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!

As the poster involved said, it wasn’t removed but a note was suggested. Presumably a corrective note to clarify they did not have cancer?

This totally matches up with my experience of how the NHS deals with records, they don’t like editing them and deleting things. They are happier to follow up with a corrective note to keep the paper trail intact.

So you have "cancer" mentioned as a discounted differential diagnosis, that is completely different to having an incorrectly logged diagnosis.

As I said before you posted: As the poster involved said, it wasn’t removed but a note was suggested. Presumably a corrective note to clarify they did not have cancer?

I hope so. I got a recent diagnosis after several years of being told I had psychosis. I’ve been taken off antipsychotics and everything has gone to shit. Saw the MH team today and it seems there is disagreement within the team. So I very much hope it can be removed if it’s disproved.
I am autistic.

I think she can, but it is not an easy process. When I worked in mental health the majority of my caseload were women with a diagnosis of EUPD. Some agreed with it, others strongly did not. I always advocated and supported them if they wanted it removed from their records by the psychiatrist. I still believe that an EUPD diagnosis can mean a person is treated differently which I think it’s outrageous.

For one of my service users they did get the diagnosis removed by the psychiatrist and changed to cPTSD which they felt aligned more with the difficulties they experienced.

I’ve had two things removed from my records- both wrongly added- varicose veins and a brain aneurysm! The brain aneurysm I just spotted on the screen at an unrelated appointment and asked about- the receptionist had put it on the wrong notes. Scary though?!

That’s actually not the case. If an entry is incorrect it can be removed. If there is any truth in it, no it can’t.

Don't listen to some of these responses.

How awful for your mum. I doubt she has bloody BPD !!! She'd sure as hell be having difficulties if she was. It's not a disorder that magically disappears.

Unfortunately once you've got a stain like that on your record, you're unlikely to get it off. They'll just put a "note" on the system. And it'll mean sweet FA. Yes she will have been judged. And yes she'll continue to be, so be very mindful of this. We like to say the right things to make us all feel better. But MH diagnosis like this (even more so when inaccurate) are very damning to have plastered on your medical records.

I'd advise her to contact the surgery and ask her her SCR to be made not visible outside of the surgery. So if she attends hospital for example, they can't access her GP records.

I've always wondered this. I have been diagnosed with fibromyalgia based on a ten minute phone call with my consultant and I've always wondered if I could challenge it. If I complain about pain and fatigue I just get "It's your fibromyalgia".

This is absolutely terrible !
are GPs really qualified to diagnose something like this ? Wouldn’t a psychiatrist have to diagnose ?

There is no medication or even specific treatment for it. If she was diagnosed then I don't think they can take it off. Just because she wasn't told or doesn't feel like she has symptoms now.

It’s a very misogynistic diagnosis - often used about women who have experienced something traumatic. I doubt it will exist in 20 years time.

It is not unusual for someone to get this diagnosis and not be told. I was told "officially" 7 years after it had been added to my records. I also know of a man this happened to, so it is not always women.
Many people get labelled with BPD and not offered any treatment at all (the gold standard is DBT). It can seem like something you are labelled with because they don't know what else to do.
Sadly, it does follow you around. I have caught site of the front page of my records on a PC screen, and it had "PATIENT ALERT - PERSONALITY DISORDER" on it (and also one about an allergy that I never had).
I attended A&E after breaking my foot at home, and was accused by the triage nurse of faking it for attention. She said I walked in fine (I did not). I walked out with a boot and crutches. Now how she treated me makes sense.

The only people I know who have had it removed fought hard and had it replaced... usually with autism, although you can still have both conditions anyway.

You can be re-assessed and no longer meet the criteria for diagnosis... this does happen. BPD can be treated. But as a historic diagnosis, it would still remain on record somewhere.

I don't think it will exist.

It's a "catch all" stigmatising diagnosis for a range of conditions in women :
-autism
-Adhd
-Trauma
-addiction
-Mixed anxiety/depression/stress

But I think trauma is the main one. It's disgusting really.

If she wasn't actually assessed and diagnosed by a psychiatrist you can ask for it to be removed as they don't have the evidence to back up the diagnosis.

My sympathies to your DM, OP. I went through cancer treatment a few years ago. I recently got my notes and the dreaded 'BPD' crops up in a couple of different very random places.

Many years ago I was prescribed an anti-depressant that had a very bad effect on me - it made me impulsive - I was self harming when I had never done so before. I think once you self-harm you automatically get slapped with that label even though there can be many causes. Once I was off all anti-depressants the self-harm disappeared again without any effort but turns out the label remains years later.

I did sort of wonder as throughout the cancer treatment some nurses and doctors were pretty horrible while being kind to people around me, no matter how polite and compliant I was. I was treated like I couldn't really be experiencing pain even while going through processes known to be painful. Obviously this treatment would also be very not OK for anyone who was still dealing with mental health issues but just an example of how after years of having zero contact with anyone medical re mental illness the BPD label can be used as an excuse to mistreat you.

This was not all staff by any means, the majority were nice enough or just neutral - but enough that I really dread needing healthcare in the future, or if I ever need to be in a care home one day.

Sorry I'm probably making you feel worse! I really hope you can get it removed. I'd like to as well so will be following this thread.

HRFT just wanted to say I was misdiagnosed with 3 disorders before they figured out what was wrong with me, one of which was BPD. They will not remove any of them from my record, despite each diagnoses letter stating it should override the old diagnosis. So on my medical record it looks like I have
Bipolar disorder
And psychosis
And BPD
And autism.
Despite asking my GP numerous times to remove them all they won't, they told me to contact the psychiatrist who diagnosed me, but they were all different doctors and all no longer work for the NHS.
Its a nightmare. And yes I get treated very differently because of it.

My 2 d have been given the diagnosis AFTER diagnoses for autism, adhd and CPTSD after severe trauma! It’s nuts. It’s not BPD it’s autism, adhd and CPTSD!

One was diagnosed with emerging EUPD. She was being treated for Anorexia at the time. CMHT then just switched it to EUPD without any discussion. Same team have just said she wouldn’t meet the criteria now a year later! Thanks!

I think you might be getting hung up on the word disorder.

I am autistic, that is a neurodevelopmental disorder, that means that my behaviours can be attributed to my a-typical in-utero brain development.

EUPD/BPD can be triggered by a traumatic event, it literally causes physical changes to your brain, neural pathways and how you retain information and act upon information around you. That information can be sensory information, verbal information or non-verbal information. The changes it makes to your brain mean that your reactions to this information, when extreme, can be attributed to this dis-ordered out of utero development within the brain, and is characterised by the the criteria of the diagnosis.

It doesn't mean your mum is wrong, or broken, or should be treated differently to other patients who need to receive medical care, it does however remain a highly relevant part of her medical information.

17 years is no short amount of time. Even if she feels things have settled down, it means her likelihood of having related episodes is increased.

It's not mean at all. It is purposeful diagnostic language.

It is a bit different when you are told it's your actual personality, the essence of who you are, that's disordered though.

There was no truth to it at all a dr wrongly diagnosed me with cancer my 2nd third and fourth opinion all agreed it was something else. Yet it remains on my notes when I asked for it to be removed they said they would then didn't and when I asked again they said they couldn't remove it but would add a note to it. Actually a significant amount of my medical records are wrong but the other things aren't as significant so I let it go.

The point was that she was diagnosed and not even told. And it has since popped up on her records.
BPD is hastily diagnosed in women that are seen as difficult. When I was assessed for DBT, I had to fill in a very lengthy questionnaire and have an assessment with a clinical psychotherapist.
Some people get the BPD label after just presenting with self harm, and a 10 min chat. Then they are just sent back to their GP with no help whatsoever.

Exactly this! EUPD, if it is the right diagnosis (and it is right and can be helpful for some people) needs to be explained and people offered DBT. I have lost count of the times I have ended up working with people to understand why they have been given this diagnosis, and how many times it was clear it was in error.

When I trained in the 90s we were told to avoid treating Borderline Personality Disorder as it was too hard. It was a horrible message and one I had to work hard to get the training and experience to overcome.

As for the OPs mother - EUPD should not be given if there is current trauma and should be based on experiences over years, not one discrete period. It very much sounds like it was not the right diagnosis at the time and that deserves at least a note to update it.

As for c-PTSD, I fear this will be the next stigma diagnosis.

Women were commonly diagnosed with it, particularly following trauma or missed divergence. I would absolute challenge it

BPD is supposed to be a differential diagnosis (that is, after ruling out other conditions like neurodiversity, PTSD, mood disorders) however - it has often been used to label 'difficult' female patients. There's quite a few studies and news articles about it's misuse, especially in the late 90s through to the early 2010s.

The OP's mum may not be able to get the reference removed - but she can ask for a reassessment/ second opinion. And have her medical records updated to reflect that.