Imagine facing a chronic disease that can inflict recurrent anemia, extreme fatigue and weakness, and episodes of relentless pain so severe that you require emergency care. Now compound that with the emotional and psychosocial distress of others not recognizing or relating to the severity of your symptoms because they do not understand what it feels like to have stiffened, sickle-shaped red blood cells get stuck moving through your vessels, blocking blood flow to your chest, abdomen, and joints.

This is the kind of lived experience shared at a Sickle Cell Disease Community Town Hall held by Scarborough Health Network (SHN) last fall, that has helped to inform the expansion of sickle cell disease (SCD) services. Working together with patients and family members, SHN identified several opportunities to address the challenges this patient community faces, particularly for patients who arrive to the Emergency Department (ED) with SCD symptoms.

“Sickle cell primarily affects those of African, Mediterranean, Middle Eastern, and South Asian descent. Here in Scarborough, the majority of our patients with sickle cell disease are from our Black community,” said Morgan McNeil, Interim Director of the Emergency Department. “This reality underscores the importance of looking at systemic challenges and barriers that Black patients may face in accessing healthcare.”

Since developing dedicated committees focused on improving SCD care and tracking important quality metrics, SHN has aligned with Ontario Health’s new quality standards for sickle cell care, and implemented better practices for patients with sickle cell disease. Four new initiatives resulting from this work include:

  1. Self-identification of sickle cell disease as a presenting complaint at the ED kiosk. This crucial step helps streamline the triage process, ensuring these patients receive the prompt and specialized attention they need.
  2. Sickle cell awareness training for nurses. ED and paediatric nurses are completing the Sickle Cell Awareness Group of Ontario’s eLearning modules, designed to improve their knowledge and skills, ultimately aiming to reduce health inequities and improve access to safe, equitable care.
  3. Epic clinical information system flag for early pain management. SHN’s clinical information system now flags to healthcare providers if early pain intervention is required. When a patient with a documented history of sickle cell disease is triaged, a best practice advisory is triggered if their presentation is related to a sickle cell crisis, to support providers to administer pain medication within 30 minutes of triage.
  4. Standardized ED order set for paediatric patients with sickle cell disease. This new order set incorporates best practices to assist physicians in making informed decisions quickly and effectively.

This work extends SHN’s proven success with the dedicated Kids Care Sickle Cell Disease Clinic that supports children and their families through outpatient visits, and a paediatric inpatient unit where kids can stay in hospital for specialized care.

In the Kids Care Sickle Cell Disease Clinic, patients are able to access timely and focused care for sickle-cell related symptoms and issues, which can require more specialized treatment. But when they outgrow paediatric care, patients without quick access to family physicians are left with the ED.

“These initiatives are strengthening the healthcare experience and continuum of care for SCD patients of all ages, and creating a better transition for patients receiving sickle cell care from the paediatric unit to the ED,” said Dr. Peter Azzopardi, Corporate Chief and Medical Director of Paediatrics.

Expanding swift and accessible support for our sickle cell patients from childhood to adulthood is crucial in the health care space.

“Life for patients with sickle cell disease doesn’t have to be one of uncertainty and fear,” added Dr. Elancheliyan Ambalavanar, Associate Medical Director of Emergency Medicine.

“With our programs’ collaborative approach, shared resources and the continued ingenuity and passionate dedication of point of care staff, medical staff and leaders, we are supporting our patients to better manage sickle cell disease and live happier lives.”

September is recognized as Sickle Cell Disease Awareness Month, a time dedicated to raising awareness and supporting those affected by this condition. Read more about the lived experiences of some of the dedicated family members and a patient who spoke at our Sickle Cell Disease Community Town Hall on SHN.ca.