Transitioning from pediatric to adult healthcare is a major milestone for any young person. For kids and teens living with sickle cell disease (SCD), the transition can involve learning new skills, taking on more responsibility, and becoming comfortable managing their own healthcare needs without relying on parents or guardians.
To help young adults feel prepared and supported during this important stage of care, the Center for Inherited Blood Disorders hosts an annual Sickle Cell Mock Clinic in collaboration with the Sickle Cell Disease Foundation (SCDF).
The Mock Clinic gives teens from SCDF’s SC Crew the opportunity to practice navigating a healthcare visit independently, with guidance and support from mentors, providers, nurses, and other members of the care team.
The importance of transition preparation is something the SC Crew was created to address. Without the right support, some young adults with SCD may struggle to navigate the adult healthcare system independently or stay connected to specialized care.
“When Portia and I founded the SC Crew, it was because we saw a massive gap: there was no formal transition process for our youth. They were being pushed out of pediatric centers, completely unprepared for the realities of the adult healthcare system.” – AC Wells, Community Health Worker at the Jeffrey Smith Sickle Cell Clinic at the MLK Jr. Outpatient Center.
Creating a Safe Space to Practice Self-Advocacy
During the Mock Clinic experience, participants practice skills they will use throughout their healthcare journey, such as:
- Knowing their medications and treatment plans
- Recognizing and communicating symptoms
- Asking questions during appointments
- Speaking directly with healthcare providers
- Understanding their care team and available resources
- Advocating for their own health needs
Each participant completes a simulated clinic visit with CIBD providers and staff, creating a realistic experience while still providing a safe and supportive environment to learn and grow.
“The experience was amazing for our members and mentors. Our members learned their medical needs and how to properly advocate for themselves, because sickle cell is a very individualized disease. For our members, learning more about their bodies, learning more about their sickle cell disease, and understanding how to recognize knowledgeable sickle cell care providers is amazing.” – Rialton Reid, Program Assistant at SCDF.
A Team Effort to Support the Next Generation of Care
This year’s event brought together the largest group of CIBD staff volunteers to date, with providers, nurses, case managers, and team members across disciplines coming together to support participants.
A total of 16 young adults from the SC Crew participated in this year’s Mock Clinic, supported by their mentors and SCDF staff throughout the experience.
Learning Through Feedback and Reflection
One of the unique parts of the Mock Clinic is the opportunity for participants to receive feedback about their healthcare skills. After each appointment, mentors and providers take time to discuss what they did well and identify areas where they can continue building confidence.
Participants can also provide feedback and evaluations of their interactions with CIBD providers and share what helped them feel comfortable during the visit. This two-way feedback allows both patients and healthcare teams to learn from one another.
“As medical providers, our daily care of our patients is in a very clinical setting. The Mock Clinic provides us the opportunity to see a visit from a patient’s point of view as they provide us feedback on the event and their mentors help them recognize gaps in their knowledge. This helps us as providers learn how we can better educate our patients and get feedback on how we provide care.” – Jeri Tucker, RN, BS, Clinic Manager at CIBD
Supporting Patients Beyond the Clinic Visit
The Mock Clinic event also strengthens the connection between patients, families, healthcare teams, and community organizations.
AC shares, “At its core, the collaboration between SCDF and CIBD works because of a shared, genuine commitment to our members. This is not just a strategic alliance; it is a partnership built on a mutual understanding of the clinical and emotional realities of living with Sickle Cell Disease.”
We are grateful for our continued partnership with the Sickle Cell Disease Foundation and the opportunity to support SC Crew members as they prepare for adult care.
Together, we can help ensure that young adults have the knowledge, resources, and support they need to take an active role in their healthcare journey.