How caregivers can advocate for their loved one at a sickle cell appointment

Note: Dunstan Nicol-Wilson lives with sickle cell disease and is a columnist for Sickle Cell Disease News. 

A hematology appointment may last only 20 or 30 minutes, but the decisions made during that time can shape the months that follow. As a caregiver, your preparation and observations can help ensure those decisions reflect everyday life. You know the day-to-day reality of the person you care for in a way no blood test or clinic summary ever can.

This article aims to guide caregivers in how to advocate for someone with sickle cell disease. Read on to learn how to come into appointments prepared, communicate clearly with your hematology team, and leave with a shared plan instead of unanswered questions.

Preparing: What to bring and track

One of the biggest lessons I’ve learned over my years of having sickle cell is that hospital records only tell part of the story.

Hematologists usually will know if their patient has been admitted to the emergency department, but they won’t necessarily know about the pain crises managed at home, the days of school or work that were missed, or the moments when your loved one struggled but decided not to seek medical care.

For many people living with sickle cell disease, managing pain at home has become the default. Sometimes that’s because previous healthcare experiences have made the hospital feel like a last resort. Unless those episodes are discussed in the clinic, they can easily be overlooked.

Your loved one’s experience outside the hospital is valuable data to the doctor because it illustrates the effectiveness of a treatment plan. So, for every appointment, I recommend bringing:

• a log tracking symptoms since the last visit
• any emergency department or urgent care records
• notes from school or work if sickle cell has affected attendance or performance

That symptom log is especially important. Rather than focusing on describing one particularly bad crisis to your healthcare team, present to them trends you’ve tracked over time. Patterns often tell a much more accurate story than isolated events, and help your hematology team decide whether the current treatment plan is working or whether additional tests or therapies should be considered.

For example:

• How many pain episodes have occurred?
• Have they become more frequent or more severe?
• How many days of school or work have been missed?
• Have there been chest infections or other complications?
• Have medications felt more or less effective?

Before you walk into the appointment, write down your top two or three discussion priorities. Clinic time is limited, so it’s easy to leave without discussing the issues that mattered most.

How to advocate for your loved one in the clinic

You don’t need medical training to advocate effectively.

One thing that helps is starting the appointment with a clear agenda.

You can say something as simple as, “I want to make the most of our time today. Since our last visit, we’ve tracked three pain episodes and two missed school days. We’d like to talk through what we’re seeing and whether anything in the care plan needs to change.”

When talking to hematologists, leading with tangible facts rather than vague concerns makes the conversation more productive. Instead of saying, “It’s been a difficult few months,” try saying “There have been three pain crises in two months, each leading to several missed school days.”

I also encourage caregivers to involve the person living with sickle cell in the conversation as much as possible. There’s a difference between advocating for someone and speaking over the person. As children grow older, caregivers should support rather than replace their loved one’s voice.

Before the appointment, it helps if caregivers ask their loved ones if there’s anything they want to raise themselves with the care team. Our loved ones’ priorities may differ from ours, and making space for their voice helps ensure the appointment reflects both their experience and our observations.

After the appointment, before leaving the room, repeat the plan back in your own words: “Just to make sure I’ve understood correctly …” Then, summarize the agreed-upon plan. This simple step helps ensure everyone leaves with the same understanding.

What to do when concerns are overlooked

Many people living with sickle cell know what it feels like to have their pain questioned or their concerns dismissed. If you feel you or your loved one’s concerns aren’t being heard, stay calm and be specific.

If a concern isn’t verbally affirmed and given the attention it deserves, ask whether it can be documented in the medical record. Sometimes simply asking, “Could we note this in the chart?” encourages a more thorough discussion.

One thing I’ve learned throughout my own care is that treatment shouldn’t simply be based on what works for someone else, but also on what works for me. For example, I don’t take penicillin every day, despite it being the standard recommendation for many patients in my country, England. Through conversations with my hematology team, we agreed on an approach that was more appropriate for me. That decision wasn’t about rejecting medical advice; it was about tailoring treatment to the individual.

It’s OK to say what does and does not work for your loved one. That’s something every caregiver can help advocate for.

Also, don’t be afraid to seek a second opinion when major treatment decisions are being made. Frame it to your hematologist as wanting to better understand your options. Hematologists don’t always agree, and weighing differing insights can help you make more informed decisions about care.

Essential next steps

• Build a visit folder. Have one place where you keep together medication lists, symptom logs, clinic letters, questions, and lists of next steps.
• Practice your opening statements. Before each appointment, give your opener a run-through so you can lead with clear information.
• Choose one or two key advocacy phrases. Have a statement or phrase that you feel comfortable using if you ever feel unheard.
• Before leaving, repeat back the agreed-upon plan. Going over the agreed next steps with your healthcare team ensures everyone shares the same understanding of the care plan.

Hematology appointments are more than routine check-ups. They are an opportunity to reflect on what has happened since the last visit, make informed decisions, and prepare for the months ahead.

Learning how to advocate for someone with sickle cell disease takes time and practice, but it’s worth the effort. Remember, as a caregiver, you’re an expert on the person you support. Your voice is needed. Your preparation, your observations, and your willingness to speak up can help ensure that every appointment delivers care tailored to the individual and not just the condition.

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Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.