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!

If made in error ibe known people to use but it sounds like your mum did meet the criteria at the time so no she won't be able to

This is just awful. I had no idea until I read this thread. I believe people have to declare all the health conditions they've had to get travel insurance but how can they do that if they're not told? And how expensive having to pay to cover conditions you don't have! I had understood that data protection rights include the right to correct errors on you.

I've got a couple of mistakes on my medical records, and unfortunately, like previous, it was an erroneous "mental health" diagnosis. Literally a coding error. Which was admitted, but still cannot be removed - only a note added.

When I found out : everything suddenly made sense. The previous hostile encounters. The mentions of "anxiety" when going there with chest pain (yes reader, I ended up with sepsis!) . The icy conversations, the brusque bedside manner. It all made sense finally! Some may say I'm being paranoid, but trust me : I know that I'm not. Some of the bias is conscious, some unconscious. But it's very much there. "Pysch out bias/error" (Google it )

That's why if I ever have a wobble with my MH (for real 🙄) I'd never go to an NHS GP. Having a mental health diagnosis on your records is extremely damning (you will try that much harder to prove your physical symptoms) and face stigma and under investigation. Arguably even worse when you're slapped with an unremovable label that you don't even have !!!!

When I see advice on here when people are low in mood or drinking a little too much or anxious and read "just have a chat with your GP. They'll understand and not judge" I cringe and think "I'd think very carefully before doing that...." But if you say it you'll be jumped on.

But what is the point in diagnosing someone with something, not telling them, and not offering any support or treatment?

I think unfortunately posts like this prove the points being made. Dr can't possibly have got it wrong: you've clearly got BPD and in denial. I think some people still live in this naive world where mistakes don't get made in medical records. I think the default is not to believe someone with a mental health dispute anyway.

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

Bloody hell that's reassuring. I hope someone didn't get your cancer all clear results and celebrate with a fry up and a packet of Malborough.

No regular people cant complain either! My dd has it on her record that I was suspected of having munchousan syndrome by proxy and "bore watching" because I was adamant she had a UTI and insisted they test her he finally agreed to get me out of his office but wrote that travesty on her record spoiler alert she was actually seriously ill and because he didn't dip test he just sent it off for testing the Dr's thought he was just confirming a diagnosis and had already given antibiotics so they set the results aside a few days later I worked up the courage to call in and apologise saying im sorry she is still really ill are you sure she doesn't have a UTI that they realised no antibiotics had been given she suffered because of him I cried when they told me they couldn't take it off her revord his comments made me feel horrible even though I was right and I feel judged every time I go to the Dr's even now second guessing myself every time

GPs absolutely remove mental health diagnoses from your medical record BUT only when it suits them to do so.

Ask me how I know this...

Actually, yes you can.

you need to ask your GP for a referral to the CHMT (Community Mental Health Team) where she can be properly assessed.

EUPD was a very common diagnosis for anyone who was actively suicidal or in mental health crisis 15-20 years ago and a ‘working diagnosis’ could be given by nurses in mental health teams so she may not even have been seen by a psychiatrist.

Definitely worth challenging if she wants to.

I work in a mental health service which cannot treat people with a diagnosis of EUPD but I recently had treatment agreed for the reasons above.

Good luck!

The short answer to your question is: yes.

I’m a healthcare professional and I have seen mental health conditions like this rear their head years or even decades later. So it is helpful to keep historic diagnoses on medical records. Surely the records also state that your mum’s mental health is well controlled and there haven’t been any concerns for a long time?

Why and which services can’t treat people with EUPD?

@UnsureColeslaw i would suggest your mum asks for access to her past medical records, consultant letters etc to try and gain what clarity she can.it would be unusual for someone with BPD/ EUPD to only present once to mental health services in their lifetimes. I've been on both sides of the mental health system (as an ex HCP and as a patient myself with a parent who's has serious mental health difficulties and been on the point of needing sectioning) and accurate diagnoses and recording of medical info can at times be life saving or life harming if it impacts the treatment given.

@TheCorrsDidDreamsBetter That's good your mother didn't have bad experiences because of the diagnosis and it's good to hear that side of things, that it's not something inevitable. I will say that when I was given this diagnosis years ago (and assumed it to be correct at the time) it didn't have any bad effect on my personal or professional life, it was only in healthcare settings that I felt stigmatised (and still do).

I've been doing a lot of reading tonight, especially around SIM that @XenoBitch mentioned, but absolutely it is extremely common for people with BPD/EUPD to be denied care: See this link here from the NHS own website about it.

It seems like there's still so much outdated understanding in the mental health circles and teams and even just having a working diagnosis and not an actual clinical diagnosis with or without the historic participation of SIM also increases the risk of care being withheld as you're seen as a nuisance caller.

It usually is only in healthcare that judgement comes. Nobody else really has access to that level of personal information about you. Not all of course, but I think HCPs can be the absolute worst for judging patients who have a mental health diagnosis.

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.

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!

Why do they do that when those with BPD are more likely to attempt suicide and be successful?

This is a bit pertinent for me and starting to make sense. My son has had 2 big ODs is 24 hours a couple of days ago,one whilst in hospital for the first OD which was due to him struggling to access a psych appointment. Nobody from crisis came the entire time he was in hospital alone, they said they come eventually. After 68 hours he left without being seen by anybody from MH let alone crisis. He said staff were awful. He has autism, ADHD and CPTSD too following a serious crime.

What the hell do I do to help him? He’s supposed to be having DBT soon but is spiralling whilst waiting. The psych service he’s under is nothing to do with CMHT which he’s under too and just don’t want to know.

This thread has been an eye opener. I just wanted to thank you all for sharing your experiences and views. I’ve got lots to think about.
Sad to think how much broken trust has occurred thanks to these processes.

@TheCorrsDidDreamsBetter

Thanks for reading into it. It is grim. I saw a cop mentor once a week with my CPN. She would list and berate me for all the calls to do with me that went to 999. Most were the crisis team calling for a welfare check. She even admitted that they were all "legitimate". But calls I made about other people were also counted. I had several friends with MH issues, and me calling out of concern for them was all counted.
Things like posting on social media were also counted. There was a whole list of things that they deemed attention seeking, including being out at night. I used to walk the streets at night to calm myself down.
I tried to leave the scheme. Said it was treating me like a criminal. I was told that if I left it, then I would also be discharged from CMHT. I was in the middle of DBT at the time. So I felt like i had no choice but to stick with it.
I was one of 11 people in our NHS trust under the scheme. Imagine being sat down and told you are in the top 10 of "nuisance" and "attention seeking" callers to 999 in your county.
In the end, my cop mentor had a breakdown and left and she was never replaced, hence it all ended.
Thank fuck the whole thing is gone now.

I'm so sorry about your son @Appl3yiz3 Do you know if there's any advocacy service you could speak to?

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 suggested that but he said they’re only for people who have been sectioned.

What do they do?