inspiring canadians to live better.

healthing leaf

inspiring canadians to live better.

healthing leaf
get healthing in your inbox with the morning checkup and weekender newsletter!
home / diseases & conditions / cancer / breast cancer

health care that's 'devoid of kindness' and 'hipster doughnuts': sue robins on surviving life as a patient

vancouver activist, author and breast cancer survivor sue robins shares critical insights on the state of canada's health-care system in her new book, ducks in a row: healthcare reimagined.

by karen hawthorne
published jun 08, 2022
read time 7 minute read
join the conversation
read time 7 minute read
join the conversation
advocate and author sue robins on surviving life as a patient
sue robins' latest book is aimed at helping people move health care “from a corporate model to the foundation of caring for each other as human beings.” supplied
vancouver activist, author and breast cancer survivor sue robins is a straight shooter when it comes to talking about canada’s health care system and what needs to change to make it better. and that means better, gentler, kinder and more compassionate for everyone, from hospital administrators to doctors, patients, caregivers, staff and all the part-time workers who provide janitorial and food services in care centres across the country. she knows firsthand what it’s like to feel anonymous, going through the assembly-line procedure of radiation treatment, or waiting for her number to be called for surgery. she also knows what it’s like to be a parent of a child with down syndrome looking for empathy to navigate treatment and supports.
her new book, ducks in a row: health care reimagined, is a practical guidebook for people to help shake the status quo and move health care “from a corporate model to the foundation of caring for each other as human beings.”
robins talked to healthing.ca about take-aways from the book, what keeps her pushing for change, and advice for people who feel stuck in a system that doesn’t meet their needs.

what was your motivation behind the book?

i wanted to write a book for everyday people about everyday change. it’s not written for those in so-called leadership roles, which i think most of our stories are for the corporate ceos. it’s time to start bringing the locus of control down to where the people are. and when i say people, i mean patients and caregivers and staff and clinicians. this is a book for them so that they feel encouraged to go out today and make change where they can make change.

related stories

opinion: we undervalue caregivers because we don’t value the people who need care
more than 7.8 million canadians over the age of 15 provide an average of 20 hours a week of care, totalling 5.7 billion hours of unpaid care per year. isn't it time we cared for caregivers?
the voices of caregivers are getting louder across the country. they need help. getty

living with sickle cell disease means also battling racial discrimination to get care
lanre tunji-ajayi founded the sickle cell awareness group of ontario in memory of her brother who died of the disease at age 29, and to tackle the racism that is hurting patient care.
"i still get calls from patients at 11 p.m. because they need to talk to somebody, or they're in pain, or they're not getting the right care," says lanre tunji-ajayi. supplied
story continues below

you have been through a lot personally, and it’s so hard to move policy forward. how do you find the energy and passion to keep going?

sometimes i don’t have the energy and passion to keep on going. somebody called me a tireless advocate and i am definitely not a tireless advocate. when you have a child born with a disability, advocating never ends. so yes, i do take rests. i do surround myself with like-minded people. i realize that i didn’t write ducks in a row to convince people. i didn’t want to always be arguing with people that health care should be rooted in humanity and caring. if you don’t believe that, this book isn’t for you. so i wrote it for people who are already there and who know that health care can — and should — be a better place. that really helped take a lot of pressure off of me.
also, when i was diagnosed with cancer, i had to figure out how to find joy in my life every day. i have my coffee in the morning without looking at technology, every day i go for a walk and we got a puppy! any way to infuse joy, for advocates in particular, is really important because otherwise we just burn out because everything can be so terribly negative and dour.

what are the top three things that are wrong with the health-care system right now?

powered by
breast cancer canada
story continues below
the main problem is that health care has been built on a corporate model, so it’s being run like a business here in canada, even though for the most part, it is publicly funded by the government. so all the ceos, all their boardrooms, all their avocado toast and huge salaries are built on a corporate private model.
i think the second problem is we’ve drifted away from why we do health care, which is to care for other people. i believe it should be about caring for each other and forming relationships that reciprocate that care, but we’ve lost sight of that.
the third problem is we have built health care in canada based on efficiency. everything is built around how fast you can shove people through the system. in fact, that comes from the quality assurance model from the toyota car factory. so basically we’re treating health professionals like they’re factory workers and us patients are treated like we’re car parts at a car factory: how quick can you churn them through the system? and in doing that, efficiency trumps empathy every single time.

what advice can you share with patients and caregivers who find themselves trapped in a health-care system that doesn’t meet their needs?

i think it’s important for patients and caregivers to know this is the secret of health care in canada: you can’t, especially now since the pandemic, rely on health care to be there for you in the way that you could have before. and it’s a chilling realization. i call this the burden of being a patient. it is your responsibility to follow up constantly. if you have a referral, you have to phone, don’t assume they’re going to send it to you. don’t ever assume no news is good news with test results because we’re still faxing information, they get lost all the time. being a patient or caregiver is a part-time job. i’m not saying that’s ok, because i don’t think it’s ok to off-load that work onto patients when we ourselves are vulnerable and sick and worried. but that’s the reality.
story continues below
sue robins knows firsthand what it’s like to feel anonymous, going through the assembly-line procedure of radiation treatment. supplied
sue robins knows firsthand what it’s like to feel anonymous, going through the assembly-line procedure of radiation treatment. supplied
here in canada, we’re expected to be very well-behaved, compliant patients. so you will get run over and left behind if you don’t do your own version of rabble-rousing. this is very uncomfortable for a lot of people and it certainly was for me — i’m quite an introvert. i don’t like speaking up. so know that that’s what you have to do in order to push your health care forward.
also, it’s important to surround yourself with a community of people who understand you. i had breast cancer and eventually i went to a cancer retreat — it was so important to my own mental health. because you actually think you’re going a little mad. everything is so upside down now in health care. it’s important that you have safe spaces and safe people for you to talk to, and who can support you as you go along your way.

how important is the patient and caregiver to a health care team?

health care loves to talk about interprofessional practice, meaning all the different health professionals are working as a team, which they don’t do that well to begin with. they don’t play nice with each other in the sandbox and that causes problems for patients. but the fact is, patients should be considered part of the interprofessional team because we or our loved ones know ourselves, our condition, our bodies really well. so when they start talking about teamwork in health care, i always put up my hand and say we have to ensure that patients and their chosen caregivers are part of that team and you need to partner with them.
story continues below
as patients, we can make the jobs of health-care professionals easier because we know things that they don’t know. for instance, when i bring my son in for blood work, i know that his right arm is a lot easier to get blood out of than his left. but so many times the lab tech would dismiss what i’d say and try to figure it out themselves.

the most disappointing moment as an advocate and the most hopeful?

my most disappointing moment as an advocate was when i got diagnosed with breast cancer and went through the whole process of diagnosis and treatment five years ago. i had been preaching about kindness in health care and compassion for many, many years because i have a son with a disability. what i realized when i went through my cancer treatment was that it didn’t seem like any of those messages had gotten through because my actual cancer experience in the cancer hospital was devoid of a lot of kindness. i was shocked by that because i thought as a cancer patient, you think you’re going to die. it’s a big diagnosis so you think people would treat you kindly and tenderly.
my best moment was my son’s first interaction with his pediatrician when he was about two-months-old. what a beautiful appointment that was. she set the bar for me about what health care could be like. she scooped aaron up in her arms and held him, and the first thing she said to us was you have a beautiful baby boy.
story continues below
she started our relationship from a place of strength, as opposed to all the other specialists who had seen him before, and focused on what was wrong with him, his risk statistics. she treated him like a human being and that experience really showed me that health care can be better.

ending on a high note, what is your favourite treat?

i’m going for a mammogram appointment this afternoon, and my daughter, who happens to be an rn, said, ‘mom, what are you going to do for yourself after your mammogram? are you going to go get a doughnut?’ i had this habit after my cancer treatment to go for a walk around the hospital in this hipster area of vancouver and find myself a hipster doughnut. so i might just do that. maple dip or cinnamon sugar.
sue robins’ latest book, ducks in a row: healthcare reimagined, can be ordered here. she can be reached online at suerobins.com and on twitter.
 
karen hawthorne is a toronto-based freelance writer.
don’t miss a thing: sign-up for healthing’s newsletter
thank you for your support. if you liked this story, please send it to a friend. every share counts. 
karen hawthorne
karen hawthorne

karen hawthorne worked for six years as a digital editor for the national post, contributing articles on health, business, culture and travel for affiliated newspapers across canada. she now writes from her home office in toronto and takes breaks to bounce with her son on the backyard trampoline and walk bingo, her bull terrier.

read more about the author

comments

postmedia is committed to maintaining a lively but civil forum for discussion and encourage all readers to share their views on our articles. comments may take up to an hour for moderation before appearing on the site. we ask you to keep your comments relevant and respectful. we have enabled email notifications—you will now receive an email if you receive a reply to your comment, there is an update to a comment thread you follow or if a user you follow comments. visit our community guidelines for more information and details on how to adjust your email settings.

you may also like
asian woman wearing pink ribbon showing support for breast cancer awareness isolated on pink background. health care concept
breast cancer in canada: stats, impact and resources
pink ribbon for breast cancer awareness. female patient listening to doctor in medical office. support people living with tumor illness.
health canada-approved treatments: breast cancer
marcelle abou rjeily teaching her daughter to drive.
what it feels like: ‘i will never be my normal’ after surviving multiple cancers
male doctor explaining young lady results of mammogram, breast cancer awareness
study shows no significant difference in mortality rates among common breast cancer treatments
separate profile photos of michelle audoin and dr. muna al-khaifi
make the most: essential support and resources for metastatic breast cancer patients
you may also like
asian woman wearing pink ribbon showing support for breast cancer awareness isolated on pink background. health care concept
breast cancer in canada: stats, impact and resources
pink ribbon for breast cancer awareness. female patient listening to doctor in medical office. support people living with tumor illness.
health canada-approved treatments: breast cancer
marcelle abou rjeily teaching her daughter to drive.
what it feels like: ‘i will never be my normal’ after surviving multiple cancers
male doctor explaining young lady results of mammogram, breast cancer awareness
study shows no significant difference in mortality rates among common breast cancer treatments
you may also like
asian woman wearing pink ribbon showing support for breast cancer awareness isolated on pink background. health care concept
breast cancer in canada: stats, impact and resources
pink ribbon for breast cancer awareness. female patient listening to doctor in medical office. support people living with tumor illness.
health canada-approved treatments: breast cancer