Taking Charge of My Healthcare During Routine Checkups

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by Dunstan Nicol-Wilson |

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As part of the U.K.’s National Health Service, it is common practice for sickle cell disease patients to have routine checkups with their hematologist. These routine checkups include collecting blood and urine samples, reviewing patients’ care plans, and making general health assessments.

I have never had much enthusiasm for these appointments in the past, and for several years I could almost predict how they would go. The doctor would review my results, ask about my hospitalizations, and ask whether I needed more medications. If I hadn’t had many admissions before my checkup, I would be sent home. The next appointment would be three months later, and the same thing would happen — review, prescribe, and repeat.

Because I have hemoglobin SS, the most common and severe type of sickle cell disease, one of my main symptoms is vaso-occlusive crisis. I assume this is why crises were always the focus of my appointments. I wish this had not been the case, as my health management is not limited to crises. Sickle cell disease affects all aspects of my life, so focusing on only the pain was not beneficial.

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Fast-forward to the present day. I now have much more fulfilling interactions with my healthcare professionals. Learning how to take charge of my health involved some trial and error, but once I was able to begin advocating for myself, I was able to challenge my doctors to provide more than what I had been given in the past. I did all this by learning to ask the following questions.

Who is the appointment for?

I had to realize that these appointments were about my own health. My consultant doctor was supposed to address my concerns. I found myself in a better place to collaborate with my doctors by writing down any concerns I had and asking for copies of my results. In the past, I had been a passenger, desensitized by the routine nature of my appointments.

What are my other options?

Asking about other sickle cell treatment options has been a game changer for me. Finding out about future treatments and other options has given me a sense of hope. Previously, I had accepted the idea that pain medications were the only thing I could take to improve my quality of life. Although many treatments are still in development, I hope one day they will be available to everybody.

Why is this an option?

I used to never ask why I was being prescribed a certain medication. This was detrimental to me, because not all of these medications were beneficial. Finding the courage to ask why is not always easy, because we are conditioned to trust our healthcare providers. However, asking why gives us a better understanding of what we are being given and whether it is right for us.

Where else can I get support?

I’m a strong believer that there is always more I can be doing to improve my overall health, both mental and physical. Asking my doctor where else I can find support has given me options I wasn’t aware of. For instance, my doctor has now referred me to a knee specialist to treat my avascular necrosis. In the past, my only option was to take pain medications.

When do I ask questions?

Maximizing the time I have with my consultant by being prepared and asking the right questions has allowed me to make the necessary adjustments to my life. I wish I had known how to take charge of my healthcare earlier in my adult life, because I can see now how these routine checkups would have benefited me.

Investing time and energy into our health can only benefit us in the long run.


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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