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Ok I'm going to vent


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#1 chelley

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Posted 22 August 2012 - 02:27 PM

Hi girls

Some threads are seeking advice I know but this is just a letting off steam one so please no unsupportive comments.

Today Raffie had another ultrasound. Every ultrasound we have been for previously we have gone into naturally thinking positive and unfortunately received bad news every time. Today we were hoping that we wouldn't be three times unlucky and receive any news which added to the problems we already have and expected to see today.

He had his renal ultrasound and it was the same technician who did his spine ultrasound. Thankfully he coped much better than during previous scans and it wasn't too long or stressful.

However the point that really annoyed me is the interactions staff have with parents of children with a disability.

I work with students who have special needs so know how important the dialogue between professionals and parents is.

At the conclusion of the scan the radiographer says to us "okay everything is perfectly fine". She then went on to talk about our sons condition and much of the information she told us was in fact incorrect. I am sure she was trying to reassure us or maybe make small talk but I found it inappropriate. She then asked us if he was otherwise okay. I commented on his OSA and she asked me why we haven't had his adenoids removed. Umm because that isn't causing the problem mad.gif I felt like commenting that we prefer to get our advice from the ENT surgeons thanks all the same.

I was going to say nothing but was really annoyed. She is not a dr, not the radiologist and she damn well isn't the neurosurgeon. I told her in fact the neurosurgeon had told us the opposite and we know that everything isn't fine with his renal system. She told us it is highly unlikely there is any problems it is just routine when I told her the neurosurgeon in fact said it is almost a certainty there will be significant issues. He will require further tests not an ultrasound to determine nerve issues.

I was glad that structurally things looked ok but wish staff would choose their wording more carefully. She may have chosen to say "I can't see anything which is a concern to me etc" but don't present subjective information as fact and not being the dr in fact she shouldn't be saying anything. It is not her place.


Then when I took Raffie for his 4 month old needles I noticed another odd exchange. The nurse was very lovely and friendly, trying to not look a little overwhelmed as she looked through his progress notes and listened to his medical history for 4 months wink.gif

She then asked me if he was rolling. I commented "no" and before I could say anymore she cut me off with "oh that's ok it is far too early and not normal to be rolling at 4 months".

I just looked at her. I said "actually it is normal to be rolling or starting to roll at 4 months, I know lot of babies born at the same time who are rolling already. But the neurosurgeon told us he may not reach this milestone. Or he will reach the milestone and then lose the ability to perform the skill".

She then just looked at me a tad sheepishly and said "yes okay, he should be starting to roll".

WTF ohmy.gif Don't lie to me to try to make me feel better. I am aware of what my child can and can't do and I know what normal milestone markers are. I also know that there is a wide range within what is considered normal. I am not concerned or stressed about it. If he achieves it, wonderful. If not then that is his individual journey.

But don't treat me like an idiot or lie to me.





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#2 Avery

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Posted 22 August 2012 - 02:48 PM

Im so sorry you have been treated like this, and you are right - sometimes health professionals need to know when to comment, and when not too.

I know its not anywhere near the level you are dealing with, but my DD recently broke her leg. After the cast came off, we went back to x-ray to check its healing, and the technician tells me thats is still badly broken and she will have to go back in a cast. DD (3.5 years old) hears this and is totally distraught.

Needless to say we are cast free, and the tech obviously didnt know what she was looking at. I would have prefered her not to comment, and leave it up to the osteo's.

You have every right to vent xxx
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#3 flowerrose

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Posted 22 August 2012 - 03:07 PM

Oh bloody hell! Everyone is an expert these days aren't they? But what they are really saying is 'I know a smidgen of information about this and, since what I'm seeing/hearing doesn't fall within the very limited range of my experience in this area, it can't be so. They are just idiots and best ignored.

But when it really matters, when it's a really painful, hard topic anyway they should just keep their gobs firmly shut. While the nurse was inserting the misoprostal after my second miscarriage she told me I couldn't have PCOS because I was too slim for it. Needless to say I did not find it helpful or flattering.

I seriously think medical professionals need training in this area. Half-arsed comments and suggestions of 'misdiagnosis' are not on.

As for the CHN - I'd like to be surprised but sadly these people seem to be the top offenders when it comes to foot in mouth syndrome.

I hope you feel better soon and I would certainly raise your observations with the specialist when you see him/her.
x

#4 Thelma

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Posted 22 August 2012 - 04:11 PM

You know, I actually didn't think they were even allowed to say anything. Their job is not diagnose, they're just the technician.

I too have experienced idiot health 'professionals'. One speech therapist (who I don't think was even a qualified speech therapist, more like a teacher of the deaf) got me all worried after one lot of testing that Lily's hearing had deteriorated so badly and she'd need cochlear implants and we better get onto it ASAP. Thankfully I have half a brain and knew that this last lot of testing was done when she had had a cold so the results were likely to be inaccurate (which they were rolleyes.gif )

I agree with whoever said that all health professional should receive regular training in this kind of area. Bedside manner and dealing with patients is such a huge part of their job, it really shouldn't be enough that they know the technicalities of the job only. It's like me becoming a sales assistant because I know how to use a till and stock the shelves!

Hope you get to see the neurosurgeon soon so you can find out for sure what is happening xo

#5 HelsBels

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Posted 22 August 2012 - 04:44 PM

QUOTE(flowerrose @ Aug 22 2012, 01:07 PM) View Post

Oh bloody hell! Everyone is an expert these days aren't they?

^^^ Exactly! Anyone with a small amount of information seems to think they are an expert, that goes for the general public as well as people in the medical profession, but the professionals should know better to stick to their own levels of understanding and not over reach with their explanations if they aren't sure.

This is something I get a lot with our fertility issues. Unfortuately infertility is something everyone knows a little bit about; either they know someone who had problems or someone they know knows someone who had problems or they saw something on Today Tonight wacko.gif All reliable sources of info of course and this means they have every right to comment on our situation whilst in reality knowing nothing about what is actually going on with us blink.gif

This is bad enough coming from general people (*read MIL* dry.gif ) but when nurses, US technicians (and even in the past reception staff ohmy.gif ) presume to tell me what the specialist does/does not want to do etc without first checking with said specialist and theyget it wrong, I think that is so unprofessional! This IVF cycle for example I was warned that my hormone levels were starting to suggest hyperstimulation and because the hormones from pregnancy can make this worse I may have to for go my fresh transfer and just freeze any embryos we got. The day before the surgery to collect my eggs one of the nurses rings me with my blood test results and tells me my hormone levels are still really high but I am still in with a good chance of the Dr doing a transfer after and it will all depend on what he sees when he goes in (how many eggs were retrieved & how swollen my ovaries looked etc). I then get into the operating theatre and before the surgery has even taken place my Dr say 'so you know that we won't be doing the transfer with this cycle don't you?' sad.gif I had about 30 seconds to try and process this before I went under and so when I came round from the anaesthetic I was rather emotional about it all and trying my hardest not to cry all over the recovery nurse assigned to look after me wacko.gif If the nurse who rang me the night before had made sure of her facts before she spoke to me I would have dealt with it then and gone to the hospital entirely prepared. I was very annoyed to say the least!

Some of these people just need to think more about the fact that it can be patients' hopes and/or fears that are affected by the outcomes of these tests etc and so giving any kind of misleading information to them can be incredibly hurtful at best and depending on what it is about can even be dangerous. If they are not sure they should keep their mouths shut as far as I'm concerned. I don't want them padding out the conversation with stuff they aren't sure about or telling me something to reassure me when they don't know if its correct, just stick to the facts and if I want more infrmation I will ask the person who has specially trained to be able to give it to me!
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#6 Monica

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Posted 22 August 2012 - 04:50 PM

Oh Chelley, how frustrating and downright wrong!

I’m glad you found a voice to say something, it might just make them stop and think next time!

I’m with Thelma, I didn’t think they were allowed to comment really?

I had one choice ‘professional’ who neglected to read my medical record (aren’t you meant to for the patients you are assigned?) and when I said my tummy was really sore (after having had Nina) she said “Oh that’s just your uterus going back in to shape”
I was SO upset and angry I snapped back “Grab yourself a coffee love and sit down with my medical record because it’s a really juicy read and you might just discover that I no longer have a uterus”



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#7 HelsBels

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Posted 22 August 2012 - 05:32 PM

QUOTE(Monica @ Aug 22 2012, 02:50 PM) View Post

I had one choice ‘professional’ who neglected to read my medical record (aren’t you meant to for the patients you are assigned?) and when I said my tummy was really sore (after having had Nina) she said “Oh that’s just your uterus going back in to shape”
I was SO upset and angry I snapped back “Grab yourself a coffee love and sit down with my medical record because it’s a really juicy read and you might just discover that I no longer have a uterus”

OMG laugh.gif what on earth did she say to that?!! Would've loved to have seen her face.

Its awful though. Some of them just seem to be going through the motions without a thought to what damage they could do with a wrongly placed comment when it would take them a matter of minutes to read up and find out our history and what was actually happening with us dry.gif Good on you for setting her straight. Stuff like this always makes me wonder if some of these people have completely forgotten the reasons they probably went into the profession in the first place sleep.gif
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#8 Monica

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Posted 22 August 2012 - 05:39 PM

She got all flustered and hurried out of the room. Never saw her again as I requested she not be assigned to me for the rest of the stay and I also told the NUM that ANY staff coming in to my room had to read my file or at least be briefed on my situation first.

I had another nurse question why I buzzed for her to lift Nina out of the bassinette so I could feed her. After I explained I was too sore and the reason why (again sha hadn't read my file) she replied with "Oh, so you're the one that nearly died and everyone is talking about". Again, she was not allowed near me after that lovely comment (different hospital to the first nurse).

I totally agree with the going through the motions. It's the type of profession (health in general) where if you stop caring, quit.
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#9 beckabunny

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Posted 22 August 2012 - 06:22 PM

Oh boy! I'm so sorry this has happened to you, she really shouldn't have said anything at all. We have a long list of ongoing issues with Alex due do his ASD, and finding doctors who will listen to the problems and help accordingly. Our most recent big fail was waiting 6 weeks to get in to see a continence expert at a special clinic,I explain Alex has problems with using his bowels, being able to know he needs to use his bowels and a few other bowel related issues, so she issues an ultrasound and tells us to document all his output for a few weeks and then get the ultrasound done. We spend weeks documenting every single wee and poo, get to the ultrasound and she only ultrasounds his bladder!!

When I queried her, she told me that's what the doctor had ordered. He has no bladder issues (apart from the fact that he's been slow to train).

I could have screamed, at this point we'd wasted 3 months.

Having a SN child is such a challenge. Stay strong!

Beck xxx
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#10 Maxi

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Posted 22 August 2012 - 06:39 PM

There are some truly awful stories here.

Great response Monica! I would have tempted to do the same.

When I was admitted for the birth of my little one the nurse at the desk looked at my notes and exclaimed "Aneurysm?! That's a bit dire.".

Gee, thanks for your reassuring words. rolleyes.gif
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#11 HelsBels

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Posted 22 August 2012 - 07:02 PM

QUOTE(Monica @ Aug 22 2012, 03:39 PM) View Post

It's the type of profession (health in general) where if you stop caring, quit.

I agree but sadly I don't think the medical system could cope sad.gif
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#12 Leapstar

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Posted 22 August 2012 - 08:23 PM

I don't belong in here, but just wanted to say I am sorry that the health "professional" upset you with her inappropriate comments. I am sure in her mind she was trying to be helpful/positive, but her comments were not professional and she should have kept them to herself. smile.gif

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#13 SEA

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Posted 22 August 2012 - 08:53 PM

I'm sorry Chelle sad.gif

I thought they weren't allowed to say anything either. I wish people would just be quiet if they didn't have any correct information to add.

#14 Penny P Star

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Posted 22 August 2012 - 09:41 PM

I am really sorry sad.gif such an emotional rollercoaster when trying to submit your little one to medical testing like that - the last thing you needed was unhelpful incorrect comments.



#15 jantastic

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Posted 22 August 2012 - 10:08 PM

Medical professionals can be terrible - because you trust them. Inexperienced medical professionals who didn't realise they were talking out of their @rses were a large reason why it took us 4.5 months to click that things weren't all right with L. I mean, he was 4.5 months and laid still on his back with his head turned to one side like a newborn - and no one - no one - said to me that was an indication of anything. I see babies now and I just feel so stupid.

It's one extra load in the life of a mum to a SN child - you have to be so careful of every little thing you hear from anyone, and it's so easy to cling to the good news that people carelessly throw out at you, only to be knocked down at the next appointment when you find out the facts.

If you haven't done it already, I started keeping a couple of diaries for L, and they were really useful - I would strongly suggest doing something similar. One was the names, contact details and dates that we'd seen every medical professional, and a summary of the appointment, and the other was like a little diary. So if I noticed he did anything new (eg, held a rattle, held two rattles, looked at me with both eyes, held his foot), I wrote it down. Before that diary, I felt that we were treading water, and with the diary I could notice the really little improvements. It made it easier.


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