Calgary family frustrated by wait-lists, ER visits and short-term fixes in youth mental health system

Thisis Part 1of a five-part series looking at the state of youth mental healthin Calgary.

A Calgary mother says it breaks her heart to see her son go in and out of the ER in crisis while they wait for him to get the mental health care he needs.

From Halloween through to Nov.20, Ashley Bender took her 10-year-old son Eddie to the emergency room at the Alberta Children's Hospitalthree times.

WATCH | Why this mom continues to go to the ER for mental health help

Families and hospitals struggle with capacity for kids' mental health services

3 years ago

Duration 3:47

A Calgary mom says she's frustrated and exhausted, trying to get mental health care for her young son. Ashley Bender and her husband Ty are part of a growing wave of parents bringing their kids to Emergency at the Children's Hospital, looking for help.

On those days, Bender says her son, who is diagnosed with anxiety and ADHD,is not himself, and he can become angry and physical.

"He was doing things that were not Eddie. And I was like, 'he's not himself and he needs help,' and he said that he was going to hurt himself or hurt us, [and was] doing things that were hurting other people and myself," she said.

• Want to learn more about this project? On Tuesday, Jan. 11, CBC Calgary reporter Lucie Edwardson will answer your questions live about her five-part series Kids in Crisis. You can submit any questions you have hereor comment below.

"I just know my son, and I just know that he is kind and he is sweet and he just needed support and I was scared, so I took him to the ER."

Emergency youth mental health visits on the rise

The Benders are among an increasing number of Calgary families heading to emergency rooms with their kids and teens experiencing mental health issues.

According to the latest statistics provided by Alberta Health Services (AHS), the number of kids 18 and under visiting the Alberta Children's Hospital ER for mental health concerns has swelled by nearly 38 per cent from 1,725 between January and Sept 2018, to 2,378 during the same period in 2021.

The increase in the number of kids and teens seeking help for self-harm, which is counted separately, was even more stark. Alberta Children's Hospital reported a 135 per cent increase, with 180cases between Januaryand September 2018, and 423 during the same period in 2021. Youth substance use visits were also up, by 14per cent.

Eddie is waiting to be seen by a complex ADHD clinic he was referred to lastMay. His mom was told in November that he'd likely be waiting another year to be seen.

"When your child is struggling, one year or even a month seems like too long," she said.

AHS says says that on average, these kinds ofwait-lists are about 12 months, but theywork with families to try to provide quicker alternative programming within AHSor the community when possible.

Needs not met in ER

Until Eddie gets seen by the ADHDprogram, when things get really bad, his parents take him to the ER when they are afraid he will hurt himself or someone else.

These repeat visits to the ER oftenwith little tangible change arehard for Eddie to understand.

"I feel a bit angry because I know I've been here before,and I'm just like, 'Why do I keep ending up here? Why does this keep happening?' They've released me so many times saying they have a plan, but they really don't," he said.

Over the course of their three recent visits to the ER in October and November,very little was accomplished, Ashley says, and at times that made her feel hopeless.

"We sat there with a child who you love and adore and watch them slip and you're just in constant 'is he going to be OK? Is he going to make it out of bed today? Can I send him to school?'" she said.

"It came to a pointwhere I didn't have that confidence, and that was a pretty scary moment for me."

Followup care delayed

During their first visit on Halloween, Eddie and his parents spent eight hours in the ER. At the time, they were told they could spend up to seven days in the ER waiting for a mental health bed. They were ultimately discharged believingsomeonewould be in touchwithin 72 hours.

Dr. Stephen Freedman is a pediatric emergency medicine physician at the hospital and a professor in the Cumming School of Medicine at the University of Calgary. He and Dr. Amanda Newton from the University of Alberta are leading a project at ACH and at Edmonton's Stollery Children's Hospital to ensure children who come to the ER with mental health concerns but who aren't hospitalized receive follow up care. In a November interview, Freedman said he couldn't comment on an individual family's experience. He saidideally a child would be seen within 96 hours "although given our current volumes it's actually unfortunately being pushed out to about seven to ten days".

According to AHS, wait times for youth to be admitted to mental health beds from the ER fluctuates, but in October theaverage wait was 18 hours.It says there are 99 AHS youth mental health beds in Calgary, including acute and community mental health and addiction spaces in contracted facilities. Youth are sometimes sent to other facilities in the province when necessary.

At the Bender's second visit to the ER a week later,Eddie was referredto the Psychiatric Ambulatory Care (PAC) program, only to learn days later that Eddie wasn'teligible because he had a pediatrician in the community, Ashley says.

On theirthird visit another week later, Eddie ultimately underwent a medication change, which Ashley says has been very successful but the Bendersstill weren't given a concrete plan of action.

"That's all that's been done in all that time and all that trauma: status quo for us. Three and a half weeks, three ER visits, one medication change," said Ashley.

'I'm sorry'

Dr. Chris Wilkes, AHS's Calgary zone outpatient section chief for child and adolescent mental health and addictions, says he's sorry things aren't always going the way they should for families like Eddie's and they need to do better.

"Navigating the system is complex for us all, and I think it's especially complex for parents," he said.

"I am so sorry that people are getting frustrated and misdirected or miscommunicated with our intake system. We are trying our best to try and address that. We are trying to do better, but we've got limited resources."

He says the increase being seen now in the ER has aggravated an already stressed system.

"There hasn't been enough for a long time. It's often been under-resourced and under-serviced," he said.

"My only suggestion is just keep trying [to call] those numbers and come to the emergency room and we hopefully will provide the service that is needed for those children and adolescents and those families. But it's not easy. I'm sorry."

'Square 1'

Ashley says her familyknows there is good programming available in the city for Eddie through AHS, because they've participated in the past.

After a Christmas holiday visit to the ER last year, Eddie was referred to the Children's Day Treatment Program, and in January he began treatment.

"During that time, he had incredible access to nurses and psychiatrists, and he basically went to school at the Children's Hospital, where they could keep an eye on him and make sure that he's safe, " she said. "Then as they try medication, they can see that in real time how and if it's helping."

But since Eddie completedthe program in May, they no longer haveaccess to that team or those doctors, Ashley says.

"It stops and we have to start at Square 1 again. So in the meantime, when things get really bad, we have to access the ER," she said.

Eddie was recently seen by the Child and Adolescent Psychiatry Services (CAPS) team, and the family has had one initial meeting so far.

"But it's short term," said Ashely. "It's supposed to be just a quick bridge service."

Ultimately the Benders continue to wait for their spot in the complex ADHD clinic to open up.

"I've been on so many meds andantidepressants, I just don't care anymore,"said Eddie."My family loves me. They care for me 100 per cent. But I don't get to live a normal life. Almost nobody gets to live a normal life."

Ashley says what would really help parents is help understanding the system and the resources available to them.

"When I look back after 3 years, I didn't know what options were available, and it was so hard to navigate the system, and I'm still navigating. I'm still figuring these things out," she said.

"Ifwe had somebody to help you and guide you through the process, what a difference that would have made."

If you would like to share your experiences with Calgary's youth mental health system please email: calgarynewstips@cbc.ca

If you or someone you love is struggling, AHS recommends the following resources:

• Call the Distress Centre at403-266-HELP (4357)
• CallConnecTeen at403-264-TEEN or text587-333-2724
• Call theKids Help Phoneat 1-800-668-6868 or text CONNECT to 686868.
• Bullying Helplineat1-888-456-2323
• Call the Mental Health Helpline at 1-877-303-2642 or the addiction line at 1-866-332-2322.
• Visit theHelp in Tough Timeswebsite for more resources.
• If in crisis call 911 or visit the closest emergency department.