Content-type: text/html ~ Stephen's Web ~ One Bad Experience

Stephen Downes

Knowledge, Learning, Community

Sept 23, 2011

It's funny how one bad experience can make you feel disempowered and helpless and frustrated.

Andrea and I have been struggling with one doctor for several years now (no, not our family doctor, a specialist). Obtaining appointments has become an exercise in continual frustration. Today was just the latest in a long string of incidents.

We understand that the doctor is busy, and that there's a waiting list. We understand that we have to make a special effort to see the specialist. But there are unnecessary difficulties and these have made life miserable for us over the last four years.

At most places - like the dentist, the optometrist, the family doctor, the blood clinic, my CPAP specialist, the Honda dealership, and pretty much everyone else except medical specialists here in NB - you make an appointment, and then when the day arrives, you go to your appointment.

Often, the service will give you a call a day or two ahead of the appointment, as a courtesy. One of our dentists even has an automated calling service which makes the call at night, when the office is empty. We confirm the appointment and, most of the time, make it without a problem.

Not so the specialist. Instead, his secretary keeps all the information to herself. Instead of making appointments ahead of time, she calls people to tell them they have an appointment at such and such a time. Her calls can give you as much as a week of warning, or as little as a day or two.

If you are referred to this doctor, you don't set an appointment. You sit and wait. When the time comes, you receive a phone call. You cancel whatever your plans were, and show up to the appointment. You are not supposed to call them and ask - you get increasingly terse responses telling you to be patient.

When I asked the secretary about this, she said "it's more efficient." She tried setting up appointments ahead of time, she said, but people kept missing them. So she just calls them at the last minute. What about reminder calls? I asked. She doesn't have time for that, she said.

Even granted that it's more efficient (which I do not believe) it is still a very difficult system to work with, very hard on people waiting for care, and very unstable.

We waited 18 months to get the first call. 18 months after the referral, and the call never came. I went in and was told there was never a referral. Fortunately, our family doctor keeps records, and the referral was down on paper. We had simply been missed, and were never going to get a call, and just didn't know it.

Once on the list (for we were put on the list right away once we brought it to their attention) we faced a second waiting period for an actual appointment. Time passed. We were told, again, that it could be 18 months. So we waited another year an a half. When I went in we were told that we had been given some papers at the previous meeting to deliver to the hospital, and since we hadn't done so, the paperwork never came back and so no appointment was made.

No problem. We would get a call in December for an appointment for surgery in early January. Finally. Most of December came and went, and I went into the office a week before Christmas to find it in a state of disrepair. All the staff had taken the month of December off and the office was being renovated. I left the office growling about lawyers and politicians and how heads were going to roll.

When I went back in the first week of January, I was told that the hospital time had not been available and so the appointment could not be made. So they just never called. In fact, the hospital time would not be available, somehow, until March.

Now we're in follow-up mode, one ankle down and one to go. But I found out today that we were back into the "we'll never get a call" cycle. Apparently (so I'm told) we were called in August for an appointment in August, and that it had been missed, so we were off the 'to be called' list. If we hadn't inquired, we would never have heard about the scheduled follow-up.

Now I am supposed to have been the one to have taken this call. Readers will recall we were camping in Prince Edward Island for the month of August. But the secretary stared me straight in the eyes and said I had taken her call. So - I suppose it's possible. We did come home a few times to feed the cats. But I have no recollection of such a phone call. And it's not like there's a piece of paper that says "here's your appointment" that can prove the case one way or another.

Anyhow, now we're back into the 'we will call you' cycle again, where we are told, "If the doctor wants to see you, we'll get a call next Monday." If not - we're off the list completely, and we'll never hear anything about the second ankle.

I'm quite sure we're not the only people in this situation. Maybe it's normal that the people of New Brunswick have the time to sit around and wait for a call from their specialists, but we do not. We do things - we travel, we go camping, we make commitments. So do other people, which means when they get into a situation where they need a specialist, they have to go through this phone-call roulette.

To be clear: it's not just this doctor and this secretary. I have had to see two other specialists here in the province, about other things, and they both set up appointments the same way - don't call us, we'll call you (some time).

It's very hard not to think that there's something funny going on here. It's very hard to think that what in most jurisdictions would normally be a waiting list, where people make appointments and wait their turn, here there's a different sort of pecking order at work, where decisions are made behind the scenes about which patients get seen first and which must wait.

And when you're an immigrant to New Brunswick, with no relatives and no connections in the health care sector, and when you always find yourself waiting the maximum period, or shuffled off the list altogether, you really begin to wonder.

At the very least, we seem to be facing some sort of systemic incompetence. I'm even willing to admit that it might me our incompetence - it's not like I have a lot of experience dealing with health care systems and doctors. But the problem is, when there's nothing you can do but sit and wait for a phone call that might never come, there's nothing you can do to fix things, nothing you can do to make plans, nothing you can do to ensure that you are seen in a timely manner.

There's no excuse for not making appointments. There's no excuse for not making some commitment about the time it will take to see a specialist. There's no excuse for a process that makes it impossible to make any plans or do anything that takes you away from your home for more than a day or two. People who are in the medical system ought to have rights: the right to transparency about the process, and the right to fair treatment.

Right now, neither is the case in New Brunswick. I imagine most people here are too cowed and scared by the specialists and their secretaries that they don't do anything. But we're to the point where there's nothing to lose, where even if we complain we can't get worse service, because that's where we're at now.

So I'm muttering about lawyers and politicians and waiting for Monday, when I expect that the promised phone call will not come at all, again.

Stephen Downes Stephen Downes, Casselman, Canada

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