Scarborough Health Network (SHN) is redesigning care within our longstanding Kids Care Sickle Cell Disease (SCD) Clinic to better serve and advocate for those living with this life-altering disease.

On November 18, our Women and Children’s Health and Quality Improvement Teams hosted a SCD Townhall, bringing together more than 50 patients and families, in addition to community members, local leaders, and staff and physicians to participate in meaningful conversations that will help in the co-design of SCD to align with the new Ontario Health SCD Quality Standards moving forward.

Three of these patients and family members shared powerful stories about their journey and experiences living with sickle cell disease. Read their stories to the right.

Through remarks and presentations, shared lived experiences, and facilitated engagement, attendees took part in discussions about treatment, the patient and family experience, how to better support those living with the disease, and how to improve access and quality of care for patients with SCD.

At the event, Glyn Boatswain, Executive Vice President, Clinical Program and Chief Nursing and Allied Health Executive; Michelle O’Connor, Director, Women and Children’s; and Stephanie Robinson, Director, Quality, Patient Safety, and Patient Experience welcomed opening remarks from:

  • Deputy Mayor and City Councillor for Scarborough-Rouge Park Jennifer McKelvie
  • Dr. Peter Azzopardi, SHN Corporate Chief and Medical Director of Paediatrics
  • Dr. Lani Lieberman, SHN paediatrician and expert in paediatric hematology and transfusion medicine

In addition, SHN was thrilled to host the attendance of notable guests:

  • Gary Anandasangaree, MP for Scarborough-Rouge Park, and representation from Vijay Thanigasalam, MPP for Scarborough Rouge Park
  • Dotty Nicholas, SHN’s celebrated retired paediatric nurse, who launched our SCD clinic and was integral to planning for this Town Hall event
  • Ulysee Guerrier, president of the Sickle Cell Association of Ontario
  • Judy Grandison, president and executive director of Camp Jumoke, an organization that provides recreational and educational opportunities for children with SCD
  • Marcia Palmer, who participated on behalf of our partners at the Sick Kids organization.
  • Marie Samuels and Heda Arthur, two of the Board of Directors of the Dotty Nicholas Sickle Cell Scholarship Award

We are grateful for the time and commitment of the many patients and families who joined us. We thank them for being part of this engagement and helping us transform how we deliver care for SCD for our Scarborough community.

We were also joined by our pediatricians, physicians, SHN leaders, Clinical Practice Leaders, child life specialists and nurses. Their dedication to the program and to the care of our community has enabled SHN to care for SCD patients for the past 20 years.

Following the remarks and patient and family stories, the attendees were given the opportunity to be involved in co-designing care at SHN. They were engaged through a breakout group exercise that was facilitated by several SHN staff and physicians. Each group held in-depth conversations focused on Emergency Department, Inpatient, or Outpatient care — providing insights and feedback on their experiences at SHN.

After an hour, participants came back together and the forum floor opened for individuals to report on what they discussed in their groups. The room was once again captivated by the clear and passionate voices of patients and families living with SCD, advocating for compassionate care and streamlined access to treatment and services.

To close off the event, SHN leaders thanked everyone for their participation and open discussion in this first step of transforming the patient and family experience. SHN is committed to taking the input received at this engagement to inform operational healthcare planning and redesign, and move us forward along our journey toward improved care for sickle cell disease here in Scarborough.

Shared lived experiences from our patients and family members

Hear from some of the dedicated family members and a patient who spoke at our Sickle Cell Disease Town Hall event:

Richard and his wife were first introduced to SHN 18 years ago, when the couple were expecting their first child who they learned would be born with SCD. Today, their daughter is in her first year of university and has had very few complications as a result of SCD.

“The medical team at SHN offered exceptional care, education and compassion that greatly assisted in calming the heightened anxiety my wife and I were experiencing as new parents to a child with SCD.

The team at SHN and SickKids also played a key role in assisting us in establishing a collaborative plan with our daughter’s school to ensure protocols were established around fire drills and remaining indoors during cold temperatures.

Accessing SHN was also very convenient given that our family resides in the Markham-Stouffville area. My wife and I are extremely thankful for the exceptional care we have received between SHN and SickKids.”

Charmaine is grateful to SHN and Dr. Azzopardi, who first diagnosed her son with sickle cell anemia through newborn screening. In fact, Dr. Azzopardi was one of the first advocating for newborn screening for SCD during that time. This year, Charmaine’s son will turn 19.

“As a first-time parent, it was daunting not knowing much about sickle cell. My son was set up for clinics at SickKids and SHN. I am so grateful to have had our first clinic appointment, close to home, at Centenary Hospital.

SHN’s doctors and nurses were very knowledgeable and supportive. Thank you to Dotty Nicholas, SickKids and SHN for the advice and compassionate care for my son over the years.”

Twelve-year-old Elijah, who has been a patient at Centenary Hospital for most of his life, spoke bravely on his experience living with SCD.

“When I was a baby, my mom told me that I had sickle cell disease and would have to manage it for the rest of my life. The one thing I was not told was how hard it was going to be for the past 11 years. Some days are rough.

So rough I can’t stand to my feet, but when I go to the hospital it’s never scary for me because the nurses and doctors are so very nice. They never let me feel scared, and it makes me feel like I am their friend.”