December 4, 2022

Tola Dehinde

I found it interesting to read an article on sickle cell published in June 2022 in a British newspaper, The Independent. The article was about a research conducted by sickle cell patients, carers, and healthcare professionals. The survey was coordinated in late 2021 and early 2022. 855 patients, 207 carers, and 219 care professionals were interviewed.

The article noted, “Only half of the healthcare professionals feel they have sufficient tools to manage the long-term damage that sickle cell disease brings, new research has revealed.”

The research was carried out in 10 countries, including the UK, the USA, and Canada. Nowadays because of immigration and as different nationalities inter-marry, sickle cell is increasing in European countries too.

The article indicated that people living with sickle cell receive less deserved care by healthcare systems and this was because healthcare professionals did not feel they understood the illness and felt that they are failing their patients by not treating them properly.

The article added that two in five healthcare professionals said some of the issues were because of coming from ‘different ethnic backgrounds from their patients.’ The research also revealed that “patients of lower economic status can be more difficult to treat. Almost a third of healthcare professionals (31 per cent) found it challenging to understand their patients’ needs.”

I read the article despairingly and wondered how this situation could be solved. The reason for my feelings of desperation was that sickle cell was discovered in 1910 and in 2022, about 112 years later, we are still having to deal with healthcare professionals who say they don’t know how to manage sickle cell patients. There are medical professionals saying they don’t understand the illness. They also mentioned being of different ethnic backgrounds, and lastly, they said, people from lower economic backgrounds were difficult to deal with.

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

The article also referred to the fact that patients said they were treated like drug dependants, when in the hospital, as medical professionals did not believe the level of pain they were going through.

The article noted further that people living with sickle cell talk about rudeness, not being believed or listened to, and being disregarded as well as not treated as a priority by healthcare professionals, even in cases where urgent medical care was required. These various situations have led to sickle cell patients dying, which is totally unfair.

It is quite disheartening that though sickle cell was discovered over 100 years ago, such research is still being conducted. As someone who has been in and out of the hospital, I know the treatment anyone living with sickle cell gets 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 couple of months prior to my outpatient appointment.

This research is not the first of its kind. I know that this particular research came forth because of some sickle cell patients who died in the last two years in the United Kingdom. These deaths were caused by healthcare professionals’ negligence and not adhering to best practices.

On the other hand, as someone living with sickle cell, I know and understand how destabilising it is for anyone, be it a carer or a health professional to see someone having a full-blown crisis. Seeing a grown-up person or a child screaming in pain, crying their eyes out coupled with the inability to be still is a big deal. The foremost and immediate remedy for such a person, to elevate the pain, is to give him or her a strong pain injection such as morphine, while all vitals are being monitored because stroke is a common cause of death in the life of anyone living with sickle cell.

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

One major failing of healthcare professionals is their lack of interest in listening to what the patient is saying about their symptoms. Healthcare professionals must listen to their patients. Most sickle cell patients know their bodies and the crisis they are going through. If they or the carer, therefore, tell the healthcare professional, this is different, and please believe them and what they say should be acted upon. An additional point is, sometimes, healthcare professionals underestimate the severity of other complications that are not sickle cell-related.

There is also the issue concerning comparison. Can I just say that no sickle cell case is the same. The fact that one person only comes to the outpatient appointment every three months does not mean that such a person should be compared to another person with sickle cell, who comes 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 from a sickle cell crisis.

If you would like to get in touch with me about sickle cell, do so, via email: [email protected] And do check out my blog: https://www.dailylivingwithsicklecell.com/ My book on sickle cell – How To Live With Sickle Cell and my other books are available for purchase on www.amazon.com

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