Accessed my medical records, now what?

[HolaLolaViola]

Hi,
I applied to get access to archived psychiatric medical records under the FOI Act.
They are from when I was a teenager up until I was discharged from the local mh clinic in my late twenties.
The reason I requested access is because since I have been discharged (to my gp), nobody seems to be sure of what I diagnosis I was given, or why I was on the meds I was on.
My gp referred me back to the clinic when I relapsed but they told me my files had been “misplaced” and bounced me back to the gp.
Now the gp won’t treat me because she doesn’t know what I was diagnosed with and is worried that it’s beyond her expertise.
The clinic won’t take another referral either so basically nobody will help me.
Anyway, I made the application and it took ages, I never thought anything would turn up but lo and behold, the other day a big bag full of files arrived in the post.
Now I’m really nervous to go through them. I don’t know what kind of notes psychiatrists take but maybe I shouldn’t read them myself?
I could get my partner to read them but I don’t know…there could be some really private information in there.
Has anyone else ever done this? Or have any idea what kind of thing might be in there?
It was a very traumatic time in my life. I’m terrified of opening old wounds. Anyone got any advice on what to do next?

Maybe go through them with a trusted person by your side.

Mental health services are a total disaster at the moment. I get slightly irritated when royalty "champion" mental health but do nothing to create services.

Thank you @Mischance
I think I’m going to just have to bite the bullet and do that, then go back to the gp.

Psychiatric notes do tend to be very detailed

I’d be very wary of opening Pandora’s box if these were notes from your teen years. Unless you are absolutely certain you would be comfortable reading these I’d suggest you get someone else to read the first and pick out the key bits of information you need.

I agree with this. I spent over a year in an NHS psychiatric hospital so I dread to think what is in my notes from that time. I think I’d rather not know.
Be careful you don’t traumatise yourself by going back over that time in your life.
Couldn’t you give the notes to your GP to extract the diagnosis rather than look at them yourself?

Hmm. That’s what I’m afraid of.

Yes, I think you’re right.

@Guttedandblue
I was planning to get them released to my gp, but the FOI officer advised against it in case something happens and they get lost again.
I think I will just have to get my partner to sit down with me and go through them. I probably need to photograph or copy some of the stuff. I am reluctant to hand over the files themselves because I’m afraid I won’t get them back.
The whole problem is that nobody communicated anything properly to me about my treatment. They mainly spoke to my mother in the first few years and now it’s not possible to get any information from her.
So it’s important for me to know basic things like any diagnosis given, mainly.
There is no continuity of care with my gp. You see whoever is free, they change frequently and they don’t seem to keep proper records. They should have some of this information in discharge letters etc but unfortunately they haven’t been helpful at all.

It is a difficult situation OP and doesn’t seem right that your GP has put the onus on you to find your previous diagnoses yourself.
It also seems risky for the original notes to have given to you too in case they get lost or damaged.
Good luck, I hope you find the information you need and it isn’t too upsetting raking over that distressing history x

Protect yourself OP. If you have someone you trust who could get the information out for you I would do that.

If you want to try to find a diagnosis then just look for "Discharge Summaries" this should list the reason for admission / outline of treatment / diagnoses and follow up - it won't go into endless details about everything that was said at the time.

I think it was unfair of the gp to tell me to do this. She told me it would be better if I did it because I have more of a right to access my own information, but the FOI officer said that just wasn’t true.
I’m also annoyed that when I was very unwell after I’d had my daughter, the clinic sat me down for two and a half hours questioning me about my medical history because they had no notes and yet I have managed to track them down quite easily.
I would have preferred not to have them myself because now I will also have to decide what to do with them once I have gone through them. I may have to destroy them because I don’t want my dc or someone reading them some day.
I never had any desire to see my own notes. I used to look away when the doctor was writing them so I couldn’t read them upside down 😅
I spent hours on end regularly for over fifteen years getting treatment including multiple hospital admissions and I was heavily medicated from a very young age. Now it kind of feels like, what was the point of it all.
And going forward, how can I have faith in any doctor who I have to hand my own records over to, knowing they should have all of this information themselves? 😞
Anyway, thanks so much for your replies. It has really helped to get all this off my chest xx

Thank you. I’m glad I came on here and asked now. I’ve been on mn a long time but this is the first time I’ve started a thread. You’ve all been so helpful.

Thank you so much. That’s very useful to know.
To be honest, I am beginning to think it would be better to just book an appointment with my gp and speak to her about it.
I think it’s best if I don’t look at the notes myself at all.

I would suggest you go back to the FOI Officer and ask if there is someone in the Hospital who can go through the records with you - they have an obligation under the law to assist with your understanding of your records.

Without detracting from this advice (and in order to help anyone else reading this thread) - your records won't have been disclosed under FOI but rather under data protection legislation - meaning they are only released to you not to anyone else.

Wishing you well.

@JustAnotherSod

I actually hadn’t thought of this. The ideal thing would be for someone (a psychiatrist) from the clinic to go through it with me and then to discuss treatment going forward.
I will go back to the FOI officer and ask about this and also contact the gp.
Thank you so much. This really has been very helpful.

I really feel for you OP. I'm sure you don't want to go back to that period of time and it could be quite unsettling to read. Could you take the notes with you to the GP and ask them to look?

Thank you.
I really don’t want to go back down that road, no. It was such a horrible time in my life and tbh I have only very sketchy memories of it. I’ve blocked a lot of stuff out and it’s better if it just stays that way.
I will definitely make an appointment with my gp.

Do you have a friend or someone that can do it for you? I really enjoy going thru past medical records (hope that doesn’t sound to weird). I would happily do it if you live in the midlands.

And I would volunteer if you live in the South East. Sometimes the past really does belong in the past. And that’s ok x

Do you have a mh support worker or could access one via a charity to summarise the notes and explain the diagnosis. Normally discharge summaries are shared with gp, even if not from a directly nhs provider.

You need to speak to someone who deals with subject access requests. Personal data cannot be released via FOI it's a totally different process. It you are dealing with an FOI person then unless they deal with subject access requests as well then they won't be able to correctly advise you: it's rare that the same person deals with both processes due to the work load and the different types exemptions. Anything released under FOI is for the public domain which is why personal records would never be released through FOI.

Thanks very much @0psiedasiy @Dryerjanuary and @LIZS
I’m going to go to the GP with it. I think that’s the best thing to do. I might see if I can get an appointment with a different gp. My own doctor is very nice but I’m just not getting anywhere with her. I can’t help thinking that if she is not willing to treat me as she has said, she should have contacted the clinic and insisted that they see me and included something about the missing files. I can’t talk to the clinic directly, it has to be through the gp. So for a start I think I need a different gp who will talk to the clinic on my behalf.

@strawberry2017
It was an FOI officer who arranged for me to be sent the files. I’m in ROI so it may be different here.

It's still 2 very different processes a quick google will tell you the difference so I would ask to ensure they fully understand subject access.