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.

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.

our sisterhood of pain

IMG_1414It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences. -Audre Lorde

I bring my red Moleskine notebook to every oncologist appointment. In it I’ve carefully recorded the date and the questions I need answered. I haven’t seen my official oncologist in months. I catch a glimpse of her in the staff room and hallway, but she doesn’t see me. Instead, I get the family physician in the clinic or the oncologist resident. I know this is how it works. I’m post-treatment with a boring low-grade cancer – and I don’t want to be an interesting case for an oncologist – but I can’t help but feel unimportant by this rejection.

Regardless of who I see, I try to be organized and look put together for whoever shows up in the treatment room. If I’m feeling stronger and in self-advocating mode, I’m sure to dress up and have make-up on. Is it wrong of me to do this, to lean on my privilege? I’ve learned over the years that I get listened to and taken seriously by clinicians if I look and act like them as much as possible.

I once heard of a mom who was a First Nations woman who had a kid with a disability. Every time she went to the children’s hospital, she dressed up in a (goddamn) business suit to purposely overcompensate for the shocking power inequities between patients/families and health care professionals. This power imbalance was exacerbated by the fact she was Indigenous. Is this okay? No. No it is not okay.

The worst part is that many health professionals don’t even realize they contribute to these imbalances with their obliviousness to their own privilege. I wrote a review of the brilliant book When The Spirit Catches You, which highlights this concept and is a must-read for anyone working in health care.

I don’t need someone to give me a voice. I already have a voice. I need someone to listen. If I have to get dressed up to be heard, I get dressed up. Should I be able to present disheveled in my sweatpants? I should, but then I’ll be judged. This isn’t paranoia; it is my reality.

I’ve been written off as a ‘hysterical mom’ many times when I’ve accompanied my son to the clinic or hospital. I’m careful not to show emotion – to not cry or to raise my voice, even if I’m upset. Recently, I asked a pediatric audiologist to ‘please speak to me more respectfully’ so she would stop her sighing and eye-rolling at my questions. I shouldn’t have to ask to be treated respectfully. My standards are not too high. As a patient or family member, I wish to be treated by health professionals with the same common courtesy that is afforded to a colleague.

(Oh wait, health professionals don’t necessarily treat each other courteously. Scratch that concept). Think of me as someone you love, then, if that helps. As your sister, wife or mom. No matter how well-dressed or well-spoken (or not) I am. This Cleveland Clinic classic video highlights this empathetic approach.

Recently, there was yet another article published in a medical journal written by a physician who became a patient. I appreciate the author’s humbleness and recognition of his own privilege. Here is a male oncologist/patient, asking for the receptionist to smile. I’ve been calling for receptionists smile for years, but who am I? I am just another layperson patient, a middle-aged breast cancer patient, a mom of a kid with Down syndrome. I do not have an oncologist’s platform.  Health care loves to listen to doctors.  To regular people, not so much.  Therein lies the problem.

It is important to note that I am white, well-off economically, generally well-spoken and I have worked in health care administration my entire career – specifically in patient and family experience for the past 13 years. Alas, I am also a woman and a patient, which knocks me down a few rungs on the health care ladder of status. I struggle to be taken seriously.

There is starting to be stories about how much of this power imbalance is due to gender. I applaud these stories. May they continue to be told.

I wrote about my own ‘lady’ experience in March, being brought to the Emergency Room by ambulance in excruciating ovarian pain. Joe Fassler writes about his wife’s similar story here in The Atlantic.  Sarah Frey also recently published this piece on gender-based health care for CBC news, and Jennifer Brea’s important film Unrest is about myalgic encephalomyelitis, a neglected women’s issue. There’s so much more to say about this gender imbalance in our sisterhood of pain.

The great imbalances reach other people too – those in the LGBTQI2-S community, those with disabilities, those from a different race or culture – I mean, I could go on and on. What does it take to be listened to by the health care system? Do we have to be exactly like health professionals to not get diminished or dismissed? Mostly yes, but sometimes no.  Let me share a positive example, my recent little ray of light.

I had my oncology appointment on Thursday. While I approached the day with oncology dread – waking up at 5 am with my head whirling; carefully preparing my questions in my little notebook; driving white-knuckled to the appointment; avoiding parking at the cancer hospital (the parkade there sends me into a medical PTSD tailspin); taking an Ativan to calm the hell down (an Ativan prescribed to me by an oncologist – that I only take when I have a health care appointment #irony); picking up a Starbucks to bring with me to the clinic as a crutch/my armor; walking in like my friend Isabel taught me, like I am The Queen; and asking the medical assistant not to tell me how much I weigh (the very first thing they do there is weigh me, my least favourite activity on earth).

Still, despite my many strategies to stay strong, I sat in the windowless, joyless clinic room, waiting for a knock on the door, feeling small, hunched over and nervously picking at my fingers until my hangnails bled.

In the end, the person who knocked at the door was a senior oncology resident, a pleasant man who forgot to introduce himself, but who was otherwise lovely. We had an actual conversation about my four questions in my notebook – a back and forth – where I asked and he shared information and options. I listened and then we discussed resolutions. I felt as if we did tackled all my questions together, in a most collaborative way.

I left this follow-up appointment feeling greatly relieved. If this doctor thought I was hysterical or difficult, he didn’t show it. If he was rushed or having a bad day, I didn’t know. I appreciated his careful listening and consideration. It was a good experience. Yet it was extraordinary in the fact that a positive patient experience is exceedingly rare. I felt treated with courtesy, compassion, validated, understood and listened to. This is how it should be, no matter one’s gender, gender identity, ethnicity, citizenship, religion, race, disability, orientation, dress, eloquence or otherwise. (My apologies if I’ve missed anybody or used the wrong terms – I’m still learning too).

It is humanity we all so crave from the health care system – no matter – or maybe because of – our different expressions of human identity. We are all people first. I’ll keep on squawking about health care and I hope you will too. Use your voice. I’ll end with another quote by the glorious Audre Lorde, who always says it best:

When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it is better to speak.

i’m a difficult mom

difficult

Me as a mom in the hospital

I once got up in front of an audience of clinicians and announced: I am a difficult mom. I added, if your child was hospitalized, you’d be a difficult mom too.

I was on a mission to change the way family ‘complaints’ were viewed at this children’s hospital. When I resigned from my position last year, this work was left half-undone. I hope it has continued.

My assertion was this: what if family complaints were seen as constructive feedback? What if we, as staff, sought out this feedback and saw complaints as wisdom? And then we applied wisdom from families that grew from difficult situations to improving the quality of care at the hospital?  This was a common-sense, but revolutionary notion.

I drew a fancy process chart with a narrative to encourage a standardized way for staff and managers to respond to constructive feedback. I suggested that all staff – including those in clerical positions – especially those in clerical positions – be offered ‘conflict management training’ to prevent issues from escalating. This type of training teaches things like, ‘saying yes instead of no,’ – and customer service concepts. While the term ‘customer’ makes many folks shudder, think about if those who work in health care are committed to care and service. Drop the word ‘customer’ and then you can simply think about serving patients and families instead.

But first, I had to share my story in the auditorium packed with hospital staff about how I’d been a difficult mom. As with most of my talks, my intention was for the staff to see themselves reflected in my words. I asked them to think how they would respond if they had a concern when their loved one was in the hospital. I can’t imagine that most health professionals would be meek and compliant family members.

I explained how it felt to be a mom in the hospital: You may well be catching families when they are at a low point in their grief. I once had a wise physician tell me she teaches medical students that anger is often masking fear.   Often anger is misdirected. Families may be seeking a diagnosis, reeling from a catastrophic accident and worn down by the system.

I talked about the reasons why families can be challenging partners:

  • Loss of control
  • Fear
  • Pain
  • Grieving
  • Information overload
  • Feeling hopeless
  • Cultural differences with staff, leading to staff assumptions and miscommunication
  • Fear of negatively affecting their child’s care if they speak up

There are certain practical things can make this worse. Lack of sleep. No coffee. Being hungry. Worry about other kids at home. Worry about money and work. Compound that with stress about their beloved child-patient and you create a difficult situation, not a difficult family, says this article called Difficult Families?

I gently suggested: please pause and always consider how families are feeling. You might not be able to put yourself in their shoes, but move towards a kinder understanding of their perspective. One lesson I learned from my divorce was ‘don’t poke the bear.’ Why make angry people angrier? There is no healing in that.

I had been introduced to many families at the hospital in the midst of their ‘complaint’ process. I didn’t want to be the complaint lady – instead, I wanted to teach staff how to prevent complaints themselves and that’s by being patient and family centred.   I wanted to suggest how to respond to negative feedback when it inevitably occurs. (I think we can all agree that hospitals are not perfect places). This is my ‘teach a person to fish’ philosophy. Immediately shuffling families off to some complaint lady only minimizes their concerns, absolves staff of any responsibility and teaches folks nothing.

The staff just didn’t know what to do with these families. They felt defensive and took negative feedback personally. This is human nature. Some wrote families off as ‘difficult’ or ‘hysterical,’ which is an easy way to stereotype and dehumanize people so you don’t have to think of them as people anymore. It is good to pause to notice if we are categorizing people and why.

I shared some of my personal approach to partnering with families who had constructive feedback. (And if we think of it, wouldn’t all families and patients have constructive feedback after an experience, if we only we were brave enough to ask them? Why do we wait until they bubble up as ‘complaints’?).

Sue’s Philosophy For Staff Working Families Who Have ‘Complaints’

  1. Check in with how you are feeling. Don’t judge your feelings but be aware of them. Take some deep breaths. Go for a walk before you pick up the phone or meet with families if you can.
  2. Don’t delay responding to the family. Delays make things fester.
  3. Avoid escalations over email.  Be respectful and suggest meeting in person if possible. (See #7).
  4. Consider framing complaints as constructive feedback and being open to learning in order be better – both personally and professionally.  We can all improve.
  5. Consider how constructive feedback can feed into quality improvement activities to improve the experience for future families.
  6. In this purely unscientific approach, I found that the root of 90% of ‘complaints’ was that people didn’t feel listened to, so….
  7. Start by setting a warm tone for authentic listening. Consider meeting outside the hospital, going to the families in their own communities – at their homes or a local coffee shop. Give families choice in when and were they would like to meet.  Don’t drag them into the hospital again.
  8. Suspend the notion of being a fixer and show up as a healer instead.
  9. It is okay to say I’m sorry.
  10. It is okay to say I don’t know.
  11. Ask the family what they’d like to see as a solution.
  12. Follow up and do the things you promised to do.
  13. Consider asking the family if they’d like to share their wisdom with others in some way. In my experience, in time, families with ‘complaints’ have the most valuable lessons to teach to Grand Rounds, medical students, committees and councils (if they so want). Many families have a strong need to improve situations in the system so they don’t happen to other families too.
  14. Take care of yourself after challenging situations at work.  Engage in reflective practice techniques, thinking about how things went and how you would make them better next time.  Do not forget to be kind to yourself too.

There’s no research behind my philosophy. There’s just 24 years of being a mom and thinking about how I wished I was treated when I was speaking up for my children (and more recently, advocating for myself as a patient). I’ve been ignored, minimized, blacklisted and dismissed over the years. While this feels crappy because I like to be liked, I still don’t regret speaking up.

As Audre Lorde says: When we speak we are afraid our words will not be heard or welcomed. But when we are silent, we are still afraid. So it is better to speak.

It is up to those working in systems to honour all voices, not just the positive ones. You can’t be heroes all of the time. But every single person who works in health care can be a healer.  Please, help us heal.  Don’t turn away from our suffering.  You might just learn something from what we have to say.

For more on constructive approaches, read Yona Lunsky’s How to move from competing to complementary perspectives and Donna Thomson’s How We Go From Competent Caregiver to Family From Hell.

 

shed your parkas + titles at the door

tray
The Stollery Family Centred Care Council had its first meeting in October eight years ago. Soon after the holidays were approaching, so we decided to have a Christmas party. Hosting a party with this newly formed group of people seemed like a natural thing to do.

It was wholly unofficial, but in cahoots with Heather, the Family Centred Care Manager, we went ahead and did it. In the early days, we embraced a just do it and apologize later philosophy. We were pioneers in a new land.

We had no budget and we couldn’t serve alcohol in a hospital setting (of course), so my husband and I decided to host at our house.

We sent out invitations to the entire Council – senior leadership, family reps, physicians, clinicians – stressing that this was a family party – partners and kids were welcomed. We made it potluck to cut down on expenses and I think I had a jar at the door for folks to donate to our booze fund. Heather and I wrote out personalized Christmas cards for everyone. I bought sequinned Santa hats from the dollar store for all the kids. I don’t know how much all this cost. There was no funding and it didn’t matter.

As is typical for a December evening in Edmonton, it had snowed and the roads were icy and awful. But our doorbell kept ringing and boots and parkas piled up in our entrance as more and more guests arrived.

Here’s what I remember: Serving cocktails on a silver platter at the front door. Children running wild through our house: kids jumping on beds, kids running up and down the stairs, kids pulling out all my son’s toys (Note: this was all awesome).

The Senior Operating Officer of the hospital was there – her newly-retired husband had cooked an amazing dish for potluck while she was at work and he had braved the roads to meet up with her at our place. Another senior director came with her two children and husband. Her kids were playing with the so-called ‘Stollery kids’ – our kids, the patients – who were a diverse lot, a collection of children with disabilities and medical conditions. Seeing them all zooming around our house – at varying speeds, with various mobility issues – was as it should be.

My husband standing in our kitchen, deep in conversation with a dad whose child had died at the hospital the year before. Me, checking on kids downstairs, standing in the doorway of the bathroom, talking to a PICU intensivist while his young daughters ran amuck around us. A neonatologist popped by on his way from his martial arts class, leaning against the wall in the hallway chatting with a mom. It was a houseful of people connecting with people as human beings.

My husband and I hosted this party like every other party we had ever had at our house. Our formula was a bounty of food, fancy cocktails, blaring music and an open door. For whatever reason, people showed up. I understand now how important the simply showing up is. The people who came to that party were providing evidence of their early commitment to the family centred care cause. For the staff, this was an unpaid, after-hours affair. For the families, this was the end of a long day. But they still showed up. I believe this evening was a tipping point. It was the beginning of culture change at the hospital.

There were Christmas parties like this for about three years. The amount of people involved in family centred care at the hospital expanded and outgrew a house party. The celebrations switched to summer barbecues at community halls instead, which was a natural progression of growth.

But those early holiday parties were special. They were intimate and inclusive affairs.   There was a complete shedding of roles those evenings. Titles were taken off along with the parkas and boots at the front door. There was a relaxing of tightly held positions with a cocktail or two. Meeting everybody’s partners and kids felt really important. By the end of that first dark December evening, we were no longer ‘professionals’ and ‘families.’ We were colleagues and blossoming friends.

If you are reading this and thinking that there’s no way a house party with your hospital staff and patients/families would ever happen, here’s my challenge to you.

If you really want to partner with the people you serve, you need to see them – and your staff – as people first. It is your job to remove all the barriers to create an environment where you would be able to host a party at your house. (YES AT YOUR HOUSE).

If this seems impossible, you have to take away the preconceived rigid notion of what it means to be a professional, ignore the policies and procedures forbidding socializing and fund the damn party out of your own pocket if you have to.

This is not a movement created around a boardroom table. Providing opportunities to lose your title and connect as human beings is the only way you actually seal this deal. Celebrating together – breaking bread, getting to know each other, toasting to the season – is a good way to start.

the secret sauce

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I often get asked how some health organizations are successful at meaningfully engaging patients while others treat patients as if they are expendable checkmarks on their to-do lists.

This weekend, I was reminded of the ingredients that make up the secret sauce for engagement.  I was invited to the Stollery Children’s Hospital for a reunion of the youth, families and staff who have been involved with their patient + family centred care movement.  I had worked there for four years as their Family Centred Care Consultant to help establish their Council and their Family Talks program.  (Of note, I moved to BC to do the same work and failed miserably here.  You can lead a horse to water, but you can’t make it drink).

This weekend, amongst my beloved former colleagues and friends, I had a great epiphany.  My lightbulb moment was this: I was struck by three value-based elements that are mandatory for any health organization or professional who aspires to put patients first.

1. Demonstrate integrity.

There must be an alignment of an organization’s professed values and their actual behaviour. If your mission statement says Patients First then the behaviour of your organization (through policies and processes) and the actions of your staff (this includes everyone – parking attendants to clinicians and Patient Engagement staff, especially Patient Engagement staff) must actually put patients first, every single time.

This means doing serious self-reflection on how you treat ALL patients and how you handle challenging feedback. You cannot roll your eyes at ‘difficult patients’ or ‘hysterical mothers’ or say that you are ‘babysitting families’. Or dismiss patient feedback or the stories you do not want to hear.

Also, the only people who can tell you if you are patient centred are the patients themselves. You cannot decide this for yourself so you can slap it all over your website like some sort of public relations exercise.

Integrity also means if you say you want to hear the patient’s voice, you have to make space for the uncomfortable stories and honour those who share them with you. Listen hard. Don’t turn away.  There is growth and learning in the discomfort.

2. Give up your power.

If you want to collaborate with patients in a meaningful way, you have to be willing to give up your power. While patients are exceedingly vulnerable in health care settings, we also aren’t stupid. At the bedside, you have to concede some of your control and do everything you can to minimize trauma and suffering. Plus, for God’s sakes, cease all practices that strip people of their dignity and stop treating patients like dumb rats.

If you want patients around your boardroom tables, then you have to actually make room for them at those tables and treat them as equals. That includes not pulling stunts like scheduling meetings last minute, having only one token patient and demanding that people volunteer their time.

When giving up your power, you also must admit that you can’t and don’t know everything. Believing you are the expert is the ultimate patient centred care killer. Put your ego aside.

3. Grant patients a voice 

Creating opportunities for patients to safely speak up and share their wisdom supports them to heal. It also helps them connect with one another to build their own communities and find belonging. Oppressing and dismissing stories or feedback harms patients. Ask yourself: do you want to heal or do you want to harm?

If you really want to put patients first, the first step is to sit down and be humble.

My heart was bursting at the reunion.  I felt like a proud grandma.  There are so many awesome families and staff who are now lighting the way.  Kudos to the Stollery for demonstrating leadership and integrity. Brava/bravo staff, youth and families: Heather, Christine, Karen, Michelle, Amanda, Sarah, Christie and so many others.  Put your head down and keep going. You are are the role models for this work in Canada, for both the pediatric and adult worlds.

Other centres? Pay close attention. They’ve set the bar high for you.

As Don Berwick says, take off your business suits and lab coats and join together with us patients and families.  In rigid health care systems, this demands an innovative mix of leadership, culture shift, behaviour change and alignment of stars.   If it isn’t uncomfortable, it isn’t disruptive and you aren’t growing.

Demonstrate integrity.  Give up your power.  Grant patients a voice.  That’s where the magic lives.

the longest goodbye

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Friday was my last day of work as Sunny Hill Children’s Health Centre’s Family Engagement Advisor.  I’ve been in the odd position of saying goodbye since the beginning of July when I first went on a leave of absence from my position.

I wouldn’t recommend giving four months’ notice for a job.  This has been like pulling a bandaid off veeeeerrrry slowly, as I didn’t want to leave.  I loved my job.  My quest for a flexible work environment has led me back to being home-based – within the confines of our condo, nobody cares what days of the week I work, just as long as I get the work done. So it is back to the freelancing life for me.

Resigning when you don’t want to is a weird thing.  I didn’t get fired nor did I resign because I was unhappy with my job and heading to another position.  Instead I left based on a tale of woe  – the end result was a sad Sue.

I hope I left well, as the leaving really is the hardest part.  All last week there were celebrations:  a managers’ breakfast, a roundtable where folks shared what they had learned working with me – interesting, a common theme was how the managers now approach family ‘complaints’ – reframing complaints as constructive feedback to improve the quality of care and service – that pleased me.

Later in the week, I was treated to lunch at my favourite restaurant and on my last day, I hosted cake and coffee in my office, was gifted a huge bouquet of autumn flowers, and very specially – received a beautiful painting from the nursing unit of children’s hands done by the young patients there.  I felt very loved.

A very diverse group of folks popped in and out of my office on Friday for a hug and piece of cake:  administrative support staff, booking clerks, therapists, managers and physicians.  My best hug was in the hall from one of the kindest, wittiest person I know – David, the gentleman who is the maintenance man at the hospital.  This variety of staff validated my approach at work, and in life.  Everybody matters.  Everybody influences the patient and family experience in a hospital.  Every single person working in a health setting should be considered a health professional – not just the clinicians – and deserves to be treated with the same respect and dignity that we ask for as patients and families.  That love needs to be spread everywhere, all the time, to change the culture in a hospital.

Thank you to my Sunny Hill friends for the beautiful send off.  Thank you to those in my online community who have expressed care and concern for me and our son over the past four months.  We will be fine.  Having me be home-based and more available for him has helped so far.  I’m resourceful – picking up writing, consulting and speaking gigs as I go along.  I’ll miss belonging to an organization, a steady paycheque (!) and the built in social connections that go along with that.  Being a freelancer offers lots of freedom, but it can offer up loneliness, too.  I learned so much about staff engagement at Sunny Hill, lessons that I will keep close to my heart as I move on.  As I like to say, patient and family engagement and storytelling is my life’s work, whether I do it inside a hospital or not.  I am proud of the family engagement work that’s been done at Sunny Hill over the last year and a half, and I know that the new Advisor will be in good hands.

Most importantly, it was an honour to have been invited to catch a glimpse into the complicated, beautiful lives of families who have children who are served by this pediatric rehab centre. May they continue to find the strength to use their voices and to share their stories to make the world of health care a better place, and may all the health professionals at Sunny Hill continue to create opportunities for the listening.