hoskins

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There are many tangled threads and competing demands in the life of a patient activist. Within your body, your ethics, your politics. It’s a murky cauldron at the best of times.  

Today, you don’t feel well. You have been in pain for a few months now. Navigating treatment has been intensely taxing and the stress of dealing with the health-care system is actually making it harder to deal with your symptoms. Some of this, you are sure, is related to the rumblings you’ve heard in the halls and boardrooms of the hospital where many of your doctors are located. It was less than two months ago when a staff member leaned toward you and quietly intoned, “It’s the Wynne government. There is no money coming in. We’re under-staffed and no one feels resourced well enough to do their job properly.” You’ve been in many hospitals both as a patient and an educator in the last decade and heard versions of this refrain from all levels of staff, all across the country.

As you have many, many times in the past, you would like to be at Queen’s Park with the thousands of people across the province who will be protesting these cuts this Monday, February 1 at noon.

But you have an MRI booked for 12:45 a.m. the same morning, 11 hours earlier (you’ve heard from friends about their middle-of-the-night medical imaging appointments but this is your first time). The new intense pain that has you laid up and reaching for pills at 4 a.m. doesn’t inspire your specialist’s new admin assistant to give you an office appointment until three months later. She sounds so angry on the phone that you know things can’t be going well over there. But things really are not going well for you either. Everybody is no doubt working more hours than they’re being paid. But on too many days you barely function at all. Sometimes you wonder if it’s the weather. If it will pass. But as the weeks go by, the pain remains.

An ombudsperson for patients

And then Ontario Health Minister Eric Hoskins makes an announcement. Ontario has appointed its first Patient Ombudsman, former Tory Health Critic Christine Elliot. Her job, starting this summer, will be to hear patient complaints and make recommendations to health-care facilities and the ministry to improve care.

You wonder what you would tell Elliot, given the chance. For you, it’s complicated. It’s not like you have a linear argument with definitive proof that if you had an appointment or test or treatment or surgery at a different time or if someone had been more responsive to your phone message you won’t end up crying on a gurney in a hospital hallway again. Chronic illness is exhaustingly ambiguous that way. And maybe your situation isn’t so bad, anyway. (Everybody has something wrong with them, right?)

You read that Elliot refers to this new position as a “dream job” and you listen to a radio interview where she promises not to “suggest something that will be seen as being completely unaffordable and sort of pie-in-the-sky…” Further, she says, “for me to suggest things that are going to cost amounts of money that the government simply can’t afford isn’t going to do justice to patients and families.”

An ombudsperson is an arms-length, third party who objectively examines complaints against public institutions and officials and makes recommendations. They are not meant to take sides. Why would the patients’ new champion begin this process preoccupied with managing the government’s budget before even hearing complaints from patients? Why would she already limit the potential for justice by preempting certain issues as too expensive to fix?

Colliding worlds

You flash back to another moment of colliding worlds in the spring of 2014. This time it was right on your doorstep. You had just finished a long recovery from your last operation. The doorbell rings and you find your wannabe Liberal MPP Rob Newman standing there. He looks intense and his tone is bordering on aggressive. You tell him you’re not voting for him, expecting that he will leave. But instead he asks you why your MPP just voted against the “most progressive budget Ontario has ever seen.”

You roll your eyes and ask, “Do you actually want to do this?” and he says yes. So you ask, “When was the last time you were in an emergency room?” He cannot answer that question and barely tries. Vaguely blames hospital administrators. But budgets have already been frozen for 10 years, with costs escalating, you tell him. He gets very agitated. You tell him about your father-in-law being discharged too soon from the hospital two months earlier. How, when you phoned the Community Care Access Centre, they gave you the number of a private agency. This is progress? He raises the spectre of Tim Hudak, the Tory leader who pledged that he would cut 100,000 public sector jobs if elected. The idea of voting for the apologist at the door to hold back the monster in the woods is uninspiring to you.

The interaction ends with the two of you yelling at each other until he skulks off (and loses the election).

In sifting through these experiences you realize two things. The first is that the same government that won their majority by promising to be the robust antithesis to the Tory austerity program has now appointed Hudak’s health critic to be your ombudsman.

The second is that with the utter uncertainty of what any given day or night might bring to you bodily or politically, it takes you this far into a piece to notice that you’re writing in second person. Because these days it’s often too frightening to be in the first. Maybe I shouldn’t be writing when I’m in pain. Perhaps I am too angry, too strident, too sarcastic. But if I have to wait for adequate treatment to speak I may never write again.

(And I’m lucky, I know.)

I don’t have to pay for doctors’ appointments or procedures. I carry so many advantages into an emergency room. My whiteness, my confidence, my capacity and willingness to articulate my medical history and details of my symptoms in English. The fact that I’ve never been stigmatized with a mental health diagnosis or a charted history of addiction. I have been securely housed in the same neighbourhood for over a decade with a committed network of family and friends. I have an excellent GP who gives me prompt appointments and renews prescriptions that give me a few hours a day to be mobile and sometimes even approaching the vicinity of “OK.”

If we were determining who might be in need of more health-care advocacy province-wide, I would put myself very low on the list.

In his announcement of her appointment, Minister Hoskins described Elliot’s “advocacy for vulnerable people” and her “commitment to the betterment of this province.” In the second part of this column on Monday I will outline where Elliot will begin if she intends to demonstrate these qualities, and what the provincial government would be doing if they truly intended to create better conditions for all patients.

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

Photo of Eric Hoskins via Premier of Ontario Photography/flickr

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