

April 9, 2015

By Deron Hamel

Dr. Carter Snead says the best possible long-term result from new provincial epilepsy-care guidelines would be for primary-care physicians, neurologists and patients to use the standards to enhance care of Ontarians with seizure disorders.

The Provincial Guidelines for the Management of Epilepsy in Adults and Children creates a framework for general practitioners to know at what point a patient experiencing symptoms related to epilepsy needs to be referred to a neurologist. The guidelines also help ensure appropriate medications are prescribed at appropriate times.

Adding to this, Snead, a neurologist at Toronto’s Hospital for Sick Children (SickKids), says the guidelines, which took effect in January, can also be used as a tool for people with epilepsy and their families to consult if they believe they’re not receiving the care they require.

Snead says the first step to success is for physicians – and patients – to understand their importance.

“The guidelines are nothing but words on paper unless we can operationalize them by getting the medical community in the province who cares for these patients to buy into them,” he tells Voices of Epilepsy.

“The other important issue here is that patients have access (to the guidelines) and they should utilize that access and ask their doctors about (the guidelines) if they think they’re not being treated appropriately. The guidelines should be used by the patients to empower their care.”

Prior to their creation there were no clinical guidelines for epilepsy management in Ontario. Until now, Ontario neurologists had followed guidelines established by the American Academy of Neurology. As a result, the consistency of epilepsy care has varied in the province.

Snead says he’s hopeful the guidelines will result in defined processes that will eliminate the grey areas that create inconsistencies, ensuring that people with epilepsy get timely access to the treatment they need.

“If (a physician) sees a patient with epilepsy, instantly they think, ‘Well, I can try to treat this patient, but I have these guidelines, so if I run into trouble I can refer this person to a district epilepsy centre,’ (where they can see a specialist),” Snead explains.

This is Part 2 of a two-part story. Click here to read Part 1.

Click here for information on the Provincial Guidelines for the Management of Epilepsy in Adults and Children.

Click here for information on the Provincial Strategy for Epilepsy Care.

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 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.com. You can also leave a comment below.

New clinical guidelines expected to help patients get the right care for epilepsy

April 2, 2015

By Deron Hamel

A prominent Toronto neurologist says the recent establishment of the Provincial Guidelines for the Management of Epilepsy in Adults and Children is an important step forward in creating consistent epilepsy care in Ontario.

Dr. Carter Snead, a neurologist at Toronto’s Hospital for Sick Children (SickKids), says the greatest overall changes he hopes come from the guidelines, which took effect in January, are improved patient flow between primary-care physicians and specialists as well as more efficient prescription of medications.

In short, the guidelines create a framework for general practitioners to know at what point a patient experiencing symptoms related to epilepsy needs to be referred to a neurologist, Snead says. The guidelines, he adds, also help ensure appropriate medications are prescribed at appropriate times.

A critical component of the guidelines is that they outline specifically when it is appropriate to refer patients for further evaluation – if they’re not, for example, responding well to medication. The new guidelines provide the information for physicians to know when to refer patients for other treatment options.

“I’ve met people in Ontario who were finally referred to an epileptologist after years, or even decades, of struggling to cope with uncontrolled seizures,” says Epilepsy Ontario information specialist Suzanne Nurse.

“Some people were offered a new drug treatment or another therapy to control their seizures, which in some cases has resulted in seizure freedom. These guidelines, which are available on the Epilepsy Ontario website, will help people with epilepsy across the province to access the right care.”

The new guidelines are the result of the Epilepsy Implementation Information Task Force, which was established by the Ministry of Health and Long-Term Care in June 2013.

The purpose of creating the guidelines was to improve access to epilepsy care across the continuum by co-ordinating resources and wait lists for epilepsy surgery across Ontario, and to establish standardized diagnostic and surgical protocols and develop supports for primary care providers of patients with epilepsy.

Snead says the task force and organized effort by the province to enhance care and access to epilepsy specialists for people with seizure disorders stands out – and it’s getting noticed.

“(This) is really unique to my experience anywhere in North America, in terms of a government initiated effort,” Snead says. “And this is now starting to have a ripple effect throughout Canada, because I am now getting calls from all over the country from advocates and neurologists about how they can establish the same kind of advocacy in their province that we have been successful at doing here.”

Click here for information on the Provincial Guidelines for the Management of Epilepsy in Adults and Children.

Click here for information on the Provincial Strategy for Epilepsy Care.

This is Part 1 of a two-part story. Part 2 will focus on long-term results and the importance of patient and physician advocacy of these new guidelines.

Schools, organizations, large and small, encouraged to show support on Purple Day

March 24, 2015

By Deron Hamel

Scotiabank branches in 116 Ontario communities will be raising awareness of epilepsy on Purple Day on March 26. The financial institute is the largest organization in the province to jump on board in support of the epilepsy community’s most celebrated awareness event.

This marks the first year Scotiabank has hosted Purple Day events at its branches, and it’s a move welcomed by Epilepsy Ontario, says the agency’s project manager Nikki Porter.

Throughout this week, participating Scotiabank branches have “community tables” where bank customers can make donations and pick up purple epilepsy awareness ribbons.

“Having a partner of this size allows us to raise awareness on a much larger scale,” Porter tells Voices of Epilepsy. “With tables set up at more than 200 Scotiabank branches, it is a wonderful show of support for people living with epilepsy.”

Scotiabank is not alone in showing support for those living with epilepsy. Many other businesses, organizations and schools across Ontario and Canada will host events and activities in recognition of Purple Day. For instance, employees and students may be encouraged to wear purple – the international colour of epilepsy awareness – and to initiate fundraisers.

Porter says the most important aspect of these events is the fact that they raise awareness of epilepsy, a condition affecting one in every 100 Canadians. Raising awareness of epilepsy and its prevalence helps break down preconceived notions about the condition and fosters inclusiveness in schools and workplaces, Porter says.

For the past few years, Deanna Sinasac has been a staunch advocate for epilepsy awareness. Every Purple Day, she organizes events at Amherstburg Public School in Amherstburg, Ont., where her daughter, Alexis, is a student.

Sinasac has baked purple cupcakes and raised money for the Epilepsy Support Centre. She also organizes school assemblies where Epilepsy Support Centre representatives speak with staff and students about seizure disorders. Many students and staff members also dress in purple clothing Purple Day.

“By having Purple Day at the school, it gets the whole school involved,” Sinasac says. “Hopefully, they can take what they learn out of the school and educate their parents and others.”

Porter, who has largely been involved with raising epilepsy awareness at the community level in the past, says the efforts people like Sinasac put into Purple Day have a significant impact.

“Students and employees with epilepsy get a sense of belonging and support when they see their (fellow students) and employers supporting them,” she says.

Purple Day was started in 2008 by Cassidy Megan, a then-nine-year-old Nova Scotia girl, who is living with epilepsy. Purple Day events are now held worldwide.

How neurosurgery gave Whitney Goulstone her life back

March 20, 2015

On the morning of Nov. 25, 2010, Whitney Goulstone had a simple partial seizure, shortly after waking up. She was having surgery later that day to address her epilepsy and didn’t know what to expect. Doctors told her the surgery would likely reduce her seizures but not eliminate them.

But since having the surgery, which was a resection of the parietal lobe to remove damaged tissue the size of a tangerine, the King City, Ont. resident has not had a single seizure.

“We were expecting a 20- to 60-per-cent reduction of seizures, and we got 100 per cent,” Goulstone happily tells Voices of Epilepsy.

Goulstone began having seizures at 13. The seizures gradually became worse. She was 19 when she suffered her first tonic-clonic seizure. It was at this time Goulstone was diagnosed with epilepsy.

For the next 12 years Goulstone took a variety of different medications which often didn’t work or would give her an allergic reaction. Then her neurologist recommended her for surgery after several tests were conducted.

There has been a major change in Goulstone’s life since her surgery, she says. The mother of two says one of the most measureable results of the surgery has been that the severe anxiety disorder she lived with for many years has gone away.

“As a mother, I was constantly worrying about when my next seizure was going to be; constantly worrying if I was going to hurt my children in any way; (worrying that) I would be encroaching on their safety,” she says. “I was constantly worrying … if I was a good enough mother. That was a huge problem for me.”

While surgery isn’t always an option for every person living with epilepsy, those affected by seizure disorders should always talk with their neurologist to see if they’re a candidate, Goulstone says. People having seizures, she adds, should “never be complacent” with their condition.

Goulstone says there are two aspects to her life so far: before Nov. 25, 2010, and after Nov. 25, 2010. The difference between these periods, she says, is “night and day.”

“Going into the surgery I was in a wheelchair. I was wearing a helmet. I couldn’t cook. I couldn’t be on my own. I couldn’t hold my children. I couldn’t give them a bath,” she says. “Now I am working, I can drive, I can do everything that (people) take for granted.

“It’s a different life.”

Writer: Deron Hamel

Editor’s Note: Critical Care Services Ontario recently released a document called Provincial Guidelines for the Management of Epilepsy in Adults and Children to support the flow of patients towards appropriate treatment for epilepsy. The document contains a set of guidelines to help with the diagnosis, treatment and referral practices from the moment of a patient’s first seizure. To view the guidelines, please click here.