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An ER visit for sickle cell disease (SCD) can be especially difficult when you’re already in severe pain. Some people with SCD have faced long waits, pain that wasn’t treated adequately, or pain that healthcare professionals may not have taken seriously enough.
Preparing ahead can make it easier to share important information and speak up for the care you need. An individualized pain plan, your medical information, and support from someone you trust can all help during an emergency visit.
Not every SCD pain crisis requires an ER visit. Some pain can be managed at home using your usual treatment plan. However, hospital care may be needed if your pain becomes severe or hard to control.
You may also need emergency care if your symptoms could be caused by an infection, acute chest syndrome (a serious lung problem), stroke, or another complication.
Some symptoms shouldn’t wait for a routine appointment or for a crisis to improve on its own. Seek emergency medical care if you experience signs or symptoms such as:
Work with your hematologist or sickle cell care team to create an individualized pain plan. This plan tells ER staff how your pain is usually treated and what has worked for you before.
The plan may include medications and doses that have worked for you in the past, medications to avoid, allergies, your typical pain experience, and other relevant treatment information.
Review the plan with your healthcare team and update it whenever your medications, treatment needs, or health history change.
Knowing where you can get sickle cell care ahead of time can make it easier to decide where to go during an emergency. You can ask your hematologist or primary care provider for recommendations for specialized care in your area.
You can also use the Sickle Cell Disease Association of America’s member finder to find local sickle cell organizations for referrals. Save the addresses and phone numbers of your preferred facilities on your phone so you can quickly access them when emergency care is needed.
Keeping important medical information in one place can help ER staff quickly understand your health history and make informed treatment decisions, especially when pain or illness makes it difficult to answer questions. Keep an updated copy on your phone, in a patient portal, or in a folder you can bring with you.
Include important information such as:
Having a few essential items ready can make an unexpected ER visit easier to manage. Bring an updated medication and allergy list, identification, insurance information, a record of your blood type, and any relevant medical records that may not already be available to the hospital.
Consider bringing a water bottle if you’re able to drink fluids, along with a phone charger and other personal necessities you may need during a long visit.
If possible, ask someone you trust to come with you. A family member, friend, or caregiver can provide support, help explain your usual care, take notes, and speak up for you if severe pain makes it hard to communicate.
When you arrive at the ER, explain when your symptoms began and whether they feel different from what you usually experience during a pain crisis. Describe your current pain level, where the pain is located, and any other symptoms you are experiencing. Clear details about what has changed can help the care team understand your current needs.
If you have an individualized pain plan, show it to the ER team when you arrive. Tell them what usually works for your pain and whether today’s symptoms are similar to or different from your usual pain crisis.
Tell the ER staff what pain medicine you’ve already taken, how much you took, and when you took it. Share which treatments have helped control similar pain in the past and whether certain medications have not worked well for you.
Share other important parts of your sickle cell history too. This can include recent hospital stays, blood transfusions, past complications, and major changes in your health.
When you arrive at the ER, you will usually go through triage. A healthcare professional will ask about your symptoms and check your temperature, blood pressure, heart rate, and oxygen level.
If you come to the ER with severe SCD pain, treatment should start quickly. The American Society of Hematology recommends that people with acute SCD pain be assessed and given pain medicine within one hour of ER arrival, with pain reassessed every 30 to 60 minutes.
The ER team may order tests to find out what is causing your symptoms and check for sickle cell complications. These may include blood tests, urine tests, or imaging such as a chest X-ray, particularly when symptoms suggest an infection, acute chest syndrome, or another complication.
After your first treatments and tests, the healthcare team will monitor your symptoms and response to treatment. Depending on your condition, you may stay in the ER so the team can monitor you, be admitted to the hospital for continued care, or be discharged with instructions for managing your symptoms at home.
Some people with SCD experience delays in pain treatment or feel that their pain isn’t taken seriously. People with SCD may also face bias or be unfairly treated as though they are seeking drugs rather than care for severe pain.
If you feel your pain is being dismissed or treatment is taking too long, show the care team your individualized pain plan. Explain what treatments have worked for you before. You can also ask:
If someone you trust is with you, they can also help ask questions and explain your usual care when pain makes it hard for you to speak for yourself.
Ask questions if anything about your care is unclear. If you have an individualized pain plan, ask the ER team to review it, especially if it lists treatments that have worked for you before.
If severe pain makes it hard to speak up for yourself, ask a trusted family member, friend, or caregiver to help. Your hematologist, a social worker, or a patient advocate may also be able to support you.
Before you leave, make sure you understand your discharge instructions, including how to take any medicines, how to manage symptoms at home, and when to return to the ER.
Follow up with your sickle cell care team, especially if your symptoms continue or your treatment has changed. Talk about what worked, what didn’t, and whether your pain or emergency plan should be updated.
You may also need help with transportation, medical costs, caregiving, or stress after a difficult ER visit. A social worker or sickle cell organization may be able to connect you with support.
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