To think people with eupd are badly treated

[Nownow8]

Like people say we enjoy being in hospital and our illness isn’t a real mental health issue etc. we are also often left under the Gide of positive risk taking it’s just awful.

Just listened to the Who Trolled Amber Heard podcast by Alexi Mostrous - the guy who did the Hampstead Hoax podcast which has just been turned into a tv show by channel 4. I feel a lot less negative to her now, it was a really thought provoking listen.

https://www.mind.org.uk/information-support/types-of-mental-health-problems/borderline-personality-disorder-bpd/causes/

Doesn’t say anything here about the cause usually being due to sexual abuse.

“Spiteful, nasty, manipulative”,my dd is non of those things.

The way you keep referring to suffers as “ they”
instead of people is telling.

I have not heard of this but I will give it a listen if it is insightful. I believe Amber's father was extremely abusive when she was little so I am sure this is the underlying cause. But I am not sure I could ever change my feelings towards her as she systematically lied and abused the judicial process to support these lies, ruined Johnny's career and his reputation when she was in fact the abuser.

Oh please. They or people? Semantics.
I've written a thesis on PDs. I really do have some understanding of them.

The figure off the top of my head for previous trauma in later diagnosis is 91.1%

Psychiatrists I spoke to for said thesis often said in their opinion it was close to 100%

It does point to trauma and highlights sexual abuse within the list of traumatic past experiences in this article though. I am not saying this happened to your daughter but you seem to want invalidate this point when it is actually mentioned as a common underlying cause.

If you get a diagnosis of BPD then you are more likely than most people to have had difficult or traumatic experiences growing up, such as:

• Often having felt afraid, upset, unsupported or invalidated
• Family difficulties or instability, such as living with a parent or carer who experienced an addiction
• Sexual, physical or emotional abuse or neglect
• Losing a parent

Difficult childhood experiences may cause you to develop particular coping strategies, or beliefs about yourself and other people. These can become less helpful in time and cause you distress. You might also be struggling with feelings of anger, anxiety and depression.

Semantics to you, respect to others.

Trauma is not nearly always due to sexual abuse.

Couldn't give two hoots about your “thesis”.Anybody can write one and most degrees call for one. 🙄

Exactly there are a shed load of other reasons for trauma. Saying BPD trauma is almost always due to sexual abuse is ridiculous.

Ffs, the trauma which is considered to be the most common type with THIS PARTICULAR PD IS SEXUAL ABUSE.

Can't be arsed. Later.

The truth is that many long term chronic medical conditions are poorly treated, especially those that seem to effect women more often. I don't suffer with a mental illness but with Chronic migraine, treatment and support is very poor and I've been told, never mind it might get better after I go through the menopause!

You make a very good point. I'm not sure exactly how these things are worked out - does the finger of blame point at the last point of contact in services, for example?

It seems pretty clear that a therapist is there for the weekly sessions, and other needs should be met by different parts of the service/other services. Otherwise you're left in an impossible position, and so is the client who cannot access therapy because they're too high risk for a therapist to reasonably manage alone.

Also there is the problem that although individuals working in the service may be awful, there is this whole damaging culture and attitude that feeds into and enables it. The bottom line is that necessary services don't exist - or rarely exist - so there needs to be a way of flagging up the suicides caused by this, and the damaging culture. Not just pinned on random individuals. (Although as part of that individuals should be held responsible for their damaging actions - and I mean really damaging, not just happening to be the last person the deceased spoke to.)

Also very true that services are far too led by the medical model. It strikes me as so odd that your average person can grasp the idea that people go through stuff or have certain upbringings that affect them, but psychiatric services still don't run on that principle. Have you heard of the formulation approach (Johnstone et al) proposed as an alternative to the diagnostic system? Paraphrasing wildly, but the idea was to look at what has happened to the person, how they've understood it, how it's affected them, instead of looking at "symptoms" and labels.

Thank you - and I mean that sincerely - for the work you do.

What a nasty judgemental comment.

An American study showed 81% of people with BPD reported sexual abuse. Maybe actual figure is higher. I have seen eupd without reported sexual abuse but it wasn't at all common. I've never seen it without trauma and I would question diagnosis in those cases. The thing is, we can't really judge each other's trauma as everyone will have different experiences.Certain types of self harm are more inductive sexual abuse

I think the problem with using with language such as spiteful, manipulative, cruel and nasty is partly that they assume intent and I'm not sure that applies. Obviously these words are also loaded with social meaning beyond the definition.

My experience has been being so overwhelmed by emotions that I lose control of my actions, become dissociated from the consequences of them.

I've never been the type of BPD/EUPD to fight, my rage is turned inward....I'm often described as being to 'nice for my own good' but that's driven by fear of abandonment or of causing the hurt I feel to others.

Thank you, @RunningFromThePastHell I really appreciate that.

All my work is formulation led - to me it does not make sense to work in any other way. My colleagues are all the same. Even if you have a diagnosis, it doesnt actually tell you anything about what the client needs or wants from you. They can help signpost to information but that the limit.

In my experience, the finger of blame is very much pointed at the last person treating the client. Certain groups of staff (senior managers, doctors) are better protected. Therapists like me are often considered the lowest of the low by the more traditional (old fashioned, out of touch) doctors and nurses. And most senior managers are doctors or nurses and often have a very uninformed or ignorant view of therapy. And unfortunately that can translate into the support you as a clinician get in an emergency. Our legal people are good, but I dont have confidence that our senior management would really be behind me.

Anyone who is treated poorly should complain to the patient experience team. I have helped several people do this, and think it is vital to give this feedback when you are treated with disrespect.

I think the idea of tracking harm/suicide/hospitalizations is a really good one. But a lot of Trusts would be reluctant I think - there is a weird split between them saying there is not enough money but also saying how great they are.

I love the idea of the NHS and passionately believe in its principles having worked in a country where insurance based health care was the only thing available. But working in NHS MH is very difficult if you are not a psychiatrist or nurse, or a psychologist. It is resistant to new ideas, is very out of date in its expectations, and the people who really lose out are the most vulnerable who really need good care.

Actually @SiousieSoo I was the biggest Johnny Depp fan and feel completely different about him now I have listened. I actually do think he was abusive. It is not that I like Amber Heard, or think she is innocent but it was interesting to hear how much information about her was being put out by bots and the sort of farming operations out of the middle east whose job is to put out misinformation.

Johnny was never ever abusive to his previous partners who all supported him in the case. However, Amber had been arrested for domestic violence against her then wife Tasya van Ree. So I do not believe he was abusive, I think he was pushed to the edge by a violent, volatile and malevolent woman who was horrific to him. I cannot comprehend how you could feel this way - did you listen to the audio recording where she admits hitting him and starting physical fights?

I agree with your comments about the language. A person with EUPD may do or say something due to their mental illness that can feel manipulative to others. It does not mean their intent is that.

I think it is likely to be more complicated than one is a perpetrator and one is a victim. Just because previous relationships are not abusive does not mean future ones cannot be - for one the power dynamic in relationships can be different and there is a big difference between a much older more successful partner and a younger one and people who are similar ages and levels of famous. Drinking more heavily also increases risk of abuse. One of the things the podcast highlighted is how the recordings of them that were shared online cut out a lot of what she said and really changed the meanings of a lot. Its worth a listen.

She had a chance to air the unedited versions at the trial so why did she not correct the record then? I am not buying any of this. He had the top of his finger cut off and was seen with bruises and swelling. All the images she had of him to evidence his abusive nature were of him asleep. She lied about the abuse the police said they saw no evidence when the attended the falt, the people in the building said there was no signs of bruises despite her alleging he had thrown a phone at her face. This is utter nonsense.

@SiousieSoo
@Atethehalloweenchocs
I totally understand how devastating patient suicides must be for clinicians and other staff, and I hear you about the potential for individual staff to get 'thrown under the bus' in complex circumstances. However I think more often than not with these kind of deaths nobody is held accountable precisely because a PD label or formulation allows for a defense of it being all 'just too complex', allowing victim blaming, family blaming, and seriously shady behaviour, attitudes and lack of care to be justified away and without deep scrutiny. Agree there is a desperate lack of resources, time, appropriate services and MH care can be imprecise, murky and difficult. But that doesn't mean we should just throw our hands up and say nothing else could have been done for someone without looking at things carefully.

Please see 'I could justify your death to the coroner':
https://recoveryinthebin.org/2020/03/09/i-could-justify-your-death-to-the-coroner-the-misuse-of-positive-risk-taking-in-mental-health/

I agree to some extent that coroners who do not have training or expertise in mental health should not be able to find conclusions on such (though remind you that they are not allowed to apportion blame, rather it is a fact finding mission, albeit one often compromised by NHS lack of candour).

I have just sat through an inquest into the suicide of an immediate relative (traits of PD apparently and so their suicide attempt and self harm leading up to their death were 'not serious' 'eliciting care' 'nothing to worry about' 'weren't going to do anything' and discharged despite increasingly desparate actions and family told to 'stand back' as they needed to 'take responsibility'). From our perspective there was not even a hint of throwing any NHS staff, medical or therapeutic, under the bus. At the inquest we faced an aggressive and adversarial NHS barrister. All staff were defended to the hilt, and the knife was stuck into my relative and our family. The barrister called into question our firsthand and documented witness evidence, made sarcastic comments to us, and prevented us from asking questions. Staff lied, said they couldn't recall and omitted key details. The coroner's lack of understanding of MH was evident to the extent that he let the NHS barrister tell him to ignore the compelling opinions of three highly eminent independent psychiatric and psychological experts that he had instructed and paid for and who were critical of the care given.

Whilst I recognise how devastating a patient suicide must be for NHS staff, not one iota of such devastation was shared with us during the inquest (despite the responsible clinician having presented on this topic to peers at conferences) - instead we could see staff laughing together between proceedings, and eyeballing us. It was also hard to gain any sense of this devastation in the context of the deeply defensive and aggressive approach - it felt like a game for them to 'win' over us rather than a forum for listening, reflecting and learning. We left feeling even more traumatised than we thought possible.

For staff this is just one patient's death that they can justify, and be backed institutionally and legally on, a backing that could arguably help them deal with moving on, emotionally and professionally. For us, it was our loved one whose traumatic death and the circumstances leading to it have overshadowed all memories of our life together, whose lack of dignified and respectful treatment was justified publically in the most heartless of ways, our decisions, desperation and actions also talked about and judged by staff and lawyers implicitly and insidiously, compounding and giving voice to all the complicated feelings of guilt, shame and self blame that the bereaved by suicide are therapeutically told they mustn't feel. It has caused further harm and we are left scrabbling about to recover once more. Having spoken to and read about other family's experiences this is not uncommon.

@Atethehalloweenchocs you say anyone who is treated poorly should complain and feedback is vital, but our experience was this - our relative was unable to do this themselves so we raised concerns and asked for care plans in the days before the death and were dismissed as 'over sensitive', and were shut down and told to step back and stop worrying, we did so again and additionally raised the disrespect at length as part of the root cause analysis post death and were told they couldn't speak to our concerns in that format, and so we patiently waited for the inquest (4 plus years - partly as a result of the NHS delaying sending witness statements for literal years), our concerns at inquest about poor treatment were once again dismissed, undermined, and belittled in exactly the same way our relative was. There is no guaranteed space for accountability and scrutiny of complaint and feedback within this system - and this is not just related to MH/PD etc, please see what the ombudsman has said about the cover up culture and how bereaved families are treated in the NHS.https://www.theguardian.com/society/2024/mar/17/nhs-ombudsman-rob-behrens-serious-issues-concern

We also need to acknowledge that providing feedback or complaining can potentially impact future care. It can be a dangerous thing for patients to make complaints, and again this 'behaviour' can be assigned to the PD label and be dismissed or even punished through exclusion from servics.

I also agree it would be good to track suicides - however in our case the coroner was convinced by the NHS not to class it a suicide due to lack of evidence on intent (that 'attention seeking' again!), and so it has not been recorded as such. I fear that deaths like these are being strategically 'hidden' so as to avoid further scrutiny.

Not just related to PD, but I would like to share the work of Dr Chloe Beale on exclusions from mental health care; Clinicians learn the art of self-delusion, convincing ourselves we are not letting patients down but, instead, doing the clinically appropriate thing. Well-meant initiatives become misappropriated to justify neglect. Are we trying to protect ourselves against the knowledge that we're failing our patients, or is collusion simply the easiest option?
https://www.cambridge.org/core/journals/bjpsych-bulletin/article/magical-thinking-and-moral-injury-exclusion-culture-in-psychiatry/E41B47079D935213DCC074A03A351712

As she says, all MH professionals should have a strong word with themselves as soon as they start becoming defensive.

@RunningFromThePastHell I hear you and so glad you have found that kindness, empathy, love and compassion that you deserve.

@sorrowed
Thank you for your post, detailing how this stuff works (or doesn't work). Sadly none of it surprises me. I am so sorry you have had to go through that.

Reminds me of so much gaslighting and weird stuff from services. Funny how they accuse PD patients of things that they themselves do in spades. Gaslighting, being manipulative, lying, showing a callous disregard for others' welfare. They seem to be far, far more disordered than their patients. I mean, if you took the behaviour of staff into a different context and asked a psych to diagnose them based on it, it would be PDs galore!

And all the crap about "taking responsibility" and "care seeking". If someone is approaching services for help when their mental health is poor, that IS taking responsibility, it IS doing the right thing. (It's not like they've gone on a crime spree or abused others or whatever other things are often blamed on poor mental health.) What exactly are they supposed to do instead?
The answer, according to services - go away, keep quiet, bottle it up, you're not deserving of our help. This is literally the opposite of what everyone else is told to do, of the mental health education that has filtered through society.

And if someone is displaying behaviours like self-harm in order to "seek care", how desperate must the need for care be? Where is their legitimate alternative to simply ask for the help and receive it? These are very damaged, struggling people, by definition they cannot actually cope with managing things in a normal way - they need to be given clear and appropriate ways of accessing support and treatment, not the gaslighting gatekeeping avoidance and blame they so often encounter. It strikes me that an awful lot of the behaviours criticised by services are actually responses to/triggered by services' behaviour towards the individual.

And no, you can't complain. That absolutely marks your card, and is unlikely to be taken seriously. Because whatever appalling treatment or neglect happens, it's justified as the appropriate way to do things.

@sorrowed

https://www.cambridge.org/core/journals/bjpsych-bulletin/article/magical-thinking-and-moral-injury-exclusion-culture-in-psychiatry/E41B47079D935213DCC074A03A351712

Thanks for the link. That article is spot on.

"One wonders if there is another medical specialty in which there is such dogged devotion to a non-evidence-based practice. We seem to pay heed to neither scientific evidence nor personal testimony, available in abundance"

Thank you for the post @sorrowed and I am sorry for your loss. Thank you for the links you posted,too. I can only speak from my experience and obviously there is a wide range of those - working across two neighbouring trusts I can see massive differences between them and that is a tiny snapshot of what people may experience.

I do agree there is a culture of defensiveness in the NHS although I have not experienced aggressive barristers personally - but I am certainly aware that in any situation where barristers are involved there can be very hostile attitudes. And I have found it exasperating when I have had to complain about physical health care issues in the NHS. But I do think it is important to log these things to build a record, even if you dont get the answer you want. Eventually Trusts have to answer for repeated themes in their complaints.

As for clinicians defensiveness - that is quite right, we should always be open to considering our actions based on feedback. Psychotherapists do regular supervision where the job is to neutrally consider our actions and motivations in therapy. But not all professions so this, or in the same way and there are also staff who have a harsh and judgmental stance. I do think people pursuing the medical model have more of a tendency to this - I have met CMHT staff who 'dont believe' in psychotherapy, which is mindblowing to me.

But it is also the case that we work in a field where, although the majority of our clients are perfectly lovely people, there are also a few vexatious complaints. It can be hard to maintain a posture of openness to feedback when someone is going out of their way to try and 'get you' - I had someone recently complain I was unprofessional because they could hear a dog barking in the background during a phone call I made to them. The dog was in the street outside the office I was using, but the client took it all the way to my professional body. The venom and intensity of this persons desire to make things difficult for me was striking and commented on by the other people who spoke to them. It is hard to maintain a neutral stance when this is happening.

I am not saying clinician needs trumps patient needs - those are always paramount. But being a clinician in the NHS is not necessarily the supportive and helpful experience it should be.

I've been on the receiving end of someone with EUPD and find as much as I try and be sympathetic I struggle to hold space for people with personality disorders. I realise I should be more tolerant but it is very challenging and I have to maintain strict boundaries if someone with a PD enters my life. Unfortunately the nature of PDs is people with them cause a lot of harm to themselves and others and PDs are typically treatment resistant. It's not the person's fault it's the condition.

A diagnosis shouldn't mean a person gets written off by the system though. It happens with physical health too - fibromyalgia especially. It's sad to see the effects of a broken system on people who have, typically, experienced serious abuse from others.

My goodness me. Of COURSE the less than loveable traits are due to their disorder. I didn't say differently, but those traits can be hugely problematic for the sufferer, their loved ones and the professionals that deal with them. And remember, we see them at their worst.

Be offended by that, but I'll validate the feelings and experiences of those who have to deal with EUPD in whichever capacity and not pretend the reality is any different than it so often is. What about people reading this who are silently at the end of their tether because a loved one has this diagnosis and at times must feel like they hate them yet feel guilty for that?

So yes, it can be bloody awful to cope with and yes, it can make you feel serious dislike for them, regardless of who they are to you.