Can you get BPD removed off your medical records?

[UnsureColeslaw]

My mum was diagnosed with BPD/EUPD and she wasn’t even told. She had a period of crisis on/off for about a year 17 years ago but has been well since then apart from depression.

She went to the Dr recently (unrelated) and when he turned his screen she saw it was listed. She asked what it was as she’s never been told. The Dr stuttered a bit and said it was probably automated bc she presented with symptoms 17 years ago. She has never been told this and was upset. Now wonders if she has been treated differently as she’s done a bit of googling and really wants it removing, seeing all the stigma.

This is no offence to anyone with this condition but she has never been told, no medication, no treatment. Total shock. Can she request they strike it off and will they do this if she asks? I’ve googled and it says talk to your psychiatrist but she doesn’t have one!

It sounds like relevant medical history if she was having serious episodes for a year.

No, of course it can’t be removed. It’s totally relevant to her record.

No they won't remove it. Even incorrect information they won't remove they may add a note to it but it will be there forever i have cancer on mine I've never had cancer

I doubt it I can’t even get someone else’s medical history taken off mine (my sister gave my details at a and e on multiple occasions many years ago)

Sorry but no chance. Sometimes “they” make diagnoses but we don’t find out for ages, if at all.
I’m sure you’ll read many cases on here, so here’s mine: I was mid-30s before i knew I’d had anorexia as a teen. Only found out when I read my printed medical records prior to an op. It was a shock. No way it can be removed, the qualified clinician decided that’s what I had.
Somehow your DM is going to have to come to terms with this, unfortunately.

She could write to the surgery and request it be moved to minor problem/off the front page and they may well have no problem with doing so. But the records where someone in the past diagnosed her with this problem will always be there, as will the more recent request to have it moved. Records are more for onwards care/cant be deleted really for multiple reasons. Ultimately the records whilst about a patient aren’t for the patient.

If it’s something that’s very much in the past then i really wouldn’t expect it to cause any difficulty in her future care. A mental health diagnosis wouldn’t be added to a record lightly and ultimately whether she agrees with it or not it was a diagnosis that was made by a medical professional in the past.

I’m not a Dr but do work in a surgery, one problem with making a complaint about her records/asking for dx of BPD/EUPD to be removed is that complaining about what’s been written in medical notes is just about the most classic association with BPD/EUPD that you can get. So much so that the clinicians often click to hide consultation notes from the patient on the app to save all the back and forth with reception and the inevitable second appointment where they come in and tell you how they didn’t like how x was written/how it sounds to them. Complaining may just promote the EUPD/BPD to a more recent entry in notes/more prevalent.

Complain/comment if she/you think she is receiving poor care but otherwise I’m not sure if complaining about a hypothetical maybe is beneficial.

I hope so!!!My daughter has been told she wouldn’t reach the criteria anymore and many autistic women are falsely diagnosed with it.

She experienced a traumatic event 17 years ago so although her response to it was heavy going she has been fine since. She feels (and I agree) that it’s a bit…mean (? Sorry I don’t know what word to say) that she’s now called “disordered personality” because she went through a trauma. I feel sad for her.

I didn’t realise you can’t even have the wrong information removed (like cancer).

So people with EUPD /BPD aren’t allowed to complain about their notes but everybody else can.🤔It’s perfectly reasonable to complain about a wrong diagnosis. And surely it’s not up to doctors what and who can see their notes that they have legal right to see!

Ok thank you @YourRedLurkerthats useful information to know.

I feel a bit mad about this now!

Was she under the care of a psychiatrist at the time? It’s quite a serious diagnosis and I’m not sure it’s one a GP could make. Of course she may have been presenting with features of the condition but that’s different.

Together I would write asking about the provenance of the diagnosis and suggest it is removed from the front page. There is evidence that this is a stigmatising condition and not one many people would wish to have recorded without evidence (followed by treatment and support).

I would ask for evidence of the assessment and diagnosis because it’s something she’s unaware of happening and would like to see that information. It’s possible she was assessed and diagnosed and if so, it will always form part of her medical history.

@MatildaTheCat I’m not totally sure to be honest. Probably yes. I didn’t live at home but I know my dad struggled with how distressed she was and was ringing the GP and any helplines so perhaps it did escalate to psychiatry. I will have to ask her. But then I need to tread carefully as I don’t want to upset her by dredging this all back up.

She was never told though - is that normal? what’s the point of a diagnosis if you don’t end up knowing and then having the treatment. It’s a bit baffling to me.

She was never told though - is that normal? what’s the point of a diagnosis if you don’t end up knowing and then having the treatment.

Perhaps she was told and didn’t take it on board and perhaps she was medicated or had alternative treatment at the time.

Yes that’s true, she may not remember. That’s fair as she may have been told while distressed and my dad would not pick up on that.

I wonder why eupd is for life though? It seems linked to this one event - nothing before or after.

thank you everyone, I need to do some thinking and googling and try and think about the best way to proceed. she wants to complain etc but I’m a bit mindful of what has been said upthread.

This boils my piss. Whoever designed this diagnosis did it brilliantly. It is a superb way of controlling women. We will give you a diagnosis that you can never change, and if you complain, it will prove we were right. It’s diagnosis given more often to women than men, and based on a set of observed behaviours, not on any actual medical or genetic markers, and it causes the medical profession to believe everything you say. How can any one possibly have a disordered personality? Who gets to decide?
It is shameful that this exists.
OP, have a look at Drop the Disorder, and if you want to understand how the DSM was written, I recommend the book “Cracked” by James Davies.
this makes me so angry I made a new user name.
I am a mental health professional.
I hope your mum gets some peace from this

It absolutely can be. I had it removed.
BPD/EUPD is far too frequently misdiagnosed, especially in women. It’s a lazy diagnosis. I argued this several times with my previous and current psychiatrist. I fought to have it removed because I don’t fit the criteria at all. The dx was made when was extremely unwell and had to be sectioned. I was extremely unwell because they were giving me anti depressants for eupd which were making me manic and suicidal (people with bipolar react badly to antidepressants!)

I wonder why eupd is for life though? It seems linked to this one event - nothing before or after.

EUPD is a lifelong condition, not a response to trauma.

IME it is often given to women when clinicians are frustrated or dont know what to do. Far too many women are given this diagnosis as a result of misogyny.

I think the only thing she could do is ask for an assessment to consider what treatment she might need. Any psychiatrist or psychologist worth their salt would be able to come to a better diagnosis.

And yes, while no shade to people who have EUPD, it is a stigmatizing diagnosis and it does affect how people are treated.

I agree. A lot of women with PND, autism and trauma were diagnosed with this. I have a relative with this diagnosis. I'm sure she is undiagnosed autistic.

Really? If this is true, then it’s insane.

I have a niece with a BPD dx who I am convinced is autistic. One full sibling and a half-sibling have autism diagnoses.

It’s not insane.

One medical professional thought that in their medical opinion, the presentation of that poster’s illness was cancer. It was later found to not be cancer. The medical record still needs to contain what led up to the cancer tests to determine the diagnosis, it doesn’t make sense for there to be a black hole of information where cancer isn’t mentioned at all. That would be more confusing for medical professionals unfamiliar with the poster’s history to treat them. By looking at the record with removed entries - they would have to guess why certain tests were or were not carried out, what has been trialled and suggested before, what the patient’s response was to those tests, what hasn’t been determined or explored before. God forbid they may even start wondering why cancer wasn’t looked into before and start the process themselves!

However with that information in the record, they can clearly see cancer was suspected and disproved and therefore give little weight to any suggestion of cancer.

We’re planning to get it removed from my DD’s records and have been told it’s common to grow out of it( ie wrong diagnosis)and you can have it removed.

This really depends on how it’s recorded in the notes. If it’s “free hand” and a GP has written something along the lines of “need to rule out cancer, refer accordingly “ then that absolutely needs to stay in the notes for all the reasons you state. However, if it’s coded as a diagnosis then this is clearly an error and needs to be removed from the records.

If it’s something that’s very much in the past then i really wouldn’t expect it to cause any difficulty in her future care

I feel that's naive. I have ptsd on mine. I no longer feel comfortable seeking medical advice as everything is viewed through that lens. Got a steam burn whilst an exhausted new mum... obviously self harm. HV comes around with a student and sits on my sofa telling her all about the events which led to that diagnosis in front of me, my 3 year old and my baby. My mental health was fine at that point. Take my eldest to the GP with an infection and get a lecture about the fact that I haven't been for a smear test and I really should deal with my "issues". Absolutely terrified dc1 who was 8 at the time. The last 3 times I went anywhere near our practice (I wasn't even the patient), I was reminded I could be rereferred back to psychiatry if I needed help. I don't think it's malicious and I believe my GP when she says I gave her nightmares last time I had mental health issues but it's most definitely causing me issues.