Dr. Monika Asnani of the UWI Mona Sickle Cell Unit and Duke students Madelaine Katz and Bianca Martin. The three are members of the Bass Connection project titled "Integrative Global Research on Sickle Cell Disease."
Published September 8, 2015, last updated on April 7, 2020 under Voices of DGHI
Clinical settings are certainly not usually touted for their warm, welcoming atmosphere. So why does stepping into the Sickle Cell Unit (SCU) at the University of the West Indies in Jamaica feel like coming home?
At the SCU, patients young and old return year after year for both emergencies and routine check-ups. They see the same nurses and doctors, sit in the same familiar mural-painted waiting rooms. This highly functional model, dedicating an entire unit to one specific chronic illness and its patients, is uncommon to healthcare settings, but it demonstrates its great strides through the outstanding outcomes in its patients.
While the clinic design itself, a space dedicated to a singular chronic illness, truly is one of a kind, that’s not the only thing what makes the SCU unique. The staff of the SCU, the team of doctors, nurses, medical technicians, and even the on-site social worker, have observed their patients grow and change within their walls. Over the years, they see babies becoming young adults and adults having babies of their own. From my time working in the registration room, where nurses assess and triage their patients before consultation, I observed phenomenal patient-caregiver interaction. Medical staff at the unit truly develop a working relationship with their patients, and often a close one. Staff have been known to attend weddings, baby showers and funerals for patients they have come to know over the years at the clinic. Hugs and handshakes, faces lit up with smiles of recognition, and the warm calls of “How is your mother/father/sister doing?” are a commonplace sight in the clinic.
The benefits of healthcare workers building an ongoing relationship with patients are innumerable, especially since the presentation of sickle cell (SC) disease varies greatly within individual patients. Even those who have the same genotype of the disease sometimes have completely different pain and health outcomes. The staff are well aware of their patients' “well states” and can quickly recognize when their levels are abnormal, providing indication of health concerns early. Additionally, since one of the cornerstones to SC treatment deals with pain, an incredibly subjective experience, staff have a working understanding of their patients’ tolerance and responses to various treatments, getting them the care they need most effectively.
One of the most traumatic realities of living with sickle cell disease, a hereditary blood condition altering the shape of red blood cells and their ability to flow uninhibited throughout the bloodstream, is the sudden onset of a vaso-occlusive pain crisis. Little can be done for patients in an emergency room setting when these crises occur, and often medical staff is not familiar enough with SC to know how best to help a patient through the painful episode. However, the unit has incorporated an innovative day care facility that allows these patients to ride out their crises in a calm and carefully observed environment that continuously monitors and administers the ideal pain medications to patients. A commonly held sentiment among patients of the clinic is that just the knowledge that there is a safe and dedicated space meant solely for the purpose of these episodes is an enormous comfort when the pain begins.
The SCU’s work with patients doesn’t end at the clinic, either. The unit engages in world-class research partnerships with child development and psychology labs to engage children with sickle cell disease and their parents in health education and management studies to help ensure better care in the home. I was also lucky enough to experience firsthand the popular Teen Summer Camp for SCU patients, led by clinic staff, where teenagers learn more about their disease alongside their peers and have a lot of fun with each other along the way. Empowering messages during this tumultuous period of life are beneficial for any adolescent, but growing up with sickle cell disease during this time presents its own unique challenges, and the clinic’s doctors and nurses who lead this camp equip the campers with powerful tools to meet those trials. I sat alongside 20 bright and brave teens that truly internalized their worth and their potential, knowing that having sickle cell disease is by no means a barrier to living a life that you love.
The weight of managing a chronic illness is a taxing, and life long experience. However, the presence of an entire unit and its dedicated, warm staff to guide you along the path is a beacon of hope in time of worry and pain. This unique model was one that I felt privileged to observe, and I can only imagine what incredibly positive outcomes could emerge out of developing similar spaces, for sickle cell disease and other chronic illness such as diabetes or HIV, in areas of need across the globe.
