Lauren Seabrook grew up in Yellowknife dealing with chronic illness.
She spent years as a patient in the territory’s medical system. Now she works in that system as an occupational therapist—but not for much longer.
Seabrook said she’s planning to leave the territory because her own medical needs have surpassed the level of care she’s able to receive as a N.W.T. resident.
Since February, she has relied on a feeding tube for nutrition. Seabrook said since then, it has become a constant challenge to access the care she needs, even as someone who works in the medical system and knows how to navigate it.
“This tube should be giving me back my life,” she said. “And I just feel like the past few months, my entire life is about this tube.”
The Northwest Territories government has an agreement with Alberta that allows N.W.T. residents to receive medical care in the province for services and specialized care that the territory doesn’t offer.
Seabrook said her case falls into a gap in the agreement. She said several health-care professionals, both in the N.W.T. and Alberta, have advised her to leave the territory. She is now getting ready to move to Calgary.
Seabrook said it’s too late to change her situation, but she believes there’s time to make sure no one else is told they have to leave their home to get care.
Medical needs
Seabrook’s medical needs are complex, and stem from a range of conditions, many of them rare.
Some of her conditions combined to restrict blood flow to her digestive system, which is also partly paralyzed.
She now feeds herself through a gastrojejunostomy tube, a feeding tube that bypasses her stomach to deliver nutrition directly to her small intestine and allows her to drain her stomach.
A feeding tube pump delivers a liquid nutrition formula to Lauren Seabrook’s feeding tube. (Graham Shishkov/CBC)
Seabrook has learned to manage her condition, but she said dealing with the health-care system— making more than 30 calls a day, advocating for herself with staff who don’t understand her needs — that has taken away her quality of life.
“Right now, it’s almost just like survival mode,” she said. “I am terrified that if my tube falls out or if there’s a complication, there’s no one here to help me.”
Accessing care
Seabrook can get care in Alberta if there is a problem with her tube or she needs it changed. However, she said she has been told the Alberta Home Nutrition Support Program, which ensures follow-up care, is not available to her because she is not an Alberta resident.
She said the program would provide her with supplies and support, like a point of contact available around the clock for questions and problems, rather than needing to go to the emergency room every time.
Lauren Seabrook was hospitalized at the Royal Alexandra Hospital in Edmonton this winter. Seabrook says she has access to medical care to get her tube replaced, but not ongoing case management. (Submitted by Lauren Seabrook)
Seabrook said if she was able to access the Alberta program as a N.W.T. resident, she would likely stay in the territory.
Dr. Katherine Kessler, the deputy territorial medical director, wrote in a statement to CBC that N.W.T. residents who need feeding tubes do have access to the same support, though it’s not through Alberta’s home nutrition program.
“These services are provided by a combination of N.W.T. health-care professionals, including dietitians, with ongoing case management by specialized physician services based in Alberta,” she wrote.
Seabrook said that response “sounds great on paper, but it’s not reality.”
Lauren Seabrook keeps an organized system at home for all the medical supplies she needs for her feeding tube, from syringes to electrolytes. (Sarah St-Pierre/CBC)
She said she has not had access to ongoing case management.
Kessler said N.W.T. residents concerned about their care are encouraged to speak with their health-care provider to work through their options.
Seabrook said her family doctor has advised her to move because she has exhausted the care offered in the N.W.T.
Seabrook provided CBC with a letter from her doctor confirming that “currently, there are no services or health care programs to provide her with the care and assistance that she is in current need of.”
Alberta Health Services did not respond to a request for comment by deadline.
Closing the gap
Seabrook has requested her MLA’s support to advocate for closing gaps in the system like the one she finds herself in.
“It’s heartbreaking that our health-care system is basically giving up on someone,” Range Lake MLA Kieron Testart said.
He said he has heard from people struggling to navigate finding care, but he has not yet seen someone fall through the cracks “this badly.”
Testart does not understand why accommodations can’t be made for her case, and that the system should allow for more flexibility when gaps are identified, like allowing access to Alberta’s program as a N.W.T. resident.
N.W.T. Health Minister Lesa Semmler’s office declined a request for an interview, citing privacy considerations.
Kieron Testart is the MLA for Range Lake. “It’s heartbreaking that our health-care system is basically giving up on someone,” he says. (Graham Shishkov/CBC)
Testart also said it’s regrettable that the territory will lose a healthcare worker when Seabrook leaves.
“Not only does she have to leave her home, but she’s also taking with her all that experience and support we need as Northerners to fix our failing healthcare system,” he said.
As an occupational therapist in Yellowknife, some of Seabrook’s patients are children who also have feeding tubes.
“Being told, ‘You have a tube, you’re too complex, you have to leave your home,’ I can’t imagine saying that to any of my patients,” she said.
Seabrook said she hopes the N.W.T. government will fix the system so other patients aren’t forced to leave.
While she feels the circumstances of her move are unfortunate, Seabrook said she’s looking forward to going back to living her life, to no longer feeling malnourished and exhausted so often once her access to resources improves.
“There is a lot more to my life than this tube,” she said.