Tuesday, September 8, 2015

'I felt so small:' Parent tips on speaking up with specialists

By Sue Robins and Isabel Jordan

When my son was diagnosed with Down syndrome 12 years ago, our family was thrust into a world of medical specialists that was foreign to us.

I still vividly recall this harrowing experience with a cardiologist.

Aaron was a month old, and we’d been sent to our children’s hospital to make sure he didn’t have a hole in his heart. After the testing, my husband and I sat nervously in the clinic with our wee baby, terrified that he might need open-hurt surgery.

A well-dressed doctor burst into the room. I knew who she was, as we’d been told she was a "prestigious physician." But she didn’t introduce herself. She didn't say a word.

Instead, she proceeded to examine our little boy brusquely, placing a cold stethoscope on Aaron’s chest, which caused him to startle. I didn’t know I could speak up, so we sat there, passively, in silence.

“The ECG and echo showed that he has an ASD, but I hear no murmur,” she said. I dutifully wrote this down in my little book. I didn’t know what an ASD was, but there was no pause to ask questions. I felt so small.

“Book him back in a year for follow-up diagnostics,” she said. Then she turned her back to us and started dictating Aaron’s report into her phone. My husband and I looked at each other. We guessed this was a sign that our appointment was over.

“Are we done?” my husband asked. She stopped her dictation but didn’t look up. “Yes,” she said.

We packed up our son and left feeling very confused and a bit stupid.

I realize now that I should have spoken up to this doctor, who is actually just a person. I could have introduced myself and asked her to warm up her stethoscope. I could have politely interjected and asked my questions. There are so many things that I’ve learned since then.

Here are some tips Isabel and I put together to help you find your voice and get what you need out of your child’s health appointments.

Bring support if possible

There’s nothing worse than going it alone, especially to a new specialist. It can be difficult as a parent to listen to, process and remember all of the information. Consider bringing a family member or friend to help hear the things you miss.

If you’re on your own, bring a notebook and pen so you can write down important information. Because these appointments can be stressful, arrange to call a family member or friend after the appointment to debrief and hear some encouraging words.

Get to know your health providers

Build relationships in the health system. Instead of being intimidated by specialists, think of them as fellow human beings. We chat with receptionists about the weather and find out their names. Ask your child’s pediatrician where they’re going for holidays. Be friendly with all staff, and always take the time to say thank you for a job well done. We hope that if we see the staff as human, they will see us as humans too, not just as “special-needs parents.”

Get your questions answered

You have a right to ask your questions. Come prepared with questions written down in a journal.

Make sure you ask your most pressing question first, rather than leaving it to the end of the session, when there may not be time. Take notes.

It’s okay to ask your doctor to slow down and better explain answers until you fully understand what is being said. Don’t be afraid to ask what an acronym or a medical term means!

Find out how you can be in touch with the doctor if you think of something after the visit. Can you phone? E-mail? Do you need to book a follow-up visit? Ask for a business card or written contact information before you leave.

Know that you’re the expert on your child

We go to health specialists for their clinical expertise and knowledge. But as parents, we are with our kids 24/7, so we, too, bring essential practical information.

If you feel uncomfortable with a situation—with a suggested medication, with a course of treatment, or with a professional's approach—you need to put the brakes on and speak up diplomatically about your concerns.

Sometimes just asking to slow things down so you have some time to think things over is helpful. Sometimes you need to be politely persistent.

It’s important to know that you can always ask for a second opinion or another professional to speak with. You can also ask to speak to someone in the patient relation's office. Some hospitals have family advisories and may be able to connect you with another parent.

Remember the visit is about the child

Prepare your child before the appointment for what to expect, and explain things as they happen on the day. Maintain dignity—by giving a child privacy when he or she has to change or by providing a blanket to cover up. Suggest they be given choices, such as which arm they’d like the blood pressure cuff put on. Model the behaviour you want to see. For example, ask health providers to speak directly to your child with questions. As parents, remember that the appointment is about your child, not you.

We believe that the better we get at speaking up, the better health providers will get at working with our families and providing the kind of care we want and need.

Sue Robins is a mom of three and family advisor at Sunny Hill Health Centre for Children in Vancouver. Isabel Jordan has two children and chairs the Rare Disease Foundation in Vancouver.


Hi and thank you for this wonderful post.

I am a person who can't focus and take notes in a class or presentation.

And when you're in these types of environments, some of us are just trying to hold ourselves together, what to speak of being fully present for ourselves and our family members.

I would also offer to others reading this, if you can't take notes and listen at the same time, then film/video the meetings with health care providers.

THEN, later you can watch it over and over to catch all the bits and pieces of the meeting.

I am almost 60 years old and have just figured this out for my own health care visits! Too many years of being timid. Take care of yourself and do whatever you need to do, even if that means recording your meetings--video and/or audio!

You will be so glad you did. and have that to look back on.

Thank you so much Gail for your kind comment...the video idea is a great one, too!

Let's add to these tips. It is important for all of us to know that we ALL experience stress at medical appointments - whether for our kids or ourselves - and that we aren't alone in struggling with them. But there are little things that we can do to help...so we are more in control of our own care & health...


Hi Gail: Great idea! Good for you for taping your visits. Have you ever had a professional object to having the meeting recorded?

Thank you so much for posting this. It's so important for parents to feel listened to, and a part of the process of care for their child. So often we may feel intimidated because our knowledge is very limited about what options there are available for our kids. By any chance, do you have a similar one for advocating for our children at schools? I am going through a thing right now, that its weighing heavily on my shoulders concerning medication in the school setting, which is causing me a lot of grief. Time to arm myself with information and a badge of courage.

That's a great question Stephanie. I think that a lot of these tips can translate to the school setting as well - bringing support, knowing how to contact the educator after the meeting for more questions and clarification, knowing that you have a right to your questions and building those relationships. So much of this goes better when we're in partnership with our health care providers and with our children's educators. Sometimes, as parents, we need to be the ones modeling what that healthy relationship looks like and what we need our role to be as our child's advocate.

Stephanie -- are you able to get a medical specialist to write a letter documenting your child's medication needs and how they are non-negotiable?

Thank you Sue and Isabel! It struck me while reading this compelling post that your tips are equally useful for adults - both for ourselves and when we're advocating for others (an elderly parent, for example).

I cringed reading the story of your little baby's appointment. I don't care how "prestigious" a specialist might be, introducing yourself to others is a simple common courtesy. No excuse for professional rudeness.