How to Advocate for Yourself in Emergency Care With a Chronic Condition

Why this matters

In emergency settings, clinicians are working quickly with limited information. They may have limited familiarity with the condition, no access to the full history, and incomplete understanding of what’s normal versus what’s new. The responsibility for bridging that gap often falls on the person in front of them, which is difficult when feeling seriously unwell.

Communicate clearly from the start

Stay calm. Emotional distress is understandable, but clear communication is more effective. Provide relevant medical history early: diagnosis, current medications, previous complications, and what’s specifically different about today. Being specific matters. "I have lupus, I’m on immunosuppressants, and I had nephritis two years ago. My symptoms have worsened significantly over three days", gives the team something concrete to work with.

If too unwell to communicate effectively, a family member or friend can advocate. Having someone who knows the key information can change the quality of the assessment significantly.

Know what to ask for

If the assessment feels incomplete or concerns haven’t been addressed, asking directly is appropriate. Specific questions tend to be more effective than general ones:

• "What have we ruled out with these tests?"
• "What else could cause these symptoms?"
• "Why is this symptom not concerning, given my medical history?"
• "What would need to change for you to admit me or investigate further?"
• "Could a senior doctor review me before discharge?"
• "I have vasculitis. Could the on-call rheumatology or vasculitis team review my case?"

These aren’t confrontational. They are clinically relevant, and most teams will respond constructively.

Before leaving

Ask for explicit safety netting: "What symptoms would mean I should come back immediately?" and "Who should I contact for follow-up and how quickly?" Request written discharge documentation covering what was assessed, tests done, what was ruled out, and the follow-up plan. Written instructions are more reliable than verbal ones.

If sent home, but symptoms worsen

Returning to A&E is always an option. Attending more than once is appropriate if the clinical picture changes. Following up with the GP promptly after any A&E visit ensures the assessment is documented and continuity of care is maintained.

What you could do

Preparing key information before a crisis removes the burden of having to recall it when unwell.

• Keep a medication list accessible at all times, including doses, diagnoses, and specialist contact details
• If someone else may need to advocate, make sure they know what to communicate and when to push back
• If discharged but symptoms worsen, returning to A&E is always an option and is appropriate

This article is for general information purposes only and doesn’t constitute legal, financial or benefits advice. For advice specific to your situation, please speak to a qualified professional or contact an organisation such as Citizens Advice, who may be able to assist you further.

References:

‘Effective discharge communication in the emergency department’ (2012) https://doi.org/10.1016/j.annemergmed.2011.10.023

‘Patient-centered care and outcomes: a systematic review of the literature’ (2013) https://doi.org/10.1177/1077558712465774