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!

Your right it shouldn't matter, Its a record of things that have happened to you that are medically relevant so it'll still be in your list of previously diagnosed medical conditions. If they're being good with their record keeping should have been demoted to minor diagnosis/problem though.

It's kinda like being diagnosed with a stomach ulcer - it can be completely treated leaving no trace. But you wouldnt remove it from the medical history because even though it's not a problem anymore it could be relevant to future contacts and decisions.

This is surely worrying for all of us. If you don't know you have a diagnosis, you can't list it on any insurance forms, so couldn't that lead to not things like critical cover/medical bills (if you're holidaying in a non-EU country) not being paid out?

I'm sure I was once asked to list past illnesses for a job application (a long time ago), and it stated that if I omitted any information I could be fired-maybe this could be the case for this person, too.

It's very sad if we can't trust our notes. Mine say I once left an appointment because I'd been kept waiting ten minutes-it was actually well over an hour, and I'd got to pick my kid up, so I politely said I'd explained when booking I'd need to leave by 3.15. OP, this is obviously nothing like as serious, but I mention it because it shows things we might not expect can be on our files-I only saw it by sheer chance when I saw the locum on my next appointment and he had the info on his screen.

My thoughts exactly. I have a bipolar family member so I was quite bemused when I saw my records.
I have been on antidepressants for years, and I was like, whilst they're part of treatment for lots of people with bipolar, there's also a risk of them causing a manic episode, and I was shocked that the GP was willing to take responsibility of medicating me, but also not having anyone else overseeing how I was doing.
Ah well. I think I came to terms with not all diagnosis' being right and maybe that's one of them.
Infact, maybe all my issues are more likely autism but that's another discussion.

This happened to me, too. I am prone to mixed episodes and once got misdiagnosed in a crisis caused by antidepressants. It has since been replaced (by a different psychiatrist, so they absolutely can do this) with bipolar disorder, EUPD never comes up on that shortlist of things I have, written on my notes, and now I get the right treatment and less (not none) stigma from medical professionals seeing it on my notes.

🤣 no they did think it was me who had cancer initially

I'm so sorry thats awful💐

It can be removed from the list of problems that is present when the GP makes referrals to other services if it’s inaccurate. It won’t be that all reports saying this are redacted or footnoted (although you can actually request this if you have another psychiatric assessment which recommends this a misdiagnosis). I have a lot of patients diagnosed as autistic later in life who have acquired an EUPD diagnosis previously (incorrectly) and they have asked for their medical records to be updated accordingly. I’ve been asked to explicitly say that autism ‘replaces’ their previous diagnosis and it was incorrect in supporting letters

I was diagnosed by a doctor with ADHD and he chucked a 'BPD traits' comment in there too. Only he didn't tell me. He actually told me OCD traits. He then didn't type up my diagnosis notes for over a year, which is when BPD ended up in there. I queried this and he insisted it was right so I left it as I knew there wasn't much else I could do. He also put the wrong medication in there and it's now on my records that I have been prescribed a medication that I never have been! It's actually one that I would like to try for my ADHD but am waiting for it on the NHS (I now have an NHS diagnosis too). The medication I actually tried that I felt lowered my mood after about a month so came off it, is not on there! I'm so cross as when it comes to titration on the NHS, I know generally they try the one that made me feel awful first and I don't want it. I've tried to block the BPD stuff out of my head as it really worries me that it's there and I know it absolutely was not discussed with me. I don't feel it has made any difference to
my care so far but who knows. Maybe it has.

Your mum might think you will judge her. She will have been assessed by a psychiatrist to have that diagnosis. A GP can’t make a psychiatric diagnosis except for something like anxiety. She will have been told about the diagnosis too. She’s probably lying to you because she feels ashamed. She can’t remove her medical past.

Wow so because she has BPD she’s probably lying. 🤔

She probably lied as she feels a bit ashamed to tell her dd that she saw a psychiatrist. You need a psychiatrist for mental illnesses like BPD. She will also have been told about her diagnosis. You’re twisting my words.

So was it likely my son was left in hospital without crisis or MH support for so long after his overdoses because of his BPD diagnosis ? And is it probably why Crisis said just ring CMHT( who are useless ) when he got home after 2 overdoses in such a short period of time? He desperately needs to see a psychiatrist. Is there no right to anything if you’ve got BPD?

You’re allocating thoughts you have no idea are true. Mistakes happen and you are not necessarily told as seen by this thread. Neither of my dc were told officially they had it. It just appeared on their records as a diagnosis after they were told they had emerging symptoms- one by a team who hadn’t diagnosed the emerging symptoms in the first place. My dd had diagnoses of anorexia, autism, adhd and CPSD so the emerging symptoms were highly suspect anyway.

Why should anyone be ashamed about seeing a psychiatrist.

I’m not your doctor so I can’t do anything about your son. Maybe complain?

Yes. If someone places a SAR, then a clinician has to go through all the notes, every page and can redact anything that might be harmful. As long as they justify why.

When I have to do it, in practice I only tend to redact third party info. Eg info a family member doesn’t want shared with the patient. The bar for redacting is high and I tend to think that it is better to share a patient’s info with them than to hide it which can make it worse. It is their information after all. Sometime I cringe at what has been written by others, but I believe in transparency and accountability.

Sorry wasn’t directing that to you but the thread as a whole.

He’s an adult so I can do very little and he’s not well enough to help himself.

In my hospital Trust the official line is that we can’t remove patient records but can add notes etc.

I send my patients their clinic letters on the day. If they get back to me with any changes, then I can contact IT via the portal and get the old letter removed and upload the new letter. V Labour-intensive but I do it. But this seems to be very personal to each clinician.

I am a consultant psychiatrist and regularly get patients asking for a diagnosis of EUPD or cPTSD. These days many patients come telling me what diagnosis they think they have. Because there is so much info out there being shared.

People sometimes get upset and angry if I speak to them and say that they don’t seem to fulfil criteria for these diagnoses. I feel that the stigma maybe is less than when I trained 30y ago, if people are actively seeking a diagnosis? That has to be a good thing. The negativity in the past was awful and precluded patients getting decent care elsewhere in the health system.

Why would people ask for a diagnosis, are there any benefits( clutching at straws)?

Also of all the symptoms are accounted for in a string of other diagnoses why do you need a BPD diagnosis on top? Why can’t it just be all the other diagnoses?

Yes, there is benefit. There is self-understanding which is therapeutic in itself. But also therapy that can help. There is a long wait but we refer on to services here. Shorter wait for group than individual.

Sadly waiting lists have now gone up to 6 months (group) to 4 years (individual) here.

I work closely with primary care and our GPs are brilliant with people with MH diagnoses. Very kind, knowledgable and understanding.

What happens if you have something like this on your medical record but don’t know about it and then at some point you have to make an insurance claim for something like travel insurance, critical illness etc. you wouldn’t have declared this conditon because you didn’t know it was there on your record! So could that then affect your claim? if it’s there as a diagnosis, I think you should be told - if it’s there as a query being investigated, it should surely be marked as such on the record?

You can have a few diagnoses at the same
time. You can say have autism and a personality disorder. But it’s really important to get each diagnosis correct. And of course if all symptoms are accounted for by an ASD diagnosis then you would not diagnose EUPD. But if you have both, then it’s important to get that right too.

Wrong diagnosis is common of course and diagnoses change over time as more info is known. Without diagnostic tests, psychiatry cannot be an exact science. What is important however is to be flexible, responsive and actually listen to patients and their loved ones.

Ok that’s good to know. Thankyou.

Thank you for this. I agree with everything you’ve said snf it’s reassuring to hear it from a professional. Apparently I have ‘bpd’ on my notes to, I ignore it . It’s s flawed misogynistic diagnosis.