This article (it's a long one) really spoke to me and reflected quite a few of my own experiences, which I think are shared by many here. While it is not specific to thyroid health, it does mention the struggle of people with chronic issues. It also takes a look at a hierarchical and patriarchal system that inflicts trauma on patients that depend on it. Unfortunately it offers little in terms of solutions....maybe there are none at this point.
betrayal trauma in medicine: This article (it's a... - Thyroid UK
betrayal trauma in medicine
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As it says it the article, I had no idea it had a name. Betrayal trauma. It’s a perfect description.
This bit hit hard:
Patients know not to speak up. Those who do often face consequences that indelibly damage the care they receive. Even where individual providers or institutions say they want feedback, when that feedback is negative, the default response is defensive. Instead of reading a patient’s story with care and compassion, feedback is met with skepticism and judgment, thus furthering the harm already done.
So very wrong. But from my lived experience, far from unusual.
I've often had a text message after a hospital appointment with a survey attached. Unless my experience was outstanding I dont bother giving feedback.
Partly because its just a tick box exercise and a waste of my time and secondly is the feedback really anonymous or will it be recorded somewhere in the ether that you gave a less than glowing review. Which could affect future care.
I mean do they actually act on the results of surveys, good and bad? How many times do we see in the news when some health scandal or tragedy has occurred " lessons have been learnt". But have they, really?
Yes, this struck me the most as well, because it captures the utter helplessness and powerlessness of patients. I was recently told that we have more power than we think. I feel that is not the case in dealing with the medical system. The same goes for "knowledge is power". From my experience, that just gets you into all sorts of trouble (especially if you try to share it with a doctor). But maybe we only have to continue advocating for ourselves, band together, and maybe at some point in the future things will change. Let's continue to be hopeful!
A few days ago some intelligent person put up a Patient Safety Commissioner questionnaire. I would say this pretty much answers the problem at the very heart of their ‘statement’ which I attempted to highlight on the questionnaire. I brought it up time after time throughout. The patient was not at the heart of their guidance. The patient should have been top of the list, not second. In my opinion a gross oversight.
I am now going to attempt to send a copy of this to said commission. This is hugely important. Perhaps others should send a copy too.
Thanks buddy99.