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Parent of child with rare form of epilepsy distressed over N.S. ER closures

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YARMOUTH, N.S. -

Kristen Hayes' son has a rare form of epilepsy called Dravet Syndrome, a condition that began with seizures when he was eight months old.

Sometimes, 12-year-old Lukas’ seizures spike a high fever and he needs help at a hospital.

“In those instances, we really feel like we need to be somewhere if there is that immediate help if necessary,” says Hayes.

Hayes lives close to the hospital in Yarmouth, N.S., but she says that twice in the past month, her son has been taken by ambulance to the emergency room there, only to be left waiting.

Four weeks ago, he had three seizures and a high fever, and was rushed to hospital. During the trip, Hayes says paramedics had to administer rescue medication on her son after he had a fourth seizure.

She says when the ambulance arrived, it was turned away because there wasn’t enough staff to care for him. Hayes says it was only with the advocacy of a paramedic that the hospital took him in.

Then last Friday, her son had a seizure at summer camp. The camp called 911, and again Lukas was taken to hospital. There, Hayes says she couldn't believe the wait.

“We went in and the paramedics had to stay with us for probably close to two hours before he was able to be put into a room to be seen by a doctor.”

Her greatest fear, is that Dravet Syndrome can result in what's known as Sudden Unexpected Death in Epilepsy (SUDEP).

She says the pandemic and being in a rural area are both no excuse for a system left strained and under-staffed.

“As a parent of a child with epilepsy, or any other health conditions, it's really hard to think that they might not receive the help that they need because it's not available nearby,” says Hayes.

Nova Scotia Health's website shows a long list of temporary emergency department closures throughout the province -- some overnight and others for several days.

The health authority says it comes down to lack of staff caused by COVID-19, summer vacation time, and vacancies.

“We continue to really focus our efforts on recruitment and retention so that we can really minimize any surface disruption across the zone and the province,” says Alyson Lamb, the executive director for the Western Zone.

The Western Zone’s medical director, Dr. Cheryl Pugh, says they often shift staff around to make sure areas are covered, and that paramedics and other services are part of the equation.

“There are always care providers available to provide care, they may not be immediately in your community but there is ability to access emergency services,” she says.

Lamb encourages Nova Scotians who need emergency medical help to call 911 or head to the nearest available emergency department.

In the meantime, Hayes has been speaking out about her experiences online in the hopes of spurring the province government to address the crisis.

“There has been an overload on the doctors and the nurses and the paramedics for a long time, but I do feel it’s getting worse,” says Hayes.

She says while medical staff have been working hard and doing everything they can, what’s needed is for government to provide the proper resources, to relieve the ongoing pressure.

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