Health care's raison d'être is to care for patients. If patients and caregivers aren't an organization's #1 stakeholder - the first people to be heard, believed and consulted - what are you even doing? Health care "transformation" is going entirely in the wrong direction.
I’m writing this in a rage and yes I know you are supposed to write from your scars not your wounds, but if my wounds never have a chance to heal, this is what you get. I’ve brought receipts with links at the end of this essay.
What has tipped me over is the continuous parade of physicians telling patient stories and patients rarely being given the opportunity – in the media, in organizations, at the bedside – to tell their own damn stories. Do you see patients telling physician stories? NO.
The patient voice is being obliterated by the voices of those who have more power than we do. Any progress we might have made pre-COVID in sharing the experiences of regular ole people in health care has been erased by the platform clinicians have been gifted by media and conferences to tell their own stories in the midst of their own workforce crisis. I appreciate that physicians have become woke to patients’ suffering – because of their own illnesses or sometimes because they are exceptional clinicians – but we are not making progress until the people themselves are allowed to speak. We are sliding backwards. Pass the freakin’ microphone.
If patients are the reason for being in health care, why are we rendered invisible? WE ARE RIGHT HERE. Look! Over here! The ones in the drafty hospital gown hunched over in the chair in the hallway.
Speaking of looking around, health organizations are overlooking patients and instead bringing in former slash and burn politicians as well-paid speakers to talk about transformation. This is a ‘very fine people on both sides’ move. As I said in the quote above, the #1 stakeholder in health care are patients and families. Not thinly veiled neoliberalists who benefit from dismantling our public system.
Speaking of neoliberalism, there is a ‘flu shot fiasco in my province that points directly to well-paid consultants and large tech vendors making a big buck off the backs of patients.
As for health organizations, I’m not much of a joiner, but I tried my hand at being active in an organization that said they wanted to partner with patients, but despite my many failed attempts, it is clear that they absolutely do not. I do not like being tricked. People who work for these so-called advocacy organizations? Stop wasting patients’ time.
Organizations continue to bring in patients to only share their stories at their strategy sessions as inspiration porn, as pawns on their check lists, to make themselves feel ‘patient-centred’ – using people who are sharing about the worst moments of their lives to pat themselves on the back like benevolent saviours.
Meanwhile, the patient experience is getting much worse.
Last night there was a seventeen hour wait in a Canadian children’s hospital Emergency Department. People are being given medical treatment on waiting room chairs. Miserable staff experience due to workload means a miserable patient experience. There are more and more stories about patients at point of care who are being minimized, dismissed, ignored, not believed and not listened to. The collapsed health care system affects patients the most deeply, and yet we are the first people to be thrown under the bus.
If I see another gleeful selfie of a medical conference during an active pandemic with unmasked participants, I’m going to start screaming and never stop. Travelling to health conferences is the ultimate status symbol for the executives and high-ranking clinicians. Did it occur to these influencers that the reason health care has collapsed is because you are spreading COVID and creating more COVID patients with your refusal to wear a mask?
The icing on the cake is so-called health leaders writing from their opulent home offices about leadership and how COVID has contributed to learning loss for their precious children, while disabled kids like mine have to drop out of unsafe schools so they don’t die in this pandemic. It is hard to evaluate learning loss when you are dead.
The climate crisis might seem like an aside to this rant about health care, but it is the root many all our problems. Every day I wake up to an eerily red sun and a sky hazy with wildfire smoke - in Vancouver, in October, we should have rain and cool temperatures almost every day. Meanwhile in my province, a climate activist is about to be disqualified from a provincial party leadership race. The Trans Mountain pipeline is being built on the mountain that I live on. Politics recently took a hard turn to the right in Vancouver. We are heading in the wrong direction.
Normally I end on a hopeful note, even holding up my ‘Believe in Hope’ Ted Lasso mug. Instead today I’ll share a new word: latibulate: to hide oneself in a corner.
Unfortunately, I can’t go hide in a corner. Unlike the wealthy who are jetting to conferences and tropical locales I, like most of us regular people, have to get back to work.
The revolution was not born out of the status quo or complacency. It was born out of white-hot rage.
Preach from your scars, not your wounds. – often attributed to Nadia Bolz-Weber
Lessons from a “Difficult Patient” The New York Times
Trans Mountain Boondoggle The Tyee
Suddenly, Vancouver is Sim City The Tyee