Friday, 28 December 2018


Today I'm really excited to be hosting a guest blogger. This young woman is one of my favourite writers and I think she has a big future in writing ahead of her - and this isn't my bias speaking. As soon as I read this earlier this year, I knew I wanted to post this on my blog and I'm really happy today is the day. Evie Jordan is 14, and amongst other things, including making music and playing soccer, she loves writing. She sees a future for herself in science and in writing and I look forward to seeing where she ends up. Oh yes, she's also my daughter. I couldn't be more proud of her. I hope you enjoy reading this as much as I did. The photograph accompanying this piece is also hers.

noun, plural he·roes; for 5 also he·ros.
1.   A person noted for courageous acts or nobility of character: He became a local hero when he saved the drowning child.
2.   A person who, in the opinion of others, has special achievements, 
abilities, or personal qualities and is regarded as a role model or ideal: My older sister is my hero. Entrepreneurs are our modern heroes.
3.   The principal male character in a story, play, film, etc.

Many are hailed as heroes but I believe that there are many more unsung warriors that fight for what is right every day. What defines these people as heroes even though they are not almighty, or rich?           
A hero is someone who fights. Not stands idly by as wrong is done. A hero is someone who cares. Do you care even about those whom you disagree with? A hero is someone who will help, even with the little things. But mostly, a hero is, and will always be, a person with a conscience and a will to uphold it.
Heroes roam the streets, walk the halls of schools, live in neighborhoods, and breathe, like you, and I. These people are everywhere, and you will see their capes flow and powers fly if you just look.
The other day I saw a hero, the other day, you probably saw one too. They are everywhere and always there, for you. Maybe not specifically, maybe they don’t utter your name and come to save you from a dragon, but they are there to save you from yourself.
Are you overwhelmed and lost? Busy and tired? Making a mess and tensions flying high? Has this ever happened? Because I bet you, a hero would be willing to help.
Think back, have you ever met a hero? Someone who even just passed a pencil, asked about a day? Because I have, and every time I see an invisible cape flowing in the make-belief wind, I am reminded that someday I will look in the mirror, and I will have done enough to be a hero too.
Heroes can be anyone, really. They could be me, or you! So next time you walk around, look for the capes, and they will be there. So next time you look into a mirror, you’ll notice a cape flowing there too.

Monday, 8 October 2018

Paying the Piper (or the cost of remembering)

I’m sitting here, trying to write a couple of presentations for a conference I’m leaving for in a few days. As per usual, I’ve left things too long for my comfort and I wish I did more earlier. To be honest, I’ve always left things a little to the last minute – there’s no changing who I am, I guess.

But these presentations & talks that I do about our experiences through the health care system, sometimes I think I leave them for a reason. I carefully craft my message each time, and each time I go through my photos, and our history, looking for the messages I need to leave the audience with. And each time, because the lessons learned, we’ve learned through hardship, the photos bring me back to the moments I was there. And that hardship has been hardship from parenting a rare disease journey and witnessing our son’s pain and distress. And I can’t change any of it. I can only remember it.

And I feel it all again.

Does the audience know this?

Do the organizers?

Do I when I say ‘yes’?

I do this because it’s important. I do this because, I feel like I can make things better, that I can ease the way for the families that come after mine. But right now, as I take a break from PowerPoint, my photos, and my writing, I take a breath and wonder:

Do they know the cost? Will I ever stop paying?

Maybe the day it has less impact on me is the day it will have less impact on my audience. I don’t see that happening any time soon.

Until then, I’ll keep writing. Until then, I hope something that I say, or show, will ease the way for another family like mine.

Ok, back to PowerPoint.

Thursday, 15 February 2018

Patient Engagement: You’re Doing it Wrong

Buckle up kiddos. This may be a bumpy ride. Generally on here, I try to share stories of how to do things right. Show leadership by example. Model change, if you will. And I’ve tried to let this one go. Let it slide. Chalk it up to experience. But, my friends, I’ve been had. With all my talk (and those who know me, have heard me) of being savvy about when to engage, and when to pass things up, I let my excitement for a project lead me into the lion’s den. Or perhaps just to the den of apathy. Probably more the latter then the former.

So let me share with you my story of Patient Engagement: You’re Doing it Wrong. If you’re in any kind of position where you’re engaging patients and you see any echoes of what you’ve done here. Take this time to reflect. If you’re a patient or a caregiver, STOP. DROP. AND ROLL. No. Wait. That’s something else, altogether. If you’re one of us, know that we all get sucked in sometimes. And it’s not our fault. It comes from the best place in our heart. And every time, it feels awful.

So, on to the story. Are you buckled in?

Being an Experienced Patient Advocate™ I was flattered to be approached by clinician project managers to create fundraising document for a new hospital-wide initiative. I was wary, because I haven’t had great engagement experiences with this facility. But generally, when dealing with individual clinicians, their hearts are in the right place and we can see eye to eye. But what sealed the deal, is the initiative was around an issue that meant a lot (everything) to me. An issue that had created trauma for my son, for me and that I could see was creating trauma for others. It killed me that it wasn’t being properly dealt with. The fact that insiders wanted the funds to deal with it in a systemic, hospital wide way, was absolutely music to my ears. And they were actually reaching out to a parent. I wanted in. I wanted in to get them to bring in more parents. And patients. Systemic change ---- muah-ha-ha!!!

It was a good meeting. It was a hard meeting. I told our story. Illustrated why we had problems. How we had problems. Why they needed diversity represented. Honestly, every time I trot out our story to clinicians, it cuts. It can’t help but cut. But it is so important. I read a document. I provided edits. Was on an email chain. I worked. For free. But that’s ok. It was profoundly important to me. The change it could potentially make for patients and families would be worth it.

And then off it went. And I waited to see what would happen. For months. And of course, life moved on. Several months later, my patience ran out. And I emailed the project managers, and the patient experience representative on the project to ask for a status report on funding, on the project. And do you know what they told me? Me, the only patient/caregiver on the project? Well if you guessed ‘nothing’ because nobody respected me enough as a colleague to bother replying to my email, you’ve guessed right.

Nothing. Nada. Rien. I wouldn’t dream of responding to a business colleague or volunteer like that. Or not responding, I guess? The best case scenario here is that it went nowhere and the funding didn’t come through. About which I still should have been informed. The very least you do with a patient partner is treat them like a team member. That experience gave me the feeling of ‘I wash my hands of you’. I am not here to chase anybody down to be a member of their club. I have better things to do, more important things today, and more self-respect than that.

I was done. I moved on. Because I am fortunate to work with some other fantastic groups that understand patient partnership.

Or so I thought.

Two months later I get a mail-merge style email obviously going to some list, asking if I’d like to be on a steering committee for the very project I thought I was already a part of. I’m sorry, what? How was I not included already on this? How was my previous email not answered? How do you ignore the only patient you included before and told that you were going to include in future planning? How was I mined for information and ideas and then dumped like yesterday’s news?

So of course I asked. And again I didn’t get any answers. I got an email full of platitudes and nothing else.

So what’s the object lesson here for people ‘engaging’ with patients?

Stop engaging patients if you’re not actually ready to partner with them. Stop using our stories to get money for your research and your clinical programs. Our stories belong to us. If you’re going to use me, then I’d better be making decisions with you.

What’s the object lesson for me?

My initial instincts were right. I shouldn’t have engaged with this group. I was left feeling used, vulnerable and stupid for thinking things would work out differently. I traded my family’s story for what, exactly? I don’t know, because I was never informed. In fact, I remember telling them this very thing in our meeting. Engaging patients means keeping us informed of the results of engagement. What happened to me is harmful. It took me from my home, away from my family, put me in a place of vulnerability, and put me in a place where I wasn’t respected.

The result: I won’t engage with this group again. And I’ll warn others off. And I’ll generally be more wary of engagement opportunities. This does nothing to advance the cause of healthcare improvement. I’m guessing this is the opposite effect of the initial initiative.

Harm was done.

Can you see me?