How to be heard in the ER and at appointments when you have sickle cell

On April 27, Cells members met online for a session called “Is My Doctor Even Listening?” The title named something many people living with sickle cell know well. No scan or blood test measures pain, so the person in pain has to describe it, often while exhausted and frightened.

Many people with sickle cell report having their pain doubted, waiting a long time for relief or being treated as if they were seeking drugs. Ontario’s clinical handbook on sickle cell crises states that racism toward patients with sickle cell exists and must be addressed in clinician education. You cannot control how every clinician responds, but you can arrive prepared.

Know the standard of care

Ontario’s handbook says a person in a sickle cell pain crisis should be treated as an emergency, with pain treatment started within 30 minutes, and that the best assessment of pain severity is the patient’s own. American Society of Hematology guidelines recommend assessment and pain relief within an hour of arrival, then reassessment every 30 to 60 minutes.

These targets are often missed: a 2023 study at a Toronto hospital found that only about 5 percent of emergency visits for sickle cell pain met the 30-minute goal. Knowing the standard helps you ask calmly about timing.

Say it clearly, and early

Tell the triage nurse right away that you have sickle cell disease and are in a pain crisis. Keep it short and specific, for example:

• “I have sickle cell disease and I am in a pain crisis. My pain is 9 out of 10, in my back and legs.”
• “This is not my usual pain. I also have chest pain and trouble breathing.”
• “I have an individualized care plan from my hematologist. Can you please follow it?”
• “My hematologist is Dr. [name] at [hospital]. Can you contact the hematology team on call?”
• “When will my pain be reassessed?”

Bring your care plan and a support person

An individualized care plan is a short document from your hematology team listing your diagnosis, the treatments that work for you and who to contact. Ontario’s handbook says every person with sickle cell should have a plan developed with their sickle cell care provider. If you do not, ask at your next clinic visit, and keep copies on your phone and in your bag.

A support person can describe what they have seen, keep track of what you were told and speak up when you are too exhausted to. Agree beforehand on what they should ask for, such as a reassessment or a call to hematology, and check the hospital’s visitor rules.

Keep a symptom and pain record

A simple record turns a hard-to-describe experience into clear information. Keep it in a notebook or notes app, and bring it to the ER and clinic visits.

• When the pain started, where it is and how it rates from 0 to 10
• What you took at home, when, and whether it helped
• Other symptoms, such as fever, chest pain, shortness of breath or headache
• Possible triggers, such as cold, dehydration, stress or illness

At regular appointments

Self-advocacy is easier in a calm clinic room than in a crowded ER. Write down your top three questions and ask the clinician to explain anything that is unclear. Before you leave, ask what to do if your pain is not controlled at home, and get the answer in writing.

If you feel dismissed

Stay as calm as you can and ask direct questions: what is the plan for my pain, and when will it be reassessed? If that does not help, ask to speak with the charge nurse, and write down names, times and what was said.

Most hospitals and health authorities in Canada have a patient relations or patient concerns office, which you can contact during your stay or afterward. For concerns about a specific clinician’s conduct, each province has regulatory colleges that accept complaints.

Being doubted takes a toll. Registered Cells participants in Canada who attend at least one Cells meeting each quarter can access free therapy, and Cells is a place to talk with people who understand. NotJustYou also supports Bill S-201, now before the House of Commons, which would create a national framework on sickle cell disease that includes training for health professionals; read about our advocacy.

Questions people ask

This article is general information, not medical advice. Talk to your own hematology team about your care. In an emergency, call 911.