N.W.T. neurology patients frustrated by long wait times for clinical care

Some N.W.T. patients needing neurological care have been facing long wait times for appointments even before the patient care contract that NWT Health and Social Services Authority (NTHSSA) had with the Alberta Neurologic Centre ended in April.

CBC News spoke with two patients waiting for care who both say they're frustrated. One of them even flew to another country for treatment on her own dime.

According to NTHSSA there are about 1,000 patients in the territory who are either receiving treatment from locum doctors or who have been referred for treatment. The NTHSSA did not provide a breakdown, before publication deadline, of how many are receiving treatment versus how many have been referred but are still waiting for treatment.

"It's hard to get any answers whatsoever," said Edna, a longtime Yellowknife resident who was diagnosed with multiple sclerosis in 1998. CBC News has changed her name for privacy reasons.

Edna saw a neurologist regularly until December 2022 but said she has not had a follow-up appointment since. 

"Last year everything changed. I thought it was due to the evacuation ... [that] I couldn't get a hold of anybody, general practitioner or neurologist," Edna said. 

Last year she was also in the middle of trying to start a new medication, but it never happened due to the lack of appointments, which left her uncertain on how to move forward.

While many neurological conditions are incurable, Edna said that those who have them still seek a good quality of life and want to be able to participate in family and social activities.

Shari Caudron, another patient from Hay River, has been dealing with mobility issues for three years. 

She saw a neurologist in Yellowknife in June 2023. But after lengthy wait times and further disappointment with NTHSSA, Caudron chose to travel 6,000 kilometres to Nicaragua in April 2024 at her own expense to get help. 

"I went there for two months and got physiotherapy, reflexology, and went from 90 per cent in pain to about 30 to 40 per cent pain," Caudron said. 

Caudron said she is still waiting to get an MRI and see a neurologist through the N.W.T. health care system. 

"I look forward to the day when I can walk again without having to use some sort of aid. And I will do that on my own more than likely [because] I just have no faith left [in NWT Health]," Caudron said.

ANC unexpectedly cancelled arrangement

CBC reached out to NTHSSA to ask about the delays. In an emailed response Krystal Pidborochynski, communications manager, said neurology services have historically been provided at Stanton Territorial Hospital through a mix of locum visiting providers and most recently through a contract with Alberta Neurologic Centre (ANC). 

But Pidborochynski said the ANC unexpectedly cancelled its arrangement with N.W.T. in April 2024. Since then, NTHSSA has continued to use locum-based physicians through the internal medicine program, which deals with complex and chronic conditions to provide neurology services. 

Patients on the wait list since before ANC's cancellation may have received care, remain on the list, or have been referred elsewhere, she said.

CBC News reached out to ANC to ask about the contract cancellation but did not hear back before deadline.

Pidborochynski also stated that urgent neurological care is available through hospitals in Edmonton. And NTHSSA has met with healthcare partners in Alberta to discuss N.W.T. patient pathways for access to non-urgent neurology services.

Edna said she's frustrated and feels that the N.W.T. health system needs to better consider the perspectives of patients. She said she is on a wait list for a referral but has no idea when she'll actually get an appointment.

"They won't tell you anything, they just say you're on a list ... Then I talked to my neurology clinic, and they said 'We got a referral but we have to get back to you' ... So nobody wants to commit to anything," Edna said.