Being Heard in A&E With Sickle Cell: How to Advocate for Yourself
If you live with sickle cell disease, you may know the feeling: you arrive in agony, and you're left waiting, questioned about your pain, or treated as though you're exaggerating. It's not in your head. In 2021, a UK parliamentary inquiry called No One's Listening found serious failings in the care of people with sickle cell in hospital, low awareness of the condition among staff, and evidence of attitudes underpinned by racism (Sickle Cell Society). US guidance also notes that people with sickle cell disease often report providers not paying attention to their symptoms, and that stigma and bias can delay care (NHLBI).
Things are slowly changing, but it shouldn't be up to you to fix the system. Until it improves, these steps can help you get the care you need.
What you should be able to expect
NICE guidance for hospitals in England on managing acute painful sickle cell episodes says people should:
- be offered pain relief within 30 minutes of arriving at hospital
- have their pain assessed and pain relief reviewed regularly
- be regarded as an expert in their own condition, with any individual care plan taken into account
- have their oxygen levels, pulse, blood pressure, breathing and temperature checked
(NICE)
The same guidance warns that some pulse oximeters (the finger clip that measures oxygen) can overestimate oxygen levels in people with dark skin. If you feel breathless or unwell but your oxygen reading looks fine, say so.
In England, the NHS has also piloted emergency department "bypass" units in some areas, so people with sickle cell can go straight to specialist care instead of waiting in A&E. Ask your haematology team whether there's one near you, and whether you should go directly to a day unit or ward during working hours.
Before you need it
- Have a written plan. A crisis plan or individual care plan agreed with your team, saying what pain relief works for you and at what doses, is the single most useful thing to have.
- Ask your team to put a plan on your hospital record, if your hospital offers this.
- Know where to go. Find out whether your hospital has a sickle cell day unit, bypass pathway or direct-admission arrangement.
- Keep your medicines list up to date, including what you took before coming in.
Fill in your plan and download it as a PDF.
When you arrive
- Say clearly that you have sickle cell disease and are having a crisis, and how severe the pain is on a 0–10 scale.
- Show your plan and ask for it to be followed.
- Tell them what you've already taken and when.
- Ask when you can expect pain relief. If 30 minutes pass, ask again and mention the NICE guidance.
- Mention red-flag symptoms such as fever, chest pain, breathlessness or any stroke signs, so you're assessed urgently.
- Bring someone if you can. A friend or family member can speak up for you when you're in too much pain to.
If you're not being listened to
- Ask to speak to the nurse in charge or the on-call haematology team. Many hospitals expect A&E to contact haematology for patients with sickle cell disease.
- In England, contact the hospital's Patient Advice and Liaison Service (PALS), during or after your stay.
- Write things down afterwards: times, names, what was said and what pain relief you got and when.
- Make a formal complaint if needed. You can also contact the Sickle Cell Society, which campaigns on emergency care.
Speaking up while in severe pain is exhausting. You're not being difficult by asking for the care you're entitled to.
- you have severe pain with breathing difficulties or vomiting
- you have a high temperature
- you have a painful erection that won't go away, or any signs of a stroke
Call your local emergency number. Do not drive yourself. (NHS)
Frequently asked questions
This guide is general information, not medical advice. Always follow the plan agreed with your own care team. Read our medical disclaimer.
