how to start a movement

I do still say yes to carefully chosen speaking engagements, despite my recent jaded post.  I’ll share my story when I feel an organization has demonstrated that their values are in alignment with mine.

One of those organizations is the Stollery Children’s Hospital.  I was their Family Centred Care Consultant from 2009 to 2011 and I was pleased to give a talk last night to their Patient and Family Centred Care Council to talk about the history and why a group of moms, including me, lobbied so hard for the hospital to start up a Council ten years ago.

One of the benefits about crafting a talk is that I get to reflect and revisit my own intentions.  I thought about why we began the Council, (to have a mechanism to formally introduce the family voice into the hospital), how we did it and what we did.  (I’ve written about some of what we did here and here and an article about their Family Talks program is here).

I realized while preparing my talk that how we created the Council and subsequent patient and family centred care initiatives was through first building a caring community amongst families, staff, physicians and leadership.   And that is because community engagement or patient centred care or whatever you want to call it –  is first and foremost a social movement.

Margaret Wheatley says it well:

wheatley

And the guy dancing with his shirt off in the video above?  The people willing to dance with their shirts off begin the movement, but it is the folks who join the dancing on the hill who continue it on, as has happened at the hospital long after I left.

I’m proud to have been a part of this movement so long ago.  My fear for other organizations is that engagement has become merely a volunteer coordination exercise to get butts around the boardroom table. I wring my hands because I can see that the intention of community engagement is being eroded by bureaucracy and professionalization.

My epiphany last night for folks looking to start or revitalize a movement: Harken back to your grassroots, to your community, to why you are doing what you are doing, because that’s where the heart of a movement really lives.

 

cut the red tape

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My son is 15 years old and loves to participate in sports.  We’ve learned the hard way that most sports teams don’t want him because he has Down syndrome.

Alas, true inclusion in recreation or sports has rarely happened in real life particularly as Aaron has gotten older.  One exception has been his high school, where he has heartily been welcomed in Physical Education classes and his teacher has embraced the modifications that he requires because of his bum knee, intellectual disability and short stature.  Hurrah for the inclusion champions at his school.

Outside of gym class, Aaron been pushed into segregated sports activities.  I’ve come to peace with this, despite my philosophical insistence on inclusion.  Inclusion to me means belonging in the bigger community.  Being ‘allowed’ to play sports with other kids who are segregated is not inclusion.  But it is what it is and it allows my kid to be active with a diverse group of people and so that’s a positive thing.

In the community, I’m not going to waste my precious advocacy energy fighting to have a team include Aaron if they don’t want him.  So he’s slowly been moved over to segregated sports and recreation programs like those at Challenger Baseball, Down Syndrome Research Foundation and Special Olympics.

Surprisingly, here in the segregated world, accessibility comes into play too.  There is a spectrum of ease of participation.  Challenger Baseball says – your kid wants to play baseball?  Come on in!  We don’t care where you live or what’s going on with you!  Just show up!   Down Syndrome Research Foundation says welcome to our Bollywood and Taekwondo classes!  Sign up if you can afford it (if not, you can ask for a bursary)!  You don’t even have to have Down syndrome!  These are good models and make it easy for kids to be active and have fun.

Now I pause at Special Olympics.  I know Special Olympics is a beloved institution so I’m going to get my hand slapped for this.  But I am going to say it anyway.

Special Olympics has grown into a massive organization. Along with growth comes bureaucracy. Accessibility for people with disabilities here is marred by red tape. Your athlete has Down syndrome?  He must get a controversial neck x-ray before he can register.  You live out of region and your local program is full?  You aren’t welcome on another team, unless you get approval from your home region to transfer over.  And then the transferring region has to approve you too. That requires having many forms filled out and then waiting and waiting, as my son has been doing for the past month.  He can’t attend practice until all the paperwork is done and the season has already begun.

Who loses in the red tape environments?  It is the kids themselves.

I will surmise when an organization gets too big, it drifts away from its grassroots beginnings and loses sight of the people they are supposed to serve.  It becomes about bureaucracy, policy, risk-management, staff/volunteers and rules, not the people themselves.  I’ve seen this happen over and over again with support groups and health/human services organizations too.  This is a darn shame.

This is particularly frustrating because I keep reading articles about how children with disabilities struggle with being physically active.  If we know this is true, why aren’t we making it easier, not harder for kids to participate?

I know that people working and volunteering for these organizations are well-intentioned.  I would ask them to pause and consider:  are your policies and rules causing additional barriers for people to participate?

If they are, I’d respectfully suggest it is time to untangle and take a good hard look at all your red tape. Who is this red tape serving anyhow?   Has red tape become a barrier for people to participate?  And is that okay by you?

Instead, let’s do what we can to let kids be active and have fun and never forget that sports and recreation is not about us adults.  Make it easier, not harder, for our kids to participate.  Help them find ways to be as healthy as they can be – and in the process, to find belonging and friendships too.

 

don’t give yourself away

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I have been guilty of sharing my story with whoever asks me: media, conference organizers, foundations and health organizations.  I did this for many different reasons:  I was flattered to be asked; my voice had often by suppressed in clinical settings, so finally I had a chance to be heard; telling my story was healing; I felt pressure to speak up for those who couldn’t; I wanted to use my story to make change in the world; I wanted to inspire others to be more compassionate and kind; I wanted to be liked; I am not (that) scared of public speaking; I felt obliged to give back to the organization that was asking.  I wasn’t that choosy and I mostly said yes, yes and yes.  I was a cheap date.

No more. A wise friend taught me to be selective.  This is my call to action for other patients and caregivers who are asked to tell their story:  Be picky.  You are worth it.

I gave a talk last night to my friends at the Rare Disease Foundation about sharing your story in public forums.  My premise was:  you get asked to give a radio interview or a talk about your child’s rare disease.  How do you respond?

My suggestion is to first pause and think:  Why am I telling my story?  Is my intention for sharing my story in alignment with the intention of the person or organization asking to hear my story? Can they be trusted?  Have they shown me respect?

If these answers are no, then say no.

Is your spidey sense tingling?  Is your gut telling you something beyond just the regular anxiety that comes with speaking?

If these answers are yes, then say no.

Here’s an easy assessment:  is everybody else telling their story paid to be there and you are not?  Then for sure say no.  That’s just plain old inequity and that’s not fair.  Don’t do paid work for free.

Do you feel ready to tell the hard parts of your story in a constructive way?  I recently was asked to share my cancer story at a conference.  Upon reflection, I realized that I am still terribly angry about the way I was treated in the hospital.  I have not fully processed the medical and emotional trauma that went along with my experience.  It would not have been healthy for me to stand up before an audience and share my story in public, so I said no.

Consider if you are a family member: are you sharing your own story as a caregiver or your loved one’s story?  If it is your loved one’s story, is this your story to tell?

This pause to think about and assess requests is new for me.  I still believe it is only through stories that we will change this world.  I’ll continue to share on my blog, as this is a platform I can control.  I’m my own editor – my quotes won’t get taken out of context here and I am in charge of my own headlines and messaging.  I vow to find spaces that are safe to share my patient and family story.  I will work only with organizers, interviewers and audiences who recognize it is an honour to be given a glimpse into a patient or family’s life and who behave accordingly.

I sound jaded, but this is hard-fought wisdom.  Our stories are a version of ourselves.  They are a gift. Don’t give yourself away.

start here for meaningful engagement

Meaningful family engagement

The original image is here on Karen Copeland’s Champions for Community Wellness website. Please use it, share it, but don’t alter it.  Give credit back to Karen’s site.

I keep hearing that researchers, patient engagement staff, clinicians and administrators are well-intentioned when they are tasked with including patients on their committees, in their conferences and with their research.

Let’s move past being well-intentioned to actually doing patient and family engagement right.  If you don’t evolve beyond well-intentioned, there is a chance you are causing harm to people with your misguided efforts.

I also hear of ‘patient engagement training’ that is offered to patients but I can tell you that the other group that need training are the staff who are actually trying to do the engaging.  And you know who should be facilitating this training in a paid work capacity?  The patients and families themselves.

I could share many resources, written by patients and families (like the Patients Included Charters), but let’s start with this infographic.

This tip sheet says family engagement, but swap in the word patient or person or anybody you say you want to engage in your work.  Think of these tips in every single interaction you have with these folks.

Use it as your lens to treat all people with respect in a meaningful way.

(Big credit to Karen Copeland for being open and sharing her creative talent to partner with me to create this work).  

today my therapist fired me

You knew what you had to do…
and the road full of fallen
branches and stones.

But little by little…
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognized as your own.
-from Mary Oliver’s The Journey

Eighteen long months ago, cancer brought me to my knees.

In a desperate attempt to feel better I tried many things, including obsessive reading, soothing music, meditation, yoga, poetry class, art therapy, walking, podcasts, eating and not eating.  I searched for and found a good therapist. I was in such bad shape last year, wracked with panic, doom and depression, sometimes I saw her up to once a week.

I did hard inner work, including looking at trauma, my family of origin and all that shit.

Today my beloved therapist told me she’s confident I’ve done the work and it is okay if I stop seeing her. I’ve decided I’ll take her words as a compliment instead of a rejection.  I’ll move to maintenance mode and know she’s part of my safety net if I fall again.  There should not be shame in needing others.

Cancer healing is a slow and arduous process. I was privileged enough to take time off to recover and I can afford the costs of therapy, which not everybody can. I’m grateful for that.  Oncologists, insurance companies, employers, families – stop rushing people to get back to ‘normal.’  There is no more normal once you’ve had cancer.

Cancer is not a gift. I’m not fixed. I’m not better than ever. I will always be a person who had cancer.  I think I’ll mostly be okay. I’ll surely stumble again in my life – whether the cancer comes back or not – but I hope I now have the awareness and the tools to slowly get back up with love and support.

I wish administrators, clinicians and the world would realize that emotional healing is as important as medical treatment. Cancer is so much more than cutting out tumours. It is a life-rattling, life-altering experience. Maybe that’s why so many people in my life ran the other way when I was diagnosed. It is terrifying, both for me and my family and friends who steadfastly walked by my side.

Mental health matters for all kinds of recovery and it should be valued and funded appropriately. Take note, cancer agencies and cancer hospitals with skimpy budgets for the emotional care of patients.  If you don’t consider emotional care, you aren’t caring for patients.

I promise to use my big mouth and my modest platform to keep squawking about how crucial it is to consider the whole messy beautiful person in health care.  Health care is despairing today.  It needs an strong infusion of compassion and empathy – for patients, families and staff and physicians alike.  Let’s turn towards each other’s pain.

more bold actions please

smoke

I’m watching the events of the Canadian Medical Association’s Health Summit in Winnipeg unfold on Twitter.  I’m pleased they offered patient scholarships and that there are 27 Patient/Caregiver Advocates there in amongst the 700 health professionals, including a handful of my friends and colleagues, like Julie Drury, Donald Lepp and Courage Sings.  I admire them for their perseverance and commitment, as they have travelled great distances to show up because of their dedication to partnering with health professionals.  I’m sitting here in my bathrobe at my kitchen table, not even having bothered to apply for a scholarship.  I’m weary. I tip my hat to these patient/caregiver leaders.

At the very same time, there is a Doctors Stopping the Pipeline Bold Action and Witness Rally this morning, led by the Canadian Association of Physicians for the Environment (CAPE). Physicians have gathered at the Westridge Marine Terminal in Burnaby, risking arrest if they get too close to the gates and violate the court injunction because they believe that climate change is a threat to public health. (I believe that to be true, too, and my husband is down at the rally representing our family).  The sky is thick with smoke from the wildfires today.  The sun is but a red dot in the sky.  I refuse to accept this as the new normal.  Wildfires have been made much worse by climate change.  It is time we connect the dots.

There are 700 physicians in a ballroom at the Convention Centre in Winnipeg and a handful of physicians standing before the Kinder Morgan gates in the suffocating smoke.  Thousands more physicians are working hard today in Canada in emergency rooms, surgery theatres and clinic offices.  They are doing the work that needs to be done, but something’s gotta to change.

(Patients are)…the greatest unused asset in health care system today – Dr. Brian Brodie, Chair Canadian Medical Association

This quote comes from Dr. Brian Brodie from the Health Summit this morning. While I wince at being called an asset, I agree with this philosophy and appreciate the notion of patient engagement has been identified as important concept for physicians.

I’m both a patient and a caregiver.  I’m always looking for opportunities to share my feedback, stories and wisdom with health professionals.  But post-cancer, I’m tired of having to be the one to hustle.  I put up my essays on my blog and whoever reads it, reads it.  I’m exhausted from begging for a seat at the grown up table.

What needs to change?  More bold action and more witnessing, like at the rally this morning.  If you want to partner with patients and families at point of care or in your organization, just start doing it already.  This would be a bold action.  Grab a page from the CAPE playbook and stand up for what you believe in.  Come to work every day to bear witness and hold space for the suffering of patients and families. Don’t turn away.  I’ve had enough with the hollow words on strategies and mission statements followed up with no sustainable change.

I hope that every one of those 700+ delegates leave the CMA Health Summit with a firm commitment to follow through on their bold actions.  I guarantee that change will not happen waiting around for the system to change.  Change will happen one single person at a time, and the only way we can do this is together.

a good experience

boob squish

Today I had a dreaded mammogram appointment.  Dread, dread, dread.  Fret, fret, fret.  Ativan, ativan, ativan.  (Don’t worry, I only took one Ativan).

I have this theory if all us patients write detailed thank you notes to health professionals who care for us in exemplary ways – those who go ‘over and above’ – and we make sure we also send these notes to their managers, then maybe, just maybe, it will dawn on administrators what is important to patients.  If these health professionals are held up as role models, as identified by the patients, the people they signed up to serve, then the others who do not get recognized or worse, those who get complaints, will pale in comparison.  Then the health system will tip towards the champions and consider their actions as best practice.  The others will slowly fade away.  This is the vision that I dream in my dreams.

I once called this the Thank You Project.

Here is the letter I sent to the manager of the young lady who was my mammogram technologist today:

August 7, 2018

I wanted to write a note to say kudos to a mammography technologist named Sarah who did my mammogram this afternoon.

I was diagnosed and treated for breast cancer last year. I have had mammograms at other centres and have to say that the experience with Sarah today was over and beyond what I’ve experienced anywhere else.

Sarah was welcoming. She introduced herself by name, made great eye contact and gave me a warm smile, which immediately alleviated my anxiety. My last mammogram was excruciatingly painful, as my left breast still has quite a bit of edema from my treatments. I was quite nervous and woke up early this morning worrying about the appointment.

Sarah’s tone set me at ease. (The dim lights and soft music are nice touches in the waiting room too). I was happy to be offered a gown (other places don’t have them – you have to strip in front of the technologist, which is uncomfortable) and Sarah walked me through what was going to happen. She also let me know what she was doing as she was doing it, and checked on me as she went along to make sure I was okay. She apologized for the pain that was inflicted on my sore side.

Afterwards, she told me what the next steps were with the report, so I knew what to expect and how to follow up with my physician myself.

These all might seem like minor things but they are very important to patients. Us folks who have already had breast cancer arrive at follow up appointments carrying along the extra baggage of trauma from our treatment and having had the life-shaking experience of having had cancer. Often it was the mammogram that identified we had cancer to begin with, so going for mammograms reminds us of that dark and horrible time when we first got diagnosed. Of course, we are also scared that the mammogram might find that the cancer has come back – recurrence is a deep fear that never goes away.

Being treated by kind staff with respect and dignity helps alleviate some of our suffering. The experience with Sarah was about a thousand times better than the one I had at a private DI place a few months ago. After I saw Sarah, I felt calm and ok, not traumatized and rattled as had happened at the last place.

Please pass on my gratitude to Sarah for her professional and compassionate work with us vulnerable women and let her know she’s helping us heal by making a positive contribution to the well-being of cancer patients. She does this through her smile, her gentle approach and clear explanations. She’s a real rock star and your hospital – and us patients – are lucky to have her.