How Providers Can Help Sickle Cell Patients Feel Heard and Respected

In my previous column, I shared that I’d contracted what I think was food poisoning, which led to dehydration and, subsequently, a sickle cell crisis. In seeking medical attention, I faced several hurdles while navigating my local ambulance services.

Unfortunately, the hurdles often continue even after I’ve arrived at the hospital. However, because it’s Sickle Cell Awareness Month, I’d like to focus on the positive and share some examples of excellent care I received during my recent admission.

When I presented to the hospital, the accident and emergency (A&E) team had difficulty accessing my care protocol. When this occurred, I contacted my sickle cell specialist nurse, who told the A&E team where it was located and what I required.

I’d like to highlight a few things here. First, I appreciated the A&E staff’s honesty about struggling to access my care protocol. Secondly, I was grateful that they listened to me, the patient, as I sought a prompt solution that would resolve the matter entirely. I value honesty and being heard by healthcare professionals.

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Before I secured a long-term bed within the hematology ward, I stayed in a general holding ward for one night. During this time, I had a nurse who cared for me excellently — and she wasn’t even a hematology specialist! She acknowledged that I was in excruciating pain and administered pain relief in a timely manner and in accordance with my care protocol. I didn’t have to wait hours on end, something I’ve experienced during previous hospitalizations.

This nurse was instrumental in getting on top of my crisis pain, which allowed me to finally get a few hours’ sleep. I had gone four days without any!

Unfortunately, the pain returned. Once I moved to the hematology ward, the doctor outlined the options for tackling it. He advised that I could continue receiving subcutaneous injections of opioids, but also presented the option of patient-controlled analgesia (PCA).

His approach made me feel informed and included in my care. He didn’t make all the decisions for me or demand I get on board with a particular plan. He listened to my concerns, believed me, informed me of all my options, and allowed me to take the lead on next steps.

I chose the PCA route, and he worked with me to decide when to reduce opioid dosages and, later, when to take me off PCA. I felt extremely empowered and respected as a patient.

Whenever sickle cell disease is discussed, a prominent topic is crisis pain. I can understand why because the pain is so crippling, and I cannot understate its impact on my ability to complete everyday tasks. In the hospital, I was unable to manage my personal care needs due to my pain levels. Fortunately, a healthcare assistant (HCA) regularly offered me a helping hand.

I greatly appreciated this because that kind of help isn’t always offered to younger patients. I’ve had experiences where no help was offered at all. Usually, my mum helps me manage my personal care while I’m in the hospital. However, that wasn’t an option this time due to COVID-19 restrictions. I’m grateful the HCA was on hand to help me maintain my dignity through this difficult period.

As a patient, it’s comforting and reassuring when healthcare professionals consider my humanity, demonstrate empathy, and uphold my dignity. I’d like to use this awareness month to highlight the type of care sickle cell patients seek. We want to be respected and listened to. We need healthcare professionals to believe our pain and do their best to tackle it promptly.

To all providers, please continue to consider what all you can do to help the sickle cell patients in your care.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.