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!

I get that. But we are all made up of personality traits, some good sone bad. To get a diagnosis of a specific disorder, and there's many, you just need enough enduring traits. I felt like that working with patients for BPD years and working with the stigma attached to BPD in particular. However the MBT programme we do (Mentalisation based treatment Google Anthony Bateman) you need the diagnosis to get accepted and I've seen it really really helping people over the years

Oh. Maybe it’s different up in Scotland. I am in London.

My maternity notes have a line from a midwife that says “patient requested more codeine as she’s run out and feels She still needs more. I have concerns of addiction so have refused and told her to buy over the counter pain relief”

It still upsets me. Context - I was in maternity 6 days post emergency C-section, getting up to care for twins in special care baby unit. Dh was home with toddler so I was doing more than if was home, lifting and feeding babies/changing nappies etc and I found out 2 days later I had an infection which is why I was still in pain. It was a Sunday night and I couldn’t drive due to C-section and she withheld pain relief then wrote bs about addiction. I’ve never had any issues with addiction. It was her last week and I was told I couldn’t have the line removed because she’d left the trust and no one but her could go back on it. 14 years later I’m still angry so I completely understand the op’s mum feeling upset about it.

The gp also put asthma on the wrong twin’s record but then 2 years later the other one had an asthma attack so I guess I’ll just leave that diagnosis as it happens to now be true for her.

It's necessary to record why a request have been refused in case a complaint is made, having concerns that more codeine could lead to addiction is valid and is not in any way a slight against you.

It wasn’t valid, totally normal for women to need more codiene post major surgery. 6 days is not a trigger for concern - confirmed by medical professionals - and she should have checked for infection (which she didn’t do). She ended up getting a disciplinary note sent to her new employer due to her conduct. She did not respond appropriately.

That is unfortunately true. Complaints from someone with EUPD/BPD are nearly always brushed off or ignored due to the diagnosis and there is often trust/ccg guidelines stating that complaints should be 'reframed as allegations related to the personality disorder'
It is truly horrific especially when you consider that EUPD is essentially women with complex trauma from CSA, neglect, abuse DV etc.

It's hard to comprehend if you haven't experienced it.

Edited : apologies I did not link the right poster

Please read what Dr Jessica Taylor has to say about personality disorders.

I'm hugely triggered by this thread, but I'll share my story in solidarity.

I was diagnosed with BPD when I was an a violently abusive 4 year relationship - it was his idea and he accompanied me to all appointments.

Once I was free of the relationship and my mental health improved, a few years later I was diagnosed with autism - which makes perfect sense given my brother and two children are also autistic.

I complained to the mental health team and asked for BPD to be removed as it was diagnosed through cohesion re: my abusive ex - they fobbed me off with "your symptoms have improved, that's all".

It follows me around to this day - appearing in my children's records.

I feel gaslit and violated.

Exactly @PuppyKeep It's very unfair to punish someone with a label they can never shake and may not even know about. I had very temporary problems directly caused by a specific event - all fine now and medication free but the stigma remains.

I could only respond to the information you had given. I assumed this was post the 6 days in hospital as you said you couldn't drive and not many people are looking to drive anywhere whist still a hospital inpatient, and you had not mentioned anything about her disciplinary...
I am sorry that she did not respond in the appropriate way and get your infection treated, but what she put in your notes still is not a slight on you or even a comment that your request was not a normal one so try not to let it get to you. It does not imply that you were or ever have been a drug addict.

@Blarghism As I understood it she was only looking to drive somewhere because the nurse told her to go and buy her own painkillers otc somewhere.

Now that make a lot more sense! That is terrible. She didn't even offer her a paracetamol? Awful. I still don't think her comment looks bad towards @TeenLifeMum though, but I know how she feels. There are many things I would like to see added to my medical notes that will never happen as they are always worried they will be sued. Everyone should request a copy of their medical notes, it's eye opening but will probably destroy any trust you have in doctors so maybe not!

@Blarghism Yes I got a copy of my notes and it did destroy my trust - but tbh I'd heard so many horror stories from people by then I was kind of prepared. Mistakes seems to happen so frequently, it's not this rare occurance, and yet can affect our treatment for the rest of our lives.

I couldn’t drive anywhere as I was 6 days post op and still in hospital with babies in scbu.

I was told I would supply my own paracetamol. Had I been told that I would have brought them in my maternity bag. I had them at home. She told me I was lucky they were letting me stay… twins were on 2 hourly feeds so not sure how I would have made it home and back when it took at least an hour to feed them both.
everyone else was lovely, that midwife was mean and accused me of being addicted to prescription drugs, which upset me as a sleep deprived new mum with babies who had been resuscitated. I think that’s a pretty outrageous accusation and they should think before writing in notes.

That does sound awful, no wonder my attempts to reassure you did not succeed! As I said, I was going on the information you had given and what you said she wrote did not seem like an accusation of drug addiction to me, obviously she wrote a lot more that you did not mention.
I will attempt to reassure you one final time, although his differs from the rest. They absolutely CAN get this removed from your notes if it has been stated as fact, at the very least it can be clarified as an opinion and a counter note added stating the facts of the situation. But if she did write what you said she wrote then I wouldn't worry too much.

Hmm, I imagine this might be awkward if eg someone needs their medical records for legal purposes. It would be difficult for eg a disabled claimant of a legal case to provide evidence if not everything gets disclosed to them.

I was diagnosed with BPD in the early 00s when I was 19. I'm now in my 40s and haven't had any mental health support since my late 20s, and though I would say my moods are more up and down than most people's I mask it a lot and have no problems holding down a job, maintaining friendships etc. I've been in a relationship since I was 18. I don't think I would fit the criteria anymore, and given that both my children have ASD, and I was told by one psychiatrist that I had ASD traits, that seems like a more likely explanation. But I don't think the NHS would bother to look into it for me, as I'm functioning now (in a way I definitely wasn't 20 years ago).

I feel like the label BPD is still so stigmatised and just horrible to have. If I was autistic I wouldn't mind telling people (and I do tell people I've been told I have traits but never had a full assessment - not sure they even did those for adults 15-20 years ago) , but I absolutely don't want anyone to know about the BPD label.

To be told your actual personality is disordered, fucked up... It makes you feel less than human.

Yep, I don't tell anyone either. If you Google BPD, most sites basically tell you to run far and fast from anyone with it.

I keep coming back to this thread and it is making me feel so sad and angry! (Which is strange because despite having an EUPD diagnosis, my emotions are normally very static!).
It just seems that this is attributed to people - particularly women - with very little thought. That many are autistic/ believe they may be autistic is hugely significant.
Somebody upthread mentioned 5 characteristics, can I ask what they are? I asked for my previous psych who did the diagnosis to please explain the characteristics and how they apply to me but never got a response.
Wish there was something that could be done.

The follow up notes do contradict it. If I wanted more babies I’d have challenged more - because I was scared they’d deny me future pain relief. But after a third miscarriage we drew a firm line on that.

@ninjahamster not me but its 5 or more of the below DSM-5 diagnostic criteria for BPD^
A pervasive pattern of instability of interpersonal relationships, self-image and affects, and marked impulsivity beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) or the following:

1. Frantic efforts to avoid real or imagined abandonment (Note: Do not include suicidal or self-mutilating behaviour covered in Criterion 5)
2. A pattern of unstable and intense interpersonal relationships characterised by alternating
3. between extremes of idealisation and devaluation
4. Identity disturbance: markedly and persistently unstable self-image or sense of self
5. Impulsivity in at least two areas that are potentially self-damaging (e.g. spending, sex, substance abuse, reckless driving, binge eating) (Note: Do not include suicidal or self-mutilating behaviour covered in Criterion 5)
6. Recurrent suicidal behaviour, gestures, or threats, or self-mutilating behaviour
7. Affective instability due to a marked reactivity of mood (e.g. intense episodic dysphoria, irritability or anxiety usually lasting a few hours and only rarely more than a few days)
8. Chronic feelings of emptiness
9. Inappropriate, intense anger or difficulty controlling anger (e.g. frequent displays of temper,
10. constant anger, recurrent physical fights)
11. Transient, stress-related paranoid ideation or severe dissociative symptoms ...the people i have met within the mental health system have all been really quite challenging so it's hard to imagine someone who has held down a job,secure relationship,friendships, raised kids well etc, meeting this criteria.

Thank you, I can only relate to 1 of those! Yet I have a diagnosis…

yes I think they ideally need to view/assess people and come to that diagnosis over a very long period; giving it to a young woman seems wrong when there could be possible alternative diagnoses .It can take an awful lot of time to unpick a history of trauma or maladaptive coping responses especially if you throw possible ND into the mix.