How UK Hospitals Can Improve Sickle Cell Crisis Care

No one enjoys being hospitalized. I hate it when a sickle cell crisis forces me to call an ambulance. This is due to the severe pain I experience during a crisis and the fear that lingers from previous hospitalizations.

Additionally, every time I’ve been hospitalized by the National Health Service here in the U.K., I’ve faced some kind of mismanagement or further trauma. As a result, I have conflicting views about the entire process.

The process starts when an ambulance crew picks me up to take me to the hospital, and ends when I’m finally back to my average level of health. I am irritated at every step along the way.

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For example, the pain from a sickle cell crisis won’t allow me to function normally, so when I’m asked about my medical history or my vitals are checked, I struggle to communicate basic information.

It takes all my energy to remain conscious during a crisis. The combination of pain, opioids, and emotional distress make hospitalizations my worst kind of experience. I do anything I can to avoid them, although I realize how dangerous that is for my health and well-being.

In response, I’ve been reflecting on improvements I’d like to see to the process. My recommendations follow.

Improved admissions

As new technology is developed, I’d love to see a medical device that displays my medical history with ease. This device would automatically let healthcare professionals know the information required to treat me. Additionally, an organized system to alert the hospital of my arrival would be nice so that staff can properly prepare.

On several occasions, I’ve been left in a random hospital ward or faced a long wait to see a doctor. These delays on more than one occasion have caused me severe anxiety and stress, particularly when I’m facing a hospital admission. As a result, I’ll panic about the long wait to receive treatment or about where I’ll be left to suffer in isolation.

Sometimes I can predict when a sickle cell crisis is coming, so it would be great to have these processes in place. The initial triage process would feel less burdensome because my ability to communicate would be improved by the device. Similarly, if I know the hospital is prepared to look after me, it would alleviate the anxious thoughts I have before a hospitalization.

Better care

When I am hospitalized, the immediate effects of a sickle cell crisis are usually remedied with opioids, IV fluids, and antibiotics. However, often there is a disregard for environmental factors that can either support or hinder sickle cell patients in their pain management.

For example, I have been parked next to a window or a cold air conditioning unit. The cold can be damaging because I am hypersensitive to it when in a crisis, and it exacerbates the pain.

Providing us with electric blankets and hot water bottles is one solution, as heat slightly relieves the pain. Unfortunately, many sickle cell patients must pack resources like these in a hospital bag in advance to be prepared for a hospitalization. I believe that having various tools like these readily available would support patients who aren’t otherwise prepared.

Don’t forget aftercare

Once the pain of a crisis has been resolved, along with any other possible issues, I’m deemed well enough to return home and am discharged. However, the traumatic destabilization that happens during a crisis can cause long-lasting effects after discharge. The shift that happens during a crisis from being able to do everyday activities in your own space to the inability to look after yourself is physically and mentally damaging.

I would like to see an aftercare rehabilitation service that would support recovery and integration back into the world, before patients are discharged. I have often needed support to get back to where I was before a hospitalization. Having this as a standard consideration after each hospitalization would support patients like me in everyday life.

What improvements would you like to see here in the U.K., or even elsewhere? Please share in the comments below. 

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.