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

[EmkanaCookTurkeyLikeICan]

... 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...

I just had a look, in all I've written her four (!) emails.

Am tempted to post them here to see whether they sound anxious and intense...

i would def question her choice or words and reason behind them, given the circumstances i think youve been more than patient with them!

emkana- they always find something - it is very very common. My friend was always described as "anxious" (she wasn't- no more than would be expected giiven that he rdd had just been dxed with a serious condition). I was said to be in denial (by someone who had never met me or my son- I can guess where it came from- from someone who I disagreed with because she didn't know what she was talking about- and every parent I've come across found her the same).

You could write and complain officially. You could ask for a coopy of the notes in the first case. I moaned to friends about the person who had started the "in denial" rumour. Another friend sent letters complaining about her to various people. I suspect that was a better way to do things. It depends on whether you can be bothered really.

You have ever right to be worried you know, and every right to ask for information. Its the consultant with the problem.

I have phoned the medical records office to view the file.
Will those letters she writes about me be included?

Or will they be taken out?

How truly horrible of the consultant. Of course you're going to be "anxious" - what do they expect parents in this situation to be like, fgs??

Really angry on your behalf. Do get the notes - you may have to chase several times for them, though - I got DS1's notes and it took me months!

Outrageous! Do you have a sympathetic GP? Mine would be up in arms on our behalf in a situation like this.

they should be available, they cant show you an edited version as everyone is allowed to see their medical notes not jus snips of them here and there

Message withdrawn

"If you want to complain, you could get hold of the correspondance under the Data Protection Act and then write an official complaint."

How do I do that?

I'll see what is in the file.

The GP is not particularly sympathetic, unfortunately. Also, what I can say to the GP at this point, considering I wasn't really meant to see that letter on the screen?

here is a link to the website of the Information Commissioners Office - I'm sorry that I haven't browsed it in dtail myself but it ought to have some guidance on how you go about applying.

i found a letter to my gp from my consultant saying that i was suicidal following the loss of my pregnancy and that i had reacted similarly to the death of my father.

i had never spoken to him. my dh had, because he was worried that i was so upset, didn't say anything about suicide, just that i was so sad. the consultant asked if i'd reacted in the same way to anyone else dying and dh said (becasue i heard him) 'i don't really know, it was ten years before i met her, but she does talk about her dad so i guess it upset her.'

and from that my mental health was questioned in writing... i only got wind of it when GP was asking me loads of intense questions when i had an app for an ear infection...

Emkana, I keep meaning to post on this but write something and change my mind.

I can really understand how you are feeling. I too have been accused of being pushy and in one letter written by the GP to the consultant paed, they actually wrote that they thought they were referring dd for a 'trivial matter' but basically implied they could not get rid of me!

I think that as your ds is now seeing the correct specialists you need to really think whether you want to follow through with the complaint. I agree with jimjams that this is not your fault but in this complaint, it will be your word against hers and she probably could argue that you were anxious (which you were as any mother would be).

I did informally complain about the GP that wrote 'trivial matter' (they did not believe that dd had a hearing problem) because it turned out (when we saw the consultant) that she did have serious hearing loss in one ear and mild in the other (booshucks to that doctor) and the consultant was horrified that had I actually not been pushy, dd would never have been seen so he backed me up and wrote something in his letter back to the doctor.

I know you say your GP isn't sympathetic but it may be a good time to try and get him on your side - explain how you have been feeling and tell him that you don't appreciate being referred to in this manner. I would be very angry like you are.

Hi Emkana. I'd be furious too. You've got every right to ask for a copy of the letter and I'd just say in your initial request that within the terms of the Data Protection Act 1998 you have the right to see records relating to you. If I remember rightly, they have the right to charge you for retrieving the information (!!! - I know...) but there's a maximum they can charge which I think is £10 or £20, (the hospital will have written guidelines about this) but they also have to respond to your request within a reasonable amount of time - there are guidelines on that too. The hospital should be able to give you a copy of their data protection policy.
If your initial request doesn't get you anywhere, perhaps also check it out with the Information Commission. I think they also have a phoneline you can call for advice on such matters.
I hope you get somewhere. It's bad enough having to go to hospital on a regular basis without dealing with all this crap as well.

Thanks for all the advice.

Thing is always whether I have the energy to do anything. I will definitely fill in the form though to view ds's file, and then take it from there.

I just love the fact that the consultant is oh-so-busy that she just CANNOT write a referral letter in less than three weeks, but she does have the time to write a letter badmouthing me...

Emkana, just playing devils advocate here...

you are anxious and intense, aren't you? I mean just reading the postings you've made here over the last 8 months or so makes that very clear. I'm not saying that it isn't completely understandable, but you clearly having been fighting for some time both before and after the birth for answers and information in three countries, so I'd say, yes, you are anxious and intense.
It is always a shock to read things about oneself, I'd suggest that instead of writing more letters and getting that label more firmly attached, you think about how you can develop a more positive relationship with these consultants. I must say I don't know how usual it is to be repeatedly emailing consultants, but perhaps questions could be kept for future consultations or dealt with on the phone?

Please don't hit out at me, and I'm sorry if this has upset you, but I'm just thinking that perhaps you really think about what has been written and try and have an honest think "if this is what they think about me, maybe I've been approaching them the wrong way". It is better not to get into a war with your healthcare providers.
Best of luck xx

you're right to question this type of info being kept on computer.

It's always worth choosing your battles emkana- so I agree examine whether you have the energy to do something about it. My friend who complained about the person I had a run in with as well, actually didn't officially complain. She replied directly to her and cc'd the letter to everyone she could think of. The person concerned then replied and dug herself into a deeper hole so my friend replied and cc'd everyone again. I have had a number of professionals whisper to me ("I shouldn't be saying this but....") that that particular professional is pretty dreadful, your consultant may be held in the same view.

It may be that they can't give you the answers that you want because it just can't be done and is a case of having to wait and see, but your GP should be able to offer couselling or something to cope with that as being in no mans land is an extremely traumatic place to be (been there with all 3 boys and it is the fastest route to basket caseness- with ds2 and ds3 I had people in place I could talk to though and it helped).

pph, I wrote three e/mails to the consultant in July, two of which consisted of just one line.

I wrote one e/mail to her in September.

Nothing since then.

I have had one phone conversation with her, in October, which came about after ds had been tested for the RSV virus. She was told by the hospital to phone me.

There has been no other contact outside consultations. Is that really that intense? In the e/mails I did write to her I was completely to the point, brief and as un-anxious as I could manage.

I appreciate your input, but the anxiety that I express here on MN I make every effort not to display too openly when dealing with ds's healthcare providers. It is not my "style" to show my emotions in day to day life. (All the more reason for me to use MN as an outlet.)

Yes, it is probably unusual to be in e/mail contact with a consultant, but I was told by the consultant's secretary to use this form of communication, so I didn't realize that it wouldn't be welcome.

I am very angry because I think her letter shows how little respect she seems to have for me. And I'm angry in particular because it is simply not true that I have been bombarding her with e/mails and phone calls.

I do have my thoughts as well whether the fact that I'm German and that the possible diagnosis of Jeune's syndrome was first mentioned in Germany has something to do with all this - Germans = broody, no sense of humour, isn't that the stereotype? And how dare I go to see a doctor in Germany to ask for a second opinion...

I don't mean to lash out at you, and I understand what you're saying, but looking at the facts now - have I really been that intense? I don't think so.

havent read all the posts here but... my mother was laballed as 'nuerotic' by her GP following the death of my brother 35 years ago. my brother went to his GP this year for the first time in 12 years about something. The GP told him there was nothing wrong with him and he was nuerotic like his mother!! turned out he had a nasty bacterial infection that required antibiotics.

you may well be rather anxious, but that is not a reason to write this on your notes. seems totally unprofessional to me. follow it up

INcidentally though I do think that parents get pigeonholed, and I think that is shocking, and when it happens care is not as good as it should be. My friend has a dd with an unknown metabolic condition and I know that she was frequently on the phone to the consultant asking for test results, requesting tests, chasing missing test results etc. So I don't think asking to talk to consultants is unusual if your child has a potentially serious condition.

IN my case the "JImjams is in denial" was used to ensure that my son did not receive speech therapy. Basically I told them some things he could do, they told me I was imagining it and so he did not recieve the therapy (until we paid for it, and guess what he could do the stuff I said he could). The denial thing I found laughable anyway as I suspected autism a year and a half before they managed to diagnose it (having dragged him to lots of people because we kept being told there was nothing wrong with him- and he's at the severe non verbal end of the spectrum).

I find it very upsetting to be in a situation like this morning, where the nurse, when she returned, quickly read that letter while I was sat there - what must she have been thinking about me, based on that letter by the consultant?

If the consultant has to express her dismay in that manner then I'd rather she told the radiologist informally in a phone call or an e/mail so that it wouldn't go on file what a nightmare she thinks I am.

The point about whether he could or couldn't do the stuff was that he didn't receive the therapy because (quote) "he's not capable of doing anything so there's no point giving him any therapy". Right.

Emkana- if your child is under the care of a consultant long term (rather than just a quick check up of one specific thing) it is usual to be in direct contact with the consultant. I have some concerns about ds1 at the moment- am watching and waiting, but if I get more concerned I would ring the consultant's secretary direct and ask for an appointment.

Funnily enough DH was also described as 'anxious and intense' by his consultant neurologist in her letter diagnosing Multiple Sclerosis. I remember thinking at the time, of course he's bloody anxious and intense; he's 28, he's just got engaged, he's undergone a whole battery of tests that anybody who'd done half an hour of research would know are used to diagnose this incurable, progressive neurological disease and you've got the bedside manner of a putrefying carp. I'm now wondering whether 'anxious and intense' is actually doctor-speak for 'well-educated, articulate and not easily fobbed off'.

I think PPH is, rather bravely, speaking sense. You need to deploy all your considerable intellectual and social resources to get these people on your side and keep them there.

Having seen the community paed last week also showed me how different things can be - he was so lovely, wrote a detailed report about ds which I received only three days after seeing him... not excluding me, but involving me in the care for ds.

The consultant, on the other hand, makes me feel as if I'm trying to get hold of information I am not entitled to, when I bloody am.

Emkana - a professional we have had a lot of dealings with said that when she moved jobs and was reviewing files she found lots of files with "FLK" on then and "NFC" she asked what they meant- "funny looking kid" and "normal for cornwall" came the reply. She was seething. There was a similar case described on mumsnet a couple of years ago (worth searching for). It is appalling that these things get written on notes as it does affect the care that you receive.