CEO blog: Get Up and Go

Last month during National Pain Awareness Week we welcomed young people, families, pain clinicians from across the province from the Pediatric Chronic Pain Network, representatives of the Ministry of Health and Long-Term Care and Dr. Hoskins’ office, and the teams from Holland Bloorview Kids Rehabilitation Hospital and SickKids to celebrate the success of the first two years of the Get Up and Go: Persistent Pediatric Pain Service, a truly innovative and life-changing program for young people living with chronic pain and a first of its kind in Canada.

Persistent pain among Canadian children is a growing area of concern. A recent systematic review of prevalence studies found that up to 38 per cent of children and adolescents will suffer from chronic pain, and up to 8 per cent of these children will develop a significant pain-related disability. This can lead to long-term opioid use, social isolation, declining attendance at school, sleep and mood disruptions, and emotional and financial stress for families.

This is why the Get Up and Go program is so critical. The program helps young people and their families, who experience persistent pain and struggle with many of these issues, get back to living their best and healthiest lives.

This was a need that was identified by staff and families at Holland Bloorview and SickKids. The Get Up and Go program is an excellent example of how this kind of partnership can work and of course, it couldn’t have happened without the support of the Ministry of Health and Long-Term Care.

The four-week intensive program is unique in Canada because it offers both an inpatient and outpatient component. Participants spend the first two weeks as inpatients at Holland Bloorview in a highly structured rehabilitation program, followed by a two-week outpatient program that is designed to support the transition back to their home and community.

The multi-disciplinary team is led by a physician and nurse practitioner, and includes psychiatry, psychology, physiotherapy, occupational therapy, social work, nursing, dietary, pharmacy and therapeutic recreation services drawn from both SickKids and Holland Bloorview.

Staci Berman was one of the first participants in the program and shared her story of being injured playing basketball. As Staci put it: “My pain latched onto me and became the newest part of me. This was the part that kept me bed ridden, unable to go to school for 40 days, 2 years of my childhood, taken over by my pain.” In describing the impact of Get Up and Go, Staci reflected:

“When I got to Holland Bloorview I had lost all muscle in my right leg and I could barely walk. We persevered tirelessly to rebuild the strength and flexibility in my leg and body overall. …The Get Up and Go program has rebuilt me not only physically, but mentally. They have given me back the confidence that I lost all those years ago along with everything else that I lost from the pain.”

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Staci Berman, Get Up and Go client, and her mother, Shelley Berman, at the Get Up and Go Celebration Event.

Jodi Seguin’s daughter Lauryn was another client in the program. Jodi reflected on the impact not only on her daughter, but on the whole family:

“What I didn’t know going in to this program was that as much as this team was going to help my daughter, they were also going to help my entire family. My husband and I were involved in group, and one-on-one sessions, we were taught about mindfulness (not for Lauryn but for us!), we were encouraged to share our frustrations and fears, and we had countless opportunities to talk about the stress and worry we had experienced over the last year. We were also given a toolkit full of ways to help Lauryn when she returned home.”

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(From L-R) Jodi Seguin, mother of Get Up and Go client; Susie Mallory, therapeutic recreation specialist with the program; and Lauryn Seguin, former client with the program, reunite at the celebration event.

This partnership has continued to advance pediatric pain management in for Ontario’s children. As Dr. Mike Apkon, CEO of SickKids, reflected in his remarks: “We continue to build on our long and close relationship with Holland Bloorview because we know the best outcomes for our patients and families happen when there is a coordinated approach across different health-care providers. Our Kids Health Alliance partnership, which we launched earlier this year [along with CHEO-OCTC], arose from the need to better serve kids and their families that have to navigate a complex network of providers.”

With the creation of Get Up and Go in 2015, youth no longer needed to travel to the United States to receive this type of intensive and highly-specialized service, saving the province up to $2 million dollars annually. This is the right care at the right place for the right price.

What matters the most, and the reason our teams get out of bed each morning, is the impact on the lives of young people and families. No one can say it better than a mom. As Jodi Seguin said of her daughter Lauryn’s journey:

“Lauryn couldn’t walk when she came [to Holland Bloorview and] only 3 weeks [later she was] running. The strides she was making, on the pavement, and in this program were mind blowing and it was all due to a small group of incredibly dedicated people who were with her (and us) every step of the way. … The girl who hobbled in to the hospital, on her first day, only 4 short weeks prior, sprinted out the door on her last day.”

This is why we get out of bed every morning. Congratulations to the Get Up and Go Team and all the clients and their families.

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(From L-R) The Hospital for Sick Children (SickKids) President and CEO Dr. Mike Apkon; Shelley Berman; Staci Berman; Susie Mallory; Holland Bloorview Kids Rehabilitation Hospital President and CEO Julia Hanigsberg; Lauryn Seguin; and  Jodi Seguin.

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Julia
@Hanigsberg

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