As disabled people go, I’m quite privileged. I was diagnosed relatively quickly with my rare disease by a renowned neurologist in the field. Through him, I got referred to and taken on by a rehab centre that offers all services to patients like me, from psychology to physiotherapy to wheelchair repairs.
Of course I’m also privileged by the fact that I was born and live in Canada, so all of the above has always been free for me.
Every time I hear a tale of the system failing for a fellow disabled person, I feel even more privileged, and wonder how and why I got so lucky. But now, I have a tale of my own to share, about the system breaking down around me, and leaving me to have to advocate for myself to get the most basic treatment! All I wanted were my usual Botox injections…
For maybe the past half-dozen years, I’ve been having Botulin (the fancy word for Botox) injections in my calves about twice a year, ever six to eight months. Dr. S. was the physiotherapist injecting me, at the aforementioned rehab centre. They were the ones who called me to set appointments, I never had to call them.
I had an appointment in January 2020, so I was expecting a call around late summer, early fall, to set up the next one in September or October. But then back-to-school came and went without a call. Halloween ditto. Both Thanksgivings. Christmas. New Year’s. I kept thinking COVID was probably wreaking havoc on their schedule and that was why nobody had called me yet. I just had to be patient.
(Yes, I’m aware I could have called them myself, but I hate speaking on the phone and avoid it as much as possible. Also, why would I want to hurry up getting half a dozen long needles poked into my legs?)
In spring 2021, I had a phone appointment with my neurologist about an unrelated issue, but during which I mentioned having had no Botox for over a year. “Oh yeah,” he said. “Dr. S. is on medical leave.” Wonderful. Why did nobody think to tell me this?! He said he’d get my team to transfer my file to another physiatrist in the meantime, which would be easier said than done since apparently doctors qualified to inject Botox into places that aren’t your face are few and far between.
So it was back to months of Botox-less waiting for me.
Finally, a new place called me in the fall of 2021 to set up … an assessment appointment. “Why an assessment?” I asked. “I’ve been having this treatment for years and you have all my previous doctor’s notes in my file.” I’d been Botox-less for so long, they said, that they needed to reassess me as if I was a completely new patient. So with a sigh, I agreed to an appointment in October 2021.
When I showed up and met new Dr. D. (lovely doctor, I’m planning on staying with her and never going back to Dr. S. even if she comes back!), the first question she asked me was: “So did you bring any Botulin for your injections?” *groan* I explained that I’d been told this appointment was going to be just an assessment, so she assessed, and told me to expect a call to give me an appointment in about a month, as soon as they ordered the Botulin to be delivered there.
A few weeks later, I received a letter in the mail from the Quebec health insurance people telling me a prescription for Botulin had been received, and they refused to cover it because I already had a prescription with Dr. S. going to 2025, and please call this number if I wanted to lodge a protest.
So I called this number and explained to the nice lady on the phone that Dr. S. was out of service right now, that Dr. D. was my new doctor and that she was the one who needed that med covered. “Our prescriptions work by medication, not by doctor, so you’re good, Dr. D. can call in the prescription and it’ll be covered the same as it was before.” Then why did they send me a letter telling me it had been denied?! FFS…
Remember, I’d been told I’d get an appointment in November. But again, Christmas passed, New Year’s passed, no call. I’d gotten a call from the pharmacy to get some info off me, so I knew the doctor had sent some request regarding Botulin, but then more months of radio silence.
In January 2022 (two whole years after my last injections), I called the pharmacy, to check if maybe the insurance snafu was what had caused the hold-up. It wasn’t. “We have everything we need, just waiting for the doctor to call in a request.” So I called the physiatrist’s office, and lived through an epic merry-go-round. A perfect representation of our ridiculously flawed health system in Quebec, in my opinion. And also a reason why I hate phone calls!
*Ring ring*
Person who answers: Hello?
Me: Yes hi, I had an appointment with Dr. D. in October, and—
Them: You called the wrong place, I’ll transfer you to reception.
Me: Oh, okay, thanks.
Reception: Hello?
Me: I saw Dr. D. in October and she said someone would call me back in November, but nobody ever did.
Reception: I don’t take care of follow-ups, let me transfer you.
Me: … Fine…
New person: Hello?
Me: … Dr. D… October … no news…
Them: I don’t know, I think you should ask reception, let me transfer you.
Me: No! I just came from there! THEY sent me to YOU!
Them: Oh? You say you want an appointment for your prosthesis?
Me: What? No, I just want to know what’s happening to my BOTOX!
Them: Oh, okay. I have your file, let me transfer you to the right person.
Me: *FFS*
Another person: Hello?
Me: *same story
Them: I see. Let me transfer you to the person in charge of the Botox treatments.
Me: *REALLY?!*
Person #5: Hello?
Me: *explains, again, why I’m calling*
Them: I see on your file that no request was made.
Me: What?! I’ve spoken to the pharmacy, they have the Botox and the insurer approved it, they’re just waiting for you to request it.
Them: So do you want an appointment?
Me: YES PLEASE!
After all this fuckery, I got an appointment on February 10, 2022. You’re thinking, “Surely, the story must be done now, she gets her injections and lives happily ever after, right?”
WRONG!
The week before my appointment, the doctor’s office calls me on Tuesday to ask if I can switch my appointment from the 10th to the 7th. Absolutely fine by me, I jot down the new date, go back to my day.
On that Thursday, the pharmacy calls me. “We’re calling about your Botulin appointment with Dr. D. on the 10th…” So I had to inform them that my appointment had been moved to three days earlier. But what if they hadn’t called me that day? Would nobody have thought to inform the pharmacy of the change? Would I have shown up to my appointment on the 7th just to be told to go home because they didn’t have the Botox they’d ordered yet?
And NOW the story is over! I got my injections on the 7th, told Dr. D. everything her office had put me through and she was very apologetic, giving me the extensions for her secretaries so next time (*knock on wood there never will be a next time*) I can get through directly to the right person instead of the whole building playing hot potato with my call.
TL;DR: I waited twenty-five months between my (usually bi-yearly) Botox injections because of doctor miscommunication, insurance misinformation and general bullshittery.
So you see, even being as privileged as I am doesn’t fully shield me from the system entirely collapsing around me. And I was able, eventually, to get the ball unstuck and rolling by making phone calls (I don’t like them, but I can do them if needed) and advocating for myself. But what of the people who physically can’t make phone calls? None of the people I had to call offered email service. What of those who can’t advocate for themselves, for one reason or another? This is why we need a competent healthcare system, with people who will take charge of patients, not what we have now, where said patients have to take everything in their own hands every time there’s a hiccup somewhere.
I am now free to enjoy a few more months of my calves not cramping every time I look at them funny, and I cross my fingers that my next appointment will go smoothly. I’m exhausted just thinking I might have to go through this rigmarole again…
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