NOVEMBER UPDATE: Mary’s general health is quite good, despite the fact she occasionally needs to visit her GP for various small complaints.
But she’s been suffering from a common
ailment for the past month and really needs an ultrasound test – sooner rather
than later. Easier said than done.
This week, over the course of a morning,
we tried to make appointments for the test at three different clinics. Not one person arranging the appointments on
the other end of the phone seemed to understand the words “severe brain injury”
or “problems swallowing.” They were insistent that Mary would absolutely have
to down five large glasses of water for the test.
“We might get one thickened glass of
water into her,” we told them. “It takes her a long, long time to get any
fluids down.”
Not good enough, despite the fact she has
had ultrasounds for the same problem without having to drink vast amounts of
fluid.
So this is what happens when a disabled
person – with two aggressive, insistent and vocal guardians – must contend with
when they are in a community setting.
It’s as though no one listens. And no amount of repeating or explaining
makes a difference.
Mary will get her ultrasound – later
rather than sooner – at a clinic we’ve used before, one that understands her
condition. But so much for urgency.
Still, we managed to not rush to an ER
in a panic, but kept a close eye on the condition and monitored it twice a day. So far, so good, in this case.
But what happens to those in the community
without rabble-rousing parents who can shout if necessary? I shudder to think.
Mary, we were told by one health care
official this week, fell through all the cracks in the system along the
way. And this is while we were there, all the time, advocating, pushing, being
mouthy, complaining, writing letters, questioning and being obnoxious.
How many disabled people are there out
there struggling without advocates? If Mary fell through the cracks, who’s out
there dangling and needing care and not getting it? What do they do? Who do
they call? There are only so many agencies – all of them pressed to the wall –
that can handle tough cases. Who waits the longest for attention? And how long
is their wait?
It’s a nightmare.
Mary has two wheelchairs – one ordered
for her needs while she was in the hospital, and a new one that is more adapted to
her present needs. Both are precarious. They cost almost $12,000 in total (the Ont. government pays almost 75% of this cost for those who need chairs). But you’d think they’d been put together
in a discount store. Tires go flat, arms flip off, footrests fall apart, pins
and screws clatter to the floor. Other than the private therapists, Mary gets
the most visits from medical equipment repairmen.
And she’s not freewheeling it down the
street, either. She spends most of her time sitting in her own apartment. We’d
probably have to hire a repairman full-time if she were to suddenly take
wing and want to go places.
An interesting note: About
a month ago, I, on behalf of myself and Paul, wrote an 8-page letter to the two dozen or so board members and
CEO of the hospital where Mary sustained her brain injury. We waited a long time
to do this. I wanted all the expert witness reports, the report from the
College of Physicians and Surgeons. I wanted to have all the facts and opinions
before me.
Interestingly, the experts and college all
said the same thing: The young resident on duty that night did not do enough to
ensure Mary’s care. He followed protocol, but he could and should have done
more to get her into an ICU.
The letter wasn’t accusatory, and it
wasn’t too, too terribly critical. It did point out the fallout that occurred
from that night of misjudgment and failure, how it affected Mary and each and every
member of her family, how it is still affecting Mary’s quality of life.
Mostly, the letter beseeched the
hospital to never allow this to happen to another patient or their family (let
alone a pregnant and post-operative patient) and to ensure that safety measures
have been put in place since that dreadful night. I pointed out that we’d seen some mighty
dodgy things in our three and a half years at the hospital and that we had, on occasion,
been on hand to help divert pending disaster with other patients.
We didn’t expect an answer. Didn’t, in
fact, even want one. It was something that needed to be said, was said, delivered and done with. If I never heard another word from a single member of staff at
that hospital it wouldn’t have bothered me. I could easily have gone to my
grave with it all put behind me once that letter was delivered.
But we got an answer from the CEO – and an
apology:
The CEO apologized on behalf of the hospital and
“personally for what happened to Mary and your family. I have read and reread
your letter and I have heard you.”
I was assured he had taken all our
concerns “very seriously.”
The CEO also would like to meet with us
personally to share “those changes we have made.”
One problem: It's still raw, even after five and a half years. We're battle-weary. And do we really want to meet after all we’ve gone through?
Shouldn’t we just be happy knowing changes have been made to ensure the safety of other patients?
And how would I ever get
through the door of the place to meet with these people without collapsing on
the threshold with an anxiety attack?
Do we have to do this? Should we do this?
Well, maybe.
