You Should Be Your Biggest Advocate for Quality Care

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by Tito Oye |

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As a child growing up with sickle cell disease, constant trips to the hospital gave me the perception that the doctors and nurses in charge of my care were superhuman, and they always provided me with quality care. It seemed there was no issue they couldn’t fix. I looked up to them in awe of their knowledge and healing abilities.

I was so inspired by my healthcare providers that, for a few years, I wanted to become a pediatric hematologist so that I could help other kids like me who were dealing with sickle cell disease. However, as I grew older, I began to understand that the medical professionals I once held in the highest esteem are only human. They don’t know everything, and they can’t do everything I once thought they could.

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I realized this as I began to interact with medical professionals who were not specialized in hematology. I noticed a general lack of understanding about what sickle cell disease is and about the type of care we patients need. I also noticed that when I interacted with hematology specialists who were unfamiliar with my case, I received what I would describe as “one-size-fits-all care,” meaning that advice was more generalized and not based on my individual needs.

I live in the U.K., where I have access to free healthcare provided by the National Health Service (NHS). For most of my life, I had a “beggars can’t be choosers” mentality about the care I received. I was under the impression that I am privileged to have access to healthcare, so I should be happy with whatever service I received.

I’ve since changed my thinking a bit. The NHS isn’t technically free, as we pay for it with our taxes. With this in mind, I have become more focused over the years on ensuring that I receive an acceptable level of quality care.

I had the life-changing realization that I should play a more active role in ensuring that the care I receive is good rather than simply accepting whatever was recommended. Today, if I suspect my appointed healthcare practitioner doesn’t have my best interests at heart, I’ll request a different one. All sickle cell patients should do this, if other options are available.

Be your biggest advocate. That’s essential. Those of us with sickle cell disease can’t just sit around and hope that decisions are made with our best interests in mind. If we do, several things could fall through the cracks, and symptoms, such as infections and chronic pain, could worsen over time.

We know our bodies best, and when we feel that something is wrong, we should do what we can to make sure we get the care we deserve. If that means asking to speak with other doctors to get a second, third, or even fourth opinion, or going to another hospital entirely, then we must do it. We can’t afford for our concerns to be ignored, because it could be a matter of life and death. Don’t be afraid to speak up!


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.


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