Educating the medical profession - suggestions please?

[Swift]

Hey,
So, to cut a long story short, I broke my hand 3 weeks ago in a dissociative episode. I ended up at the local ER, where they did a closed reduction of the fractures (multiple).'
I needed surgery later, but that's irrelevant.
I sent an email of thanks to the health dept because the hospital doesn't have its own service.
I complimented and named the nursing staff, the admin, and the first doctor. (That was my main aim, there's too little positive feedback in the world. I thought the first doc was amazing, if totally clueless.) Here, the first 2 years after med school are spent being a registrar at a hospital.)
I wrote after that there was a lack of education around PTSD.
Long story short, they want me to call them to discuss how to make such things easier for patients with PTSD.
I've got my own thoughts, of course, but if anyone has anything to add, I'd be more than willing to take it to the people who want me to talk about making stuff easier for patients with PTSD.
Any and all suggestions welcome.
For reference, this is a public hospital in a country where healthcare is free. They seem genuinely interested in knowing how to help.
I was super, super polite in the initial email. I can't guarantee anything, but I'm more than willing to try taking other concerns as well as my own to them.

 

[Tornadic Thoughts]

For me, personally, I would suggest that the staff be much more mindful of using scented products with artificial fragrances as much as possible. Be it hygiene products, laundry products, colognes/perfumes, and cleaning products. I know it's impossible to avoid in some areas, especially in the medical arena, but all those things are enough to make me and others like me even more ill than when we arrived there for help. I've had to leave many significant appointments because my body simply can't tolerate the chemical shit storm. Have them look further into how it totally disrupts our bodies endocrine system when they/we choose to marinate in it and have to breathe it.

I'd also suggest they set up at least one of the exam rooms with softer lighting, soothing sounds like a fan or white noise machine, maybe even one of those sound machines with wave sounds, forest sounds, etc., have soft blankets available for us more cold-natured folks, have noise cancelling headphones available for the long waits we often endure, and offer refreshments post-procedures that will contribute to our life more than our death. (for example, after my hubby had an endoscopy, they brought out a soda style ginger ale that had absolutely no actual ginger in it and a highly processed snack cake, both full of high fructose corn syrup, artificial colors, and flavors....that sort of stuff can bring in plenty of repeat business, unfortunately....there again, yet another chemical shit storm to try to navigate being made to look normal and expected by those supposedly helping us to get healthy, when it's just the opposite)

Ask them to be more mindful of how they respond to individuals via their tone of voice, eye contact, body language, personal space, and how they deliver vital info. I always ask for things in writing because my brain does not retain when I feel like I'm under pressure of any kind. I was often left feeling like I was on a conveyor belt being passed off rather than being actually heard and innerstood while feeling like my overall well-being truly mattered to someone.

Ask them to please be mindful of sharing play-by-play narrative when touching the body during the entire process, most especially if I can't see what's happening as it's happening. Also, please don't wash your hands with really cold water before touching me. Cold hurts my body and makes me tense up.

Hope those are helpful and yay for them being open to listening to suggestions! Good job!

 

[Still Standing]

be more mindful of how they respond to individuals via their tone of voice, eye contact, body language, personal space, and how they deliver vital info.

please be mindful of sharing play-by-play narrative when touching the body

These would be my two most important issues, although in certain settings, this may not be possible, especially in an E.R.

I would also suggest that the area that an IV is going to be placed be numbed, first, like they do with a child. Needles are a HUGE trigger for me, if I feel them.

I would like to see an advocate available who would stay with me and speak for me to help prevent a panic attack. Many times I have to go it alone, during medical procedures, in the surgical holding rooms and in recovery.

Overly excited and too many people in the holding room with me sets me off, big time! I cannot take the over stimulation. If possible, one person at a time, or at the very least, only one person talking to me at a time.

---Have to say, this is a marvelous opportunity for you! What a great thing that you get to have a voice for PTSDer's in your hospital!!!

BTW, I hope your poor hand recovers well and with as little stress, as possible for you.

 

[ladee]

Amazing response to your Thank You letter to them!!! I never see this happening in the States...

I would compile a list of reading material for them to educate them selves about PTSD... sharing ways to comfort and keep the anxiety down is good, but they need to know WHY those things would even be a comfort to us. They don't operate on us unless they know WHY. So, having something they can learn and then learn how to treat PTSD patients... would help them. Then there is the issue of many not letting medical staff know we have PTSD. I tell all my doctors... and then see the deer in the headlight look in their eyes, or ,' SO what' look.

It's so hard for me to imagine having free health care, much less a medical community that shows interest in how to make things less traumatic for us...

So, with that being said, I would start with education.... if they are willing to accommodate PTSD patients, they would be willing to have a deeper understanding of how to come up with their own comfort solutions... with your input...

This could be a major start to new ways to treat people with PTSD... here in the States, I'm willing to bet the majority of ER docs have it them selves... sorry, not much to contribute, but damned proud to hear that door was opened in your country and in your local health care arena...

Hope that hand heals. Please keep us updated... this could be revolutionary.... a small beginning makes for major changes...!!

 

[Sweetleaf]

I honestly wish they wouldn't make as much small talk. My brain is trying hard enough to not freak out, while certain things are going on, and their small talk makes it hard for me to focus on not freaking out, because I pretty much can't even formulate real responses of any kind to them, or understand what they're really saying - while also not getting to focus because their voice is distracting me.

It's not that I wouldn't want them to talk at all, it's that, once they have to start touching me, or whatever other thing starts making me feel stressful or triggered, it's best if I can just focus on keeping myself grounded and together - I imagine there is theoretical talking that would -help- me, but making small talk is TOTALLY not helpful to me at all during that shit.

Small talk is like, the f*cking worst. Maybe that's just me. Do the small talk at the beginning when we first meet, or after you're done f*cking with my body, not when you're moving my body parts around and shit trying to figure out whats wrong with them. (or whatever else)

I totally get that they do the small talk - it's totally fine and normal for them to do small talk like that, and for like, pretty much everyone else it's probably like no problem at all, completely normal, and nobody cares because that's just kinda how most things go anyway I guess? I am fine with the small talk until shit starts going down. Then it becomes this buzzard pecking at my ability to hold my shit together.

I can't focus on holding my shit together and do listening/talking at the same time. I can talk to people while playing f*cking piano or guitar or bass, but I can't do the multitasking of talking to people while trying to hold my shit together.

Some other stuff:
-Only do touching that is -absolutely- necessary. It it doesn't need to happen, don't do it. If you have to do it, alert me and ask first.

-If something has to be wiped off of my body IM A BIG KID I CAN DO IT like wtf ur a trained medical professional, not a f*cking maid or some shit. My first encounter with this was at physical therapy - deep tissue massage. That was also triggering because the lubricant stuff or whatever it was, sorta looked like cum and I totally was NOT expecting the stuff that was about to go on me to look like cum. Like f*ck dude. I was like, gripping the sides of the table hard, she noticed and was like "does this hurt?" and I was like "n-no" and just couldn't bring myself to say anything about it and let her finish. Then she wiped off my thigh and I just like, super duper squeezed the edges of the table and tensed up. Like, wherever possible, after stuff is done being done, and it needs to be cleaned up - I'd prefer to do my own cleaning-off of my own body if at all possible. It's not rock science, just gimme the towel.

Maybe I'll think of other stuff. I haven't done much medical stuff since freeing myself, relatively speaking. There is a lot to do, I am kind of just trying to take it one thing at a time.

 

[Mee]

Allowing the curtain to be closed. Ofte they like to keep them open for ease of checking on patients. Sends me sky high, its not ’safe’ to be exposed like that.

 

[Freida]

Wow!! Just wow!!!! I am trilled they are reaching out to you! Wow.

I agree with most of the stuff that's already been brought up... especially the don't touch me stuff
I'd like to add keep me in the loop. I have a huge issue with locked doors - so when you put me in a room, close the door, and don't come back for an hour? I'll be freaking out
Feel free to offer me Valium. Part of my pstd comes from a bad medical experience (or 190). Help me calm down if you are going to be keeping me for while
Tell me what you are doing before you touch me. Every time
You get one chance at sticking a needle in me -- so if you don't think you can do it get me a specialist. If you have to stab me twice or look for a vein I'm going to lose my shit.

I'll keep thinking

 

[Sweetleaf]

I'd like to add keep me in the loop. I have a huge issue with locked doors - so when you put me in a room, close the door, and don't come back for an hour? I'll be freaking out
Feel free to offer me Valium. Part of my pstd comes from a bad medical experience (or 190). Help me calm down if you are going to be keeping me for while

Dude! All this! Yes!
Also something I thought of because of doors being mentioned - knock before entering the room, because if the door just swings open without warning and a person shaped thingy starts coming through it, it's going to startle the f*cking shit out of me.

 

[Mee]

I think reading others’ replies I would say ’see who we are’. I am great for people learning phlebotomy. I am totally blase about needles and routine stuff. But if I fon’t understand why I am having a proceedure or medication I will not want it ( not common in the UK where people rarely ask questions of drs but nod and accept). I want to understand and research first.

 

[EveHarrington]

I’d stick to the basics.

No offense intended, but people are responding and will continue to respond with personal trigger stuff that’s highly individualized.

If you bog down providers with a million different pieces of advice....guess what happens? ABSOLUTELY NOTHING.

I think it’s best to whittle it down to the absolute basics.

Like....

Be cognizant that those of us with PTSD have reactive senses.....sight, smell, hearing, touch, taste.

Give a few examples in each category of how we are sensitive and how the provider could act to be sensitive to our needs.

Because again, too much info means they won’t remember it.

 

[shimmerz]

Peer Supporter personnel. Nobody knows us like one of us.

 

[Mee]

I’d stick to the basics.

No offense intended, but people are responding and will continue to...

I think Eve is right