How to Create a Sickle Cell Crisis Care Plan: My Tips for Caregivers

In my last column, I provided some caregiving tips to help people support loved ones with sickle cell disease. One thing I suggested is having a crisis care plan in place, though I haven’t yet prepared one myself. The goal is to help those who are unfamiliar with the disease or still learning how to care for a loved one effectively.

Access to medication and supplies

In planning for a crisis, it’s essential to know what the patient will need. Easy access to treatment can be crucial in reducing the event’s duration, and other supplies can help keep them comfortable.

Most of my crises happen at night, when I’m at home and can easily access my medications and comfort items. However, the unpredictable nature of crises means they can happen anywhere, so it’s important to be prepared. As a caregiver, you might consider how easily you can access the patient’s medications, hot water bottle, fluids, or anything else they may need during a crisis.

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Pain scores

Before a crisis, establish what different pain scores mean for your loved one with sickle cell, and which number means it’s time to go to the hospital. For example, when my pain score is at five or below on a scale of one to 10, I feel I can manage at home. At six or seven, I should consider going to the hospital. A score of eight or above will require me to be admitted.

Check in with the patient frequently about their pain level. Ask them about the intensity and location of the pain. The patient will know best how they’re feeling, so engaging with them is vital. However, they may get irritated by frequent questioning, so try to space it out or only ask when their discomfort becomes more visible.

Record-keeping

Before a crisis, you should have an electronic protocol on hand that details the medications and dosages required during a hospital admission. If not, encourage the patient to ask their doctor for one in case they need to go to a different hospital than usual. When I had a crisis abroad, for example, a protocol helped doctors ascertain the correct dose to start treating me.

Please keep a record of the patient’s general information and medications. If they need to go to the hospital, it’s essential to have this information available, as the paramedics will ask for it during triage. Often patients are unable to communicate everything due to pain, so this is when you can advocate for them as a caregiver.

Hospitalization

Before a hospital admission, establish which items the patient might need for their stay. Depending on the person, these may vary from comfort items like blankets and hot water bottles to practical things like laptops and chargers. You should also establish what level of care they require, so you can advocate for them if the care they receive doesn’t meet those standards.

Knowing what the patient needs during a hospitalization can give caregivers confidence in overseeing their loved one’s care. A crisis puts the patient in a vulnerable position; unfortunately, not all hospital care is perfect. A hospital bag may seem like a small gesture, but it can significantly affect the quality of their stay.

Recovery

Recovering from a crisis looks different for everyone. It will take the patient longer to heal if they experienced any traumatic events at the hospital.

From my own experience, even simple tasks such as walking upstairs can exhaust me during recovery. I struggle to get back to where I was and still give myself grace.

During the recovery stage, it can be difficult to gauge the patient’s mobility and mental well-being. The patient will become more autonomous with each day, but finding balance is essential. Therefore, be sure to talk with your loved one about how you can aid in their recovery.

What would you include in a crisis care plan? 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.