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Original poster

I am absolutely SEETHING - how dare the consultant...

79 replies

EmkanaCookTurkeyLikeICan · 14/12/2006 13:36

... write like this about me!

Tood ds for his injections today. While there, the nurse brought up his records on the screen, then left the room. I could see that on the screen there was a letter the consultant had written to the radiologist - in it she said things like "Mrs. X is very anxious and intense... For a while I had to be in daily e/mail and phone communications with her... [that is NOT true!]... I would advise you not to become entangled [this I guess is because I wrote the radiologist an e/mail with a query about the x-ray = he must have asked her whether to reply]"

I am so ANGRY and also upset.

Have to go and read to dd2 now - will be back later...

OP posts:
Issymum · 14/12/2006 20:07

Sorry, my post was lagging way behind this thread.

Jimjams2 · 14/12/2006 20:07

Can you switch consultants? I have 3 friends who have done that, for this type of reason.

Jimjams2 · 14/12/2006 20:07

hmmm thiking about it - all 3 switched from the same consultant!

PrincessPeaHead · 14/12/2006 20:11

I don't know Emkana, I was just suggesting that you maybe try and get past the hurt that you obviously, understandably feel about reading that and think about whether there may be something you can do to dispel how you are obviously coming across. You do come across as anxious and intense on here but I absolutely take the point that how you are on here probably bears no relation to how you are with your consultants. And I do also think that being German may well be part of it, just because different cultures come across differently to others, and maybe the famous german efficiency (one line emails!) comes across as intensity. It is difficult isn't it.
It is the "I would advise you not to become entangled" that I think is much more unprofessional than the description of you as anxious and intense, and what I think you should focus on if you are going forward. That sort of implies that you are a timewaster or something and is a direct comment on how the consultant thinks the radiologist should deal with you, and I agree that that isn't on at all.
I guess that if I was going to take it forward I would write to the patient liason people saying how much you object to what she has written, enclose copies of all four, short, not daily emails, ask for an explanation and an expungement from your notes, and cc it to the radiologist and the consultant in question.
Thank you for not jumping down my throat, I just thought that I'd add a different view to the others, and I thought it was a valid one. Good luck!

TEEstheCEEsontobejolly · 14/12/2006 20:12

You need this sort of shit like a hole in the head don't you. Bloody bastards, how awful that's been said about you, a mum, naturally worried and doing what she has to do. Why the fuck should you sit there and just accept everything?? Bollocks to em Emkana, rise above it mate and be prod to be who you are and how you are dealing with everything and how you question things. I think it's to be applauded. Keep questioning, do what you have to do, who cares what they think as long as you get the answers you want and your are happy with how things are with you DS. Let em crack on and you crack on as well. "intense" - stick it - piss off, you're doing what you need to do, who cares how you come across.

Can you tell I feel pissed off on your behalf? Ignore my rantings and ;listen to what JJ has to say, she knows what she's talking about, I'm just a gobby mouthy angry mad woman! xxx

Jimjams2 · 14/12/2006 20:13

Issymum - you could be right. "delightful child" appears to be code for something (run for the hills I think- we had it on everything as did all my friends with the more difficult complex children )

saggarmakersbottomknocker · 14/12/2006 20:15

Hugs Em.

You can get Seb's medical records by writing to the records dept at the relevant hospital. They are supposed to let you have them within 40 days and may make a charge to cover photocopying.

I always ask for a copy of the letters that go between consultant and GP anyway.

As an aside, I agree that Em probably is anxious but it's horrible to see that written about you, especially when it's irrelevant to the matter in hand. And when it's written in a way that makes it seem as though you are anxious over nothing. And it's a sad fact that as far as the NHS is concerned you have to be the world's biggest nagbag to get anything done with a reasonable amount of efficiency.

I've posted to you before Em that pretty much the same was written about me 'mum is tired and over anxious' (No sh*t Sherlock!). I felt that they were belittling my worry about dd - in fact they did end up apologising that they didn't take my concerns seriously enough.

Original poster
EmkanaCookTurkeyLikeICan · 14/12/2006 20:16

I just get so blooming annoyed - one thing I did e/mail her about twice was whether it would be worth testing for hypochondroplasia, after achondroplasia had been excluded via a bloodtest. I never received a satisfactory answer for that.
Now I saw the geneticist on Monday - and guess what: He has suggested testing for hypochondroplasia.

Why the f*ck couldn't that be done six months ago then??????????

OP posts:
Monkeytrousers · 14/12/2006 20:16

You can apply in writing to see your medical records

Original poster
EmkanaCookTurkeyLikeICan · 14/12/2006 20:18

I spoke to a lovely woman at the medical records office today - she's sending me a form so that I can see the medical records.

Can't wait!

OP posts:
Jimjams2 · 14/12/2006 20:20

Emkana- you are abolsutely right- and my friend with the dd with the unknown condition has found the same thing. She's had to chase up test results, she's had to find out why some test results are missing, she's had to suggest tests that can be done. I knnow she ended up changing consultant. No doubt she was muttered about as well. It's completely not on. Do you have friends in RL with children with SN - it makes a huge difference if after banging your head on the wall in frustration you can ring someone who has to deal wiith the same sort of shit day in day out and just scream down the phone.

PrincessPeaHead · 14/12/2006 20:20

just to cheer you up, \link[http://news.bbc.co.uk/1/hi/health/3159813.stm\this is funny on medical slang]

PrincessPeaHead · 14/12/2006 20:21

just to cheer you up, this is funny on medical slang

saggarmakersbottomknocker · 14/12/2006 20:25

Some consultants still think they're a cut above. Thankfully most are down here with the mere mortals - last time I met dd's paed he was in Sainsbury's buying a microwave curry.

tamum · 14/12/2006 20:28

I can completely understand why you're angry emkana, I would be too. My guess is that she was feeling rather defensive, knowing that you were unhappy with her care, and she was seeking to deflect any possible criticism by the radiologist. I may be wrong though. With the hypochondroplasia, it may be a case of pessimism (her) vs optimism (geneticist). Although they may be able to diagnose hypochondroplasia by genetic testing they are never possibly going to be able to rule it out because it's not just caused by one gene. I guess the geneticist (rightly) thinks it's worth a try, but the consultant just thought that you might not get an unequivocal answer so why bother. I may be wrong about all that too though

PrincessPeaHead · 14/12/2006 20:30

(can I just say tamum that I always enjoy reading your posts because you are clearly at teh top of your game YET you manage to talk about complex genetics in a way that all of us can understand. I'm such a fan)

right, thus ends the fawning for the evening, move along folks, nothing to see here

tamum · 14/12/2006 20:32
Original poster
EmkanaCookTurkeyLikeICan · 14/12/2006 20:35

While we're expressing our love for each other though, may I just say how lucky I feel I am to have MN where I can "talk" to women who are as intelligent, educated, articulate and experienced as all of you here on this thread are.

OP posts:
Original poster
EmkanaCookTurkeyLikeICan · 14/12/2006 20:37

tamum - the geneticist said it might take six months (!) to get a result of the test for hypochondroplasia - does that sound right?

He said it was on the same gene as achondroplasia, but I did read somewhere that only 70 % of hypochondroplasia cases are caused by the F whatever it is gene...

OP posts:
Original poster
EmkanaCookTurkeyLikeICan · 14/12/2006 20:45

The other thing in the letter was that she was expressing her disbelief that I was still going on about Jeune's, when she felt that I had been reassured enough that ds doesn't have Jeune's (this was the opinion of the radiologist at our local hospital).

BUT the geneticist this week said Jeune's could not be ruled out yet!

OP posts:
DeckthehallsLaDiDaDi · 14/12/2006 20:46

I'm pleased that PrincessPeaHead posted as I was eating my dinner trying to think of how I could post pretty much exactly the same thing.

IMVHO it's not the "anxious and intense" that I would be annoyed about but the inaccuracies in the description of your contact with the consultant and the "I would advise you not to become entangled".

It's also pretty common these days for copies of letters to be sent to parents, perhaps you could ask all those that you meet in future to cc you in to the letter so that you will know exactly what has been said about your ds and yourself.

tamum · 14/12/2006 20:50

Let's face it we're all bloody lovely, aren't we?

I don't know about the 6 months to be honest, that's very much an NHS timetable thing- it wouldn't take anywhere near that to sequence the FGFR3 gene if there was a lab just doing that for Seb and nothing else, but it's not a quick look-and-see test, certainly. Bluebear would know more than me about that. You're right about the gene though, that was exactly what I meant- if they find a mutation that's fine, you know where you are, but there's no way they can rule it out if they don't find a mutation because it could be one of the remaining 30%. I don't know of any other genes that have been implicated yet, so presumably they wouldn't know where else to look (notice how my ability to explain anything clearly has deserted me because I'm still blushing).

PrincessPeaHead · 14/12/2006 20:53

but we still understand you!
and love you!
mmmmmmmmmmmwwwwwwaaaaaaaaaaaah!

DeckthehallsLaDiDaDi · 14/12/2006 20:54

Emkana, this may be totally out of order but I need to ask you how you will feel if no definite diagnosis is reached regarding your ds? From what you have posted here it seems like that may well be a possibility or that at least you might end up in a situation of "We've ruled out x and y but it may or may not be a or b." Hard as it may be I think you should think about how much a diagnostic label will mean for you and your ds especially as he gets bigger, and hopefully stronger, and his prognosis and treatment can perhaps be based more upon his clinical status than upon what might be expected for a "typical child with condition a".

This post is meant entirely with kindness as I have read about the difficult time that you have had from your pregnancy onwards.

tamum · 14/12/2006 20:55

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