Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

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:
morningpaper · 14/12/2006 20:58

Poor you emkana

But the Dr might think that the consultant is a total c"nt, so try not to worry too much

If it's any consolation I had a breakdown when I was a TEENAGER and all my medical notes are now pre-fixed TRANQUILISER DEPENDENT AND SELF HARMER which makes me feel GREAT when I see the GP computer screen every time I go in

tamum · 14/12/2006 20:59

Sorry, that grin now looks spectacularly inappropriate- it was to PPH.

I think what emkana really wants (although obviously she can speak for herself) is to get a diagnosis that would rule out Jeune. That's the real spectre, isn't it emkana, because of the respiratory problems? I guess as Sebastian gets older that will become clear in any case, diagnosis or no, because I don't think the chest problems ever manifest themselves any later than childhood if they're going to, do they?

EmkanaCookTurkeyLikeICan · 14/12/2006 21:02

Ladida, I have known for quite a while that I might have to accept that there will never be a certain diagnosis.

Considering there are over 200 types of skeletal dysplasias, some of them so rare that only a handful of cases exist, I know that this might well be a possibility.

What I find difficult to deal with is the lack of open communication. I can't help the fact that I have read a lot about skeletal dysplasias and would like to discuss things clearly. So I would like to ask the radiologist in person - "I understand that there are specific changes to the pelvic bones in Jeune's syndrome. Were any of these present in my ds's x-rays?" Or "I understand that one of the only radiological features of hypochondroplasia is the difference in distances between the lumbar vertebraes L4 and L5 - could you comment on those in my ds's x-rays?"

But to discuss things in that much detail is not something that is welcomed by the medical profession.

OP posts:
DeckthehallsLaDiDaDi · 14/12/2006 21:03

Bloody hell morningpaper, I'd ask to get that removed if I were you! I bet that's a great help to the doc when you go in with your slipped disc and knackered fanjo (reading thread in chat).

EmkanaCookTurkeyLikeICan · 14/12/2006 21:04

tamum, you hit the nail on the head.

I want somebody to say to me "We can rule out Jeune's."

Then I wouldn't have to worry so much anymore about chest problems and possibly later kidney problems, liver problems...

I have sent the x-rays to America btw.

OP posts:
DeckthehallsLaDiDaDi · 14/12/2006 21:07

I can understand why, if you've got such specific questions, then a proper face to face meeting with the x-rays for you both to look at would help. It's a bit ironic really because until you get the answers you are obviously going to be hassling, for want of a better word, them and will probably end up taking up more of their time than the half hour or so it might take if they met you and went through things properly.

morningpaper · 14/12/2006 21:09

well EXACTLY DeckthehallsLaDiDaDi

I meant they probably think I've been up there myself with the hedge trimmer

Emkana you are THE BEST MUMMY, can't believe anyone would say that about you, stupid feckers (am a bit drunk btw)

EmkanaCookTurkeyLikeICan · 14/12/2006 22:42

thanks mp

exactly ladida!

OP posts:
andaSOAPBOXinapeartree · 14/12/2006 23:43

It's crap isn't it!

It appears as if you are being 'penalised' for being a smart, articulate woman who has enough get up and go to research and understand the possibilities of your child's condition.

Yet instead of welcoming this involvement, this particular consultant feels threatened by it and becomes defensive (at best) and insulting (at worst).

How dare we mere mortals dare to have an interest in what might be ailing our dcs!

PPH is right on one level - you do come across as anxious and intense - but part of the intesity we see here, is a direct consequence of the lack of acknowledgement of your intelligence in dealing with Seb's situation by this consultant. If she had welcomed your involvement and been prepared to work with you to reach a better understanding of Sebs condition then we might have seen anxiety, but less intesity!

I really feel for you Emkana, uncertainty is a bugger to live with, especially on this scale - and to be made to feel 'unusual' for feeling stressy and concerned is unforgivable to my mind!

If I treated a client in this way, then I would't be in partnership for long with my fellow partners - it is such a shame that she is not subject to the same rigours of peer pressure in her professional capacity!

andaSOAPBOXinapeartree · 14/12/2006 23:47

Oops - just read that back - you can tell I've been out imbibing can;t you

EmkanaCookTurkeyLikeICan · 15/12/2006 09:21
Xmas Grin
OP posts:
fatwoman · 15/12/2006 09:41

Emkana, I feel so for you. I appreciate that, to an extent, docs need to disengage emotionally in order to be able to do their jobs, but I can't understand or accept such a level of having seemingly utterly forgotten what it is to be human. "Very anxious and intense" what the FUCK (sorry but sometimes no other word does) are you meant to be? It's on a much lower level to you and Seb, but I felt similarly regarded when diagnosed with MS. "go away and get on with life" I was told 10 mins after being given this piece of news. And dh was warned against reading too much, because he probably couldn;t understand things like the blood-brain barrier. I have no advice but tonnes of empathy. there are some wonderful docs out there but there are some who need to adjust their whole arrogant us (the clever and superior) and them (the poor sick) mindset. Christmas hugs to you and the family. (it's hatwoman with her prescient Christmas name)

MerryPiffmas · 15/12/2006 09:48

So being anxious about your infant with recurrent health problems and a with everything else on top of that, is now a note worthy exercise
Christ no wonder the NHS is buckling under teh pressure
So where are al the calm rational parents going then?
Private?
ARRGHHH
Em, just let it go not worth it honey...

EmkanaCookTurkeyLikeICan · 15/12/2006 09:53

I think many doctors really, really resent it that so much information is now readily available on the internet so that they are not the "font of all wisdom" anymore, but have people questioning their knowledge.

To an extent I understand that it must be galling - there you are having spent years and years training, and then somebody goes on the internet for five minutes and tries to tell you how to do your job.

But I have never been anything other than courteous and respectful in my communications with the consultant, and I have only ever asked polite questions, so I really feel I don't deserve this.

OP posts:
MerryPiffmas · 15/12/2006 10:05

but as our consultant said
You the parent become the expert, you live with your child 24/7.
Dd has Noonan Syndrome and even her genetic consultant said I'll know more about NS than she ever does.
So not all consultants take such a view, I just wish you had one Em

frogs · 15/12/2006 10:28

Emkana, I think PPH has a point (several points, actually). I think doctors can be uncomfortable when put in a position where they don't have the answers. Good doctors will deal with this by trying to allay your fears while explaining very clearly why they can't be certain. Less good doctors will deal with this by being defensive and displacing the discomfort onto the patient (or the patient's parent).

I think there probably is also a cultural issue as PPH suggests -- as you've found in the past Gm medics are more likely to have very definite opinions (whether or not those opinions are justified), perhaps because that's what the culture expects. Whereas Brits are more likely to 'fess up (at best) or dither (or worse) when they don't feel certain, and may react badly when put under pressure (as you've found out, to your cost).

And lastly, medics do judge, of course they do. Their perspective is different from yours. FWIW I was sent to see a psychiatrist at 20 because after 4 years of intensive treatment (including several major bouts of surgery, weeks in intensive care, months in hospital, a complicated and side-effect ridden drug regime and a delightful system of treatment throughout my university years involving spending one week in six in hospital attached to a plasma-exchange machine) I confessed to the consultant that I sometimes had trouble sleeping and felt that I sometimes felt slightly detached from normal life (no shit, sherlock).

Instead of having sitting me down for a friendly chat, pointing out that I had every reason to feel exhausted/anxious/freaked out, I had two psychiatrists put me through a full, unsmiling psychiatric evaluation ("do you feel other people are controlling your thoughts? Are you considering suicide? Do you ever hear voices calling your name?" blah blah). Having expected a friendly psychotherapy-lite chat, I was so completely unnerved by this that I said virtually nothing, all the while thinking, "Fuckin' norah, they really think I'm crazy, how can I get out of here?"

A letter was subsequently sent to my GP; she was less than entirely enthusisastic about letting me see it, but did agree. It said, in summary, "patient is pathologically secretive, difficulty forming relationships, hostile, blah blah, we would recommend further treatment". In the end I laughed what else could I do? at which GP was visibly relieved, and did say to me, "You're not planning to go back, are you?" A few years later, while weeding my brick-thick file of notes (paper in them days) she demonstratively put this letter in the shredder pile, saying, 'I don't think we'll be needing this again, will we?'

Moral (I know I've said it before): you need a decent GP who can understand your (perfectly reasonable) anxiety and help you negotiate the medical maze.

xx

DINOsaurmummykissingsantaclaus · 15/12/2006 10:45

I think some consultants do resent that, emkana. We had a similar experience with the original orthopaedic surgeon who was treating DS2's clubfeet.

When I said that we wanted to take him to Sunderland to see a different orthopaedic surgeon who was using a different form of treatment, he was very hostile and refused to speak to me or even look at me.

However, when several months later I took DS2 back to the first hospital to show them his feet, he had to accept that the results were fantastic and in fact his unit now uses the same from of treatment that DS2 had in Sunderland.

So lucky I stuck to my guns in the face of his opposition, really.

FioFio · 15/12/2006 11:01

This reply has been deleted

Message withdrawn

FioFio · 15/12/2006 11:01

This reply has been deleted

Message withdrawn

singersgirl · 15/12/2006 11:05

Have nothing to add to the wise words from other posters except my sympathy and support.
It's the "not becoming entangled" bit which is particularly unpleasant. As if you're not supposed to ask questions or make suggestions about your child...

Hope DS is cough free and smiling!

Issymum · 15/12/2006 11:08

[Off-topic] Hatwoman: We had pretty much the same treatment. The neurologist came in and asked DH: "I think you have got a 'grumbling' (WTF!) form of Multiple Sclerosis. Have you ever heard of Mul-ti-ple Scler-o-sis [slowly]?" Too which DH replied "Of course I have" and the neurologist briskly replied "Good. I'll refer you back to your GP then." and started to put her things back into her handbag and get up to go. Now there is no way that the neurologist could be expected to know that DH has a first from Cambridge in Physics and a brain like a metal trap, but a one minute conversation with him is generally enough to reveal that he is not actually stupid.

[On-topic] I have heard from other consultants that their colleagues, such as neurologists, that deal with hard to diagnose and often incurable conditions tend to have a shockingly poor manner with patients. It is generally perceived that this is caused by being ground down by a daily diet of delivering bad news with few available treatment options. Now this is probably absolutely not the case for Emkana's consultant, I just thought I'd better be scrupulously fair about consultants!

BTW my father, step-mother, brother and sister-in-law are all consultants. My father and step-mother aren't remotely superior but I think they probably used to be - the torrid years of the last decade during which my step-brother has had end-stage renal failure has disposed of any superiority. My brother and sister-in-law, whilst lovely people, can still have rather superior moments on matters medical.

morocco · 15/12/2006 11:20

agree with others that the most worrying aspect is the 'not becoming entangled' which might lead other people to dismiss your concerns out of hand. and that can be dangerous because you are the expert in your child and you will always be their best advocate. if it was just the 'anxious' comments, I'd say just ignore it, unpleasant and unprofessional though those comments might be. but I think it might be worth challenging the letter and seeing about getting such notes removed.
nothing wrong with being anxious and intense when your sick child is concerned btw - don't lose sight of that!

DeckthehallsLaDiDaDi · 15/12/2006 12:52

Remember that radiologists tend to sit in a darkened room on their own all day so they often don't have the best communication/people skills, either through lack of practice or because they were never very good in that area and so sought out radiology as their specialty.

Not wishing to stereotype anyone of course .

Jimjams2 · 15/12/2006 14:14

oh emkana- just been reminded of something. My friend knows someone (with a child with SN) who makes notes as she goes along of all the things she wants to complain about (to do with her child's care). She then puts that to one side- then when she's having a bad day, had had it up to here and is in a bad mood, she gets the list out, sits down and writes the letters! I thought I might try it- apparently its quite good therapy.

EmkanaCookTurkeyLikeICan · 15/12/2006 19:24

jimjams - that does sound quite therapeutic!

OP posts: