Would you ask to see your notes

[nounandnoun]

Hello all,

I recently saw information which maybe I shouldn't have on my patient page on my gps website [at my gp you book appointments online and have access to your gp's notes]

The information listed my diagnosis and condition as much more serious then I understood it to be and more serious than has been discussed with me. They state that the psychiatrist believes he will have to section me. Obviously I'm not very happy about this.

It has made me wonder a lot about all the other notes on me that I don't see and I am now considering asking to see my notes.

So my questions to the forum are

1. If you were me would you choose to view your notes

and

2. Have you ever looked at your own notes, was it helpful to do so

thanks very much if anyone has the time to respond xx

 

[Kerome]

Of course we have time to respond to you nounandnoun

I must admit I've had plenty of opportunity to ask to look at my notes, but never did, thinking that it was not really useful to do so. It can bring up a range of unhelpful reactions, and as long as I don't notice any prejudice or poor behaviour on the part of my treatment team I don't really consider what is in their notes as relevant.

That said, there can be situations where prejudice can get transmitted from one doctor to the next, through the notes which can contain material that shapes people's views. In those cases insight into the notes and getting them amended can be quite important. But you need to have a good case to do so, your medical opinion is not on the same level as a doctor's.

 

[LittleMissHatter]

I've seen some of my notes. My GP shows me his screen on me often. I've also been sent notes from a mh assessment I had a couple of months ago when the police took me to hospital.

It did upset me a bit and it was quite funny how they analysed my sense of humour but I do kinda wish I hadn't seen them.

Unless you think there is a major mistake or lies written then personally I wouldn't but that's just me.

 

[nounandnoun]

Thank you Kerome! You make a good point about the circumstances in which knowing what they record is relevant or not, and about the differing status of my and the professionals opinions. This time around I have been lucky with the doctors and nurses I have seen, on the whole anyway, so there isn't any conduct I'm currently worried about particularly. I guess I'm just curious as there is such a gap between what they are saying to me and what was written about in this Gp note. I'm also curious because I have a very poor memory of the early meetings I had with them when I first went into hospital so I feel like it might be good to fill those gaps.

 

[nounandnoun]

Sorry to hear you had that upsetting experience with your notes LittleMissHatter. It must be really alienating to see your sense of humour being pathologised like that. Thanks for sharing your experience, there is definitely a danger it would be upsetting, you make a good point. I guess it comes down to whether my curiousity is bigger than my sense of selfpreservation!

 

[Topcat]

I would be tempted to ask to see my notes because I like to know everything I can, but I know I would get upset and annoyed if I felt misinterpreted, and would be very conscious of what I was (or wasn't) saying at any appointments after. I don't even like the letters between doctors that I get cc'd in on because it feels like they're talking about me without me being able to say bits they get wrong, or have missed.
I've thought about it, but so far I think it would be a bad thing for me.

(And now you've said about seeing notes on the online booking form, I've immediately thought I should sign up to mine )

 

[nounandnoun]

It is interesting TC, being able to see gp notes online. They don't put everything on there but you do get to see more detailed test results than just positive or negative and see that they do work on your case when you arent there. I found that interesting because i always have this feeling of not existing so seeing a gp's notes being updated about me reminds me i do, haha!

It is very open between me and the docs that we have different vantage points on me so I would be surprised if on reading the notes i didn't feel misinterpreted! from what you say I think i'm a bit like you on this from the sounds of it, I will probably just sit on my hands so to speak till the temptation passes and then just wonder about it every so often

 

[nounandnoun]

And also maybe it is a feeling that forewarned is forearmed, if i can figure out the bits that mean they think they can and will section me, i can alter the words i use or whatever so that is not an option. Being on the ward is so counter productive, i dont want to get trapped there...

 

[Stray]

I think I would want to see what's written, but I would need to feel "up to" it. I hate seeing the dramatic flashing message on the GP screen that says something about me that I think could influence their treatment of me, so dread what the psych notes say.
I think what ICU do for some patients can be helpful, ie, going through notes with a member of staff and talking about what has gone on, although this would require trust with the staff member....

 

[Harper]

Hi noundandnoun,

Hope you are doing okay.

I would not want to see my notes for many reasons. I would not want to be faced with having to challenge something I did not agree with and that person may have left or not be available.

how did you stumble across this information about you? It must feel very confusing.

xx Harper

 

[Littleshoes]

Hi I asked for copies of my mental health notes and have mixed feelings about it. On the one hand I wish I hadn't because it has caused lots of upset and stress for me but I'm also glad because some of it was seriously wrong and I had no idea from my interactions with the cmht that there was a problem.

Things were written about me which were absolutely false as in things I was meant to have done and said. Large sections had been falsified by one person I saw and am now in the process of getting them struck off which saddens me that a trust I had in them was completely broken and they had such contempt for me.

It was a real eye opener in how the cmht work and I am now completely wary of what I say to anyone and I have no trust for anyone I now see.

I also think that it is hard in general to read people's opinions of you and to sometimes see that how you think you have conducted yourself is different to how someone else has seen it and as we all know professionals have more power over a mere mental health patient and that normal ends with the patient being discredited.

If you are happy with the treatment you are getting then be wary I suppose of opening a can of worms maybe if you think they are planning on sectioning you there might not be anything you can say or do differently

 

[nounandnoun]

Thank you Stray and Harper for your replies. xx

Stray, I'd not heard about the ICU procedure you wrote about. It might not work with me, i still get a bit suspicious of the professionals, nice as most of the ones i'm seeing are. I'm also not aware of the flashing gp info, sounds horrible, no wonder it upsets you!

Harper, yeah you make a good point, it is avoidable complications. And in response to your question, I was just going online to book a doctors appointment for the future as you have to book 3 weeks in advance and the website comes up with a list of your 'current problems' and sat at the top was a much more serious dx than i'd been told was my dx. So i clicked on the bit for more info as to when that was added and the notes said i had been discussed in psych liason, that the doc thought i'd be in for a while and they think I may well need sectioning. I'd thought i was doing much better, had gained 'insight' and was on the cusp of being let home. Saw it about a week ago now, a few days after it was posted, so have let it settle a bit but am just really pulled by it to find out more as clearly there has been either manipulative communication or misunderstandings on my part

xx

 

[nounandnoun]

Thank you littleshoes for telling me about your experience. it's really helpful. I'm sorry to hear it caused such problems for you. It must feel horrible, the situation with the doctor, but if the doctor has falsified information you are saving a lot of people damage by working to have them struck off so I hope, difficult as it may be, you are proud of the strength you show in doing that.

I do see what you mean about it always being hard to read peoples opinions about you and your behaviour. I can't remember much about my first few weeks in hospital so i am curious to read an account from that regard and well as in terms of my concerns about sectioning. I think you are probably right, there is probably nothing i can do about it if they deside they want to section me.

So sorry that it has made you loose trust in the cmht, I hope that hasn't made things too difficult for you

 

[TreeFrog95]

I'm not sure if I'd want to see my notes, I always feel as though I've made a fool of myself after I leave therapy.

 

[nounandnoun]

Thanks for your post Treefrog. Therapy is such a rollercoaster isn't it, I'm sure you've not made a fool of yourself [afterall there is no correct way to do therapy] but it is exposing and difficult so maybe your feeling of embarrasment has more to do with your emotionally vulnerable state. I hope the therapy is helping you anyway

 

[TreeFrog95]

Thanks for your post Treefrog. Therapy is such a rollercoaster isn't it, I'm sure you've not made a fool of yourself [afterall there is no correct way to do therapy] but it is exposing and difficult so maybe your feeling of embarrasment has more to do with your emotionally vulnerable state. I hope the therapy is helping you anyway

Hi there,

That's okay and I totally agree with you. I've noticed that lately, I finish attending therapy feeling worse than when I started. I guess you are right, I'm not sure if it's anxiety related but I also feel I've made a fool of myself when I talk to people, not just during therapy. I've edited my previous post because I feel as though it was unnecessary to post what I originally put, here I go again feeling as though I've made a fool of myself! It really brings me down!

 

[ramboghettouk]

i haven't seen my notes for decades, though when i had a psychiatrist she'd send letters to the gp and send me a copy, don't know remember when i was appealing the dwp claim i asked the proffessionals to write the worst things they could think of and not tell me, then the letters were included in the tribunal papers they sent me, i ended up telling the psychiatrist he hadn't said the right things, on the grounds they weren't bad enough


One gp had an open file policy so i asked he arranged for me to come in an hour early and read my notes, he asked what i thought of them, i asked what he thought of them, he said i haven't read them firstly i haven't the time and secondly i don't beleive in having preconceived opinions of my patients

I said see that bit were i was depressed i'd arranged to sell the pills to a dealer, he sellls them to the kids down his road, he said a word to the authoritys seems appropiate, i said he's got a kid of his own, he said all the more reason for a word to the authoritys, i said if these drugs are so wonderful whats wrong with giving them to little kids

His hand was shaking so much when he gave me the injection, it hurt

 

[rosie roo]

Hi. I asked for my notes and got routine blood test results etc. It all looked very amicable and open, until I opened it! You don't get to see what other people have written about you. CAT scans and EEG results were withheld. Basically it was highly censored.

 

[nounandnoun]

Thanks Rambo, sounds like you've had some pretty rough experiences, thanks for sharing Are you not tempted to ask for your notes now its been so long since you've seen them, or do you feel its better not to know?

Thanks rosie roo, so your notes were half missing when you saw them? Thats terrible. I can see the logic in a way behind censoring individuals views but to not let you see the CAT scans etc seems really strange to me. Was it confusing for you? Did they tell you their logic in censoring your information?

xx

 

[Lilac]

I hear the doctors write the most slanderous insulting untruthful things they can think of.
Like one doctor told me well people don't get discharged from section. What an utter nutter she is.