Hospitals and facilities


Lillian: Here’s one thing that I would love to see though, is that I kind of wish that the system could recognize us when we show up. I mean, he used to be a frequent flyer at the emergency department because he had so many seizures and we were there routine, like at least once a month.
But I finally said, “You know, he’s got an MRSA infection and he’s spreading it around your emergency department. Could you just put us into an isolated unit and take the swab so that we can get out of here, get out of your hair and you can continue doing what you need to do?”
Well, because we’re known to them. And surely…but this is and again, we don’t, we are absolutely, we do not use the healthcare system unless absolutely necessary. If we could look after him and we’ve done lots with the seizures when they have you know stayed within the controlled range—not going, not, not tonic-clonic more than 15 minutes—we will look after him at home. And we know how to manage him, we do all of his medications as I say, we’re perfectly happy to do that; wound changes, dressing changes, all that kind of stuff, we’re perfectly happy to do that. But when he does have to see the system, it would be so nice if they would say, “Oh, okay. We’ll get you through quickly.” Because what happens is there’s just an escalation; he gets agitated, we get agitated, he gets more agitated, we get more agitated and it then becomes this kind of terrible escalation of anxiety and stress because he does not like to be part of the healthcare system. So as we show up at the emerg department, he hates the hospital, he hates it.
So I would love to see, just could there be a little card that says, “Special, here we are. VIP treatment!”

Michael: Of course I’m sure many people would like that.

Lillian: Yeah, I suppose that’s true. It’s just that we are known, it’s a little bit like our Nexus card. Like, we are known to the system; you can do the retinal scan. You know who we are. Look at us okay; it’s us again. We’re hardly ever here, but when we’re here it’s serious, right? You remember that.

Michael: It’s serious, yeah. On that point I think another dimension of it is that as you sit there you meet person #1, who’s the nurse, intake nurse or something. Then the resident will come in, then somebody else will come in, and then eventually a doctor comes in. Well each time, “So, tell us about Oliver.” So now you’re into the sixth telling of the story. It’s the same story you’ve just told, and then you wonder, “Am I missing pieces?” or whatever and you don’t want to be too short with people because they’re trying to attend to your needs. So you don’t want to say, “I just got done.” But for example, if we could have a video to say this is Oliver banging, this is who he is, this is his history and so forth, and we could just say, “Here, watch the video.” Everybody’s got computers and they could just keep it on file. I think not only for our son but for many people in the healthcare system, if we could move to a system where if you have a chronic illness, you tell your story once and then everybody would go to the same story and you don’t have to worry about “did you hear this, did you hear that” and so forth. They could keep it on file. It would be so much better in terms of quality of care.

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