Stay with me here while I bust up this keyboard as I’ve got something to say…wait a minute…”That’s the way love goes” by J Jackson won’t cut it…”Better Now”–Collective Soul, much better.
Who has the power? If you aren’t sure about this answer, we need to connect more. The answer is you do. On the macro level, I’ve got this core belief that “the people” are the ones who have the power. What do I mean by the people? Any individual or group that wants to influence change. Power is as much perception and when you believe you have the power to influence change you are half way there, the biggest half, too, might I say.
Change, what would we like to change? It’s a long list for me as I see opportunity for growth and improvement everywhere, and of course, the Canadian healthcare system is as prime an example as you’ll ever find. Funny how those places that are often in need of change the most are designed to resist it at every corner.
So we have this system, that in my opinion needs to change. In fact, there is so much change needed that I could, on a good day, make an argument that we should not bother but instead drop a bomb on it and start over.
During my active treatment I battled with the system so often because I hated being second–or twentieth–priority; I lived in a system that was foremost interested in serving itself. The ultimate example of a human creation that is out of control and self-serving. Forget all the nightmares about the day the terminators turn on us, we’ve already got it, and we’ve created this monster to serve the most precious element of life: our health. What really pissed me off was when I was really sick–and I mean I could barely have a conversation with people my energy was so low–yet this system of ours would push me and demand more when I really had none to give. Yes, humans carried out these orders from “the system,” but for some reason they were caught in a mind-trap, unable to think for themselves. They didn’t see that I had dropped 30 pounds in a month, had no white count, and that it probably would be uncomfortable–never mind dangerous–for me to sit in a shitty wheelchair for half an hour in a freezing cold hallway waiting for a chest X-ray of the day.
Don’t confuse what I’m saying here with a hit on the humans in the system. While I do believe there needs to be a rethink about how they work within it, that is the primary responsibility of healthcare leadership, and there is a deficit of leadership so the system perpetuates itself.
“Courage to change the things I can, tolerance to handle the things I can’t, and wisdom to know the difference.” So much insight there. I try to do my part to help guide our too-often misguided system in a direction that I feel passionate about. My philosophy is simple: it should be about the patient, the person, each individual. We should be empowering people, serving them and supporting them during their times of trial.
One of the ways I share my perspective is through the National Survivorship Working Group, an initiative of the Canadian Partnership Against Cancer (CPAC). We are a diverse group, which makes for great discussion, and our work is focused on the issue of survivorship care plans. We are looking at plans and models for delivery and we each bring our own bias to the table, which is natural and healthy really provided you are able to be open.
We met last week to discuss models, which we had done in the past. We got down into the details and I shared one vision of mine which would be to deliver these care plans and to help survivors get back to good in all areas of their life after cancer. It involved my philosophy: make it about the patient, their needs, wants, empower them to take control. I didn’t know but there are even lots of studies supporting the power of patient empowerment, imagine!
My view is that Young Adult Cancer Canada (YACC) is well positioned to be one mechanism for survivors to connect with a care plan, create it, and get support as they implement it–live it, so to speak. I feel strongly that patients want to be empowered and supported to take control of their recovery as they rebuild from active treatment and the emotional wreck that is often created from dealing with cancer. I was sharing this vision, passionately as always (I seem to know no other way when I get excited). I finished my rambling thought about patient empowerment and a doc sitting at the table said “the revolution is coming.”
I immediately agreed with her. In a very good-natured way, I was encouraged to hear the word revolution honestly as I think it is needed. Within a second, I realized she was not sharing my enthusiasm, but instead appeared to be dreading the thought. Unfortunately I did not have the opportunity to approach her about that comment, but believe me when I say, she was right!
The revolution is coming, and I am jacked to be a part of it.