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?

I already have the records. I don’t really need anything more from them.

OP I'd advise you scanning or copying them all so you have a copy of them stored electronically, even if you don't keep it forever.

Your local pals service (this is in England, not sure if it has a different name in other areas) could maybe advise you? They may have someone who can help you make sense of your notes or diagnosis or be able to signpost you to who you can ask.

I think someone neutral (not your partner or a friend) would be best to go through them and scan for discharge summaries as recommended. Is there a charity you can approach for this as a one off support?

If you had multiple admissions over a long period Be sure to have them check all the opening and closing notes as it’s not unheard of for diagnoses to be updated over time.

FWIW I saw my mums medical summary recently and it mentions personally disorders and I’m sure that dates back to the 70’s. Recent summaries don’t always mention that and focus on the current presentation.

OP, I was in a similar situation. My records were in paper form and were from a private hospital that went bankrupt. I just couldn't read them. I shredded them all without looking. Sometimes I regret doing that. But they're gone now - I'll never know what they said!

@YeezysBeans I will definitely do scans and copies, thanks.

@Thighdentitycrisis
I will do, thank you

The confusion over the diagnosis started after my consultant retired. Originally I was told I had unipolar disorder, but it seemed to get worse with treatment. I was then admitted to hospital for observation, and became even more unwell, after that they changed tack and started me on mood stabilisers and different types of meds usually for patients with bipolar and I started to recover.
At the time, nobody mentioned bipolar to me at all. My understanding at the time was that those meds were prescribed as an alternative treatment because I had treatment resistant depression.
After my consultant retired years later, my new doctor kept mentioning things to do with mania and I eventually asked Why are you asking me about that? I don’t have bipolar. He just looked at me and said Yes you do, I’m reading off your file. I became very upset because no one had ever said that to me before that. I assumed they had made a mistake. I kept asking them since when was I diagnosed with bipolar, why didn’t anyone tell me? But they were just looking through all my notes getting really flustered and I never got an answer.
I didn’t trust them after that because I thought they don’t even know what they are treating me for. I discharged myself. Unfortunately after that I stopped taking my meds and got really unwell for a long time. Only when I started to get better again it suddenly occurred to me, what if it wasn’t a mistake? What if I had been diagnosed as bipolar all along but nobody told me? So this is what I need to know specifically.

I think you should make another appointment with your GP and hand them over face to face.

It is a hard decision isn’t it. I think you’re probably better off regretting not knowing than regretting knowing though. I think I’ll bear that in mind for myself too.

I agree. Your GP needs to take responsibility for checking the notes for your diagnosis. It is really unfair and unprofessional for them to leave you to do that.

I’d say you’re right. I’m going to ring and make an appointment on Monday.

I just remembered recently that a few years ago one of the GPs read off the discharge letter from the clinic and it had “bipolar” on it. At the time I remember saying That’s incorrect, I’m not bipolar and he recommended I made a complaint and requested it be corrected. So the GP surgery already has some information on record (or used to at least). I need to ask them about that too.

Please remember the there is no rush, and you don't need to do anything rash, that your'll later regret.

I would read through your files, when you are ready, and then decide what to do next.

When I read through mine I found innumerable mistakes and factually incorrect info. This appeared to bother no one apart from me, and everyone's unwillingness to accept it I found hard.

Good luck.

@Oblomov25

I won’t. I got dp to put the files away, up somewhere high so I wouldn’t be tempted to start going through them without giving myself time to think it through.
This thread has really helped me to think clearly about it.
That is worth keeping in mind that there may be multiple errors or inconsistencies in it. Anything I do find out I will keep that in mind, thank you.

Good idea @HolaLolaViola - don't do anything rash like I did! It seems like you do need answers from your file and unlike mine (which were last remaining copy) yours do need to be accurate! Will keep you in my thoughts and hope you find a good path to getting what you need with minimal impact.

I'm sorry you're going through this. As other people have said, it would be worth having another individual to look through them. I've three files of documents after nearly 30 years of illness. I know there is stuff written in there which wouldn't benefit me as some of it isn't true. I've spoken recently about the error rate in my notes, the people who wrote them are only human but I know some of it was written by a consultant who didn't like me and made stuff up about me.

But I"ve decided I've only got so much energy and can't fight everything.

Get your other person to summarise the notes and then give it to your GP so your treatment can move forward rather than stalling.

I hope you get it sorted.

@ASBnamechange thank you 😊

@Offonagadwaddick I know what you mean about not having the energy to fight them about everything.
The last psychiatrist I spoke to about this was a student who went in and out to confer with the consultant in the next room. It felt like a game of Chinese whispers 🤦‍♀️

I think that’s a good idea to get someone to summarise it first. I think I’ll ask my dp to have a look through and take out anything that looks relevant, then take that to the gp. The files are huge and a lot of it will be handwritten.
The gp won’t want to go through all of it and it will take ages.
It’s really only information around the diagnosis that I need so that I can get my meds sorted out.
Thank you for the advice.

I'd imagine a GP won't have the time to go through them if there really are a lot of notes l.

I'd look for someone completely neutral, PALS perhaps or even pay a lawyer or someone similar to go through and identify diagnosis and medication and write a summary report for you, that way you never have to see them again.

There is no PALS or equivalent where I’m from. I wouldn’t be able to pay a solicitor either unfortunately.

I forgot to add, I will have to deal with the clinic again anyway. It’s the only option to get treatment unless I went private which I can’t.