Last week, I wrote about the difference between compliance and advocacy in sickle cell care. I argued that asking questions doesn’t make someone a difficult patient, and that following instructions without understanding them shouldn’t be our definition of good healthcare. But recognising the importance of advocacy is one thing. Knowing how to advocate effectively is another.
Self-advocacy is not about entering the hospital prepared to argue. Nor does it mean assuming that healthcare professionals are against you. It means learning how to participate confidently and constructively in decisions about your health. For those living with sickle cell disease, this skill can be invaluable.
One of the simplest ways to advocate for yourself is to know your medical history as well as you reasonably can. Know the names of your regular medications and why you take them. If you have allergies or have experienced significant reactions to particular medicines, know them too.
If you cannot remember everything, keep a written or electronic record. SCD can involve different hospitals and healthcare teams. You may meet a clinician who has never seen you before. Being able to explain your history clearly can help them understand you more quickly. You do not need to become a doctor. You simply need to become informed about your own health.
Appointments can go surprisingly quickly. You may enter the room with five questions and remember only one. Write them down beforehand. Questions might include, “What is the purpose of this treatment?” “What are the benefits and possible risks?” “Are there alternatives?” “How long will I need to take it?” “What should I do if I experience side effects?” “What happens if I decide not to have this treatment?”
These questions are not disrespectful. They help you understand what you are agreeing to. And if you do not understand the answer, say so. Medical terminology can be complicated. There is no prize for pretending you understand something when you do not. “Could you explain that in simpler terms?” is a perfectly reasonable request.
People living with chronic illnesses often become highly aware of changes in their bodies. If something feels different, say so. You might say: “Normally when I have a crisis, the pain behaves like this, but this time it feels different.” That information matters. Similarly, if a treatment has caused problems before, explain what happened. A useful phrase can be, “I understand what you are recommending, but my previous experience with this treatment was…”
This communicates two things at once. You have heard the clinician, but you are also giving them information that may be relevant to the decision. There are times when advocacy is difficult because you are simply too unwell to do it. During severe pain, a crisis or an emotionally difficult consultation, absorbing information can be hard.
Where possible, consider taking a trusted relative, friend or advocate to an important appointment. They can listen, take notes, remind you of questions and help you remember what was discussed afterwards. Advocacy does not always mean speaking for yourself. Sometimes it means ensuring that somebody trustworthy can help you speak when you cannot.
There may be occasions when you and your healthcare professional disagree. That does not automatically mean either side is wrong. Ask why they are recommending a particular course of action, explain your concerns and ask what alternatives exist.
If you remain uncertain about a significant decision, it may be appropriate to ask whether you can have a second opinion. The aim is not to “win” the consultation. The aim is to reach the safest and most appropriate decision about your health.
There is also a wider meaning to advocacy. When people with SCD speak about delayed pain relief, stigma, inadequate services, lack of knowledge or inequalities in healthcare, they are advocating not only for themselves but potentially for others.
When families learn about SCD and challenge misinformation, that is advocacy. When patient organisations campaign for better services and research, that is advocacy.
And when healthcare professionals listen to patients and use their experiences to improve services, they become advocates too. This is why patient voices matter. There must also be balance. Being an advocate does not mean rejecting every recommendation or assuming that personal experience is more reliable than medical evidence. Just as clinicians need to listen to patients, we must also be prepared to listen to professional advice.
Partnership requires respect in both directions. For me, that is where we need to move the conversation around SCD care. Away from: “Do what you are told.” Towards: “Let’s discuss what is best for you.” Patients should be informed enough to ask questions, confident enough to raise concerns and humble enough to listen when medical expertise is needed.
Healthcare professionals should be able to provide their expertise without making the patient feel powerless. After all, the person living with the consequences of every healthcare decision is the patient.
The goal of healthcare should therefore not simply be to produce obedient patients. It should be to create informed, engaged patients who are confident enough to become partners in their own care. And sometimes, finding your voice can be an important part of finding better care.