Monday, 9 January 2017

Rheumatoid Arthritis - working the systems...

Remember my recent post, when my chemists were absolute heroes? Read it HERE. Well, following up on that, they called me last week to let me know that the drug had been ordered, and delivered, and they were holding it until I collected it.  

My next infusion is due next Tuesday. In Sydney, I had my infusions at a big public hospital, and once referred there by my rheumatologist, the making of appointments happened within the infusion unit. Costs were taken care of by Medicare, so all I had to do was periodically flash my Medicare card, and surrender my appointment card for updating.

HERE, I'm working via the private system. I go to a private hospital for the infusion and am admitted as a day procedure patient - for which my private health insurance picks up the tab. The hospital and staff have been great, as has my insurance company. The only time there's been a glitch was the last infusion with the stuff up from the drug company.

Until now. I had a sudden niggle the other day that because the doctor had booked me in to the hospital and set up the appointments, and it was private, and that this month is the first dose of the new prescription (they last six months), unless there was a standing order for the doctor, there might not be a booking for me on Tuesday... 

I called the doctor's rooms last week, and got no one. I knew he was going to be overseas over the break, so assumed that there was no one in the rooms. Made a note, and tried again today and got the receptionist. She went through my file but couldn't find anything. So I called the hospital, which involved a lot of being put on hold, and then eventually waiting for a call back. That's just happened.

There's no standing order. I do need another set of appointments to be set up. That has to be authorised by the doctor. The infusion is due on Tuesday, and he'll be in his rooms - at that hospital, as it happens - but not until the afternoon on Tuesday. So that's the first time he'll get the note asking for the new run of appointments, which means the likelihood is I'll have to wait until Wednesday for the infusion. 


Ostensibly, it'll be a day late. But due to last month's debacle, that one was a day late so Wednesday will be the exact four week mark. So it's no great drama. I'm just kicking myself that I didn't think of it last month, before the doctor went away, when a simple phone call would have been enough to rectify the situation. And I'm also deeply thankful for when the infusion falls, and that it's going to be near enough. BUT it's been a stressful couple of days of not knowing. And stress isn't a good thing in combination with an autoimmune disease.

Systems. From place to place they can be very different. I need to be on top of figuring that out, in amongst all the other things I do to manage this disease. And people wonder what I do all day?!


  1. I hate things like scheduling errors. I had a similar infusion a few months ago and for some reason out of the blue I am having leg pain during the infusion. I cannot seem to get my doctor to understand. Well the 1st of these infusions went especially bad. So I called and asked if we can figure something out. Turned out the doctor was on vacation and the office staff cannot write orders to the infusion center.

    As I sat in the infusion chair for the second of those infusions I was so upset. Darn, that will not happen again.

    1. Sorry to hear that, Rick! It really sucks when you can't get hold of a doctor - and the whole Christmas/New Year period is such a mess for regular services. I hope your leg pain settles - quite apart from the discomfort, it's a worry when something out of the ordinary happens.

      I must ask, next time I see my guy, if he is a sole practitioner - because my Sydney rheumy was part of a big practice, so if he was away and there was something important needing attention, there were options. So I need a back up plan in place. Something else for the appointment list!