Dear Medical Professional / Healthcare worker,
The person who has brought my child to you and/or your clinic every 6 to 12 months for the past 14 years.
I know you see A LOT of patients and their caregivers. We also see A LOT of providers. Bridget sees 15 doctors, 4 therapists, 2 special educators and 4 educational support personnel. She sees countless laboratory techs, nurses and physician assistants. Let’s not even contemplate how many ER staff Bridget has seen in her 14 years, but I am betting it is more than the majority of medical professionals has seen for their own personal care.
Yet somehow, we know your name. Okay, we use a cheatsheet. Why don’t you? Why do you not know one thing about our child’s life or our name?
Here is my constructive advice, from a caregiver to a medical professional:
- Greet Bridget. Yes, our child might be or may have been non-verbal, but that does not mean they cannot hear and understand. Even if the patient seems like they are unable to respond, greet them first. Say hello. Address them by name.
- Learn the caregivers names. Come into the room and don’t call me “mom”. I’m not your mom (one caveat here, unless I’m in the NICU postpartum and you’re worried I have failure to bond). Call me Mrs. Ames (or if Bridget and I have seen you for a decade, know to call me Kerri)
- Take notes about our personal life. Bridget was so happy to go to Alaska. She told everyone. Only one doctor took notes and when we returned asked Bridget about Alaska. For a child who is not a “reporter” but a “responder” by noting the information from the previous visit, this doctor was able to make a connection with Bridget
- Remind us what you are testing for, while we might seem like we know everything most of the time it is because we do not want to look inept. So tell us, oh we are testing her urine for a UTI because of XYZ.
- Call us back. Out of Bridget’s 15 doctors, only her neurologist calls me directly if I send a message through the portal. Otherwise I get a tech who is just going to relay the information to the doctor. It becomes a game of telephone. And you all remember how that goes, it starts with Mary went to the market and by the time it gets to the powers that be, it is Mary was a virgin who gave birth to a savior.
- Take our parenting seriously. We know our child better than you do, validate that. Especially in rare disease but in all cases never discount our institutional knowledge of our child. If we say X is wrong, believe us and work with us to find an answer to Y.
- Understand that we are a team. The parent is the coach. In Bridget’s case she has 15 doctors that do not speak to one another. I’ve literally be told when you see GI mention “this” or when the next time Bridget is having labs let me know so I can add “this” test. The parent is the complex care manager, give us the tools and the back up. Write your notes in a way that we can say to the next doctor, oh Endocrine is concerned about bone density and long-term use of her GERD med, they want her Vit-D tested.
- Give us the tools to be successful, but give us the respect that we are in the trenches and you see our child for 20 minutes every few months.
- Do not just treat the patient in PT/SPT/OT, but let us observe and give us the tools to keep doing the therapies at home. A 45-minute / once a week session will not “cure” our children. Yet typically we are in the waiting room while treatment is taking place. Then we are given “homework” in a busy waiting room. Here is a secret, if we knew how to do PT/OT/SPT we wouldn’t need to travel to you. So give us the education to carry on what you are attempting to do with our child.
- Don’t give us platitudes, but ask us how we are doing. No one seems to check in with the caregiver to see how they are coping with this unexpected life.
Last, but not least, thank you. I am sure that being a pediatric specialist isn’t an easy job. Neither is being a caregiver of complex child. Together we can change their future.
So let’s work together to make that happen.