Have you or someone you know been hurt by the Canadian Healthcare System?

You are not alone. Millions of Canadians are affected by medical error
resulting in death or injury during their lifetimes.

We're glad you came here. We invite you to join us as we form an organization which strives
to improve patient safety and enshrine patient rights, because every patient matters.

Join us. Contribute your voice and talents. Make a difference.

Email: impatient4change@gmail.com
Facebook: ImPatient for Change
Twitter: @Right2SafeCare


Sunday, December 19, 2010

Reaching Out to the Stars

"I will love the light for it shows me the way, yet I will endure the darkness because it shows me the stars."
- Og Mandino

When we first look at the night sky, we see only darkness. But after we blink, we start to notice the flickering light of the stars. They flicker because we see them through a turbulent atmosphere. And the longer we look, the more of them we see.

So it is with survivors of medical error - we are numerous, but we often feel alone until we find each other, flickering through the turbulence. We are strong and we shine.

Some have been shining for longer, or with more resources, and some are already changing the system.

Here are a couple more Canadian survivor websites worth highlighting:

Empowered Patient Canada

There are other Canadian groups listed through the site advocatedirectory.org, which is a project of Mothers Against Medical Error. We have much to learn from American advocates, who have more experience strengthening the patient voice in dialogue about patient safety.

Many Canadians have tenaciously pursued their own battles for answers, compensation and legislative changes to protect others; not all of them have websites. Many are working in their communities to advocate for their family members and friends, and helping survivors who stumble into their midst. Others have joined together for specific initiatives.

The closer you look, the more people you find.

What unites all these people are some inspiring characteristics: they remain independent of government so they can advocate for the patient interest without conflict*; they are often personally affected (through direct experience or grief); and they are committed to making the Canadian healthcare system better and safer, so that we all benefit.

Rhonda Nixon of Empowered Patient Canada sent me this song as encouragement, and I'm happy to share it with you:

*Independence in Canada can be difficult to maintain. There is little to no funding for patient-led initiatives. Some government grants for specific programs can be helpful, but sometimes these come with strings which contradict the public and patient interest. We must be ever mindful, and continue to push for more independent funding.

Sunday, December 12, 2010

Reaching Out to the Wind

In reaching out to other survivors, we've heard a common theme of isolation.

Sometimes it feels, as survivors of medical error, as if we are alone in a vacuum or lost in some vortex in the universe. We reach out to people around us to tell them what happened, and we get what I call the five stages of rejection:

1 - Disbelief: Your story is crazy. I mean, in Canada? I've never heard of that before. Are you sure? That doesn't make any sense.

2 - Sympathy: Ok, if that happened, that's awful. You poor thing. What a horror story.

3 - Stereotyping "The Other": Why did that happen to you? What is it about you that would make that happen? I mean, I certainly wouldn't want to think that I'm vulnerable too.

4 - Leaving it to "the expert": I'm sorry. I just don't know anything about this, so I don't think I can get involved. I'm not a medical expert.

5 - The "shut down": Look, I'm sorry that happened. But I told you I don't know what to say or do, and besides, this is rather negative and scary. And I'd rather focus on things which directly affect me or which make me happy. Life is short and we all have to move on. You can't change the system.

So many of us encounter this reaction. And we further withdraw, give up, self-blame, self-harm, lose trust, get depressed, and swim silently in trauma. We're a bunch of fallen trees and nobody is listening.

When something like medical error happens to us, we suddenly become aware of another plane of existence, of the world of the injured and grieving. And we struggle to communicate about that world to those who haven't fallen through the holes yet.

We need numbers. We need a voice. And we need mechanisms of empowerment.

How do we get there? By learning to think and speak a little differently about the problem.

Let's start with affirmations:

We are numerous.

We are strong.

And together we CAN change the system.

Sunday, December 5, 2010

Your response to new hospital transparency

How do we move forward from last week's success?

Many of you have congratulated us and asked us what this access to information will mean for individual patients and for healthcare reform.

We are pleased to tell you that the answers will come from your own questions. We encourage every concerned patient, family member, journalist, academic, and member of the public to file Freedom of Information requests to your hospital, to ask your burning questions about quality of care.

This human rights movement for patient-centred, good-quality, and safe care has "caught fire", a member of our community told us, as word is spreading about a new culture of transparency. We hope she's right. If you're not sure what you want to ask for in your FOI request, we're happy to help you.

"You've unleashed an avalanche [with access to information]", a nurse told us, because there are so many problems under the surface which will come out now. "That'll keep them on their toes," another healthcare provider said, suggesting that hospitals who know the public is watching them will be more careful about what they do.

A friend summarized the medical lobby's argument as to why they didn't want to share information this way: "Ignorance is bliss." She was suggesting that doctors and hospitals are worried that once the public finds out how many mistakes and dangerous exposures are really happening, it will be difficult for us to sustain trust in our healthcare system.

But several people also told us that we shouldn't forget about the good stories, shouldn't forget to tell our readers about good care and best practices. We agree. Because the answer to medical errors and safety failures is three-fold: full public reporting, patient-centred innovation, and patient power. And there are some great examples of these if we look at other jurisdictions and other countries. So ImPatient for Change will highlight some of these initiatives as we move forward.

We are ImPatient for Change but we are also cognizant that change will take time. We know Canadians want to feel proud of our healthcare system and proud of our record on human rights, so we feel our goals are achievable, with tenacity, determination and a spirit of truth and hope. We recognize that this is a journey of a million steps, and that lives of those we care about are on the line.

And we are not working alone.  Other patient groups, survivors and their family members, health coalitions, public health experts, lawyers, nurses, doctors, policy analysts, administrators, quality councils, activists and politicians have been struggling for years to improve our quality of care.  It's time to unite.