Children, adults with eating disorders struggle to find care in New Brunswick

WARNING: This article contains details of an eating disorder.

Kerri Harris remembers her family life coming to a halt two years ago, when her 12-year-old daughter was diagnosed with anorexia nervosa, an eating disorder characterized by extreme restrictive eating. She was only in Grade 6 at the time.

Following a week of not eating or drinking anything, Harris said her daughter spent three weeks in the hospital.

“She pretty much couldn’t do anything at that point,” she said.

“She was just laying around. It’s very hard to watch your child not eat, and there’s nothing you can do or say to try to convince them.”

At first her daughter wouldn’t accept that she had an eating disorder.

“It was probably when she was admitted to the Regional Hospital here in Saint John that it finally might have kicked in that, ‘OK, I really do have an issue here,'” Harris said.

And when a child is hospitalized, she said, if they refuse to eat or take a meal supplement, the last resort is feeding them through a tube.

“On [her] first admission, she had a feeding tube.”

Harris sought care for her young daughter, only to learn that specialized treatment options for patients with eating disorders don’t exist in New Brunswick. 

“If I have a heart issue, I want to see a cardiologist. If I break my leg, I’m going to see an orthopedic surgeon,” she said. “My child has an eating disorder. I want to see a specialist who deals with eating disorders.”

Few options for help at home

In her search for care, Harris discovered there were only two psychologists in the entire province trained in what is known as “family-based treatment,” that involves coaching patients through their meals.

Both therapists, however, practised privately.

“They have to be seen weekly for family-based therapy and it would cost a fortune,” Harris said.

Emilie Lacroix, an assistant psychology professor and eating disorder researcher at the University of New Brunswick, said Harris’s experience trying to get help isn’t unique.

Lacroix completed her clinical internship in Halifax with Nova Scotia Health and has seen many New Brunswick patients with eating disorders seeking treatment at the IWK Health Centre.

“We don’t have specialized outpatient / inpatient treatment programs for adults or youth in the public system,” she said.

“What we’re seeing right now is people who are very sick. Even the ones who are ready and want treatment have to go to such great lengths to locate it. Even as a researcher, trying to find resources here has been a struggle.”​

That’s why she and her students have created a resource guide for people with eating disorders in an effort to raise awareness about the complex nature of these disorders.

While anorexia nervosa is one of the more commonly known disorders, but it is not the only one, Lacroix said.

Bulimia, for example, is “characterized by binge-eating episodes and then purging through compensatory behaviours like vomiting, laxative use [and] over exercise.” And there others.

And eating disorders happen to people of all genders, not just girls and women, Lacroix said.

‘They know there’s a gap’

After months of not being able to find public care for her daughter, on the advice of a friend Harris took her search to the IWK Garron Centre for child and Adolescent Mental Health in Halifax. 

Since then, her daughter has been hospitalized twice during an 18-month period that Harris describes as “hell.”

That’s why Harris is pushing for change. One of her top priorities is to see programs establish to train health-care professionals in New Brunswick to care for patients with eating disorders.

She has already met with provincial officials and says “they know there’s a gap.”

“But I don’t know if they’re really taking it seriously or not because here we are, 2023. I know of people that have tried in the past to get an eating disorder unit available here in New Brunswick, and 20 years later it’s still not here.”

In a statement, the Department of Health said it does offer a community-based pediatric eating disorder service for the Fredericton and Upper Valley area — but did not provide any details of what that is.

Spokesperson Sean Hatchard went on to say, “There are no provincially funded bed programs or services specifically for people with eating disorders in New Brunswick.”

He said people may receive treatment through addiction and mental health services provided by the health authorities, and the province supports people who need residential treatment programs offered outside of New Brunswick.

In a statement, Vitalite confirmed there are no specialized services for people with eating disorders in the province and said it is “evaluating best practices.”

Based on research by Lacroix’s team, there was an average of 60 hospitalizations per year, between 2003 and 2020, among people with eating disorders in New Brunswick.

And she says that is just “the very tip of an iceberg.”

According to Nova Scotia Health, between 2017 and 2023, there were 552 visits from New Brunswickers to outpatient clinics for eating disorders. Between 2019 and 2020, about a third of patients occupying inpatient beds were from New Brunswick.

“When you think about the level of desperation and sickness that someone needs to be experiencing, or that a family needs to be dealing with, in order to leave their home province to access care or be hospitalized —  what that speaks to is the people who are in the most severe distress” she said. 

When food is medication

Harris says the health-care professionals her family has dealt with in New Brunswick have the best of intentions, but they simply aren’t trained to help patients like her daughter.

“It’s very frustrating. I feel like I’m more knowledgeable on eating disorders than some health-care professionals,” she said. “Nurses — and it’s not their fault — are not knowledgeable on eating disorders.”

During some hospital stays, her daughter needed supervision during meals and Harris said she often received calls to go to the hospital and eat with her because the nurses didn’t have time.

“My daughter’s medication is food and food is her medicine, and they’re not willing to sit down and give her medicine. I think that’s pretty sad,” she said.

“I know they’re busy, but if they had a child there with diabetes, they’re not going to forget to give them insulin.”

Harris said the anxiety and stress of meal times for her daughter is so great someone has to be there to monitor and support her.

“They have an eating disorder voice in their head telling them not to do it, not to eat — try to get out of eating that,” she said. “So we’re trying to distract them to get their thoughts away from there. But also you’re wanting to make sure they’re not purging.”

Receiving ‘evidence-based care’

Harris says her daughter is getting better and regularly sees a pediatric psychologist at the Saint John Regional Hospital. 

While her psychologist is not formally certified in family-based therapy, Harris says she treats her daughter while consulting professionals at the IWK Health Centre, where all of the nurses are trained. 

Lacroix says in New Brunswick, the first hurdle is finding a family doctor who can refer patients to the right care. The next challenge is finding someone with the right training.

“More than likely someone might get supportive counselling,” Lacroix said, “which is really different from evidence-based treatment for eating disorders.”

She said there are “specific strategies that clinicians and families can use to help get someone with an eating disorder to recover and normalize their eating,” treatments that require supervision and training to be provided faithfully.

“Without implementing an evidence-based treatment for an eating disorder, it’s unlikely that someone will recover just with supportive therapy alone.”

Programs needed

Harris says her wish for everyone in the province struggling with an eating disorder is that they find a nurse like the one her family met when they arrived at the IWK.

“We had this wonderful nurse named Sue,” she said. “She was so knowledgeable, she’s been doing it for 20, 25 years. She would tell us exactly what to do, what to say. Sue didn’t have to think about it. She was just so comfortable with these kids.”

Harris is pushing to make that kind of guidance available to New Brunswick families like hers.

“It’s sad but I know nine people in my friend group whose children are dealing with eating disorders.”

She is calling for provincial funding for the Eating Disorder Council of New Brunswick, a non-profit organization established in 2004.

“I want to build on that. I want to be able to create programs for parents. I want to be able to have support for parents in this province. While I was going through this there was nothing available.”