Saskatchewan is the only province in Canada without a dedicated seizure unit and with wait times up to two years, doctors and patients are speaking out hoping the province will finally listen.
“We only have two beds, that’s very difficult, we have a large population to serve [and] the wait time for these two beds is approximately two years,” said Dr. Jose Tellez, a professor at the University of Saskatchewan division of neurology.
Becky Findlay, from Regina, was diagnosed with a type of epilepsy known as focal seizures four years ago. Non-responsive to medication, the busy mom of two needs further testing to see if she is a candidate for surgery.
“I’ve already been waiting a year and there’s no word as to when this stage will be and then the surgery, if I qualified, wouldn’t be until at least another year after that,” Findlay said.
She isn’t able to work or drive and the longer she waits, the more seizures she’ll have. With each seizure, she loses a piece of her memory.
“One of the special moments is hearing your child say ‘mommy’ or ‘I love you’ and I don’t remember any of that with my son,” Findlay said. “With my daughter, I don’t remember giving birth to her or those first few months.”
READ MORE: Living with Epilepsy
She’s had to resort to the help of friends and family and putting constant reminders on her phone to get through the day.
“There are many weeks and months where my wife and I shed a lot of tears,” her dad, John Nelson, said.
“When you’re sitting in and the [doctor is] talking about internal probes to determine if the seizures are coming from the right side, the left side or both sides and Becky asks, ‘What if I stay on the medication?’ and to hear the doctor say, ‘If you stay on the medication, by the time you’re 50 you probably wont have a memory.’ She’s 31-years-old, hearing that sort of thing, it’s devastating and you go from being emotional to being angry.”
In a statement Saskatchewan’s Minister of Health, Jim Reiter said:
“I have asked the SHA to explore the possibility of a dedicated telemetry unit. Plans for the Jim Pattison Children’s Hospital include an epilepsy monitoring unit for pediatric epilepsy patients. This will add to the two existing dedicated telemetry beds at the Royal University Hospital. According to our reports, there is a two year wait list for access to telemetry beds for epilepsy patients requiring highly specialized assessment. However a factor in this wait time is also due to the number of practitioners available. In July 2018, the SHA recruited a second epileptologist. This is anticipated to reduce wait times.”
Still, Tellez says more beds are needed now to help the nearly 200 patients on the wait list.
“If we have four beds that will improve the wait times for patients and we would be able to investigate other patients that, right now, don’t have any possibility because we are really dedicating the beds for surgical candidates,” Tellez said.
“Then we will open the door to other patients who have been waiting, or they come to the emergency room with seizures and we can’t investigate them.”
Even though there are two beds, Tellez says they aren’t in the same room, or even the same floor.
“Sometimes [patients] have to see difficult situations in front of them, like a patient who is coming from surgery, or someone who had a cardiac arrest,” Tellez said. “It is not ideal and I think we would like to have the same standard of care and the same model as other Canadian provinces.”
Until that happens, Findlay says she can’t help but to feel like her life is passing her by.
“It just feels like they’re not listening. They don’t quite understand how it’s affecting people,” Findlay said.
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