When “Personality Disorder” literally means a Disordered Personality

The other week I was sat with a a range of people with different clinical and lived experiences of ‘personality disorder’.  As is usual, the conversation weaved around the insult inherent in the term personality disorder and the help or treatment that can often only be accessed once that label is applied.  

I think, if you wanted to begin a therapeutic relationship in the worst way possible, you’d ignore someone’s history, tell them they had a personality disorder then watch as all the stigma associated with that label is enacted upon them.  It’s because of this I make a lot of effort (campaign?) for traumatised people not to be given a personality disorder diagnosis, for staff to understand people in terms of what has happened to them and for the world to recognise how survivors of abuse are shown huge sympathy until its decided they have a personality disorder and are then blamed for all historic, current and future problems.  

When I’m fighting that good fight, it can feel positive.  Standing with and for oppressed people.  On occasion, it doesn’t feel so good.  While we were talking the other day, someone who had been given a personality disorder diagnosis talked about how a ‘disordered personality’ really fit with how they understood themselves.  It reminded me of another discussion years ago where, after I’d suggested we shouldn’t tell traumatised people their personalities are disordered, a voice rang out with “My personality IS disordered, thank you very much”. 

So then what to do?  I make an effort to ensure a lived experience voice is part of almost everything I do in work, so how to respond when a lived experience voice champions the idea of a disordered personality?

I started thinking about it a lot.  Judgemental though it is, I felt that people “shouldn’t” think of themselves as having a disordered personality.  I thought about how in the past, “Inadequate Personality Disorder” was part of our diagnostic manuals.  When it was taken out, I think there were people who missed it, because they thought an inadequate personality really summed them up.  

I thought about the history of homosexuality.  Here it is listed in the DSM II

“302: Sexual deviations

This category is for individuals whose sexual interests are directed primarily toward objects other than people of the opposite sex, toward sexual acts not usually associated with coitus, or toward coitus performed under bizarre circumstances…Even though many find their practices distasteful, they remain unable to substitute normal sexual behavior for them. This diagnosis is not appropriate for individuals who perform deviant sexual acts because normal sexual objects are not available to them.

302.0 Homosexuality”  *Fascinating that same sex relationships in prison are not illness but the day you step outside a prison they are!

Once again, I can imagine that at the time when homosexuality ceased to be viewed as an illness or disease, there were people who had been diagnosed who felt that this label summed them up perfectly.  I think most of us can look into the past and agree we should never have told people that their personalities were inadequate, nor that the people they wanted to have sex with were determined by the pathology of their disease.  A change was made for the better and their opinions didn’t count.  

I genuinely think in the future we will look back aghast at how we treated survivors of abuse both in how we label understandable reactions to living through hell and with the prejudice and discrimination we knowingly unleash once “personality disorder” is written in someones notes. 

So in the same way people with lived experience might have been ‘wrong’ to oppose their sexual orientation being viewed as an illness, are people who have been told they have a personality disorder ‘wrong’ to think they have a disordered personality? 

I then got thinking of something else.  Many people I work with have self esteem so low they could mine for lithium.  They see themselves as bad, flawed, evil, selfish and cruel.  Regardless of what cruelty, indignity or neglect has been inflicted on them by others, they have had the explanation that its all their fault (literally) beaten into them.  When someone in a white coat comes along and gives you a label that confirms every single one of the worst things you’ve thought about yourself, it makes sense to me that you’d grab hold of it.  At least it’s official now.  A validation that everything you beat yourself for was true. 

The problem is that this leads me to pathologising people in exactly the same way others do.  “You only think you have a disordered personality because you are too hurt/damaged/ill(???) to see any  different”.  I then get a free pass to ignore everything I don’t agree with because I’ve been able to pop it into my “not valid argument” pile. 

I weighed up all the above and didn’t know whether to say it out loud.  I was picturing how crushed and invalidated I might feel if some professional responded to my honest opinion in that way.  In the end with a lot of caveats about not wanting to invalidate, I did say it.  It seemed to splash into the wider discussion without too many ripples but it makes me wonder for the future. 

The categorising of personality disorder is changing.  Mind have just put out their new information about Personality Disorder talking about how all the different types have gone.  I hear on the grapevine that the next `DSM wont have separate categories.  We won’t tell people they are medially a narcissist or a borderline anymore, just that they have a personality disorder.  (As if the stigma and insult lay in the prefix rather than the ‘personality disorder’ description).  At some point all the diagnostic manuals will change again and how much influence should those who feel their personality is disordered have over the changes?  Total influence horrifies me, but no influence feels wrong too.   

I have a fairly awful vision that people who are wedded to the idea of labelling natural responses to adversity as a personality disorder while ignoring the suffering that the label brings will latch on to those who feel their personality is disordered.  That the foundation that all the stigma and discrimination is built on is justified because there are people that agree their personality is disordered.   The problem is that I find this vision awful because I think I’m right and others are wrong. 

The debate will continue and people who are in no way impacted by the stigma and discrimination will continue to argue that categorising distress differently will not make a difference.  I often have very critical thoughts about organisations who only champion lived experience voices who support their narrative, but I was aware of how much I didn’t want to hear an opinion that contrasted so distinctly with my own.

I cant come up with a satisfying, line in the sand concluding paragraph here.  I’m not going to stop telling the world we shouldn’t tell people who have lived through hell their personalities are disordered.  There will be a bit of me that’s more aware of how insulting someone who believes their personality is disordered will find it if I don’t agree.  I will say that much of my training has been around challenging the negative thoughts of those who mentally eviscerate themselves.  It’s only in in the field of ‘personality disorder’ that it seems acceptable for professionals to agree with them.

As ever, all comments welcome but just as a starting point - there is not one treatment that we have for emotional dysregulation, recurrent suicidality, self harm, relationship difficulties or anything else that will only work if the patient and people around them believe they have a personality disorder.  Not one. 

*shared with the permission of the person who inspired it :-)

Mad or Bad? – The Portrayal of Mental Illness in Joker

Written when Joker first came out…I am just back from watching Joker in the cinema and thought I’d share a few ideas I had while I was watching it.  This is one of the first films I’ve gone to see with a level of professional curiosity and twitter had whet my appetite by telling me it gave the message that people with mental illness  were dangerous.

Before we start I’m going to warn you that after this paragraph, while I won’t go into detail of the plot, there are bound to be things that will spoil some elements of the film if you haven’t seen it.  I’ll add that I thought it was very good.  Gripping, well acted and with a powerful message.  Go see it to make up your own mind then have a look at how much you disagree with what I’ve written below.

** Warnings for spoilers, violence and abuse

So we’re going to take the line that was in my head when I went to the cinema about people with mental illness being dangerous.  Throughout the film there’s a few references to mental illness.  The ones that spring to mind are Arthur (Jokers name before his name is Joker)  asking for more medication because he feels terrible all of the time.  There is another reference to having stopped taking medication and two episodes of Arthur slightly losing contact with reality.  In one he imagines being recognised, understood and hugged by someone he has admired for years.  In another he imagines someone he is attracted to liking and supporting him.  There’s a reference to him having been detained in hospital with no explanation as to why.  If you got the Diagnostic and Statistical Manual out you could probably pathologise these and I’m sure the film deliberately uses them to place Arthur in the ‘mentally ill’ bracket.  What was important for me was that none of these seemed to have any impact on the violent, antisocial and sadistic behaviour that happens later in the film.

What does bring out the descent into violence is far better explained by the question “What happened to you?”.  We learn of Arthur being at least physically abused and neglected while a child.  This led to his mothers detention in a psychiatric hospital.  While there she says how he was always happy.  I got the impression that regardless of how Arthur had felt, his mother had pushed him to show happiness and joy.  Arthur has a neurological condition that means he laughs inappropriately, often when under stress.  I wasn’t sure if this had always been there or whether it was a result of brain damage from his physical abuse.  Either way, from a young age he was given the message that he was worthless and unworthy of protection – merely a thing to be tied up and beaten.  Arthur is told that others find him creepy and even without the psychological damage caused by his upbringing, we can picture how manic laughter under stress would be like painting a target on your back in school.

Fast forward 30 years and we see Arthur working as a clown.  We see him humiliated and beaten again.  We see the people who are supposed to help him abandon him and we see a number of public humiliations as he reaches out to connect with others.  He doesn’t know how to fit in.  He is given a gun by someone who hears of his first beating.  When he finds himself being powerless and beaten again, it is shocking but not surprising when he turns to violence.  The next few scenes imply that Arthur is for once experiencing something like control.   While it’s mixed with fear it’s clear that someone who seems to have had a life being hurt by either others or himself, has found a way to feel powerful.  Over the next few scenes we find Arthur struggling to work out who he is, being betrayed by the only person he thought loved him and being set up for for his most public humiliation yet.  During this time Arthur learns what many people that I have worked with have learned – that power over others can temporarily rid the body of intolerable feelings of being vulnerable and humiliated.  It seems that this is a factor in Arthur choosing not to end his life as he planned, but to attack the person who had arranged his public disgrace.  As his violence increases Arthur finds an acceptance and approval that he never experienced during his times of trying to make people happy.  Every horrific act in the film can be understood by looking at not what was wrong with him, but what happened to him.

One of the most powerful lines in the film is:

“What do you get when you cross a mentally ill loner with a society that abandons him and treats him like trash?

You get what you fucking deserve”

I’ve read criticism of this because it draws a parallel between mental illness and violence.  I’m arguing that mental illness has absolutely nothing to do with it.  None of his actions are based on any mental illness.  It would be better to swap ‘mentally ill loner’ with ‘person who has been hurt by people who should care”.  It doesn’t sound as good to the ear, but it conveys the overall message of the film better.

Time to get the red flag out and get political.  The film makes an effort to portray society as corrupt.  Nobody helps anyone else.  There is rubbish everywhere.  Vermin roam unchallenged.  The poor are dismissed and unimportant.  Those who are interested in the poor are dismissed and unimportant.  There is only interest in those who are rich.  Obviously such a society could never exist today….or maybe it could.  This film is set in America which is the ultimate embodiment of a capitalist society, where even a self confessed sexual predator can get himself elected president seemingly on the back of being a billionaire celebrity.  The gap between rich and poor is accelerating in most western societies and in a system where people are expected to be poor, powerless and humiliated day by day, it shouldn’t surprise us that people seek power in ways we do not approve of.  As of October 1st 2019 there had been at least 21 mass shootings with at least 124 dead in the USA this year alone.  Somehow this has become an acceptable part of society which although disapproved of, seemingly cannot be addressed.

There has been a lot of disquiet about Joker.  I’ve heard that it might incite violence and I think that it could.  In the same way that Catcher in the Rye and the 120 Days of Sodom were associated with horrific acts, I don’t think it’s beyond the realms of possibility that someone who was on the brink anyway could see this film and decide to ignite a similar blaze of glory.  The film even parodies the voyeuristic news coverage that inspires the next intake of mass killers.  To watch this film and worry about the response of individuals is to totally miss the point.  We need to look outside the cinema to the world around us.  If we support a society with massive inequalities, if we condemn people to poverty based on the lottery of their birth, if we leave children to be neglected, if we tell people to seek help when there is none available and all the time we push the idea that the only thing of value is money – then we will get what we deserve.  The president of the United States has told us that people who commit mass killings are mentally ill.  This film suggests it has nothing to do with mental illness and  everything to do with the products of humiliation, poverty and injustice.

Keir is a Lead Therapist in an NHS Specialist Service and provides training, consultation and therapy around complex mental health problems through beamconsultancy.co.uk

Why You Don't Want A Diagnosis of Borderline Personality Disorder

Who the hell am I to say this? Well, I’ve worked in mental health services for over 25 years.  The last 10 have been in services specifically for people who hurt themselves and want to die.  The people I’ve worked with have almost always had a diagnosis of Borderline Personality Disorder or emotionally unstable personality disorder as it used to be called in the UK.  There was a time that I thought the diagnosis was useful and people just needed to understand it better, now I’m convinced that it does more harm than good.

Marsha Linehan is the creator of Dialectical Behaviour Therapy.  It is probably the most researched therapy for BPD and the only named therapy in the UK NICE guidelines for BPD.  Linehan says:

“I tell my patients if you end up in the Emergency Room for a medical disorder for gods sakes do not tell them you meet criteria for Borderline Personality Disorder.  Do not tell anybody.  You’ll be treated differently and many, many mental health practitioners wont see someone who meets criteria for Borderline Personality Disorder”

I’m trying to think of another diagnosis where one of the leading experts would advise people to keep their diagnosis secret in order to avoid mistreatment from health professionals.  There can’t be many.

I was prompted to write this after I was doing some training and a clinician who worked with students in a university kept meeting people who were asking for a BPD diagnosis.  They’d seen something on Tik Tok, had a google, and they were convinced they’d found a name for the discomfort, stress and pain they were experiencing.  The pain is real, but this blog is an attempt to explain why you might not want to describe it as BPD.

Reason 1 - Mental Health Staff will Treat You Worse

The Paper “Personality Disorder: The Patients Psychiatrists Dislike was written in 1988.  I’m not aware of any other diagnosis where you could write a paper with a similar title.  The article highlighted the negative views that psychiatrists hold towards people who get this diagnosis.  While this was 40 years ago, the study was repeated and found similar results.  These negative views aren’t limited to psychiatrists.  An Australian review of stigma for around BPD said:

"the diagnostic label of ‘BPD’ elicits particular negative beliefs and emotions in psychiatric nurses"

"these beliefs extend to other staff, such as psychologists, psychiatrists and social workers"

"clinicians report having particularly negative beliefs about young people with BPD, including erroneous beliefs about trustworthiness and dangerousness, and that they are ‘bad, not ill’.

"The label of BPD does not evoke the same stigma in the general community as it does in mental health clinicians”

That last point is interesting - the stigma is higher in mental health clinicians than in the general public.  Getting the diagnosis means your friends and family should treat you the same, its only the people who are supposed to help that will think less of you.

What will this look like?

Probably the most common ideas are that people who get a personality disorder diagnosis are manipulative, attention seeking, split teams and sabotage their treatment.

Manipulation - Because of the diagnosis, people will stop believing you.  Everything you say will be questioned, from why you were 5 minutes late to whether the awful experience you described actually happened.  Jay Watts brilliantly describes this “testimonial injustice” here.

Attention Seeking - Here, every aspect of your behaviour will understood as an attempt to draw attention to you.  This will include hurting yourself, being loud, being quiet, leaving early, being first….almost anything that differers from a victorian ideal of a demure woman will immediately fit into the attention seeking box.  If you come to your appointment on roller blades, a green wig and a suit covered it glitter, attention seeking might fit.  When you are crying because of the intensity of what you’re feeling, it probably won’t.  Because you will be understood as attention seeking, rather than getting sympathy or empathy from staff, you’ll probably find they’re annoyed with you.

Splitting - People will see you in this way when you do anything that either suggests you feel warmly towards one or more members of staff or if you suggest that you find some less friendly than others.  If you have any other diagnosis people won’t take any notice but if you have this diagnosis, when you want to spend time with the person who smiles at you more than the one who scowled, this will be you splitting the team.  You are expected to have exactly the same relationship with every member of staff in exactly the same way they don’t.  If you complain about something egregious someone has done, 1 - they wont believe you (see manipulation), 2 - They will simply assume splitting is in place.  At it’s worst, this will be what people decide is happening when you ask not to be helped by someone who reminds you of people who have hurt you.

Sabotage - Almost any time you do something that doesn’t fit with the clinicians ideas of recovery and improvement, it will be assumed you’re doing it on purpose.  That thing you did yesterday that you bitterly regret - people will think you did it deliberately.  Again, they will be annoyed with you for this.

Some people think I have some expertise in this area. It’s worth saying that my undergraduate training didn’t mention personality disorder, nor did it mention that some people I worked with would want to hurt themselves and to die. I had to learn about “personality disorder” on the job from others who hadn’t had any training. I can assure you that all the above is what I was taught by my peers, and what spread myself for a good few years before I was taught differently.

Now you might have really significant difficulties in your life, but even if you had none you’re very likely to get upset and annoyed when people treat you in the way described above.  When you react to this treatment, everyone around you will be furious and all your reactions will be fitted into the boxes above, which will irritate them more.

Reason 2 - It impacts everything

The Welsh charity Platform has an archive of awful experiences people with a BPD diagnosis have gone through, but the things I repeatedly hear about are:

1 People having wounds stitched in hospital without anaesthetic,

2 All visits to the GP seen as attention seeking so serious illnesses are missed and pain relief not given

3 Immediate risk referrals are made when you become pregnant

Reason 3 - It doesn’t identify a specific problem

As you need to get 5 out of 9 criteria to get a BPD diagnosis, there are 256 different flavours.  It means that someone can have criteria 1-5 and someone else criteria 5-9.  They then have the same diagnosis, prognosis, care plan….but they only share 1 criterion.

The Royal College of Psychiatrists gives guidance on the thorough assessment required before someone is given a BPD diagnosis.  I suspect this is because how often (in my experience) the diagnosis is given based on a brief contact and gut feeling.  I generally find that to get the diagnosis you generally only have to meet 1 criteria from the diagnosis - doing something that is bad for you, and 1 separate criteria - being a woman.  An example of the free and easy way the diagnosis is given comes from Aaron Beck, the creator of CBT.  He had two therapists talking

“I’m having trouble with my patient with BPD”

“How do you know they have BPD?”

“Because I’m having trouble with them”

Far too often I see a diagnosis made based on the poor quality of the relationship the clinician has with the patient, rather than a thorough examination of peoples history and current circumstances with reference to the criteria.

Comorbidity is very high in people with a BPD diagnosis.  Almost everyone has other mental health diagnoses too.  Research shows if you meet the criteria for one personality disorder, you’re likely to meet the criteria for others too.

In some ways a BPD diagnosis is like saying “something is wrong” without being able to identify the specific thing to help with.  That means it often doesn’t lead to help that is helpful. If the point of diagnosis is to open doors to help, the diagnosis of BPD tends to shut doors and close the minds of those who would help those with other mental health difficulties.

Reason 4 - It misses specific problems

A large proportion of people who get a BPD diagnosis have had awful experiences in their lives.  It is the diagnosis most associated with childhood abuse.  History tends to be cut off when this diagnosis is made  and people find it very hard to access therapy to help manage their traumatic experiences.  While everyone I work with is given a BPD diagnosis, in reality their difficulties could frequently be better explained in terms of PTSD and Complex PTSD.  In addition, the dustbin diagnosis of BPD will contain many people who are neurodivergent. Trying to argue this once a BPD diagnosis has been given is near impossible. There is a danger that you’re seeking help because you have some trauma in your life and this diagnosis will add to that trauma rather than supporting you to address it.

Reason 5 - You will probably end up taking medication

There is nothing wrong with taking psychiatric medication.  I’ve been prescribed it myself, I’ve had some very paranoid experiences on diazepam and welcomed things to help me sleep during a stressful period of my life.  Unfortunately, there is no licensed medication for BPD.  What this means is that when high quality studies have taken place with some people taking the medication and some taking something else, the medication has never had a significantly better result than not taking it.  Despite this, people with BPD have high levels of polypharmacy - this is where multiple medications are prescribed for the same issues.

I think those are the main reasons I’d encourage people to be wary about seeking a BPD diagnosis.  Psychiatrists that I think a lot of say “I explain the diagnosis to people in a really warm and kind way and they leave really happy with it.”  I do not doubt that for a moment.  The problem is when those people come into contact with others who are not that psychiatrist.

I’m told people ask for the diagnosis, I’m sure they do.  Whether those people are fully informed about the stigma and discrimination they will experience as a result of getting that diagnosis is another question.  Well, if they read this at least they are making an informed decision.

I’m going to try to avoid getting a personality disorder diagnosis, so what should I do?

Some tips….Do tell people that you want to avoid this diagnosis.  If you’ve had horrible experiences in your life, you might feel that Complex PTSD explains your problems better, you might feel that you may be neurodivergent.  You might work with staff to find a way of describing your difficulties that doesn’t come with all the stigma.  While there are therapies for BPD few of them will only work with people who have a BPD diagnosis.  Given that the biggest indicator of whether therapy will work is the quality of the therapeutic alliance, you might even be better off finding a therapist you trust, who feels safe, who describes your difficulties in a way you agree with and who agrees with you a way to work on your difficulties that makes sense.

People can be very literal and the difficulty with having ‘personality disorder’ written next to your name is that people treat you as if your personality is disordered. 

It isn’t. 

With 100% of the people I work with, their difficulties make sense in terms of what they have lived through, what happened, what didn’t, what life has taught them about themselves, other people and the world.  You are not disordered.

There is a chance that you feel you are disordered.  You might feel your personality is black, broken and flawed.  If you find a mental health professional who helps you think that your’e right, you might be better off fleeing from them.

Lastly, and I cant emphasise this enough, if you are suffering do seek help.  Do share you difficulties, your suffering and your pain.  I am not suggesting for one moment that you don’t try to get some support or relief.  I am warning of what happens (in my experience) when a BPD label is given and giving you some information so you can make a more informed choice. Hope it helps.

(And while I often say that the stigma around BPD is higher mental health staff than in the general public, Hollie Berrigan pointed me at the Unilad story that the image above is taken from just as I was publishing this. A diagnosis associated with serial killers. Not the diagnosis most associated with childhood abuse, serial killers. Good grief.)

"Specialist" Placements - How Special?

This week brings with it the conference of the British and Irish Group for the Study of Personality Disorder (BIGSPD) .  BIGSPD gets a lot of criticism as an organisation but I’m going to suggest that despite it’s flaws, it’s a democratic organisation with substantially more co-production than most.  When I say most, I’m not aware of any organisation that involves the recipients of services to the same extent.  BIGSPD has a lived experience co-president and people with lived experience make up around half of the executive committee, which Hollie and I both serve on.

It’s likely that we’re going to talk to a few people about “specialist” out of area placements for people who recurrently self harm and feel suicidal this week, so we wanted to make sure that some of the evidence that suggests “specialist” placements might be a poor option is at the top of our blog page. 

In this blog we will be looking at the idea of a specialist placement to provide therapy and keep people safe, and float the idea that they aren’t specialist, the therapy is far from ideal and that they do not keep people safe.  Some would say that they make things worse. 

The Use of a “Specialist Placement” is contrary to all current quality guidelines

It is a fact that the use of compulsory placements is against the NICE guidelines and the recommendations of the National Confidential Inquiry Into Suicide and Self Harm.  NICE tell us to:

“ensure that when, in extreme circumstances, compulsory treatment is used, management on a voluntary basis is resumed at the earliest opportunity”.  This is entirely incompatible with the decision to compel people to go to a unit far from home for long period.  NICE also tells us not to think about the possible harms of admission, but the “likely harm that may result”. 

The NCISSH words their advice a bit stronger.  They tell us “Admission to inpatient care should be avoided where possible”.  They highlight out of area placements as an increased risk factor for suicide, leading to NICE advising“For people admitted to hospital outside the area in which they live, take into account the higher risk of suicide after discharge”.

Specialist Placements are not Special

Some areas of inpatient psychiatry have quality standards which mean units can be accredited as specialist units.  No such system exists in the world of suicide and self-harm, nor in the field of “personality disorder”.  As such, a unit becomes specialist by telling the world that it is special.  The worst inpatient unit in the UK could change its title to specialist personality disorder unit tomorrow without breaking any rule or regulation.  While the Care Quality Commission do inspect the locked rehab units that claim to be specialist, they are inspected as generic locked rehabilitation wards.  Their claims of specialism are not interrogated.

Within this field, people are often sent to “specialist” units to receive therapy.  The one most commonly offered is Dialectical Behaviour Therapy.  DBT was created by Marsha Linehan, someone who herself survived severe self-harm, suicide attempts and prolonged psychiatric admissions.  In the DBT manual, she writes “There is no empirical evidence that whatsoever that involuntary intervention or psychiatric hospitalisation decreases suicide risk in any way”.  She adds that the aim of DBT is to work with people when in crisis, not to remove people from the environment where they live.  When doing the comprehensive DBT as recommended in the NICE guidelines, patients admitted to hospital will need to be able to talk their way out in order to continue to access therapy.  The therapist will not continue therapy on the ward.  Obviously compulsory treatment in a locked environment is a run and a jump from the DBT with the evidence base that Linehan described and NICE recommend.  NICE also recommends being offered a choice of therapies rather than compulsory DBT.  We rarely see one therapy offered adherently by qualified clinicians, let alone a choice of therapies.

There is no study describing the therapy available in “specialist” units.  Part of the reason we started Beam was because we visited a number of units and found the therapy on offer was primarily provided by unqualified staff.  When we meet with staff who work in ‘specialist’ units, they typically described how they have never received any specialist training.  One of the most uncomfortable training sessions we ever took part in was for a large provider where the people present seemed totally disinterested.  They played on their phones through most of it and that would have been a problem if the ward manager had seen them, had he not been doing the same himself.  When we asked why people were so distant they explained that they used to be a rehab ward and had been told they were becoming a specialist “PD” ward the following month.  They seemed to exude a contempt for the people who were given a personality disorder diagnosis.  It was a job no one had applied for, that no one wanted and we pitied the people who would be admitted to that “specialist” environment.  

The Radio 4 documentary “The Forgotten Patients” describes a number of experiences in “specialist” units.  One of the key moments for us was a lead member of staff in not only a “specialist” unit, but a centre of excellence, describing how none of the staff there had any specialist training.  This could be an aberration but it fits 100% with our experience.

What does “specialist” prescribing look like?

The NICE guidelines tell us  “Antipsychotic drugs should not be used for the medium- and long-term treatment of borderline personality disorder”.  Our experience is that this guideline is routinely ignored in units that brand themselves as specialist.  We wrote the paper Clozapine Concerns after being shocked at the use of long term powerful antipsychotics in “specialist units” that we very rarely see in the community.  While the only study we’re aware of that surveyed Drs opinions on the use of clozapine found that the majority disapproved, there is a lone voice calling for the use of clozapine to be increased.  That voice comes from a specialist unit.  There is a study describing positive experiences by patients taking clozapine for “BPD”.  This study was carried out in a “specialist” unit by the people who were providing the care. 

Hospital keeps people safe

“They need to be sent there to keep them safe” is something we hear a lot.  We have covered how placements increase the risk of suicide and how the creator of DBT is emphatic there is no evidence for their use to reduce it.  Sadly some people we know who were sent to placements against their will to be kept safe never returned.  We have no intention of singling out one provider but these headlines reveal the nonsense of the ”to keep them safe” policy.

 In summary, the “specialist” placements offer care that arguably diverges significantly from the NICE guidelines.  BIGSPDs own report describes some horrific individual experiences as well as significant concerns about this area of practice.  It is entirely possible that when people have the most severe difficulties, a specialist response is to jettison what is seen as quality treatment and do things differently out of necessity.  It could also be argued that maverick practices thrive in closed institutions with reduced peer scrutiny and restricted family access. 

If you watch Panorama you’ll know that poor treatment of people who recurrently self harm and feel suicidal is not unique to the private sector.  We both walked away from the NHS when our concerns about the harms being done in the name of care couldn’t be heard.  The difference is that the NHS keeps people detained for significantly less time and doesn’t give out leaflets with “specialist” written all over them.

We would like to talk to you about alternatives to “specialist” placements.  We can talk about how the last 5 people we worked with who were seen as NEEDING a specialist placement were supported to live in the community instead.  They had 1250 bed days between them in the year before we supported their discharge.  2 in the year after.  That’s a reduction in bed days of over 98%.

You might notice that we are criticising a specialist service while claiming to be one ourselves.   Between us we have qualifications in delivering and experience of receiving Integrative Counselling, DBT, SCM, Occupational Therapy, CBT, Group Analysis, primary care therapy, CMHT, Home Treatment, peer support, hearing voices groups, inpatient care and an MSc in Personality Disorder.  We are part of a genuinely co-produced service.  We both sit on the executive for BIGSPD and the Royal Collage of Psychiatrists Expert Reference Group for Stigma, Labelling and ‘Personality Disorder’.  While we have quoted some facts and provided some links, we’re asking you to make a judgement on what narrative to believe.

Providers of “specialist” services have been invited to debate the ethics of their mode of treatment with us at previous conferences.  They have declined.  We have not.  There are plenty of opportunities to discuss all the above with representatives of “specialist” services in the foyer at the conference and we invite you to talk to us as well.  You can decide which narrative sounds more plausible.  

If you want to try to avoid placements either by us doing therapy, training or thinking with your staff, do get in touch.  You can use the contact form on the site, message us on twitter, facebook or linkedin or if you’re at the conference, shout as we walk past you.

We are holding a facilitated day around Avoiding Placements In central Manchester on Wednesday 13th September

Click here to book a place

 Keir & Hollie

Unspeakable Thoughts: When staff think “If you were going to kill yourself you’d have done it by now”

Trigger warning – Suicide, Dismissive ‘care’ This piece was originally published in Asylum magazine but has been on my mind for the past few days. Hope it’s useful.

The phrase “If you were going to kill yourself you’d have done it by now” has popped into my head a few times over the years.  Mostly, when I was first starting out in the community mental health team and I had my first taste of doing ‘duty’. ‘Duty’ (I have no idea where this name comes from) involved being in the office and fending off phone calls; seeing someone who pitched up at the building; or leaping into a car to go on an emergency visit. It was here that I first came across people who were recurrently suicidal.  

The first time I listened to a detailed description of how someone had prepared their method of suicide and was now phoning me because it was in their care plan to ask for help, I was terrified. I felt it was my duty to keep them safe. I suggested solutions, I reassured, I tried to instil hope. I probably suggested hot baths and milky drinks. All to no avail. I remember the first conversation ending with no reassurance that they could stay safe, so I sent an ambulance round and crossed my fingers. They were suicidal. I was the last person to speak to them. Could I live with myself if they died? Would I be blamed for not doing better or not doing enough? I spent the weekend worried I’d find out they were dead on Monday and when all seemed well on the Monday morning I breathed a sigh of relief.  

Fast forward 3 years and I’d probably had the same conversation with the same person 50 times. When I heard their voice on the phone I started to feel less compassion and more annoyance. Rather than my first novel experience of trying to save someone, I think I was frustrated, bored and eager to get the conversation finished. My colleagues supported me by reassuring me this person would never kill themselves and while we would occasionally still send ambulances if ‘the right words’ came out in the conversation, it was always out of a sense of ticking boxes rather than doing anything that might be useful.  

During this period that I was fully immersed in stigmatising attitudes around ‘personality disorder’.  I remember my amusement when someone told me they were putting on a course for people with Borderline Personality Disorder to teach them how to kill themselves properly. The ‘joke’ here being that despite repeated attempts, by some chance people always live. The implication is that the statement “I’m going to kill myself” has no value when uttered by someone with that diagnosis despite the 1 in 10 suicide rate.

As I’ve developed within mental health services I’ve found myself working more and more with people who are recurrently suicidal. They have the misfortune to be supported by people who have attitudes similar to those I had in the past. Those staff still harbour the idea that “If you were going to kill yourself you’d have done it by now”. It either stays in the head of the practitioner (and gets acted out in more subtle ways of dismissal) or said openly to insult or attack. Neither of these are helpful and over time I’ve learned that being able to articulate a more empathic version of that view is essential to be able to work with those who feel life isn’t worth living.  

I think we need to see suicidality (a word that I use a lot but which every spell check hates) as being on a spectrum. People are rarely 100% suicidal or 100% loving every moment life sends. People exist somewhere in between. For me, someone saying they feel suicidal is the beginning of a conversation.  

Because this conversation is happening, we can assume that someone isn’t at the 100% stage. I’ve listened to people tell me with absolute clarity, the method they will use to end their life once I have left them.  10 years ago I’d have been furious at them for ‘putting me in this position’ and ‘knowing I would have to react’. I can now be curious about why someone would say these exact words to me. This can lead us to a discussion about my anticipated reaction and the pros and cons of this for them.  

This might sound invalidating but its important to keep in mind here is that telling someone you are suicidal might be a way of keeping yourself safe.  This is to be celebrated.  All people working in mental health want those in their care to live.  We could consider being grateful when someone says they are suicidal because in some way, it’s an invitation to help.  It might not be the most effective invitation, but it is an invitation none the less.  We can explore what’s going on in more detail, rather than ignoring everything in pursuit of someone saying they can keep themselves safe until the next person comes along.  

This might sound invalidating too, but even attempting suicide might be a way of inviting help.

For me attempting suicide and not dying is something to celebrate.  Often something will have got in the way which was, to an extent, predictable.  Not always, but where these occasions occur, they are again an opportunity to be curious and something to be joyful for. Some force, conscious or unconscious has intervened to keep them safe. I suppose some examples of these are people who take “small” overdoses (if such a thing exists), people who begin their act after saying goodbye in a way that will alert people, or do something that is likely to attract attention (e.g. standing at the bridge, walking down the tracks).  In here, somewhere, is a communication about distress that gets in the way of dying.  

The trap (which I have often fallen into myself) is seeing all this as some ploy to ensnare an unwary clinician. Just because someone has taken 40 overdoses with the stated intention of dying doesn’t mean they’re only saying it to torture you. It’s a chance to wonder about what is happening in that pattern. Whatever it is, is useful in some way.  Equally, it’s ok to ask what has kept someone alive.  I’ll often preface this with “This might sound like I’m trying to catch you out or trick you, but I’m really interested”.  

This might be massive invalidation number 3, but it’s important is to hold onto the idea that what we say isn’t always what we mean.  If you disagree, consider how often you’ve told people you’re ‘alright’ when really your world has collapsed.  I’ve worked with many people who have learned that merely asking for help brings nothing.  I’ve worked with people whose life has taught them that if you don’t use volume 11 then you won’t get heard.  I’ve worked with people whose life has taught them that only actions make people respond. 

My argument is that we should always take people seriously.  This does not mean that we take them literally. I’ve seen people who have wanted to be dead in the community for the past 5 years be kept on a hospital ward because they wanted to be dead.  It made the staff feel better.  It meant the person lived in hell.  Sadly, a conviction that death is better than life is very common for people who have lived through shit.  We generally compound this if we respond to their words with dismissal or restriction.  

Curiosity about why suicidal people are still alive is an essential part of work within mental health.  It allows us to expose strengths that are difficult to articulate.  It can let us know what is going on in the minds of those we care for.  It can prevent us doing things that are deeply unhelpful.  

A colleague now passed away once described the work of the CMHT to me.  “We will get a barn full of notifications that people are suicidal every year. Within that barn is a desk. That desk has a drawer. In that drawer is an envelope and in that envelope is a piece of paper with a few names on.  The work is trying to sift through the barn to find the people who are going to kill themselves”.  I identify a lot with this analogy, but I’d add some research to it as well.  We can predict those who are at high risk of suicide, but we are useless at predicting which high risk people will go on to die.  We risk a brutal system of ‘care’ for hundreds of people to save one life.  This might be a price worth paying, but it might not be the view of those who lose their liberty.  

We work in a system that demands accurate risk assessment – a task that no one has been able to manage so far.  Until our organisational and political systems recognise this, our workers will be filled with anxiety. Anxious workers dismiss people or restrict lives.  The work isn’t easy, but we will serve people better if we can thoughtfully voice the thoughts in our heads rather than having to act them out.  We will always be more helpful if we’re honest with people that we want to trust us.

Keir provides training, consultation and therapy around complex mental health problems through beamconsultancy.co.uk

* There was someone I only ever met on twitter.  She was very kind to me and very supportive of a blog I wrote called Why Are People With Personality Disorder So Manipulative?  We talked of a follow up around Why Are People With Personality Disorder So Attention Seeking?  This isn’t that, but I think it touches on some of the issues that mean that accusation gets thrown around.  I hope she would have approved of this.

* This was originally part of a co-produced workshop delivered at the BIGSPD conference in 2019.  It was originally Published in Asylum Magazine Vol 26 Issue 3.

What do the proposed changes to the mental health act mean for "BPD/EUPD"?

There’s two things to get clear before I leap into this.  The first is that while I’m not a fan of diagnosis I tend to work with people who use self harm as a way of coping, recurrently feel life is not worth living and who have had multiple experiences where people who are supposed to help have hurt them.  Other people give them a diagnosis of BPD/EUPD but its not a way of understanding that I find useful.

Secondly….I had such high hopes for the changes to the mental health act.  Why?  Because in his review of the MHA, Sir Simon Wessely identified the fear that mental health staff experience and how that impacts on their use of restrictive practice.  I wrote a paper with Rob Poole and Catherine Robinson a few years back talking about how putting people who self harmed and felt suicidal into private Out of Area units was a way of the NHS managing risk to itself.  The risk would be outsourced to a private company and if anything happened to a patient then it was on someone else’s patch and the NHS remained blame free.  You can read it here…

I want to expand it bit on what the review of the MHA identified.  Under the title of Fear it states “Professionals are fearful that unless they adopt a cautious, risk averse approach to their patients, they will find themselves being publicly shamed for those occasions when those same people cause serious harm to themselves or others”

Under Risk aversion and its consequences we read:

“One of the things that I initially found baffling was how to explain the inexorable rise of detentions under the Mental Health Act, something that has been happening for many years…But there is another issue, difficult to pin down in statistics, but which has played a substantial role in this rise, and contributes to some of problems that we report in creating and sustaining a genuinely therapeutic atmosphere for those detained. It is the issue of risk and risk aversion”

With the he DSPD program “The initial optimism felt in some quarters has largely given way to disappointment as it became clear that most were just being detained for the protection of the public, and that better (and cheaper) alternatives were available. A similar but not identical argument is raised now, with justification, for the fact that some people with a learning disability, autism or schizophrenia are being “warehoused” as we now call it in locked rehab wards, or unsuitable long stay wards which exacerbate and not ease their problems”

We move on to the topic of Fear and risk aversion

“So whilst fear of the mentally ill has decreased in the public, parliament and media, a different kind of fear has increased - the fear of making a faulty risk assessment that influences many professionals.

“a pressure developed affecting all levels of staff, managerial through to clinical, to 'manage risk', which was the intended consequence of this shift in policy. But this soon slipped into 'managing risk to themselves'”. And Szmukler continues, this is understandable, since the consequences of a faulty risk assessment were and continue to be “quite horrendous... protracted investigations and scrutiny of the case, blame, negative publicity, formal inquiries, and scores of recommendations requiring implementation”

It is easy to see how this would have been reflected in a steadily rising number of detentions, as professionals of all kinds became increasingly risk averse, and more likely to make coercive interventions that at least in the short term were likely to reduce the risk of an early dreadful outcome – such as serious or fatal harm to a patient or a member of the public.

Some of the consequences are obvious – namely the rising rate of detentions. Others are not so obvious, but can be seen in the myriad reports we have from service users of unnecessary restrictions imposed upon them, usually justified in the name of safety. We are not talking about appropriately mandatory measures such as ensuring the absence of ligature points, but others that seem at best exaggerated or disproportionate and at worst petty, accompanied by statements such as “you never know what might happen” and “we just can’t take the risk”.

But we cannot act on our own. If we are seriously to tackle the problem of risk aversion action must proceed across the board – there is little point in professionals deciding to accept more risk if the courts, regulators, media and others do the opposite. Intellectually everyone accepts that there is no such thing as zero risk – even if you detained every person with any mental disorder for prolonged periods of time, an absurd proposition, you would still not eliminate it. Any probability judgement must be wrong sometimes, and that should not automatically mean that this is a fault, let alone negligence. But the dynamics of the risk society seem to be running in the opposite direction, accelerated by legal judgements such as the one handed down by the Supreme Court in the tragic case of Melanie Rabone8. As the President of the Supreme Court remarked recently, this judgement “where the hospital was held liable for the death of an informal patient who killed herself whilst on weekend leave of absence is bound to make practitioners less inclined to use informal care”. In other words to increase, not decrease, the usage of the MHA.”

So after reading Sir Simon Wessley’s recognition of the existence and impact of fear in our mental health services I was looking forward to seeing how this fear would be acknowledged and tackled going forward.  How could we support clinicians to think compassionately rather than having to look over their shoulder?  How could people do the right thing rather than be seen to do the right thing?  How could we move away from the appalling situation where patients lose their liberty to assuage the anxieties of frightened clinicians and organisations?

The proposed changes do not mention fear.  This seems like a terrible missed opportunity.  It might be politically unhealthy to challenge the stereotype of the caring and reflective mental health practitioner, but we don’t do anyone any favours when we ignore the huge numbers of unfilled posts, the increasing demands on services, rising incidences of self-harm and the human cost of seeing a number of fires burning and having to choose which fires to put out and which to leave. 

With that rant over, lets have a look at some of the changes most relevant to those I work with and just as a reminder, they tend to be people who use self harm to cope, often feel suicidal and have understandable difficulties trusting others. 

Grounds for detention

Here the old mantra of “risk of harm to self or others” moves to risk of “Serious harm”.  Now there isn’t a definition of serious harm in the document but on another part of the government website it states:

“The risk of serious harm is the likelihood of a life-threatening and/or traumatic event. Recovery, whether physical or psychological, can be expected to be difficult or impossible.”

Now for those I work with, most of the ways that they use to cope would fall under that definition.  This would mean that most of the people I’ve worked with in the community are liable for detention. 

It adds something new to the thoughts about risk – “given the nature, degree and likelihood of the harm, and how soon it would occur, the patient ought to be so detained”

Here I find that when clinicians are frightened, they think “it’s happened once, it could happen again at any time”.   I don’t see this as providing much protection for those I see detained.

For section 3 there are some extra bits

(b) serious harm may be caused to the health or safety of the patient or of another person unless the patient receives medical treatment,

(c) it is necessary, given the nature, degree and likelihood of the harm, and how soon it would occur, for the patient to receive medical treatment,

(d)  the necessary treatment cannot be provided unless the patient is detained under this Act, and

(e)  appropriate medical treatment is available for the patient.”

The difficulty here is that “medical treatment” is often a rather flowery euphemism for “stopping people hurting themselves”.  It tends to involve people being watched, sedated and restrained.  Where this brings about a period of respite and stability then we can all celebrate but too often I see it lead to a huge escalation in frequency and severity of risk.  This new presentation in the face of restriction then becomes the justification for ongoing restriction.  I don’t see these changes making a difference for the people I see stuck in “specialist” private units where a weekly DBT group run by an unqualified trainee is lauded as appropriate treatment

“Medical treatment” is something that

1.    has a reasonable prospect of alleviating, or preventing the worsening of, the disorder or one or more of its symptoms or manifestations, and

1. (ii) is appropriate in the person’s case;

1. (b) references to medical treatment, in relation to mental disorder, are references to medical treatment the purpose of which is to alleviate, or prevent a worsening of, the disorder or one or more of its symptoms or manifestations.”;

I still think that “we’re stopping them killing themselves” will justify all the above, regardless of how dangerous people are to themselves now compared to when they were admitted.

In summary, I don’t think these changes will benefit those I work with.  There are some things I do like.  People are to be consulted more and advance directives given more weight.  I still think there’s ways around this but there’s more hoops to jump through to establish consent.  I like that the Nearest Relative is replaced by a nominated person and that they can apply for people to be discharged more often.  I don’t see what will stop a hospital getting fed up of them any more than the NR but at least there’s more choice. 

The obvious change for the better is that people can apply for their release more often.  While I think all the above does nothing to tackle the risk aversion, at least people get to roll the dice more regularly. 

I’ve worked with people who sometimes did dangerous things in the community and frequently lethal things in hospital.  On occasion I’ve been unable to convince others that hospital won’t keep people safe and learned of the patient dying in a restrictive setting.  Other than the more frequent review from the tribunal, I don’t think the draft changes will help them.  The implication of the review of the mental health act (which had “Reducing Compulsion” in it’s title) was that restriction was being used too often.  The outcome of almost every serious incident review and coroners enquiry I’m aware of is that restriction isn’t used enough.  There is a clash between the right to life and the right to freedom and we’ll never be able to manage this clash while pretending risk assessment is accurate and that zero suicide can be achieved.  The best thing that staff can do to protect themselves is use high amounts of restriction and until we recognise this this, we can do nothing to address it. 

The proposed mental health bill does nothing to address the levels of fear in clinicians that the review identified as contributing to increased restriction.  Staff will remain afraid.  Exporting patients to under regulated private units at around £300k a year will continue to be a way to manage individual and organisation anxiety.  The cost to the patients themselves will be much higher.

Keir is the Clinical Lead of Beam Consultancy, offering therapy, training and consultation to help avoid prolonged hospitalisation of those who recurrently self harm and feel suicidal.

Many thanks to Tony @asifamhp for reading through a draft for me. :-)

Draft Mental Health Bill

Review of the MHA act