General health issues, wheelchairs and a letter

        


     

      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.