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Can you get BPD removed off your medical records?

223 replies

UnsureColeslaw · 17/10/2025 17:53

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!

OP posts:
XenoBitch · 17/10/2025 23:14

TheCorrsDidDreamsBetter · 17/10/2025 22:50

Examples that have emerged and must stop include:

  1. behavioural contracts or similar: making patients sign contracts about how they will behave (for example with threat of removing access to services if they do not comply)
  2. threat of withholding or withdrawing services as a deterrent, or more broadly to elicit desired behaviour
  3. anticipatory care plans which instruct mental health staff or other agencies not to see a patient during psychiatric or medical emergencies
  4. criminal sanctions (for example, community protection orders, behaviour orders, bail conditions, arrests, charges, cautions, prosecutions or imprisonment) applied in response to people presenting to health services, or deemed to be doing so, regularly.

This is from the NHS link surrounding SIM for BPD/EUPD.

The request to cease SIM was only done in 2023.

I'm fucking disgusted. I can't put it any other way. I feel sick to my stomach and could cry that this is how people who have already undergone a life altering crisis have and are being treated even if the SIM programme has been stopped. Mental health services should be available and accessible for the people that need the mental health services. There's a difference between a lack of resource and intentionally withholding resources in order to modify behaviour - I have experience of this with ABA therapy. I can't imagine how soul crushing this must be and how anybody could possibly think this would make mental health outcomes better and not worse.

All 4 of those happened to me, but some were before I was under SIM too.

TheCorrsDidDreamsBetter · 17/10/2025 23:17

orbital12 · 17/10/2025 22:56

It has become increasingly common for people labelled with BPD to be told it's their decision if they want to die as they "have capacity". My (probably very oversimplified, possibly incorrect) understanding of capacity law is that it's supposed be used to treat people refusing treatment who are deemed to not have capacity, rather than used to deny treatment to people who are asking for help to stay alive. Please feel free to correct me, anyone who has more knowledge of this!

I wouldn't say I'm more knowledgeable than you about it, but I do have a slightly different experience of the mental capacity act. Definitely outing as I've posted about this under a different username, but to be fair I didn't actually mean to name change for this thread, but I support a young adult with a working diagnosis of autism and 15 years suffering from anorexia.

The mental capacity act, to my understanding, probably the same as yours, is that it is there to treat people when there's a suspicion that they don't understand, retain, weigh-up, and communicate information about their decisions that could harm them or other people without intervention. It is there for the purpose of treating someone, and not withholding that treatment.

It is woefully underutilised in some circumstances, like with my YP with anorexia who says conflicting things like they don't want to die, they're terrified of dying, but can't bring themselves to eat, eating feels like they're punishing themselves, they don't deserve happiness, they don't want to gain weight even though gaining weight is the only way to ensure that they stay alive. We've had 3 successful "sections" where once sectioned, nothing was enforced, we had a visit from a dietician with a flimsy name like Rainbow who dropped off an information sheet about nutritional values of foods, no access to a specialist bed in an ED service and stuck on a gastro ward, doctors who don't understand waterloading before weigh ins, or hiding things in pockets, and accept a couple of grams of "increased weight" to be acceptable to remove the section and recommend a voluntary stay where the YP has just self discharged with no post-discharge mental health support which has lead to the loathing of the people around them and then an increase in restrictive behaviours including eating. We've had clinical staff saying things that they shouldn't say to someone with an ED, like "you look beautiful/good/healthy today" which reinforces that their restricted eating is working, while under sections. A complete lack of trauma informed care.

In other cases, it just isn't utilised at all, when it absolutely should be, such as somebody being in crisis, due to a lack of understanding. This has happened with our YP with anorexia, where we've pleaded and begged for a mental capacity assessment, because it's just not logical when you're collapsing from a few steps and your bones feel like they're on fire and your heart is at risk of stopping from low phosphate to not take remedial action, but we're just told they're an adult with capacity and have to respect these are the choices they're making.

In other cases, it's used and misused. This has happened with us with our YP too, because they're not actively trying to commit suicide (is there a nicer way to say this because I feel like the word commit is still stigmatising? killing themselves also seems a bit like it's an active choice and not significant neurological distress), they're just heading to a slightly more accellerated death than your average Joe because they're choosing to not eat. We've been denied assessments and denied healthcare because of this even though we had to source our own wheelchair because of the genuine fear that even 50 steps in a day would put too much pressure on their organs.

The crux of it is they don't seem to assess capacity based on individual decisions, but feel that if a person has capacity to make a sensible decision about one thing then they have capacity to make decisions about every other thing even if that includes risks to their own health.

I'm a huge advocate for autonomy, but I just can not abide the misuse of the mental capacity act at all where if someone genuinely needs intervention rather than autonomy they're not given it, and if someone autonomously chooses to engage with services, they're refused it on the basis of behaviour modification.

orbital12 · 17/10/2025 23:19

XenoBitch · 17/10/2025 23:11

I can't remember her name, but there was a case of a lady with BPD who made repeated suicide attempts, and in the end she convinced the A&E staff to give her pain killers and comfort and let her die... and they did. She drank anti-freeze.
They said she had capacity.
I have also been told it is my choice. Given a leaflet and sent home.

Just so awful - could weep for all the neglected, distressed people. Such a crushing loneliness to not be treated as worth helping in your darkest moment.

XenoBitch · 17/10/2025 23:22

orbital12 · 17/10/2025 23:19

Just so awful - could weep for all the neglected, distressed people. Such a crushing loneliness to not be treated as worth helping in your darkest moment.

Absolutely. It is a cliché, but suicide is a permanent solution to a temporary problem.
So sad that people are let down, or worse told that they are rational and to get on with it... by HCPs.

Idontknownowwhat · 17/10/2025 23:26

UnsureColeslaw · 17/10/2025 18:11

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).

You know, most people with EUPD/ BPD are actually that way because of trauma?

I get that there's stigma, I think that all you can really do is see whoever at her surgery deals with mental health, we had a nurse who dealt with all the mental health appointments, and she put in my notes that she couldn't see any sign of EUPD despite the diagnosis.

I recently got my medical records- didn't know I was diagnosed with bipolar. I also had no idea that my medical records are full of reports that I am an adult victim of domestic abuse. No idea why. But it does make sense of a few incidents now...for example when my mirror fell down and hit me on the head and they were convinced that I'd been attacked at home. Or my GP a few months ago being really concerned about a bruise on my face.

but I also accept that turning up at the surgery, and asking for any changes to my records will just make people more suspicious

XenoBitch · 17/10/2025 23:29

Idontknownowwhat · 17/10/2025 23:26

You know, most people with EUPD/ BPD are actually that way because of trauma?

I get that there's stigma, I think that all you can really do is see whoever at her surgery deals with mental health, we had a nurse who dealt with all the mental health appointments, and she put in my notes that she couldn't see any sign of EUPD despite the diagnosis.

I recently got my medical records- didn't know I was diagnosed with bipolar. I also had no idea that my medical records are full of reports that I am an adult victim of domestic abuse. No idea why. But it does make sense of a few incidents now...for example when my mirror fell down and hit me on the head and they were convinced that I'd been attacked at home. Or my GP a few months ago being really concerned about a bruise on my face.

but I also accept that turning up at the surgery, and asking for any changes to my records will just make people more suspicious

That is shocking considering that bipolar is classed as a Severe Mental Illness.
No one gets diagnosed with that and left to it. It is treated with meds, otherwise you will be a mess.

Kendodd · 17/10/2025 23:31

XenoBitch · 17/10/2025 23:11

I can't remember her name, but there was a case of a lady with BPD who made repeated suicide attempts, and in the end she convinced the A&E staff to give her pain killers and comfort and let her die... and they did. She drank anti-freeze.
They said she had capacity.
I have also been told it is my choice. Given a leaflet and sent home.

I remember a similar case with a significant difference though. Young women showed up at A&E after taking a lethal dose of something to commit suicide. She also had a printed off advance directive saying she wanted no life saving treatment and would sue if she received any, she just didn't want to die alone. She was just allowed to die. I seemed so sad.

Theunamedcat · 17/10/2025 23:31

XenoBitch · 17/10/2025 23:29

That is shocking considering that bipolar is classed as a Severe Mental Illness.
No one gets diagnosed with that and left to it. It is treated with meds, otherwise you will be a mess.

Apparently they do get diagnosed and left to it

OnGoldenPond · 17/10/2025 23:32

Fabulously · 17/10/2025 19:03

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.

Edited

Yes but what if the entry re cancer diagnosis was put on the patient’s records by accident when it should have been entered on another patient’s records, ie a clerical error? Is it right that there is no way to correct this?

This has happened to me several times as there is another woman registered with my GP with the same first and last name and she is just a couple of years older than me. Our notes are constantly being mixed up with medication I have never taken being entered against my notes, blood test results etc for tests I never had. The GP denies it ever happened and will not correct the notes. There seems to be nothing I can do.

Portoagain · 17/10/2025 23:33

Not really the main point, but surely this is an issue for things like insurance and employment checks where mental health is relevant? It’s totally unacceptable that people can have diagnoses they are unaware of and therefore unable to disclose.

Fabulously · 17/10/2025 23:35

OnGoldenPond · 17/10/2025 23:32

Yes but what if the entry re cancer diagnosis was put on the patient’s records by accident when it should have been entered on another patient’s records, ie a clerical error? Is it right that there is no way to correct this?

This has happened to me several times as there is another woman registered with my GP with the same first and last name and she is just a couple of years older than me. Our notes are constantly being mixed up with medication I have never taken being entered against my notes, blood test results etc for tests I never had. The GP denies it ever happened and will not correct the notes. There seems to be nothing I can do.

No, that’s completely different. I’d put in a formal complaint if someone else’s data is in your records.

XenoBitch · 17/10/2025 23:37

Portoagain · 17/10/2025 23:33

Not really the main point, but surely this is an issue for things like insurance and employment checks where mental health is relevant? It’s totally unacceptable that people can have diagnoses they are unaware of and therefore unable to disclose.

Edited

Yep, and if you need to claim on your insurance and get told you can't as they did some digging and found you didn't declare something you had no idea about.

Stringybeans · 17/10/2025 23:37

Out of interest, can the surgery hide certain notes from someone they suspect has mental health issues, such as health anxiety?

XenoBitch · 17/10/2025 23:38

Stringybeans · 17/10/2025 23:37

Out of interest, can the surgery hide certain notes from someone they suspect has mental health issues, such as health anxiety?

Yes, they can redact details if they think it would cause you distress.

Fabulously · 17/10/2025 23:41

XenoBitch · 17/10/2025 23:38

Yes, they can redact details if they think it would cause you distress.

Is this the case even if you place a subject access request?

Stringybeans · 17/10/2025 23:42

Thanks @XenoBitch I suspected as much. I've requested the 'full' coded notes before online and had a phone call from a flustered receptionist who claimed there's no difference. 🤔

XenoBitch · 17/10/2025 23:44

Fabulously · 17/10/2025 23:41

Is this the case even if you place a subject access request?

I do not know the answer to that, sorry.

Ladyzfactor · 17/10/2025 23:47

UnsureColeslaw · 17/10/2025 18:21

@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.

Is there a possibility that she was informed but in the state she was in blocked out the information?

XenoBitch · 17/10/2025 23:48

Ladyzfactor · 17/10/2025 23:47

Is there a possibility that she was informed but in the state she was in blocked out the information?

No. I was told I had it in my 30s, but it was in my notes in my 20s and I was never told back then.

ninjahamster · 17/10/2025 23:50

Appl3yiz3 · 17/10/2025 22:33

Do you think suicide attempts aren’t treated/ handled as well if it’s somebody with BPD?

The whole attitude towards the individual changes.
I was sectioned several times for psychosis. I am a danger to myself and others. Medication makes me much better. I was well supported and getting better.
New psychiatrist diagnosed me with EUPD. No medication. I am suicidal. I hear voices and see angels that tell me to do awful things. I get followed everywhere I go. I’m constantly looking for bad people.
MH services aren’t interested now as I “just have a personality disorder”. There’s a belief that if you have a PD then you have deregulated emotions. So if you call up for support, they try to ignore the calls as they believe it fosters a dependence.
I have no history of trauma. No fear of abandonment. Good relationships with those around me. No mood swings.
My husband begged them to medicate me again and they refused. They will not visit me at home as they say I am too dangerous but leave me in a house with my family when I am a danger.

I cannot do therapy as they say I am too unstable.

XenoBitch · 17/10/2025 23:54

ninjahamster · 17/10/2025 23:50

The whole attitude towards the individual changes.
I was sectioned several times for psychosis. I am a danger to myself and others. Medication makes me much better. I was well supported and getting better.
New psychiatrist diagnosed me with EUPD. No medication. I am suicidal. I hear voices and see angels that tell me to do awful things. I get followed everywhere I go. I’m constantly looking for bad people.
MH services aren’t interested now as I “just have a personality disorder”. There’s a belief that if you have a PD then you have deregulated emotions. So if you call up for support, they try to ignore the calls as they believe it fosters a dependence.
I have no history of trauma. No fear of abandonment. Good relationships with those around me. No mood swings.
My husband begged them to medicate me again and they refused. They will not visit me at home as they say I am too dangerous but leave me in a house with my family when I am a danger.

I cannot do therapy as they say I am too unstable.

I can believe this.
I had a friend who was sectioned with bipolar in her 50s. Been diagnosed with it for decades. The ward psychiatrist decided she had BPD instead. Stopped all her meds and sent her home.

ninjahamster · 17/10/2025 23:58

XenoBitch · 17/10/2025 23:54

I can believe this.
I had a friend who was sectioned with bipolar in her 50s. Been diagnosed with it for decades. The ward psychiatrist decided she had BPD instead. Stopped all her meds and sent her home.

It’s horrendous. I feel like I’m being gaslighted. The person they describe sounds nothing like me. I went to A and E and was told to get back on the antipsychotics asap. Psychiatrist took me straight back off them again. I spoke to the Crisis Team last night who said that it all sounded wrong, that it sounded like I needed medication again.
Such a mess.

IDontHateRainbows · 18/10/2025 00:04

Hotflushesandchilblains · 17/10/2025 18:51

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.

Its not a lifelong condition. With treatment you can be undiagnosed. I was told I no longer met the criteria for it after treatment. Its probably still on my medical records but I don't care.

Yoonimum · 18/10/2025 00:13

UnsureColeslaw · 17/10/2025 18:11

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).

Read 'Sexy but Psycho' by Jessica Taylor. This happens a lot - a normal trauma response is pathologised to the detriment of many women. And complaining about it is regarded as evidence of the personality disorder. It's a great injustice.

YourRedLurker · 18/10/2025 00:45

Anyone can make a compliant, there's rarely a time that it will be raised to the clinician to review though. You just seen the reception entries when you're skimming the notes in consultations down the line, or the patient raises it during the next consultation.

Theres a significant correlation between the type of person who expects a Dr to spend an amount of time to make a adjustment to medical records and a diagnosis of BPD. The huge majority of people wouldn't do that.

If it's something major like a relative going to A&E under their name that's different. But I'm aware the reception team field a huge number of complaints/requests "I don't like that the Dr wrote that I looked comfortable and made eye contact during the consultation" I don't like that the Dr quoted what I actually said I don't want that bit in my notes for others to see, the Dr didn't write down every word I said they've just summarised it so I want them to add to it... Ultimately it just comes up as a frustration because of how much it occurs with certain patients, but all reception can really do is put the request in the notes which only reiterates the thing they didn't want to be in there is in there twice now.

The cancer one is really unusual. Normally to code a diagnosis you have to be fairly certain which for cancer would normally mean diagnostic tests. At the end of a consultation it's normal to write down your working diagnosis in which it would be reasonable to write cancer being the concern in order to highlight your thinking/plan if the patient returns and someone else sees them (before they've had their referral/further tests for example). Normally once coded you that's on there for good, but you could demote from major to minor problem if you felt that was correct.

The records are set up to help a clinician, ultimately they might not remember or have met you before, at best there's 15mins total time allocated to get everything done for a single patient coming in - including review notes, getting them in the room + introduction, have the conversation/consultation, take observations/examination, document and prescribe if you're doing so. That patient will be 1 of 25-30 face to face appointments alongside maybe another 10-20 or so contacts/referrals then theres all the results coming in to report on plus more. Very little time to spend looking a previous so it's very targeted.

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