Ask your hematologist or SCD care team to help create an individualized pain plan. Keep a printed copy and a digital copy on your phone. It may include treatments that have helped, medications to avoid, allergies, and contact information.

You can also review pain-crisis planning. Update your plan when your health history changes.

Keep a current list of prescription medicines, over-the-counter medicines, and supplements, including doses and when you last took each medicine. Include any medication allergies.

Save it on your phone, print it, or give a copy to a trusted person. Review the list whenever something changes.

When it’s safe to do so, ask your hematologist or on-call SCD clinician whether they can contact the ER. Communication between your regular care team and ER staff can help the ER team understand your medical history and usual treatment plan.

A call may help staff locate your care plan, but it can’t replace immediate emergency care.

If possible, ask a family member, friend, or caregiver to come with you or stay available by phone. They can help explain your usual symptoms, take notes, remember questions, and speak up when pain makes communication difficult.

Bringing someone who understands your chronic pain experience may make it easier to explain what feels different about this visit. Your support person should add to your voice, not replace it.

Check whether your patient portal or electronic medical record has your current pain plan, medication list, allergies, and hematologist’s contact information. Tell ER staff where the information is located, and bring paper copies if you can.

Records may not transfer between systems, so having a copy on your phone or a printout can be useful. Keeping emergency information updated and accessible can help.

An ER letter or individualized care plan can summarize your diagnosis, baseline information, past complications, allergies, and how to reach your care team. Keep a copy in your wallet, on your phone, or in a go-bag. It’s a communication tool, not a guarantee that every clinician will follow the same approach.

When your symptoms allow time to decide, ask your care team which hospitals or sickle cell centers have experience with SCD. Save the address and phone number.

Even at a familiar hospital, you may see new staff or run into gaps in outside records, so bring your plan. Care coordination can help ER teams access patient-specific information.

If you have chest pain or trouble breathing, seek emergency care right away rather than delaying to reach a familiar hospital.

If you feel overwhelmed, ask whether the hospital has a patient advocate, social worker, case manager, or sickle cell navigator. They may help with communication, records, follow-up, transportation, or other practical needs. Support varies by hospital.

It can also help to ask about everyday support before a crisis happens.