Canada's first inhospital pain program turns girl's life around
By Megan Jones
Staci Berman has been in pain for two years. It started at a basketball tournament in April of 2014. As Staci, then 11 years old, ran up the court with the ball, she was pushed from behind. All of her weight went to her right leg, and she suddenly felt a jolt—a harsh, shooting pain that travelled up her leg to her hip.
She and her family soon realized that the injury wasn’t a typical one. In the weeks that followed, the Thornhill pre-teen’s pain only worsened, and three months later, the discomfort had become unbearable.
Over the next year and a half, Staci and her mother, Shelley Berman, tried everything: x-rays, an MRI, acupuncture, osteopathy, massage therapy. Each expert seemed to have a different theory about what caused the pain. “Nothing was really helping me at all,” Staci says. “And I kept getting worse.”
That first year, Staci missed 23 days of school. Once an active student, she was forced to give up the extracurricular activities she loved: hockey, volleyball, badminton, hip-hop dancing. Her friendships began to suffer and she became depressed.
“Every time a treatment didn’t work I would become more negative,” Staci says. “I cried a lot…I started to lose hope for recovery.”
There were some moments of hopefulness. Staci attended a pediatric pain management group at the Hospital for Sick Children in Toronto. The program helped her to feel less isolated by introducing her to others in her position. It also taught her valuable coping skills. Still, her pain was relentless.
By July, 2015, the family was desperate. “We felt that nothing in the system could help us,” Shelley says. “Staci didn’t want any more appointments. She was refusing to see any more doctors.”
Shelley had heard about a children’s hospital in Philadelphia with a highly reputable pediatric pain program. Defeated, stressed and exhausted, she began preparing to send her child to the U.S. for treatment. Then, she got a phone call from SickKids.
The doctors there told Shelley that Staci was eligible for a new initiative at Holland Bloorview, the Get Up and Go Persistent Pain Program. That same day, Staci and her mother travelled to SickKids to meet with Lori Palozzi, a nurse practitioner who helped develop Get Up and Go.
Immediately, the pair knew it was something they wanted to try. The program sounded holistic, Shelley says, and she was impressed by the clinicians' passion for their work.
“As Lori told me about the program, it gave me hope,” Staci says. “I knew it wouldn't get rid of my pain entirely, but I felt like maybe I could conquer it.” By November 2015, Staci was admitted as a patient.
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The Get Up and Go Persistent Pain service was launched in September 2015, and is the first inpatient pain rehabilitation program for youth in Canada. The initiative, a partnership between SickKids and Holland Bloorview, treats children between the ages of 12 and 18 who have chronic pain or pain-related disabilities.
Patients are referred by their Ontario pain clinics, and are typically children like Staci, whose discomfort interferes with sleep, relationships and school attendance.
Get Up and Go, which is funded through the Ministry of Health and Long-Term Care, lasts four weeks. During the first two, children live at Holland Bloorview as inpatients. They then attend a day program for the remaining half. Two kids are admitted in each session and, so far, 16 patients have been treated.
Led by a staff of nine, Get Up and Go takes a multidisciplinary approach to pain management—it draws on psychology, psychiatry, social work, therapeutic recreation, occupational therapy and physiotherapy.
This well roundedness, says nurse practitioner Lori, is part of what makes it effective. “Chronic pain is a complex problem that requires a long-term solution,” she says. “There’s no easy fix.”
At Get Up and Go, things are highly structured, and that’s deliberate, Lori says.
Due to their pain, many youth miss school, give up the activities they love and struggle to sleep. Over time this creates a vicious cycle: little sleep and exercise wear the body down and intensify the pain, which leads children to shut down further. “The less you think you are capable of, the less you do,” says Get Up and Go physiotherapist Lisa Engle.
“We know that when a child’s function is increased, their pain will eventually improve,” Lori says.
In hospital, the day begins at 7 a.m. when patients get up for breakfast. Children go to Holland Bloorview’s onsite school, work out with a physiotherapist in the gym or pool, go to counselling, and participate in other kinds of recreation. Visiting hours are between 4 and 6 p.m. By 9, all electronics are shut off to foster healthy sleep habits. An hour later, it’s lights out.
In addition to building their endurance and strength through physical therapy, youth learn techniques to cope with pain like deep breathing, visualization and mindfulness meditation. They also learn how to pace and organize their days to conserve energy, and to keep a sleep diary that promotes a regular bedtime and wake-up.
Visiting hours are limited to 4 to 6 p.m. each day. This, too, was done on purpose. Lori says that parents often inadvertently contribute to habits that prolong their children’s pain—letting them stay home from school, for example, or allowing them to dwell on their discomfort, rather than reframing the discussion to help them manage.
“They may be excessively emotional in response to their child’s pain and support the child’s tendency to avoid tasks and responsibilities at home,” Lori says. “The biggest challenge for families in our program is to foster independence in their child.”
Parents attend two group sessions a week where they discuss the same topics their kids are learning about: sleep, coping techniques and what they can do to help or hinder their child. For example, one thing they have to avoid is jumping in to do everything for their child at home.
Parents also learn how their child’s pain can trigger their own feelings—such as irritability, anger and anxiety—and how to take care of themselves.
Parents receive individual counselling with a social worker, something that Shelley says she found incredibly valuable. She says that often, parents become so concerned with their children’s care, they forget that they also have needs.
“The sessions were a time for my counsellor to answer any questions that I had about how I felt personally,” she says. “That for me was so important. Each time I left her office, I wanted to hug her.”
While the program is still in its infancy, Lori says that patients and parents have provided mostly positive feedback during exit surveys. In the future, she hopes the program will continue to expand. She’d also like to increase the staff’s ability to track children’s progress through their pain clinics after they’re discharged. (While Get Up and Go helps kids to form a discharge plan, longer-term follow ups aren’t currently part of their mandate.)
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Five months after completing Get Up and Go, Staci says she still feels the effects. As she progressed through her therapy, the pre-teen felt herself get stronger while her abilities improved—and that hasn’t gone away. Today, she’s back to playing volleyball and basketball, as well as running cross-country. She still feels pain, but while it used to be constant, these days her discomfort normally only spikes during intense physical activity. Slowly but surely, it’s lessening.
Staci was so inspired by the bright, airy hallways of Holland Bloorview, and by the treatment she received there, that she plans to return to volunteer once she’s old enough.
In the meantime, she advises other kids like her not to give up. “Stay strong,” she says. “Pain ends.”
