When pain ends, kids can be kids again: Get Up and Go celebrates two years of successful partnership between Holland Bloorview and SickKids
Staci Berman was only 11 years old when an accident at a basketball tournament changed her life. Pushed from behind, all of her weight jerked violently onto her right leg. She instantly felt a fire in her right hip. She would be in constant pain for the next 18 months, with pain taking up residence in her lower back, down her right leg, and even making her toes numb.
Berman, now 15, shared her story on Nov. 9 at Holland Bloorview Kids Rehabilitation Hospital, where patients, families, and teams gathered to celebrate the second anniversary of Get Up and Go: Persistent Paediatric Pain Service. The service is a collaboration between Holland Bloorview and The Hospital for Sick Children (SickKids).
Get Up and Go, or GUAG, is unique in Canada: it is the only paediatric pain program that includes inpatient services for kids and youth who have not had success with other pain programs and live in chronic pain. Before the program was launched in 2015, kids and youth whose pain significantly impacted their lives had limited pain program options in Canada, and may have chosen to travel to the U.S. for care.
Supported by the Ministry of Health and Long-Term Care, the success of and demand for the program prompted the Ministry to double GUAG’s funding in its second year, to increase support and meet the incredibly resource-intensive needs of kids and teens with chronic pain. The program expects to transform the lives of 52 youth over the next year.
"Chronic pain among Canadian children is a growing area of concern," says Julia Hanigsberg, President and CEO, Holland Bloorview Kids Rehabilitation Hospital. "It can lead to social isolation, declining attendance at school, sleep and mood disruptions, and emotional and financial stress for families. The Get Up and Go program helps young people and their families, who experience persistent chronic pain and struggle with many of these issues, get back to living their best and heathiest lives."
Berman, who was initially treated at SickKids, was one of the first six clients to receive care in the then brand-new GUAG program when it launched in 2015. After months of trying various treatments, including physiotherapy, mindfulness training, and pain killers, she was eager to give it a try.
"When I got to Holland Bloorview, I had lost all muscle in my right leg and I could barely walk," says Berman. "The team persevered tirelessly to rebuild the strength and flexibility in my leg and body overall."
"Persistent pain takes a team to successfully treat it," says Dr. Michael Apkon, President and CEO, SickKids. "We know the best outcomes for our patients and families happen when there is a coordinated approach across different health-care providers. Our pain teams, both at SickKids and Holland Bloorview, work closely together in a family-centred approach to help patients and families manage chronic pain issues. This partnership has continued to advance paediatric pain management for Ontario’s children."
The four-week program helped Berman heal physically through intensive rehabilitation, but also taught her how to cope with pain and the emotional effects of living with it. "I felt ashamed of my pain at school," she says. "I was teased more than I was supported. My classmates thought I was faking it, as they couldn’t see any physical proof that I was injured. I had no crutches, no wheelchair, no visible injury."
Berman's confidence began to take a hit, and she began to fear her pain. The program taught her techniques to deal with it, such as deep breathing and visualization. Feeling more like an active agent in managing pain, she overcame her fear of exercising and hurting herself again. "I would say to myself 'So what? You know how to deal with pain' when I thought about being active again."
Berman transitioned out of the program feeling confident that she could manage. "They didn't just pick me up and throw me in the deep end and say 'Swim!'," she says. "They prepared me for life outside." She has become adept at listening to her body, avoiding high-impact activities and choosing ones that build her strength and flexibility. Nearly two years after graduating from the program, she incorporates techniques she learned into her everyday routine, such as making sure she gets enough sleep, keeping to a routine so she isn't overwhelmed, and managing her stress.
"Chronic pain made me feel like a prisoner trapped with no escape," she says. "But with the right team behind you like the team in the Get Up and Go program, they make the hard work feel easy. This team of insightful, compassionate, dedicated and hard-working professionals make the goals seem attainable and they make recovery feel in reach. After this program, I have seen immensely positive impacts on my life. It has taught me to be resilient, courageous and to continue to embrace the process of recovery."