How community nursing could benefit sickle cell patients

Many sickle cell patients spend a lot of time in the hospital. As inpatients, our symptoms are treated, and as outpatients, our lives are monitored to keep our condition as controlled as possible. However, frequent hospital visits can be highly disruptive and hinder our ability to maintain a normal life.

I, for one, would love to spend less time in the hospital.

In my previous column, I shared my thoughts on how investing in day unit services, or nurse-led pain management services, would benefit both sickle cell patients and hospitals here in the U.K.

That piece triggered various conversations across my network about how medical teams can reduce the length and number of hospital stays we as patients experience, which would hopefully improve our quality of life. But an expanded day unit service alone would not be sufficient to significantly reduce hospital admissions for sickle cell patients.

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Exploring an alternative

I am a business and change management specialist by trade, so I’m always seeking out the most efficient way to complete tasks. So naturally, I started thinking about how community nursing could make all the difference for sickle cell patients in boosting our quality of life.

Community nursing is a service in which nurses provide care to people in their own homes or in clinics close to where they live. Examples include district nurses, palliative care nurses, and blood and transport nurses.

In my healthcare utopia, in-person hospital visits would be reserved for high-priority issues. Regular checkups, blood tests, and even lower-level symptom management (such as early acute crisis intervention) would be undertaken in the community.

Why staying out of the hospital matters

Being in the hospital affects a patient’s dignity in ways people tend not to think about. A small but real example: Picture a large, open emergency department with beds segmented only by curtains. If you need to use the toilet during the height of a crisis, there are three options:

1. Persevere through the pain and try to walk to the nearest toilet.
2. Use a commode. However, this depends on commode availability and whether staff can get one to you in time. Everyone in your vicinity will also know when you’re using the toilet.
3. Use a bedpan. Unfortunately, not messing yourself requires immense balance and skill, which is extremely difficult when in pain. Also, staff need to be available to help you get on and off the bedpan in a timely manner.

None of these options sound like my idea of fun — especially compared with being at home, where I have equipment in place to help me navigate personal care while unwell.

A community nursing service that provides me with early intervention acute pain relief at home would be ideal. This would permit me to enjoy the comforts of home, maintain my dignity and privacy, and spend less time away from friends and family while fighting acute pain. Additionally, it would likely save the cash-strapped National Health Service money, as fewer sickle cell patients would be taking up hospital beds.

As a patient, I’d appreciate more options for community-based care and treatment, but I think schools, employers, family, and friends would benefit, too. Reducing hospital stays would significantly reduce disruptions. Plus, we’d be able to avoid the negative impact hospitalizations can have on mental health.

Let’s keep the conversation going

I appreciate that this is just one viewpoint.

I suspect that the idea raises some concerns for health professionals. For example, opioid narcotics, which are often used to treat sickle cell crises, can have potentially life-threatening side effects if administered with inadequate supervision from medical professionals. Some may argue that adequate supervision is only possible in the hospital with specific equipment on hand.

Sometimes we simply accept the way things are because that’s how it’s always been. But it’s important to review systems and consider if we’re still doing the right thing, or if a little change is necessary to make the system more efficient and effective.

Does your hospital offer community nursing for sickle cell patients? If so, how does it work? Do you find you have fewer admissions as a result, or is the service inconsequential? I’d love to know.

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.