I wanted to wait about a month before posting this. I wanted to give my team a chance to digest it, discuss it at my appointment.
They did respond.
I was relieved that it was positive & productive & they took a moment to really have a discussion about what I outlined. Not all centers are this receptive to feedback, but I’m glad mine is.
They responded with a plan (which is what we were all struggling with trying to get together anyway). Knowing my concerns & where I sensed breakdowns & troubles in writing proved helpful to them. This was the spirit of why I wrote the letter.
I always feel it better to be direct in healthcare when things aren’t going well, rather than let things fester & build.
In transplant world, I think it’s more critical to take this approach since it’s such an unpredictable path to begin with.
It was a hard thing but necessary for me to write these concerns out. This is the redacted version.
I changed some details & de-identified some things for privacy purposes.
But I did feel the need to post this in case others found themselves in a similar situation & had problems with the decision-making & care they received at any point & felt like they wanted to say something about it.
It can be a very tough thing. I sent this to my social worker & asked her to share it with whomever might need to be made aware.
It can be hard to complain, especially when you’re feeling so lousy. But some times, it’s very necessary. Especially when one feels it erodes trust or impacts care adversely.
Technically, the doctor in question did not make any errors or do anything that I felt worth taking to hospital administration or initiating disciplinary charges.
I do know though that my doctor & the center have been very receptive & open to feedback when I have brought issues to their attention, so that’s why I felt comfortable doing this.
I had other people come to me in private from time-to-time recounting times they received similar treatment but weren’t quite sure how to handle it or said nothing.
I hope this helps them find their own words to speak out if they feel compelled to do so.
Nikki, another well written, poignant example of appropriate self-advocacy. I’m certain you would have rather not experienced the disruptive care necessitating the letter in the first place. However, your summary left no doubt regarding the serious of your complaint(s) when you said, ” I was unduly stressed during a time I was already gravely ill & vulnerable.”
I trust the episode is firmly situated in your past, and your care team in now on notice of your powerful, yet abundantly clear expectations of appropriate care.
Knockin’ Wood 4U!
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