Can you get BPD removed off your medical records?

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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!

I work in psychotherapy treating patients with BPD. Whilst BPD is a lifelong condition and may always be around in times of stress it should be noted that for a diagnosis you need 5 out of the DSM symptoms list. We do a treatment called MBT and sometines patients eventually won't score for it at all.
It would be worth making an appointment to discuss her diagnosis.

Do you still call it borderline in your profession? It’s been EUPD now for some years in psychiatry. Just curious!

This is outrageous. Can you change doctor again?

So true. I have met about 6 women with the diagnosis. Am yet to meet a man with it.

You absolutely can have this removed from her records. Any incorrect information can be removed however past history that was correctly diagnosed cannot be removed. You will need to put it in writing with an explanation as to why you feel it is incorrect, i.e. who diagnosed her if she wasn't seen by a psychiatrist/MH team. A SARS request may help you get more info.
For anyone else saying their surgery won't remove incorrect data, that is not right so please put in a written request and complain if it isn't amended. Adding a note isn't enough.
Sometimes people find their history hard to accept or genuinely don't remember. The surgery will be able to evidence that and explain why that data can't be removed.

Yes, you can have diagnoses removed. I know somebody who got their autism diagnosis removed even though they clearly did have it. I have had something removed from my notes. They originally said only the person that put it on there could remove it but they seemed to be able to do it in the end after enough badgering!

To answer a couple of other things, yes it can affect insurance. Yes, information that could cause significant harm/distress can be withheld from a SARS request.

I haven't read the whole thread but wanted to say that those who say you cannot get incorrect information removed are wrong. The data protection act 2018/GDPr contains a right of erasure and one of the bases for erasure is lack of accuracy.

I work with medical records. Occasionally some GPs get “code happy” which means they will code something as a “problem” even if it is just at a suspected diagnosis stage or something that they are not qualified to diagnose (eg BPD/EUPD, or even a PTSD diagnosis, should only be made by after full assessment and report by a mental health professional such as a psychiatrist or clinical psychologist not by a GP).

I cannot speak for all GP practices, but at the one I work for, your mum could contact the surgery manager and request a review of her records, specifically querying whether BPD/EUPD has been incorrectly coded as a diagnosis.

In my role I would then go through the records with a fine tooth comb, try and track down any missing records/reports/clinical letters and then present the evidence to our Managing Partner GP who would then make a decision on whether the code should be removed or perhaps replaced with a more appropriate code.
Obviously a diagnosis cannot be removed/replaced just because a patient doesn’t like it on their record, however if it can be proven in the records to have been coded in error, then it is definitely possible to review and remove or replace.

I do work for an exceptionally diligent GP practice though, and sadly not many even employ someone purely dedicated to work with the records as mine does. You would not believe some of the errors I have come across on medical records in my time!!

@LadyPiglet Very true. But I've tried and the GP can't determine "lack of accuracy" with mental health because they're so wary around it. I could have BPD but just say I want it removed because I feel better now. They refer you back to the psychiatrist who diagnosed you to get it removed, but the ones I seen previously no longer work for the NHS. And when I see a new one they just add another diagnosis onto the list without taking any off. It's a nightmare system.

This is something I do. Typically a defensible diagnosis with associated appointments and care plan/medication stays. Where you have a coding error eg we have just marked in error a lot of patients coded as eligible for a vaccine ten years ago, you can effectively remove it. Recently one case of patient >40 with eating disorder diagnosis when 17 was also marked in error (effectively removed) because there were no follow up appointments, further referrals or medication. So a rogue code can be removed. If it was being treated, or appointments, then no. You can clarify though

Personally, I'm not so bothered by BPD still existing in my past medical notes, whether or not I now believe it to have been a correct diagnosis. But, for example, a couple of years ago I had to attend A and E as my magnesium levels had become very depleted due to chemotherapy (oncology told me to go). Recently I saw my notes and "BPD" was scrawled on the admission page. I hadn't been to A and E for anything in at least the 10 years preceeding this, nor needed any contact with services re mental health. It was so upsetting to still see it popping up and made me wonder where else it's just jotted down casually or discussed verbally between HCPs.

Maybe there's a reason but the actual result seems to be that I am treated as less than human, as a liar even though I don't lie etc. But it could be that people who treat me that way are like that with everyone anyway. I just can't be sure. I just really hope I am lucky with my health for a good while and can avoid the whole thing.

Can you not see how awful this is? Someone diagnosed without being told, or helped, and then told that raising this is proof that they have this condition?
it’s also absolute %**^% that most people wouldn’t challenge a diagnosis. Most people who know how badly they are treated because of this label would fight tooth and nail to get rid of it, or indeed any other set statement that was not true and caused harm. Imagine having something on your criminal record that you didn’t know about and restricted your ability to get jobs, insurance or travel.
It is shameful on the medical profession that this keeps happening.

it sounds as though the OP’s mum experienced a traumatic incident, had a response to that, and for some reason the opinion on that day of that doctor was BPD. It’s an opinion, with no formal evidence base, snd it’s likely impacted her all her life.
how can you possibly defend it like this?

a few people have said about mistakes...there IS a process to be followed, see this link https://transform.england.nhs.uk/information-governance/guidance/amending-patient-and-service-user-records/ so please dont think there is "nothing" that can be done. For all those people who find it hard to believe that patients are not told about diagnoses, i started work in the NHS in the 90's, patients were often not told they had CANCER!! usually older or disabled people where the Dr's told their family first who then asked the Dr not to tell the actual relative "so they weren't distressed"....though how you can be in hospital feeling v unwell,getting worse and not feel distressed i dont know. I had a couple of occasions where the patient knew something was very wrong and asked me directly if they had cancer and i said yes as i was fairly newly qualified and believed in honesty.

As a consultant psychiatrist, I would challenge a diagnosis for myself that I did not agree with.

It is completely incumbent on medical professionals to get this right. And if it is wrong, it should be amended later. And if appropriate an apology is warranted too.

I believe strongly in transparency and accountability in the profession.

@zebrazoop sadly not all
my colleagues agree, but there are very many of us who do, and also some in psychiatry. Reading Dr Jessica Taylor and Dr James Davies may be supportive for you. I wish you well.

Currently waiting to be assigned a new psychiatrist. Told it could take many weeks.

@BookmarkHerehopefully you wouldn’t see someone else arguing about their diagnosis as proof of their diagnosis, as some of the other professionals here would.

My experience of supporting others to try and get an BPD diagnosis removed is that they will not do it.
I was a medical professional supporting a young person who has been diagnosed quite young. Later they were diagnosed with ADHD and once treated for that the 'BPD' traits disappeared.
But the most psychiatry would considered was adding 'historic' to the BPD diagnosis.
In my experience they also frequently diagnosed BPD but didnt tell the patient which is awful.
I remember listening to Hollie Berrigan from 'The wrong kind of mad' who did manage to successfully get the diagnosis removed. It was then rediagnosed (without anyone telling her) the next time she sought support from MH services.
Given the appaling stigma around the diagnosis its shocking.

I also disagree with the framing of personality disorder for the traumatised individuals who do fit the diagnostic criteria but thats a separate issue.

What really gets me is people like my dc getting diagnosis due to not getting the treatment they should have had in the first place- for ADHD, serious trauma etc. They’re left spiral, then when they hit rock bottom and only then do they get anything by which time they for the bill of BPD.

Its appalling. Is anybody winking the NHS at least recognising or investigating this?

So what are you supposed to do if you think you've been wrongly diagnosed with something like BPD, which they're actively hiding from you, without looking like you've actually got said condition??

I’ve just read through all the replies. Thank you all for sharing.
To the professionals commenting - thank you - I appreciate your input and hearing it from the “other side”. It’s getting me thinking.

To the people sharing their stories/thoughts, you’ve given me a lot to think about and different points of view, I’m feeling a bit more like I need to go and stew it over rather than being knee-jerk.

bottom line I feel a bit gutted than people are being told their personality is disordered, this is upsetting. The language feels very wrong.

We work using CBT and are not commissioned to work with patients with a range of presentations, EUPD being one of them.

I am sorry you are going through this OP. I think you are right about the language - it changes the lens that people are viewed through. Disordered somehow conjures broken, damaged, and unfixable connotations. If instead you take the view that something horrible happened to your mum and her response is understandable, and then try to help her come to terms with it, it softens, reduces the blame, and changes the approach of the professional.
I am really sorry if my anger has made things harder. It must be so difficult to come to terms with this for you as well as your mum. Sending lots of support, and I hope you find some space to process this, and some peace. With all good wishes.

Yes we still call it BPD, it's interchangeable really though as it gets reversed to as EUPD at times! I'm in the NHS in Glasgow