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Who Cares for the Patient Advocates?

Me at my very last speaking engagement in pediatrics. I'm handing off the mic, as my son is 20 now.

I've been thinking about a recent article written by Lisa Machado called Canada’s Advocates are Burning Out.

I'm grateful to Lisa for writing this piece for Healing. It is crucial to spotlight the crucial work done by patient and caregiver advocates. As she points out, if there is an exodus of advocates, there will be little accountability in our health care system. Plus lay-person advocates experience the same moral injury in the health system that professionals do, but it is rarely acknowledged or talked about.

As Lisa says, patient advocates don't have whistleblower protection (in fact, we are the whistleblowers), a formal community or a union. Or money or a job to provide the mental health supports that we need. Plus, we are advocating when we are sick or our loved ones are unwell. And we often don't get compensated for this work. This makes us especially vulnerable.

I’ve been criticized for ‘whining’ and ‘being arrogant’ when I tell the truth about my experiences as a patient advocate. Well guess what nay-sayers! I’m used to being minimized and dismissed because I’m a patient! And a woman to boot! This happens all the time to me at point of care! You can’t touch me!

I must reject the notion that clinicians and paid staff are in the same boat as patient advocates because 'they are advocates too'. Professionals have a power base. Patients do not. We need to start to talk honestly about power dynamics. Without professionals grabbing our microphone to say, what about us? Maybe it isn't always about you. You know how professionals can help? Quit centering the conversation around you. Treat us respectfully at point of care and when we are engaged with organizations. Solicit feedback about our experiences, but for goodness sakes, quit minimizing, gaslighting and dismissing us when we actually give constructive feedback. This feedback is a gift. Learn from it. Mostly, be a freaking ally to us.

Do I sound angry? Well I am. I've also had it with being told that I must be 'calm' when I talk about the harm that's inflicted on patients. I shouldn't have to be 'nice' or 'well-behaved' for you to listen to me. That's just game-playing to minimize your own discomfort.

As the famous saying goes, if you aren't outraged, you aren't paying attention. And here's another one: If you aren't uncomfortable, you aren't growing or improving.

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