Usually around this time of summer I like to post about our garden, our roses, lillies, hydrangeas and all the beautiful things that make me smile and provide moments of joy.

As I have done many times before on this blog and you can see examples here:

I had booked off July and August to work in peace on chapters for two books to which others kindly invited me to contribute and to facilitate various interventions for clients at the appellate level as well as to work on my standard appellate case work. Summer is often easy on the day to day hearing grind, and I felt very lucky to be able to take this time off – to block it off to tend also to other tasks I’d avoided for too long. Health related and admin stuff I wasn’t necessarily looking forward to, but at least I now had the time to do it.

And then I got sick.

Early this July a pesky infection I had battled in April returned. Probably not actually returned so much as it had never quite fully resolved, as we previously believed. I won’t bore you with the details but the upshot is I ended up back at Mount Sinai for another operation and was discharged the day after surgery. Which is when the fun really began and continues now for the foreseeable future.

If I told you that “home care” in Ontario is now delivered by you attending at the hospital every day, for weeks and months, when they have a slot available, and that they do not have the basic necessary supplies to adequately care for your post-surgical wound there, let alone sufficient such supplies to provide you with to use at home, would you find that shocking? I bet you would. I do.

Upon discharge, I was told that “home care” had been arranged for me.

Then Ontario Health AtHome called me. Turns out even their name is a lie.

This is their site: https://ontariohealthathome.ca/

They told me that in order to receive actual care at home I’d have to be actively dying or bed-bound.

Otherwise it’s daily attendance at the Hospital.

In my case, if Saint Elizabeth accepted me as a patient, I’d be going to Women’s College Hospital.

Every day. Whenever they had an available slot. At first it was to be three weeks, now maybe three months.

My post-surgical wound is described as the deepest some of the staff have seen. It is huge and is precariously placed, making it very vulnerable to infection.

The nurses who see me daily are doing their level best. Some are kinder than others, but they do try.

I didn’t realize though until a friend whose relative is a wound care specialist that I should have been assessed by a certified such specialist early on to determine plan of care. That never happened.

I complained and the response was “Oh, you wanna see a wound care specialist? Sure, the first available appointment is two weeks away.”

I have left several messages for upper management, who have simply chosen not to respond.

At the moment, we are buying our own supplies, having spent probably thousands by now on basics like gauze to pack the wound, which has an anti-microbial coating. They had run out of that at the wound clinic. You can see why that’s a problem, right? It all increases risk of infection.

Some of the nurses are reluctant to give us any of the precious supplies they do have. Sad.

I found out there is an investigation ongoing by the Patient Omdubsman into the supply shortage.

They were reimbursing people like me who had to source their own supplies, but they cut that off July 15. The message posted indicated that the supply issues had been fully resolved. That is simply untrue.

I am in agony with pain still 11 days post-op. I am “managing” that pain with plain Tylenol now.

I have no real access to information about the recovery I am facing. It’s a day to day guess around.

I had no real intake through the agency providing service, nobody is overseeing this care on any regular basis and I am fighting every day for crumbs of supplies to get me through the day as we have to deal with changing the dressing 5-6 times a day at home.

This is me – middle-class, fluent in English, a health law lawyer. I’m a professional advocate for crying out loud. This is within my wheelhouse and I am certainly raising my voice. But I am also exhausted.

Turns out that healing from a massive surgical wound requires your body to be well-nourished, well-rested and incredible physical as well as emotional strength. It’s difficult to muster excess energy to scream from the rooftops.

Still, I am otherwise healthy, intelligent and connected in the health and legal worlds. And I have $$.

I have a law firm I have nurtured and grown over decades, and associates, articling students and support staff who are all truly committed to our clients and to me. They are able to work fully remotely and able to attend in person where required. They have been mentored and supported so they can function independently, even if they do need to rely on me in more challenging moments. I can run the firm, despite this temporary disability. I can continue to support the firm and my family throughout adversity now. Not that any of this is easy, it takes a lot out of me and away from my recovery, but I can manage.

Most importantly I have a loving and supportive family, and a spouse who’s not above making himself into a full time caregiver and rapidly becoming a wound care specialist by internet learning……this is sort of what we’ve come to. It is a scary and challenging road and I’m not known for being weak or a coward.

Indeed, I am no stranger to chronic illness or much longer, more complex and riskier operations. I spent my teen years battling an autoimmune disease and a year in hospital being operated on. Sure, I was 20 then and fortunate to stay in solidly good health for almost four decades after that. However, the point is I have been through a lot, I’m reasonably knowledgeable about my own condition and medical issues generally. But even I find all this more than a little daunting. And that’s with all that I have in my corner.

Anyone with an ounce less privilege would be dead by now.

How are we not more outraged?

We should be and I am.

My hope is that with the limited platforms that I do have, my story will shine a light on the shameful state of our supposed health care system.

Post-script: I raised every imaginable kind of hell today. I received additional supplies that we desperate needed. The manager of the service spoke with me in person, catching me as I was leaving my appointment. After trying to express my concerns, I was directed to my “case-manager”. Hilarious. Apparently, there is supposed to be SOMEONE in charge of my care now, overseeing it through Ontario Health atHome. Darned if I know who that is or how to reach them. Literally nobody has even mentioned such a position to me and we are on Day 11 post-op. I was to receive an email with that information at 12:15 pm. It’s 3 pm and nothing has come. I’ll keep you all posted! As the nightmare continues.

Further Info – since this post is getting some real traction, for those interested in my earlier experience at Mount Sinai, here is the blog entry from the April admission

UPDATE Day 13 July 23 2025

These updates are often available on my LinkedIn Page

As this post on my blog regarding the sorry state of outpatient health care in this province gains traction, I will update the blog entry as things progress.

I can indicate that on a personal level, public calling out of cracks in the system has resulted in significant improvement for me in terms of my care. I have the supplies we need at home in sufficient quantity to address immediate needs for example. I am getting plenty of attention, albeit after several phone calls and repeated follow-ups demanding some acknowledgement of my concerns.

Does that address systemic issues? Not even one bit. So I will continue to speak up for those more vulnerable.

Fun tidbit – today I learned that the Policy at Ontario Health atHome is, get this, “Clinic first”. This was said out loud without any apparent trace of irony. It was again explained to me that if you are mobile, you cannot get care at home. Must be bed-bound. This is now twice I’ve heard this. I asked if it would not be more accurate then to rename the agency “Ontario Health atClinics” and the “problem” was then acknowledged as something they are “aware of.”

Next up – it turns out I have a case coordinator. They made themselves known to me nearly two weeks to the date after my surgery. Initially my recovery was estimated by the discharging medical staff as three weeks. So we are now at 2/3rds of the anticipated period of care I was to receive through “atHome”.

When I asked what the care co-ordinators do, I was told they go by discharge notes regarding what services and supplies I would need. Which is ridiculous actually as the surgeons don’t know how the wound will fare or what I’ll need. That should be assessed on intake. If there was one.

They report not hearing about any problems with my care. I explained it’s tough to raise concerns with the case manager if nobody ever tells you that you have one or even supposed to have one. That’s a great way to minimize complaints. Never let anybody know where to go to even ask questions. They’re on the case now but I am no longer the point. As with anything else, if you raise enough hell, someone somewhere will notice. But who else has the resources I have.

My favourite part of this journey is having the law of consenting to treatment or the release of information explained to me by providers who advise they decide what treatment I get and are not obliged to even inform me or that I can’t communicate by email about my own health care, because it’s not safe for me.

Today the answer to refusing to communicate by email with me was that I had not consented to email communications. I had REQUESTED to be contacted by email. That request is a consent.

It’s exhausting actually to keep identifying oneself as the nation’s leading expert on this stuff. When I say it, I get “I didn’t know” – and I say “Now you do.”

Fun times for them I am sure as much it is for me.

The good news is I am getting spectacular nursing care.

I am healing well, stronger every day.

PPS – When I finally found the Wound Care section on Ontario Health atHome’s webpage under Community Care, it suggests they follow all the gold standard care protocols you can imagine – they say:

Wound Care

Ontario Health atHome offers evidence-based, best practice wound care in alignment with Ontario Health (formerly Health Quality Ontario) wound care standards and Wounds Canada. Specialized wound care teams including Nurse Champions, Nurses Specialized in Wound, Ostomy and Continence, and dedicated wound care coordinators are available to support patients suffering from acute, chronic and complex wounds.   

They then provide this link

Ontario Health (Health Quality Ontario) wound care standards (opens in a new tab)

Which takes us here!

https://www.hqontario.ca/404-Page-Not-Found

FITTING!