Friday, 29 June 2018

Field Notes from a Medicare Disaster: Ten

Finally, at the end of the summer of 2017, it was time for the next appointment with the neurologist. He called my guy into his examining room as before. It took my guy a very long time to struggle down that long and twisting hall.

He examined him with deliberate speed.

Look, we have some questions, I said. He seems to be getting worse quickly, not slowly. Parkinson's is supposed to go slow, right?

Might be Mulitiple System Atrophy, he said.

Again, that diagnosis. But he offered no further information.

He had a file in front of him which brought me to my next question.

I understand you had a conversation with our family physician?

No, he said.

My guy and I looked at each other. Our doctor had assured us she had contacted him.

She said she spoke to you, I said. And she said she offered to provide you with research on clinical trials that might be helpful and that you were willing to have her do that. She also asked you to make referrals to Baycrest or Western.

Never talked to her, he said.

Someone had their facts wrong, I thought. Either she was not telling the truth, or he was prevaricating. Never mind, keep going, I told myself.

We understand that your major interest is epilepsy not Parkinson's.

That's correct, he said.

Frankly, after the last appointment we were kind of disturbed that you told us to ask a nutritionist about going off dairy, and that you didn't seem to know there is a problem taking any proteins with Sinemet. We checked with our druggist and with others and it turns out that this has been known for many years. So we're not feeling too confident with you.

His face took on a certain stony quality.

Have you made a referral to Western's movement disorder clinic? I asked. We asked you to do it last summer but they don't return phone calls when we call to find out where we are on the waiting list. It's been months and months. What can we do to speed this up?

Not much, he said.

Well maybe I should go over there and harass them then and see if that works.

Oh I wouldn't do that if I were you, he said with the smallest of smirks. They don't like pushy people. That might boomerang.

But it's been more than a year, I said. Okay, look, wouldn't it make sense to refer him to someone who is interested in Parkinson's? I read about some interesting work going on at Sunnybrook for example, something with ultrasound.

Not for you, he said. (He was right about that. It was aimed at those with unstoppable tremors. My guy has none.)

This was getting us nowhere. But I had noticed, when looking up this neurologist's background, that one of his colleagues just down the hall had written papers on Parkinson's and treated it. What the hell, I thought, ask for a referral to the colleague. Maybe this was about keeping a patient on the rolls of the partnership.

I noticed that one of your colleagues in this office is interested in Parkinson's. Would you make a referral to him?

No, he said.

Would you care to explain why not? I asked, rather sharply.

No, he said.

I was so angry as I drove home that the blood sang in my ears. I got on the phone to our family physician. She assured me that not only had she spoken with the neurologist, her senior colleague had also written to him to ask that he make the referrals.

That enraged me further. I decided I should make a complaint to the College. In order to do that, I needed to see whether he'd made a note of that phone call. I decided to ask his secretary for the entire file. When we finally got it, it was clear that he had had contact with our family doctor, but had scribbled into the file only after our appointment that he would refer to Western.

After I told a physician friend about our less than helpful neurologist, he suggested that to find another I should call the local office of the Parkinson's Society to ask for a list of Toronto-area neurologists specializing in the Disease or the syndrome. The woman who answered the phone was happy to give me that very short list. (It turned out that our less than helpful neurologist was known to her. An "ego problem" was all she would allow herself to say when I asked if she knew why he had failed to refer us to his colleague. She was wrong: it turned out that his colleague was on a research leave.) She suggested that if we were willing to drive to appointments in Mississauga and could get another neurologist to make a referral, a new guy was setting up shop there who was interested in Parkinson's. Or, we could try another man just north of the city. (We tried. Not taking new patients, his secretary said.) Within the boundaries of Toronto, however, we were out of luck, no one was taking new patients and the movement disorder clinics at Baycrest and Western had--still have-- extremely long wait lists. The wait list at Western is particularly bad, she said, but what is worse is that if you do get assigned to a neurologist there, and things do not go well in the relationship, you are not allowed to switch to another neurologist within the clinic.

Why not? I asked.

It's their policy, she said. And they won't explain that policy either, she added.

Decisions are easy to make when you have no choices. We were not going to ask our unhelpful neurologist to make a referral to the doctor in Mississauga, a drive of a minimum of 60 minutes and on a bad day, longer, when he'd refused to make a referral to his colleague down the hall. We would just have to make do with him until we rose to top of the clinics' lists. We took comfort from the fact that we have a family doctor with a first class brain and a strong desire to help. She told us she would write to another neurologist, that friend of hers with a position in another hospital, who she hoped would take on my guy's care.

And in this fashion, more months went by. Physiotherapy, thiamine patches, more physiotherapy, some days good, some days not good at all. Christmas and Chanukah came and went. January was bitterly cold. One night, in the middle of that month, I woke to a loud thump and a call for help. He'd fallen out of bed. He couldn't get up. I tried my best to slide him to the top of the stairs so he could pull himself up using the banisters, a method I'd used in the past when he lost his balance and couldn't get up on his own. No go. He was burning up. He was confused. At my daughters' insistence we'd already gotten him one of those devices to wear in case of a fall. They called 911.

The paramedics appeared at the door ten minutes later. They took his temperature, his blood pressure, measured his heart rate. His heart was racing, his temperature was way up there, and so was his blood pressure. He's always had low normal blood pressure.

What do you want to do, Miss, one of them said.

What do you suggest? I asked.

I think he should go in, he said.

And so they bundled him up onto one of those chairs that bump down stairs, and took him out into the bitter cold.

Down to St. Mike's.


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