betrayal trauma in medicine

[buddy99]

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.

healthasahumanright.wordpre...

[Jazzw]

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.

[Sparklingsunshine in reply to Jazzw]

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?

[Jazzw in reply to Sparklingsunshine]

In my experience, the only lesson they learn is how to cover up the lapses in care more thoroughly.

[Sparklingsunshine in reply to Jazzw]

No disagreement here Jazz 😠

[Jazzw in reply to Sparklingsunshine]

😢

[buddy99 in reply to Jazzw]

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!

[arTistapple]

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.

I have now sent this information to the Patient Safety Care Commissioner. I do hope others might also do this.

Thanks again buddy99.

[nightingale-56 in reply to arTistapple]

I now realise my Son and I have Betrayal Trauma from 2010, but at the moment, after reading this (thank you  buddy99 ), I am stunned and do not know who to write to, having exhausted my complaint to Health Ombudsman and other high-ups in the health Service.  arTistapple , do you have a link to the Patient Safety Commissioner questionnaire please? At the moment my mind is even more numb from being even more of a Carer than I usually am.

[buddy99 in reply to nightingale-56]

I'm so sorry, nightingale-56. You sound so shocked and hurt and desperate. For myself I can say that I can take a lot without flinching but when it comes to my children that does not apply at all. It must affect you so, so much to see yourself, but especially your son, being betrayed by those we put our trust in and, in reality, don't have much choice than to trust because we depend on them. I hope that you can find some relief and closure in the future, hopefully the near future. All the best.

[nightingale-56 in reply to buddy99]

Thank you so much buddy99 , for your kind words and for posting this information. I really don't know which way to turn at present as have gone as far as I can with my complaints, all of whom are denying it is anything to do with medication commissioned and supplied by NHS. The really upsetting and worrying problem is the fact that I will eventually be departing this World, leaving my Son to the vagaries of NHS and Carers, who mainly do not care! At present we have absolutely perfect Carers for him and I would trust his life with them. Needless to say they are not British, and you never know when Caring will change in this country.

I would be absolutely lost without this forum. Thank you all.

[helvella Administrator in reply to nightingale-56]

RedApple posted this the other day:

PSC (for England) launches public consultation on draft principles

healthunlocked.com/thyroidu...

The consultation isn't wonderful but we have to use any opportunities that present to highlight our issues.

[nightingale-56 in reply to helvella]

Thanks for posting this link helvella . I now remember I did see this post and even saved it, but didn't scroll down far enough. Laptop playing up at present, or it could just be me!

[arTistapple in reply to nightingale-56]

nightingale you may recall I am a bit of a Luddite on the computer. I think it was RedApple post.

However

Dr. Henrietta Hughes OBE says her “role is to promote patient safety in relation to medicines and medical devices and to promote patients’ voices. This site is for everyone interested in promoting patient safety and making sure patients’ voices are heard”.

Patient safety commissioner.org.uk

I am sure just getting on the website will take you to the questionnaire.

I am pretty sure also that many of us who visit this ThyroidUK Forum feel similar.

[RedApple Administrator in reply to arTistapple]

helvella has provided the link in his comment just above yours arTistapple 😊

[arTistapple in reply to RedApple]

Thanks I must have been in the process of writing to nightingale-56 at the same time.

And thanks for the questionnaire. Another cog in the wheel but you just never know which contact might be the ‘charm’.

[nightingale-56 in reply to RedApple]

Thanks for this info RedApple . Will check it out.

[nightingale-56 in reply to arTistapple]

Welcome to Luddites are Us arTistapple . I have just seen RedApple 's post under this one, so will check it out.

[CheekyCrow]

Thank you for sharing this, buddy99. Had not heard of betrayal trauma. I'm sure it will ring true, whether to a greater or lesser degree, for so many people who are trying/have tried to get the help they need with their health. Lots to mull over and so interesting to have a term to attach to the feelings many of us will have after our experiences. X

[Escapologygirl]

Sadly it's what I long thought as to see it in written form makes it even more sad I'm at the point where I have no trust in any consultant, I once had one who gaslighted me so badly that I was broke after 3 visits and treatment and I stopped going to her and asked to be removed from her patient list, she still kept sending appointments and now I see her on the lecture and radio and TV doing interviews on her new book and her "expertise " on endocrinology it makes my skin crawl

[buddy99 in reply to Escapologygirl]

☹️

[MaggieSylvie]

Yes. An interesting read, though mostly very abstract. I wonder if betrayal trauma includes keeping a patient in hospital indefinitely, thus preventing them from getting any exercise - providing continence pads instead of encouraging them to walk to the bathroom and encouraging a "can't do" attitude, particularly in view of further loss of sight while being in the hospital. They have "tried" to discharge my partner a few times but thought it wise to send him to a "half way house" type of convalescent hospital, where the staff were too few and under qualified, resulting in a further and immediate readmittance to the main hospital.

He is due to go to a care home after the weekend, which we all consider to be a step in the right direction after more than three months spent mostly in bed. I just hope that the "care" he is about to receive is more than about treating the "old man" he has become while "inside", and about making sure he is awake when the meals arrive, and that blood sugars are measured more frequently than the "book" tells them to.

I hope he gets dressed and walks around. I hope he gets some mental stimulation other than the complaints of other patients - radio/TV, conversation. I hope they make an effort to find his dentures that got left behind, and his talking watch, and that the surroundings are such that he has an idea of whether it is day time or the middle of the night. He has become so weak, so accepting, so trusting, so passive, none of which are his natural character. I want to know what led him from being unwelcoming when I visited him to being grateful and unargumentative. I'm not complaining, but what tripped the switch? Will it last? I hope so.

[buddy99 in reply to MaggieSylvie]

That sounds horrific! You are going through your own personal hell and it hurts my heart. All I can do is wish for things to get better for you and your husband and for you to continue to be strong. I can not imagine what it must be like for you. All my most heartfelt best wishes for a better future.

[MaggieSylvie in reply to buddy99]

It means so much t be "heard". Thank you, Buddy, for your kind words.

[Sparklingsunshine in reply to MaggieSylvie]

Sadly I went through many of the same issues with my late mum. As soon as she was admitted they catheterised her and just left it in, even when she was eventually discharged. I knew this was wrong and done for their convenience, not mum's health.

I was her carer and kept trying to get the GP, district nurses to give her a TWOC , trial without catheter, but she fell through the cracks in the system. Leaving a catheter in without medical need is very bad practice as it leads to repeat UTI's, which it did. My mum was also sight impaired and very deaf and she just retreated into herself.

Honestly when I think about my mum's last few years I could cry, you wouldnt be allowed to treat an animal the way we treat our elderly.

[MaggieSylvie in reply to Sparklingsunshine]

Oh yes! the dreaded catheter! I notice they are not using them very much in my partner's ward, thank goodness. I had one following a road accident and ended up with a UTI. I have been wary of them ever since. In my partner's case, he is prone to UTIs anyway, so I'm always wary when they give him a catheter in case it is left - for their convenience - too long.

I am so sorry about your mum. They don't consider how these things will affect your memories of the patient.