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Sickle Cell Disease and Medical Care

I found it interesting to read an article on sickle cell disease published in June 2022 in a British newspaper, The Independent. The article focused on research conducted by sickle cell patients, caregivers and healthcare professionals. The survey was coordinated at the end of 2021 and beginning of 2022. 855 patients, 207 caregivers and 219 healthcare professionals were interviewed.

The article noted: “Only half of healthcare professionals believe they have sufficient tools to manage the long-term damage caused by sickle cell disease, new research has found.”

The research was conducted in 10 countries, including the UK, US and Canada. Nowadays, due to immigration and the fact that different nationalities marry, sickle cell disease is also increasing in European countries.

The article stated that people living with sickle cell disease received less deserved care from healthcare systems and this was because healthcare professionals did not feel they understood the disease and felt they were leaving down their patients by not treating them properly.

The article added that two in five medical professionals said some of the problems were due to them coming from “different ethnic backgrounds than their patients”. The research also found that “patients of lower economic status may be more difficult to treat. Nearly a third of healthcare professionals (31%) found it difficult to understand the needs of their patients.

I read the article in despair and wondered how this situation could be resolved. The reason for my feeling of despair was that sickle cell disease was discovered in 1910 and in 2022, some 112 years later, we still have to deal with medical professionals who say they don’t know how to manage sickle cell patients. There are medical professionals who say they don’t understand the disease. They also mentioned that they were from different ethnic backgrounds, and finally, they said that it was difficult to deal with people from economically disadvantaged backgrounds.

The article reveals the racial inequality of living with sickle cell disease, all over the world. There are approximately 100 million people living with sickle cell disease worldwide and in these countries sickle cell patients still experience prejudice and intolerance.

The article also referred to patients saying they were treated like drug addicts while in hospital because medical professionals did not believe the level of pain they were experiencing.

The article further noted that people living with sickle cell disease speak of being rude, not being believed or listened to, and being ignored and not given priority treatment by healthcare professionals, even in when urgent medical attention is needed. These different situations have led to the death of sickle cell patients, which is totally unfair.

It is quite disheartening that although sickle cell disease was discovered over 100 years ago, such research is still ongoing. As someone who has been hospitalized and discharged, I know that the treatment anyone living with sickle cell disease receives is poor. In fact, a few months ago I made a verbal complaint to my consultant about the treatment I received when I came to the pain clinic a few months before my outpatient appointment.

This research is not the first of its kind. I know that this particular research came about because of some sickle cell patients who died in the last couple of years in the UK. These deaths were caused by the negligence of healthcare professionals and failure to follow best practices.

On the other hand, as someone living with sickle cell disease, I know and understand how unsettling it is for anyone, be it a caregiver or a medical professional, to see someone go through a crisis full share. Seeing an adult person or a child screaming in pain, crying eyes coupled with the inability to stay still is a big deal. The most important and immediate remedy for such a person, to elevate the pain, is to give him a strong injection of pain like morphine, while all vital signs are monitored because stroke is a common cause of death in the life of anyone living with sickle cell disease. cell.

Over the years, medical professionals have said that people with sickle cell disease do not live past a certain age. This is no longer the case, as we have people who live to be 80 and over, despite being diagnosed with sickle cell disease.

One of the major flaws of health care professionals is their lack of interest in listening to what the patient is saying about their symptoms. It is important for the healthcare professional to listen to his patients. Most sickle cell patients know their bodies and the crisis they are going through. If they or the caregiver tell the healthcare professional, that’s different and please believe them and what they say should be acted upon. An additional point is that sometimes healthcare professionals underestimate the seriousness of other complications that are not related to sickle cell disease.

There is also the matter of comparison. Can I just say that no case of sickle cell disease is the same. The fact that a person only comes to the outpatient department every three months does not mean that such a person should be compared to another person with sickle cell disease, who comes in for admission a few times a month.

In view of the tablets that are now on the market, it is really not excusable for any patient diagnosed with sickle cell to die of a sickle cell crisis.

If you wish to contact me about sickle cell disease, do so by e-mail: [email protected] And check out my blog: https://www.dailylivingwithsicklecell.com/ My Sickle Cell Book – How to Live with Sickle Cell and my other books are available for purchase at www.amazon.com

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