Complex Care Clinic

The Complex Care Program celebrates its fourth anniversary of providing care to more than 75 children and youth with complex medical needs living in the Durham Region since its launch in May 2021. This clinic is specifically tailored for children and youth with significant health complexities that often require frequent hospitalizations, involve multiple healthcare specialists and need extensive medical care. Many children and youth who access this program depend on technological support for essential daily functions like mobility, feeding and breathing. In partnership with SickKids Hospital, Lakeridge Health and the Ontario Health at Home Central East, the clinic’s goal is to deliver coordinated care closer to home.

Grandview Kids’ Complex Care (CC) Program serves children of diverse medical complexities, demographics and ages. 18-year-old Rhys is a recent CC graduate. He was born prematurely at 29 weeks gestation age and has several diagnoses, including Cerebral Palsy (CP), chronic lung disease, severe scoliosis and kyphosis, a tracheotomy (trach) and gastrostomy tube (G-Tube), is non-verbal and uses a wheelchair. He is completely dependent on nursing and parental care, requiring round-the-clock total support. Despite his struggles, Rhys is described as a consistently happy and excitable teen who loves to laugh, listen to music and watch action shows. His mom, Becky, shares how participating in the CC Program transformed their journey of fear and isolation into a story of belonging, connection and celebration.

Rhys’ journey began differently from most preemies with a good Apgar score (a system doctors and nurses use to assess newborns after birth). His lungs, however, became easily fatigued, and every attempt to extubate him would result in him coding (a situation where a patient experiences a critical medical emergency, pertaining to cardiac arrest or respiratory failure) because his throat would close, causing further brain damage. He remained in the hospital for the first nine months of his life and was later diagnosed with CP when he was 1.5 years old.

Hopeful of the promises of early intervention, Becky did everything she could for Rhys in those early years, as she did not work to be able to take him to ability camps and optimize the abilities he had. Regrettably, Rhys lost many of his skills over the years due to resuscitation events, which happened every time his trach was removed. He could no longer swallow food, make verbal noises or use sign language. It was a terrifying time for both Becky and Rhys, whose awareness of these incidents increased over time. Thankfully, Rhys was able to undergo airway reconstruction in 2020, so accidental trach removal is less scary since he will not code. He knows he will be able to breathe again because he is on a ventilator.

Over the years, more disciplines at SickKids Hospital needed to be part of Rhys’ medical care. Sometimes the care plan did not always connect, leaving Rhys’ parents confused, especially in the beginning, as no one could provide a solid diagnosis or prognosis. The appointments were inconsistent, not on the same days and required careful full-day planning as Rhys’ family would always need a second trained caregiver to assist with transfers and travel from Bowmanville to downtown Toronto. These frequent hospital visits were also a financial burden as expenses accumulated through parking, gas and purchasing food.

Joining the Grandview Kids’ CC Program three years ago, “Changed his life and made an enormous impact,” Becky says gratefully. Care coordination became easy as clinic days involved his whole team working together to ensure everything was understandable and organized. They became a trusted voice that built rapport over the years as they “got to know your child and history, not only on the computer screen but truly grew up with him.”

Attending clinics was better for Rhys and his caregivers since they only needed to travel 15-20 minutes from home. Rhys also developed white-coat syndrome because of the trauma brought by frequent and painful hospital visits. Grandview Kids, on the other hand, a facility where Rhys received therapy and attended school, was a familiar place full of positive memories. CC clinic days brought peace of mind and happier trips, which led to less stress, enabling Becky to be a more present parent and caregiver.

Becky acknowledges the real threat of being on the precipice of caregiver burnout. “You must become that advocate early on, but you don’t know enough. You need to do your research, but when you go on the Internet, you find mixed information and navigating through everything is difficult,” Becky shares. She attributes a large part of Rhys’ success to the connection to the CC team. Their assistance in working through complicated choices to make informed decisions made their lives easier. Continuity of care was a top priority throughout the journey, even leading to and after graduation. Becky felt she could reach out to the team, knowing peer-to-peer support was present, and that an answer to a question or referral would be made if necessary. The team was “available, resourceful, friendly and truthful” over the years, making the transition from paediatric healthcare to adult healthcare less daunting.

Want to learn more about the Complex Care Program?

Click here to view the dedicated program page.

Reflecting on the first anniversary of the Durham Region Paediatric Complex Care Program

In May 2021, Grandview Kids opened its doors to children and youth with medical complexity with the launch of the Durham Region Paediatric Complex Care Program. On our first anniversary, members of the multi-disciplinary team share their reflections on how this program supports local children and youth with complex medical needs and their caregivers.

Members of the Complex Care Program multi-disciplinary team posing with Zoe–the first child to access care through the program.

What makes the Complex Care Program so impactful for children, youth and families?

Samantha Haigh, Registered Nurse and Child and Complex Young Adult Care Coordinator with the Central East Home and Community Care Support Services said:

“The integrated, team approach to care is what is most impactful for those accessing care through the clinic. The collaborative engagement between families and health professionals from The Hospital for Sick Children, Grandview Kids, and Central East Home and Community Care Support Services help families to access appropriate services closer to home, improve system efficiency, improve shared decision-making and problem solving, optimize their child’s health, and navigate the health and social systems. Families are able to communicate their most important needs and concerns to the entire team at the clinic visit. This saves families time and energy by ensuring that all members of the health care team are aware of the current care plan. I strongly believe that participation in the Complex Care Program provides families with a sense of trust, support, and confidence as well as an opportunity for self-advocacy.”

A unique feature of the Program is the inclusion of a Peer Navigator. What benefit does this bring to families?

Christine Huang, Speech-Language Pathologist with Grandview Kids reflects:

“It is wonderful and unique that the Complex Care Clinic includes a Peer Navigator, a person with lived experience, who reaches out to families before every visit. Families have an opportunity on that phone call to share updates and concerns, peer to peer, and ask questions.

It could be potentially overwhelming and intimidating to be in a room full of professionals on their clinic visit, so it is great that the family has someone who can be an advocate for them in that room.”

How would you describe the Program to someone who hasn’t heard of it before?

Heather-Ann Burrell, Registered Dietitian with Grandview Kids states:

“Complex care is an opportunity for families and clients to see multiple members of their healthcare team in one appointment. With the various interdisciplinary roles in the same room, families can voice their main priorities for their child and the team can work together in unison to address these priorities.”

Courtney Brazier, Recreation Therapist with Grandview Kids continues:

“The Complex Care Program is an all-inclusive clinic where clients, families and caregivers are able to connect with a comprehensive interdisciplinary team to receive coordinated, quality care. One’s interdisciplinary team may include a Paediatrician, Nurse Practitioner, Dietician, Social Worker, Care Coordinator and Family Engagement Program Assistant, Physiotherapist, Occupational Therapist, Speech-Language Pathologist and Recreation Therapist.”

What is something you learned since the Complex Care Program launched one year ago?

Mandy Doherty, a Social Worker with Grandview Kids shared:

“The education I receive from working with families is never-ending. It is truly a privilege to work with them. They have taught me there are no boundaries to love, humour and strength. I have learned that each family is unique and therefore, the care required is unique.

It’s also wonderful to work with the multi-disciplinary team at the clinic. My knowledge base benefits from their respective roles and what they bring to the clinic.”

Members of the Complex Care Program multi-disciplinary team on the day the program launched one year ago on May 5, 2021. — Members of the Complex Care Program multi-disciplinary team.

A note of thanks

It has taken a village of dedicated individuals to build this Program. Grandview Kids would like to extend its deepest appreciation to the members of the launch team, our supportive stakeholders, and our current team delivering high-quality, coordinated care to children and youth.

Project launch team members

Thank you to the members of the project launch team who worked behind the scenes to move the Program from idea to action.

Grandview Kids: Lorraine Sunstrum-Mann, Janet Isaac, Cathy Kelly, Fadia Omer, Dr. Carolyn Hunt, Tisha Harris, Janet Isaac, Dr. Helen Wong, Dr. Tanya Buors, Marianna Wise, Andrea Belanger, Cherie Kerr, Jessica Todd, Sandie Le, Mandy Doherty, Kirsten White, Jackie Down, Christine Daley, Krista Witherspoon, Avori Cheyne, Dr. Taryn Eickmeier, Harry Deeg, Courtney Brazier, Kate Gauldie, Abby Siapno, Maritza Basaran, and Kelly O’Connor.

The Hospital for Sick Children (SickKids): Dr. Julie Johnstone, Dr. Julia Orkin, Joanna Soscia, Kate Langrish, Katharine Williams, Jason Buera

Lakeridge Health: Julie Rojas, Dr. Joan Abohwheyere

Central East Home and Community Care Support Services: Tracey Raymore, Laszlo Cifra, Nousha Naweed, Kim Grieg

Strategy Systems: Priya Rana

Kayden is a strong-willed, 16-year-old teenage girl that will tell you what she wants and how.

Even with her few words, her strong personality and love for her family is a clear imitation of her super vigilant and proactive mom. With a diagnosis of Cardiofaciocutaneous (CFC) Syndrome, an epilepsy disorder and a global developmental disorder, Kayden is fully dependent on family members in all aspects of life. She requires help with eating, toileting, dressing and personal hygiene. She uses a walker and wheelchair due to difficulty in balancing herself, is G-tube fed and uses a tablet for most of her communication, only recently beginning to speak a number of words.

Kayden sitting in-between her two siblings while kissing her sister to the right of her on the cheeck. — Pictured: Kayden and her siblings.

Kayden’s complex health needs require immense attention and care. From the endless appointments between specialists and therapies to coordinating the care and information between her medical teams in Toronto and the Durham Region community, Kayden’s family can feel the enhanced stress that comes on top of the daily care she needs. When Grandview’s Complex Care Program began a year ago, this Ajax family found that this was the extra community care and support they had been needing all along.

Kayden sitting beside her mother, father, siblings and dog on the couch. — Pictured: Kayden and her family.

Kayden has been receiving a number of Grandview services over the years but with the Durham Region Complex Care Program, children and youth with complex medical needs, like Kayden, are now supported closer to home. This program is delivered in partnership between The Hospital for Sick Children (Sick Kids), Grandview Kids, Lakeridge Health, and the Central East Home and Community Care Support Services. Though Kayden will still have to go to Sick Kids for some clinic-specific supports, such as neurology and nephrology, many services that would normally mean a full-day trip from Ajax to Toronto are now accessible at Grandview Kids. The Complex Care Program has also “helped in bridging the gap between Sick Kids and the community,” says Kayden’s mom.

“Normally I would coordinate with the hospital and home and community care, but now since they are all available at the appointments, my worries and extra efforts are completely gone. They do the work while I sit and focus on Kayden’s health issues only.”
Kaydem’s mom

Clients and caregivers benefit from the care, support and expertise of an interprofessional team, inclusive of a Paediatrician, Nurse Practitioner, Care Coordinator and Family Engagement Peer Navigator. This allows Kayden’s family to remain focused on her well-being, while Kayden’s dream “to be loved by everyone” is fulfilled.