I got ds's medical records - but the offensive letter has been taken out...

[emkana]

... cost me 50 fecking quid as well to get them.

The one letter that really upset me is not in there (in it the consultant called me "anxious" and "intense" and advised another doctor not to "become entangled" with me).

Don't know whether I'll do anything about this or not...

contact them and say the offending material has been removed, you will give them one week to put it back otherwise you will seek legal advice as you have paid for full medical notes, nt an edited version!..cheeky swines, not enought to say it in the first place and obv know they were in the wrong, now theyve made it disapear

That's really annoying, Emkana.
I bet there's some clause that enables them to do it though - which is outrageous, but probably there to get them out of these situations.
I agree that you should write and ask for a copy of the missing material, but maybe check the rules and regs first.

Don't really know anthing about this but how are things going now with DS Emkana?

The only time they can withold info is if it would be detrimental to you. Which I suppose they'd justify by your being "anxious" and "intense". Although it would be intersting to see how they'd phrase this in an explanatory letter. I too asked for hospital notes once, only to see that my consent for a procedure for my son was magically in there (not my actual signature but written in words that I had consented). It was something minor and I didn't have the energy to pursue it just for the principle.

I wasn't sure whether I was overreacting (again ) but yes I will get in touch with them to ask for the lettter to be included.

Flossam, thanks for asking. We went down to Bristol for 24 hours on Friday to do the ph study, waiting for results on that.

Since mid January when ds was put on AB's permanently (he has them Mon, Wed, Fri) he has been fantastically well, no wheezing, no cough - I am very pleased with that, obv., but hoping that in the medium to long term we can do it without the AB's!

Next test is a bronchoscopy, not something I'm looking forward to...

Do you work at the children's hospital?

emkana, sorry I don't know your DS's full history, but anyone who has a poorly child will be 'anxious' and 'intense' I know I bloody well would be. I think that is outrageous

No, in the BRI next door. I'm in the white not quite so ugly building at the other end from the childrens bit. My friend works in day surgery there though. She is very lovely

Glad to hear things are progressing at least, and hopefully one of these will find something and you can get treated and thing improve for you all. I have my fingers crossed.

the letter may constitute 3rd party data and the writer would have to give consent for you to have the letter,

gothicmama - the letter was written by "our" consultant at the hospital, all other letters she wrote are in there, just this one is missing.

bump

It's possible it's an admin error and should have been copied and wasn't.

It's possible it's an admin error or delay and it should have been filed and hasn't been. It might be sitting in a filing tray somewhere or in medical records awaiting filing.

Or they could have removed it as they thought the content of the letter might distress you - the Access to Health Records Act allows this.

The Consultant I worked for used to offer appointments to patients who wanted to see their records to go through them with them, so that if there were any questions or anything they didn't understand she could answer it there and then. It avoided this sort of thing.

I'd get in contact and see what they say.
Glad your ds is staying well

I'd contact them and demand a copy of the letter and an explanation for taking it out. And an assurance that ALL relevant material has now been included - what else are they hiding from you? No expert on Access to Health Records Act but if they give you the run around, might be worth a call to the Data Protection Commissioner - DPA says you are entitled to see your personal data.

FWIW, research in one PCT (think in Manchester) showed that despite doctors' concerns about patient access to their own records wrt sensitive info about mental health or so on, actually access was a good thing that patients found helpful. Didn't cause any problems at all. So there is no good reason for keeping stuff from patients - just back-covering.

Could they have decided that this letter didn't need to form part of ds's medical notes? From memory it was a comm between the consultant and radiographer about you, not ds, and if it doesn't discuss ds then perhaps they are entitled to decide retrospectively that it isn't part of ds's medical notes.

Out of interest what are you hoping to achieve?

Ladymuck - I am not really sure...

Well personally then I'm wouldn't advise pursuing it. That particular letter doesn't really concern ds's condition. If you do get a copy of it, then what do you do? Confront the consultant? Make a complaint? Would either of those outcomes improve ds's care? And what is the chance that you will be able to prove that the comments in the letter were that inaccurate, as in some respects spending time and money following it up isn't evidence of being totally relaxed and laidback! I know that it may well be almost a cultural misunderstanding, and I can fully understand why it upset you, but personally I would let it go.

If on the other hand you feel that the consultant isn't investigating your concersn re ds properly, then that is something you might want to pursue. But ime consultants in the UK withoin specialist fileds can be a fairly tightknit community, so unless you have clear evidence of malpractice I'm not sure that you'll get far.

Well I did phone up the Medical Records office and they will see if it has just been an oversight in the photocopying.

But you're right in what you say, ladymuck, and I don't think I will do anything. Just fantasize about it.

Wonder if it constitutes part of the Data Protection Act if they withold it?

This happens very frequently when a hospital and/or clinicians wish to hide something from the patient. It particularly happens in cases where there has been some negligence on the part of the clinicians. The notes will be carefully edited and any incriminating bits will "disappear". Believe me, this is absolutely standard practice in the NHS. With the Access to Health Records Act in place, it shouldn't happen as, by law, you are entitled to see a complete, unabridged version of the notes. Whether the hospitals stick to this, I am not sure. No doubt they have found loopholes to slip through, which makes a bit of a mockery of the law, though.