Oh I do love that consultant... she's written me another lovely e/mail...

[emkana]

...after I wrote to her asking for a copy of the radiologist's letter:
"I think that you would have to go through an 'access office' to get a copy [of the letter], as you in fact should have done for the X-Rays [I asked for a copy of those back in August - obv left a bad taste there too]. In any case, I have quoted it to you virtually word-for-word."

That's me told again then.

That is quite normal for the NHS, emkana. We only ever got to see copies of dh's letters if we saw the consultant privately, and then he always sent a courtesy copy to us. Other than that, as the consultant says, you need to request access to the patient record.

So much for patient-centred care, eh?! I would give her secretary a ring and ask how you go about getting a copy of the letter.

Message withdrawn

I feel really upset, so powerless.

don't let them get you down. she sounds like she needs a course in being nice.

The medical records office at the hospital will send you them em. The best thing to do is whenever you go for a consultation ask to be copied in on any correspondence. It's only sensible anyway to have your own file of stuff especially if like you, you travel abroad. Take them with you and if Sebastian gets sick you have some up to date info.

We've had issues getting copies of old stuff but recently the hospital's (Children's anway) send them automatically.

God this stuff winds me up. They pay lip service to your 'right to a second opinion' blah blah and then come over all stroppy.

I just wanted the letter because I've read soooooooooo much about skeletal dysplasias and I wanted to see what the radiologist had said in detail.

But obviously I'm not worthy...

Emkana I think you'd be better off applying to the radiologist's hospital for a copy of the casenotes. Contact the Head of Health Records or Medical Records Manager (could be called either). When we copy casenotes for patients we can't include 3rd party information, so letters from GPs or other agencies.

I thought it was standard practice now to ask the patient if they want a copy of correspondence. I've just added it to our discharge checklist on the unit I work on, to remind staff to ask patients if they want a copy of their discharge summary.

Surfermum - thanks for the info.

Sorry for being dim, but what do you mean by
this:

"When we copy casenotes for patients we can't include 3rd party information, so letters from GPs or other agencies."

What other agencies could those be? And does that mean I can have all hospital notes, consultant's letters etc.?

I always find that bad things happen when patients/relatives read medical notes and letters. They can't comprehend 99% of what they read and freak out. The wife of one of my patients quietly grabbed her DH's notes one night. She saw the letters SOB all over his notes and thought that we were all calling him a son of a bitch.

It took me 30 minutes to calm her down from her tirade and explain that SOB is how shortness of breath is written on medical notes.

I've got loads of these stories.

Just playing the devil's advocate. I hope everything works out for you.

I work in an Addiction Service, so in our case it would be letters to us from social services, the probation service, an independent rehab centre. If our clients wanted those letters they would have to apply to the relevant agency, so that the authors of the letters can give their permission for the letters to be copied. When I worked in mental health we couldn't copy letters from relatives which we often got.

In your case the radiologist would have to give permission for his/her letters etc to be copied, so you might as well contact them direct. (Am I right in thinking it's a different Trust?)

They have 21 days to deal with your request.

Google "Access to Health Records Act", and you'll get loads of info but here's a link

As a parent, I felt empowered by having my dd's notes, more in control of a difficult situation. Yes, they made difficult reading especially the repeated assertion that I was a tired & overanxious parent, even on the day before she had her first MI.

Not just as a parent - dh is chronically ill and essentially his recent medical history resides in my head, because we have moved and the notes have not followed in a coherent way. The rheumatologist has literally written to me to say "what letters do you have, so I can avoid unnecessary tests". I've sent what I can find, but there are clearly holes in the story.

But clearly clinical confidentiality is a major issue, even though I fully understand why that's no comfort to emkana. I know it's awful, but you just have to keep the pressure on. It is the only way to get what you want or need from the service.

It certainly should be standard practice to ask the patient if they want a copy of correspondence - I'm definitely going to ask about that next time dh is seen. I have friends who specialise in some of the areas of medicine that he's being treated in, and I'm forever having to sneak peeks at reports, so I can tell them what they say and get some advice.

i guess the issue here emkana is there while you know all the jargon and terms in relation to your little boy, not every patient will. in fact many tests and examination reports can create an awful lot of panic and further questions when often there does not need to be any. even as a nurse i have read numerous times something on a report and thought cripes, only for it to be nothing to worry about. therefore i do not agree that all reports should be directly copied to patients. to me it sounds as though the consultant feels as though you are questioning her word and judgement, which as much as it is your right to do makes many people respond in negative ways. perhaps if you try and give a little ego soothing and explanation (i don't know if youve done this already!) you might find you get a little further with her. i'll admit that us sorts don't like to be asked to do things out of the ordinary, often because we worry it can leave us open to legal actions etc if things aren't done by the book. consultants are pompous people all too often who think they know best as i found out to my own cost recently. good luck emkana

The consultant just doesn't seem to care one little bit, it already started when ds was first in hospital at 2 days old - she didn't come to see us then even though she was phoned and asked to pay us a visit.

Is there someone else you can see Em? Hopefully once you've seen the lung specialist you can ditch her anyway.

I do want to see somebody else...
but can I do that apart from going private? I can't just demand to see a different consultant on the NHS can I?

At the risk of sounding like a stuck record, emkana, this is a conversation you need to be having with a good GP. He/she will be able to show you the relevant specialists reports, and provide the necessary glossary or interpretation. She should also be able to tell you whether this is a respected consultant who just happens to have an unfortunate manner, or whether you might be better off seeing someone else. And can then phone a friend/colleague who knows about neonatology/grown disorders/dysplasias to find out whether there is someone else suitable.

Yes of course you're entitled to ask for a 2nd opinion/ re-referral. Obviously you can't ask the consultant that, but it is a GPs bread and butter. I've had multiple referrals for something as simple as an impacted wisdom tooth until we found a consultant who said what my dentist and GP thought they should be saying. And I have and would again go down there screaming blue bloody murder until my children's eyesight issues have been sorted out.

I think what you're dealing with is a trifle more important than wisdom teeth and wonky eyes, so find yourself a decent GP, and tell them the lowdown. If they genuinely think you're getting yourself worked up for no reason, then they should be able to find a sympathetic way of suggesting that to you (and yes, that has been me on many occasion. One of the downsides of a serious and obscure medical condition is that you do sometimes lose perspective). But if they think you are being p*ssed about, they should have the wherewithal to sort it out much more effectively than you will be able to by yourself.

There must be enough MNers wherever you are (?Bristol) to give recommendations for a decent family-friendly GP practice?

i applied for my and dd1's records when we moved from one part of Essex to another and then again applied for copies from the new hospital trust for us to take to Australia. Made it so much easier to then just pull apart the notes and give the relevant parts to each relevant consultant.

We were lucky though dd1's paed consultant said rather than getting a copy of dd1's cardiac records - very very thick folder. He would simply get his secretary to copy the important letters that were sent to him and then have them sent to us.

So some consultants can be helpful - just depends on their attitude regarding patients.

Maybe it is worth applying for his medical records in total - and that will give you a starting point.

I must be really lucky with my consultant as she always sends me a copy of everything.

sorry you have to dealw ith this woman, she may know her stuff medically but she was clealry absent the day they taught patient care.

What an obstructive snotty cow. Glad you've got some info here about access to health records. Frogs is right about getting a good GP - and about your right to see another consultant if you wish (you need your GP to organise this for you).

Thank you morethan1
I agree with you