My health care team is not really a team: it’s three parts linked through me, the one with the injured brain, the healing brain, the brain that has suddenly sent them into crisis mode while freaking me out. I have tried for years to get the disparate parts of my team to talk together. I’ve only succeeded once or twice with two parts like COTA and CCAC people meeting with me around my kitchen table (homecare is literally at-home care, and OMG, what a wonderful non-draining way to get care, that allows you to do more in a day than just attend an appointment, but I digress). Or when I got my neurodoc and Dr. Lynda Thompson of the ADD Centre to talk on the phone about me over a year ago.
Every now and then, I try to get my neurodoc to speak to the other members of the team, maybe CCAC or maybe the ADD Centre. The idea of all three entities holding a conference call would be utopia. Anyway, my efforts usually fail. The usual reason is no time, too busy, schedules don’t mesh or zero communication happens — missed calls — and then they forget to retry. So I struggle along.
Then one day I was informed of something, which I can’t write about yet because I’m still trying to negotiate a reversal. Suddenly: flurries of calls were made between my neurodoc and some members of my team.
Then I was scheduled for a full-cap assessment in a few weeks, and so I began the Herculean task of arranging a post-assessment call between my neurodoc and the ADD Centre to co-ordinate my reading program based on that assessment. O.M.G. I wanted to kill myself. Just to get a tentative date, I had to use email with the ADD Centre and a combination of voice mail and in-person methods with my neurodoc (and email copies that he kind of, sort of read because he doesn’t do emails you know) to be the go-between.
That became moot last week because my brain decided to get real plastic and do what-to-me is bizarre stuff after the ADD Centre changed the biofeedback protocol back to CZ. The bizarre stuff has happened last year but went away, or so I foolishly, wishfully thought. And I’ve done CZ training before and SMR training. Not my favourite place because of memories of the emotional tsunami that hit me back in 2005 (it was rectified immediately).
But this was different.
Suddenly, my neurodoc got on the horn and called the ADD Centre. The usual missed connections ensued. But there was no forgetting to retry this time. (CCAC should have been in on this action too. But, well, they have other issues on their mind.) Thank God! Because what is happening is WEIRD.
Why does it take a crisis to get health care professionals to speak with each other? Why can’t they do that as part of their regular practice to co-ordinate care, to keep in regular or at least annual touch to ensure they are staying on the same page, and to ensure no-one is missing out on major problems?
A client presents differently to different health care providers. Co-ordinated care with the GP at the centre and the patient kept fully engaged is essential when treating complex and/or multiple problems. As for trying to keep my GP in the loop . . . Well, I don’t know what to do about that systemic health care problem.
I have, in the past, kept my GP informed, but with all the emotional and PTSD difficulties, I haven’t since last year. It’s too bad that when you drop out of being an engaged patient, not even your GP will intervene, take the initiative, and call you, that is, boss you around so that you’ll get the things necessary for your health done. I miss my old CCAC person. She was good at bossing me while ensuring I didn’t get overwhelmed. Sigh.
Luckily, the Toronto Pan American 2015 Games began, and they have been a welcome distraction. I took my camera out for a spin at the free sailing races off of Sugar Beach and began checking out the cultural venues. I took photos.
