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On Friday I wrote about my personal and political experiences as a patient activist and my take on the new patient ombudsman position to which Christine Elliot has been appointed. I have a lot more to say about many aspects of this appointment and its implications.
Today, my starting point is the state of emergency that has been declared by the Mushkegowuk Council. On January 20, the council, representing seven First Nations in Western James Bay and Hudson's Bay, released a report entitled "The People's Inquiry into our Suicide Pandemic." Hundreds of children and youth in these First Nations communities have reported considering suicide. A 2010 report from the Northwest Local Health Integration Network found that First Nations in the area have suicide rates 50 times the Canadian average for children under 15 years old.
"The Mushkegowuk were forced to take the situation into our own hands; we didn't want to see any more of family members and children die," said Grand Chief Jonathan Solomon on the release of the report. "The people sourced their own funding and started an in-depth review of ourselves, by ourselves."
Prior to taking this step, the council attempted to get governmental support, but all requests were rejected. The inquiry has resulted in recommendations for all levels of government and identified issues that have led to this emergency, including the ongoing traumatic impact of residential schools and current issues of housing, poverty and abuse. The report makes it clear that "Nobody wants to die. They want the pain to stop."
Mental health support urgently needed
In a CBC radio interview about her appointment as patient ombudsman, Elliot flagged patients with mental health issues as a priority. But in the eight years she served as Critic for Health and Long-Term care for the Official Opposition, when did she use her platform to raise the alarm about the largest-scale and most devastating health crisis in the Ontario region? How can we have faith that in her new role she would offer any concrete support for the people of these First Nations? And if this isn't her starting point as a provincially funded and appointed patient advocate, what is?
TVO's Steve Paikin is in favour of the new patient ombudsman position. He points out that all the players in health care have their own associations: doctors have the Ontario Medical Association and nurses and other staff have unions. Even the hospitals themselves are represented by the Ontario Hospital Association. Paikin says that it's time for patients to be represented. But even he is concerned that this is a "downstream" solution when health-care issues need to be addressed "upstream." To de-corporate-jargon that: don't wait until patients have spent months bleeding and in pain to find out how the health-care system failed us -- do something before the harm is done. For the seven First Nations represented by the Mushkegowuk Council, the most toxic upstream contaminant in Canada is colonialism. And the harm has been done. It is now time to offer the resources being explicitly requested by these communities: mental health workers, crisis co-ordinators and the money to pay for them.
But just as I have to see different specialists to discretely address each of my body parts, politically generated solutions for health care produce arbitrary disconnects between facets of people's lives that we experience all at once. So Elliot is assigned to "patients." Which ones will her office prioritize? Which aspects of the patient experience will she actually be charged with improving? There has already been discussion questioning how independent from the government she will be as she will function as an employee of Health Quality Ontario, an agency that describes itself as arms-length from the government but is directly funded by and reports to the Ministry. Former Ontario Ombudsman André Marin argued that the position should have been part of his office as they function completely independently of the government.
Putting a friendly face on cuts
I mentioned on Friday that Elliot has already promised to only make "affordable" suggestions. So when she says she wants to "shift the emphasis from hospitals to home and community-based care," I can only hear that she wants to put a friendly face on government cuts to hospitals.
Since the '90s, health-care activists have understood the shift to home care as a code for privatizing public services.
At worst, this new patient ombuds position is a cynical distraction. Avoiding actual solutions by throwing money at a shiny new position with a smiling face to front it.
Hospital staff have described the current work climate to me: the drama of high-profile people being walked out after decades, the anticlimax of hundreds of nurses losing their positions without fanfare. Last March, The Ontario Health Coalition's Code Red Report had an exhaustive list of cuts to staff and infrastructure across the province.
But if Elliot doesn't accept my critique of this situation, maybe she would believe her successor: Progressive Conservative health critic Jeff Yurek. On January 16, he laid the crisis in health care squarely on the funding freeze put in place by the Liberals. He said, "When you do frontline heath-care cuts, the patient does suffer, care does diminish, because nursing is the backbone of the health-care system, particularly in hospitals..."
But just for a moment, let's take Elliot at her word. She says:
"I entered public life in 2006 to advocate for the rights of vulnerable people and their families... Although my role will change, I remain committed to advocating for a fully inclusive Ontario where all people can live lives of purpose and dignity."
Let's say it's true that she is a kind and staunch advocate. That she will be tenacious about injustice. We would have to set aside the fact that she was the PC health critic who literally signed off on Tim Hudak's White Paper for a Healthier Ontario in an election when he was calling for the firing of 100,000 civil servants. We would need to ignore the war of open letters during the election that Elliot had with the Ontario Nurses' Association about her promotion of policies that would close health-care sites and fire nurses.
We can bleach clean the memory of the post-Hudak leadership endorsement she received from the Ford brothers and the subsequent photo op.
What real solutions would look like
We will instead entertain the picture painted by Health Minister Eric Hoskins that she can work across partisan lines to defend vulnerable people. First, she might recant her promise to not suggest anything that costs money. She could recognize that across the province, underfunded and overcrowded emergency departments have become the last available haven for everyone we have failed to house and whose poverty we have failed to treat. Perhaps she will advocate for safe injection sites and other harm reduction services and workers.
When she hears patients reporting horrifying experiences she might understand that when budget cuts meet the toxicity of professional hierarchies too many frontline workers mistake themselves for cops. And sick people for criminals. In her role as advocate could use her office to defend the most oppressed and marginalized people among us who are bearing the brunt of our collective failure when they are at their most physically vulnerable.
The last keynote I gave to a broad hospital audience was this past fall. Billed as a patient-expert, I expertly told them that I have learned, in the last 13 years, that there is no way to teach patients to navigate the system. Even when our choices and behaviour can affect the way we are treated, it's outrageous to expect us to expend energy managing people who hold our lives in their hands while we lie prone on gurneys. The suggestion that there's a way for patients to successfully navigate the system inevitably leaves us feeling like incompetent messes when we cannot. When we "fail." When I fail. So as the requests for help from patients in crisis across the country have piled up in my inbox over the last few years, I have realized that I have no answers. There is so much advice I have given and been given that has ultimately proven to be of questionable use. I genuinely wonder what Elliot will tell them.
Patients don't want sympathy, we want solidarity. We don't want "reasonable" solutions that disregard the destruction of social services over decades. Patient rights cannot be ideologically neutral. A just system costs money. The question of where that money comes from is central. If it's actually just, then it will come from robust public services where inclusivity and accessibility are prioritized. Anything else is a cover for encroaching privatization where we fund health care out of sick people's pockets, disproportionately costing more the sicker and poorer we are.
Julie Devaney is a health, patient and disability activist based in Toronto. Her rabble column, "Health Breakdown," is an accessible, jargon-free take on the politics behind current health-care stories. You can find her on Twitter: @juliedevaney
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