Author: Karen Copeland
I’ve written a lot about navigating systems of care, and many of us compare this to having to travel through a maze. We come across dead ends and have to double back and try and find our way again. But after a few recent events, I’ve decided that we are not just in a maze; we are navigating a labyrinth instead, ever at risk of dropping into one of the holes and having to start all over again.
While I mostly write about my ‘big ideas’ so to speak, today I want to get a little more personal. I’d like to share with you some recent events of our journey in the hopes of creating some understanding about what it is like for children, youth and parents/caregivers as they try to access care.
For years we were placed under the mental health umbrella in our Ministry of Child and Family Development (MCFD). Our clinician tried her best to engage our son, but in the end he just wasn’t going for it. She tried a lot of different things, including meeting him off site, however this was deemed to be unsustainable. While we were under this umbrella, our family was able to access a psychiatrist. This was especially helpful with monitoring and reviewing medications.
One year, our son received a diagnosis that moved him over to another umbrella in MCFD. This meant that (1) because our son was not engaging with his clinician; and (2) we now had access to funding for a variety of services, our son’s file was closed under the mental health umbrella. Unfortunately this also meant we lost access to the psychiatrist.
We just dropped in a hole. Starting over with a new psychiatrist means having to tell our story all over again.
[Funny story and not entirely unrelated, I was chastised by a general practitioner once for having a binder of information about myself – copies of my reports, etc. because of this whole having to tell your story over and over thing. Apparently she didn’t like an informed patient.]
To be fair, the clinician did provide us with the name of another psychiatrist (who did not live in our community), but not a phone number or a referral. I didn’t follow up with this because at the time things were going okay for our son, and honestly I probably didn’t have the energy to try and start making appointments for referrals. I take full ownership of that.
We dropped into another hole. Moving to different umbrella in the ministry meant we had to tell our story all over again. But at least it meant we started in a different section of the labyrinth which has somewhat fewer holes! Yay!
Fast forward a couple of years, we started noticing some things with our son that concerned us. We accessed a local specialized program and were able to arrange an appointment with the psychiatrist for a medication review. Because this program is short term, we were only able to have two appointments. We were told a referral would be made to another psychiatrist in a different community, and we could continue care this way.
Meanwhile, unbeknownst to us…
We’d dropped in a hole.
A month later, I still hadn’t heard anything about an appointment. I stopped by the program office and with the assistance of the administrative support person, discovered the referral had not been made. Let me just say that I LOVE this admin support person. She took immediate steps to make the referral and kept me informed through the entire process. We were able to get an appointment booked for two months later – which in the child and youth psychiatry world is kind of a big deal!
So this past Friday, a week away from the appointment and I follow the instructions I was given to call and confirm a week ahead. But when I call, I get a voicemail that says the office is only open Monday to Thursday, and our appointment is on a Friday.
I was worried we were going to drop in another hole.
Fortunately, the psychiatrist’s lovely assistant (and she IS lovely and thoughtful and kind) followed up with me first thing this morning to assure me all was well and the appointment date and time were correct. Phew!
I then found out they had mailed a package of forms for us to fill out in advance of the appointment. We never received these; they are either lost in the black hole of Canada Post or mistakenly in a neighbor’s home …
I could write about the labryinth of school stuff now too, but I just can’t. Let’s just leave that particular topic as …
plop. plop. plop.
I am thankful that we are not in a critical place right now, that the care we are requiring is not emergent. I think about the children and youth and parents/caregivers who are in a critical place, and I wonder how many times they have dropped in the hole, only to start over again. I admire their resiliency, their courage and their perseverance in following up, moving forward and accessing the care their child deserves.
This is the reality of moving through our systems of care as we try to get support and help for our children and youth. We are ever waiting for the next ‘plop’.
But we will rise and we will continue on.
You can be a champion for our families. Don’t just give us a name. Give us the phone number too. Ask if we need help making a referral. If a ball has been dropped, pick it up and do your best to make it right. Show us kindness when we are overwhelmed. Be curious and ask about our stories. Show us empathy, not pity. Hold space for us when we are struggling, because we won’t be there forever and we will need you when we rise again.
PS: If you are interested in how I’ve learned how to share my story over and over with professionals, ask me about my journey mapping workshop.