Patient – centred care?

I’m about to not-turn-up for a hospital appointment, and I’m probably not going to let them know. I don’t make a practice of this – I always give notice if I can’t make an appointment but this is different. 
I’ve been waiting for a cardiac stress test and as a full time wheelchair user I’m not going to be getting on a treadmill but rather am meant to have a nuclear stress test (sounds scary, eh?). Last Friday morning someone rang me (number withheld) to ask if I could attend a cancelled appointment on Saturday lunchtime – great! I asked her to explain the procedure and told her that as a disabled woman who uses a wheelchair and has a seriously curved spine there were certain considerations so that I could be as comfortable as possible for the test. My caller decided this was a problem and said she’d transfer me to ‘The Technician’, who asked more questions about my ability to transfer (i.e., could I?) and to lie still without moving (I’m paralysed, I said!). The Technician said she needed to speak to ‘The Consultant’ and could she call me back?
Ten minutes later The Technician rang me back and said that The Consultant felt that, because of my condition, the stress test was not appropriate and they should refer me back to the referring cardio consultant. I explained my disappointment, that I felt they had made a judgement based on a supposition, and had asked me if I could tolerate the scan when I had no prior knowledge of the procedure or the environment. The first Caller had mentioned a possibility of a prior visit, to check these things out, and I reminded The Technician of this. After humming and hawing she agreed and we made an appointment for us to ‘weigh each other up’. But I’ve decided I’m not going.
My reasons are both simple and complicated: primarily, it’s clear to me that they don’t want to test me. I’m prepared to do this, but I don’t particularly want to be injected with radioactive material and have to lie for 30 minutes on an uncomfortable and potentially painful table, with 110% chance of spasms in my back when I try to sit up. Especially I don’t want to endure such a procedure attended by staff who’d rather I wasn’t there. I feel my access needs have not only been ignored but they’ve been thrown actively back in my face.
Also, I’m annoyed at the nature of this attempted ‘dismissal’ with no attempt to outline to me what other options there are and what it might mean for me, the person whose heart is under examination. And, ironically, whenever I run through in my head how the visit might go (you’ve maybe guessed?) I get a tight, anxious feeling in my chest.
Finally, the original Call was ‘number withheld’. Why the secrecy? I may be being petty but that’s why I’m not ringing them. It’s the only aspect of this that makes me feel better.


About lorrainegradwell

Active in the disabled peoples' movement since the early 80's, stepping back a bit now but still speaking up and still looking for independence and an end to discrimination.
This entry was posted in Cardio, disability, wheelchair. Bookmark the permalink.

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