On Saturday, February 22, Scarborough Health Network (SHN) hosted its second Sickle Cell Disease Town Hall at Centenary Hospital. The event, aimed at improving care for individuals living with Sickle Cell Disease (SCD), gathered patients, families, healthcare professionals, and community leaders to collaborate and continue to co-design SCD care in Scarborough.

The focus of the town hall was to address the needs of adult patients and paediatric patients transitioning to adult care, an essential step in ensuring seamless, patient-centered services. SHN also shared the actions taken and new initiatives implemented based on community feedback from the first SCD Town Hall in November 2023, some of which included:

  • Self-identification for SCD patients at the registration kiosks in the emergency department (ED), which lowered the average wait time for SCD patients to be seen by a physician from 70 minutes to under 20;
  • The establishment of a dedicated interprofessional SCD team consisting of a nurse practitioner, registered nurse, and social worker;
  • And the appointment of Vice President of Research and Innovation, Dr. Kevin Kuo, a renowned physician in SCD research.

These changes emphasize SHN’s commitment to reflecting community voices in our delivery of care—particularly those of the Black community, as SCD most commonly affects individuals of African and Mediterranean descent. This year’s town hall was an opportunity to learn about how the community’s needs have grown and changed in order to continue our efforts in enhancing SCD care.

A day for dialogue and collaboration

The town hall was opened by Michelle O’Connor, Director of the Women’s and Children’s Program at SHN and a major proponent in SCD care initiatives alongside our Medicine and Emergency Care programs.

“This event is a continuation of our ongoing efforts to engage with the community and make sure we are listening to those with lived experience—patients and families,” said Michelle.

Michelle welcomed Dotty Nicholas, a celebrated, retired paediatric nurse and fierce SCD advocate who had personally worked with many of the families attending the town hall. ‘Ms. Dotty’ spoke on the impact community members made by attending and engaging with SHN as we work together to enhance patient care.

The town hall was also attended by distinguished guests and community advocates including Biba Tinga, President and Executive Director of the Sickle Cell Disease Association of Canada; Lanre Tunji-Ajayi, President and CEO of the Sickle Cell Awareness Group of Ontario; and Ulysee Guerrier, President of the Sickle Cell Association of Ontario.

Biba, who is also a mother of an adult son with SCD, spoke at the town hall about the challenges of raising a child with the disease, particularly in the early days of diagnosis.

“As someone who has personally and professionally navigated the complexities of Sickle Cell Disease, I know that advocacy is crucial,” Biba remarked.

“As parents, it’s essential that we equip ourselves with knowledge to effectively advocate for our children and confidently navigate the healthcare system. Moreover, as professionals, healthcare organizations must listen to and understand the needs of the community to provide the best possible care and support.”

Dr. Peter Azzopardi, Corporate Chief and Medical Director of Paediatrics at SHN, spoke more on the enhancements initiated after the first SCD Town Hall, including ED protocols and staff training aimed at reducing wait times and improving pain management.

“We’ve listened to your feedback and have worked hard to make tangible improvements,” Dr. Azzopardi said. “Our goal is to ensure that individuals living with Sickle Cell Disease receive the best possible care at every stage of their lives.”

Dr. Alexis Gordon, Chief of and Medical Director of Medicine, and Nancy Veloso, Associate Vice President of Clinical Programs, also shared the initial planning of a new Adult Sickle Cell Disease Clinic that is slated to open at Centenary Hospital in spring 2025. The clinic will see the Sickle Cell team dedicating care to adult patients who would otherwise visit the ED for crises relating to SCD.

From patients to advocates

Attendees also heard moving remarks from patients with SCD sharing their personal experiences at SHN.

Anton, a grade 12 student, spoke about his own story at SHN and getting help for his SCD flare-ups.

“Trust is the most important thing when dealing with Sickle Cell, as is having someone there to support you during a crisis,” Anton said.

“I used to always feel bad when my parents had to bring me to the hospital during a crisis, because I felt shameful about having Sickle Cell Disease and causing them stress.

Now, with the support we get at SHN, it feels so much easier and more manageable for me and my family. I know now that my condition is nothing to be ashamed of.”

Then there was Tasie, a biochemistry student at University of Toronto – Scarborough, who told us about her journey transitioning from SickKids into general adult care while living with SCD.

“I was experiencing flare-ups after I started university due to the stress associated with the environment change, so I had to learn very quickly how to advocate for myself,” Tasie shared.

“I didn’t know what to expect when I went to the hospital, especially since it was my first time going without my mom, but I’m grateful to SHN for their supportive transition team and for helping me navigate the process. I felt truly heard and looked after, and like the hard work I put in to advocating for myself was being received and applied to my care.”

Hearing directly from the community

In small groups facilitated by staff, attendees participated in interactive activities and discussed key topics related to the emergency department and inpatient and outpatient care related to SCD patients. Each group shared their discussion takeaways at the end of the event, which was a key step in communicating the changes that needed to be made to further enhance SCD care.

“Your voices are critical in helping us shape a system that is truly patient-centered,” said Michele James, Executive Vice President for People and Transformation at SHN. “We want to ensure that the care we provide is not only effective, but also compassionate and culturally responsive. By hearing your voices today, we are taking the next step in doing so.”

The community feedback received during the Town Hall will play a significant role in shaping the next steps for improving SCD care at SHN, especially as we prepare to open the Adult Sickle Cell Disease clinic later this year.

SHN extends heartfelt thanks to all patients, family members, and community members who shared their stories and concerns to help us on our mission to provide the best possible care for individuals living with SCD. We look forward to continuing our work together and further improving the care experience for all those impacted by Sickle Cell Disease in Scarborough and beyond.