Why We Need Better Doctor-patient Communication

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by Mary Shaniqua |

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It has been a while since I last wrote. This is because unfortunately, I had another hospital admission. I was admitted in mid-April and discharged last week, so I was hospitalized for quite some time.

I had a sickle cell crisis, although I’m uncertain about what caused it. I have written previously about my main triggers for crises, but none of these were present this time around. I wasn’t stressed and I hadn’t contracted an infection. I felt exhausted, but I wasn’t due for a transfusion at the time I went into crisis.

We’ve had a decline in the weather here in the U.K., which has been wet and cold despite it being spring. However, I hadn’t been outdoors much around that time, so I doubt the crisis was triggered by the cold.

It is so important to me to know the cause of a sickle cell crisis. This is so I can be aware of any adjustments I may need to make to my life.

My latest crisis doesn’t seem to have been triggered by anything “serious,” which is why I am so angry that I ended up in the hospital for such a long time.

There is some background to this. I bought my home in 2018. When buying a home, no one advises you about the boundaries of ambulance service. My house is outside the zone for the hospital where I receive specialist treatment, so ambulances must take me to a different hospital that doesn’t have a hematology unit.

I had previously been admitted there, and unfortunately, my latest stay wasn’t any better than the previous one. Without going into too much detail, I will say that I believe my hospital stay was longer than necessary, likely because I wasn’t being listened to.

I was denied medication I usually take, but luckily, I encountered a doctor who had previously treated me at a different hospital. She changed my treatment to better align with my care plan. Eventually, I improved enough to go home, not long after this change was made. Thank God for helpful doctors.

I can’t stress enough how important it is for medical personnel to listen to sickle cell patients when we speak. I think this is especially true if they are not hematology specialists.

Recently in the U.K., a judicial inquiry has started into the unfortunate death of Evan Smith, a 21-year-old sickle cell patient who was denied the treatment he knew he needed. It cannot be stressed enough that patients need to be listened to, particularly when the patient has a condition that requires specialist treatment, such as sickle cell disease.

It appears I may have some permanent damage to my right hip, which I assume was caused by prolonged crisis. I have avascular necrosis, but I previously only had experienced issues in my left hip. Now, my right hip has been in agony.

I am hopeful the damage can be reversed, and I have arranged for intensive physiotherapy, starting next month. In the meantime, I rely on walking aids to get around.

Another thing that often is overlooked in sickle cell treatment is promoting good mental health. Usually, if someone experiences trauma, or perhaps a near-death experience, good mental well-being would be a priority. I’ve found that this seldom happens with sickle cell patients.

My mood has been low as a result of the recent hospitalization and the possibility of long-term damage to my body, which I believe could have been avoided. But what’s done is done, and I am trying to look ahead. I’m hopeful that my hip will improve, and I won’t suffer long-term mental consequences.

I’m taking it one day at a time and trying to learn my new reality so that I can function as close to my previous reality as possible. I look forward to being well enough to socialize with friends and return to work at some point. Moving forward, I also will factor in access to hematology centers when looking for somewhere to live.

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Note: Sickle Cell Anemia 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 Anemia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell anemia.

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