Finding Your Voice in the Healthcare System: How to Advocate for Your Child

By Charlotte Klinepeter, KIF1A Mom and KIF1A.ORG Administrative Manager

Wouldn’t it be nice to call the shots as a patient in the healthcare system? As a parent of a child diagnosed with a rare, progressive disorder, I’ve experienced my fair share of uncomfortable and downright frustrating interactions standing face to face with medical professionals who were “right” about my child’s needs. Interesting how that works sometimes, isn’t it? I spend every waking moment being a caregiver, advocate, and mom, but I’m the uninformed one in the room. Maybe you can relate.

When Doctors Won’t Listen: Charlotte’s Story

As parents, my husband and I knew something was unusual with our son’s development as early as 6 months. We noticed things like his low muscle tone and his inability to bring his hands together or follow an object with his eyes. At the time, we were told all babies develop differently and to let things take their course. His pediatrician told us not to worry that his head circumference didn’t grow between appointments, but when we returned for our follow-up 3 months later, nothing had changed. Around this time, he was also diagnosed with failure to thrive.

As our son learned to walk around 2 years of age, he constantly fell, lost his balance, and couldn’t sit up without falling backwards onto his head. He still couldn’t track objects or use a pincer grasp (a skill often developed around 9 months old), and he often choked on food.

At one point in our diagnosis journey, I called our provider’s office in tears, begging for yet another appointment. We saw the pediatrician once again and I vividly remember being told, “Sometimes children have developmental delays and there’s simply no explanation.” Doubt and dismissal of our concerns made my husband and I question ourselves often. But in this moment, the dismissal of our concerns confirmed what we knew. This was not just a delay. Only a medical condition could be causing these issues. We needed to fight harder and seek an answer.

We continued our efforts to find a cause. Our guts and persistence thankfully led us in the right direction: to doctors with empathy and persistence of their own. Without these doctors, I’m not sure when, or if, we would have found our son’s diagnosis. Even with multiple specialists, it took time.

It wasn’t until our son was 4 years old, after multiple years of testing, persistence, and invested professionals that we finally received our diagnosis: KIF1A Associated Neurological Disorder. Not a week goes by that I don’t think about the doctors who called me after hours to talk through test results; those who thoroughly examined my son and all of his symptoms in order to know what the right tests were to run for him; and the support they had to offer us after the diagnosis. The answers were out there. Persistent doctors were out there. We just had to find them first.

We know in comparison to many, our search was relatively short. While we are grateful, I also realize that no one should have to wait any length of time to find answers. If you are missing a piece of the puzzle or you feel misled, it’s time to be heard!

How to Be Heard in the Healthcare System

When our needs aren’t met and our voices aren’t heard by healthcare providers who we are expected to trust, skepticism becomes easy. I know this firsthand from my family’s experience. And sadly, I’m not alone.

Many of us are not medical experts and we rightfully rely on those who spent years in medical school to help us make the best choices for our loved ones. Are we expecting too much to also require them to allow us a safe space to address our concerns or uncertainties? No. Should “bedside manner” really be an expectation? Yes. Is it okay to take a step back and evaluate your family’s needs when you aren’t receiving what you need from your doctors? Big YES.

A simple solution might be to try to find a different provider. But most of us don’t have the luxury of changing doctors, or even choosing which doctors our loved one sees. Maybe it’s because of insurance coverage restrictions, or there are no other feasible options within an appropriate distance from your home. For many rare disease families like mine, it’s because doctors qualified to treat the conditions and disorders our loved ones are diagnosed with are few and far between.

Tips to Advocate for Your Child at the Doctor’s

When choosing a different provider is not a possibility, what’s the best way to develop a platform to be heard? You shouldn’t have to scream from the rooftops. Below are a few things that helped me advocate for my child while searching for a diagnosis, and throughout the treatment process.

Persistence is Key

For our family, persistence was the key to being heard. Medical professionals deserve respect just as we all do, but this doesn’t mean patients and their caregivers can’t be respectfully persistent. As caregivers, we know in our guts when something isn’t right. We may not always know the answer, but we know when we need to act. Whether it’s a rare, spectrum-type disorder or a common illness, our individualized needs matter and patient perspectives need to be at the forefront. Dismissive providers can make us question ourselves and whether the effort put forth is necessary, but persistence affirms your commitment, and that their dismissal will not sway you from seeking answers.

Build Rapport with Support Staff

In our personal experience, we have found some of the most important people within a provider’s office to develop rapport with are the front office staff. While they may not be the ones writing prescriptions or telling you what equipment needs ordered and what medicine to take, they are the key to your phone calls and messages being adequately relayed to the physicians. To the best of your ability, make an impression so the staff remember you, your passion, and your drive to care for your loved one.

Come to Appointments Prepared

Being informed is essential to having complete and productive conversations with medical professionals. So it’s best to do some research yourself to bring to your appointment and help create a list of questions. (To start, you can find dictionaries of medical terms and other resources on the Resource page.)

If possible, it can also be helpful to bring another person to your appointments with you to take notes and keep you organized. This will allow you to focus on writing down your own questions as they come up, while your support person thoroughly documents information from the appointment.

Finally, when more than one provider is involved, be sure to bring clinical summary notes to discuss with the other provider. And ask questions if information or instructions you are receiving conflict with what been been offered or suggested by another provider. It is difficult to make the right choice for your loved one with contradictory information. Ask follow-up questions to clarify any confusion.

Know When It’s Time to Speak Up

Don’t assume that your provider doesn’t care about your opinion simply because of their personality or their confidence in recommendations they make. Many of us will meet others who we struggle to get along with, but your voice still matters. Be ready to express your concerns and ask questions. While you can’t change their professional opinions, it may open the possibility for a productive conversation and a new plan.

It takes all of us to make healthcare re-evaluate its mentality that one size fits all and remold the system. Individualized needs and patient perspectives must be the primary goal. You can help be that change by finding your voice in the healthcare system.

**Statements on this blog reflect the author’s personal opinion and do not represent the views of Ryan’s Case for Smiles. They are also not to be viewed as personal medical advice, but rather for the purpose of general knowledge. The reader should speak to their healthcare team, or their child’s, for medical advice.**

About the Author: Charlotte Klinepeter joined KIF1A.ORG’s team as the Administrative Manager in 2020 after her son was diagnosed with KIF1A Associated Neurological Disorder. There she assists in day-to-day operations, ranging from fundraising and development to marketing and communications.

She and her husband Matt, along with their children, live outside of Harrisburg, Pennsylvania. They enjoy spending much of their free time together being active and exploring. When Charlotte is not working or tending to the needs of her family, she stays busy running, socializing with friends, and gardening.