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

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

 

Should Occupational Therapists be Care Co-Ordinators?

This question popped up on social media the other week.  Over all my time working in mental health I’ve often seen this debate going on, although it’s sometimes framed Generic Vs Specialist working. 

Intrusive advert: Keir provides supervision, consultancy, training & therapy via beamconsultancy.co.uk

For those outside of the UK, or those who haven’t had the pleasure of working in mental health, it’s probably worth exploring what care care coordination is. So in the uk, people with more complex mental heath problems are seen within secondary care.  This is likely to be a community mental health team.  If you are among the most complex of the most complex you will get a care coordinator.  The mental health charity Rethink say a care coordinator will:

Fully assess your needs:

Write a care plan which shows how your needs will be met

Regularly review your plan with you to check your progress

 

Your care coordinator should consider the following needs:

Your mental health needs

Medication and side effects

Employment, training or education

Personal circumstances including family and carers

Social needs

Physical health

Potential risk to yourself or others

Problems with drugs or alcohol

What you can probably add to the above list is going to safeguarding meetings, arranging reviews and professionals meetings, being the go to person when the person you work with is in crisis – which might involve getting extra services involved, arranging an admission or mental health act assessment or staying involved once someone is in hospital.  

I spent a fair few years being a care-coordinator for people.  Mostly in a CMHT, but also in Assertive Outreach and Early Intervention.  What I learned over time was that care coordination is boring.  Not all of it, the opportunity to build a relationship with someone over months or years was fantastic.  The filling out of forms was not.  The bureaucracy and associated paperwork is mind numbingly dull.  In all my time doing these forms no one was particularly interested in the quality of them, merely that they had been done.  And the pressure to fill them in was relentless.  Not only was there the need to complete an assessment and risk assessment and crisis plan almost within an hour of meeting someone, but these had to be updated and signed by the  client every time you did a review and every time there was an admission.  Unmet Need forms needed to be completed and it seemed that for anything to happen, there was a form that had to be filled out.  There were days that I filled in forms about people that I wasn’t seeing because I was filling in forms.  It felt pointless, an exercise in box ticking and (to steal a phrase from my old lecturer “As if the performance management aspect of the primary task had become the primary task itself”.  

In stark contrast to the organisational anxiety and zeal around the completion of forms was the total disinterest of those who were in the service looking for help.  This isn’t to say that they weren’t very concerned about the quality of what they were receiving, just that the filling out of forms was something that got in the way of the work, rather than made it better.  The only times care plans became important for those I worked with was when things had gone very badly wrong.  Obviously some sort of system is required to identify problems and how they will be addressed, but for me the entire system seemed set up to demonstrate that ‘something was being done’ often at the expense of anything being done at all.  

With the paperwork out of the way (it was never out of the way, it just went further away from the front of your mind for a bit) there came the real work of actually helping people.  This could be disrupted quite quickly.  A client in hospital appealing their detention?  A 2000 word report is required.  A phone call saying a relative is concerned?  You’re going to need to follow that up.  

All the above is what my nursing, social work colleagues and I did day in, day out.  They would also do periods of ‘duty’ where they would man a phone in the office and be the first port of call for anyone phoning the office.  My memory of the spectrum of calls involved everything from a man who wanted to die to a nun who was organising a coffee morning who wanted to know if one of our patients was allowed a cake.  It was chaotic, but it was enjoyable and rewarding.  

While I was working in the CMHT there was often a lot of pressure to work differently from the rest of the team.  Despite the fact that many of those in the service had been there for years and had histories crammed full of neglect, abandonment and abuse – the OT department were keen for all the work to be done in 12 weeks.  This could be anything – anxiety management, healthy eating, linking into voluntary work, supporting to return to education….all of these and more – as long as it could be done in 12 weeks.  If part of the reason that you were in the CMHT was that you had difficulty trusting others and believed that life would always be a shit as it had been – then that was you shut out from the 12 weeks of gold.  A ‘lack of motivation’ was something to be penalised for, rather than something to be curious about.  It seemed like there was a desire to provide a primary care service within secondary care for the noble reason of….I don’t know.  There seemed to be no sense to it at all.  

So there’s a view that when things are at their best, the work within mental health is structured, consistent and predictable.  OTs often want to work in this way as it’s often the time that you feel most confident in what you are offering and you see the most benefit to those you are working with.  The problem is that pretty much everyone wants to work in this way.   I’ve never seen a social worker turn cartwheels at the prospect of writing a mental health act report nor seen a delighted CPN cancelling a group because a patient hasn’t been seen for 3 days.  Few people relish doing duty.  But….somebody has to do these things.  Some of the jobs in the CMHT are boring, soul destroying and take you away from what you’d rather do.  The question I always consider is why these relatively less rewarding jobs should be the domain of ‘others’.  I know a lot of OT’s who would say that arranging a mental health act assessment isn’t the role of an OT – and maybe it isn’t, but it isn’t the role of a nurse or social worker either.  

I have 2 concerns:

Concern the first

If we are precious about the work that we do, if we see ourselves as massively different to the rest of the CMHT I worry that we argue ourselves into being less useful than the rest of the team.  Teams will advertise for generic posts that are nurses or social workers while we exclude ourselves from opportunities to show our value.  I was in a meeting once where an OT was complaining about psychiatrists wanting people to come to them rather than going to where the others were – “It’s as if their time is more valuable than hours”.  I wanted to feed him his payslip.  OTs bring a unique contribution to the MDT but it isn’t worth any more or less than our nursing and social work colleagues.  Let’s be team players and get dirty with the rest of the gang.  

Concern the second

I work with people who are often dangerous to themselves.  At one point I think I did this quite badly but after years of duty, crisis management, supervision and time with Lived Experience Practitioners I’m now seen as someone to look to for advice and support when working with people who might die.  I’m going to suggest that this is relatively rare for an OT and I really don’t think it should be.  Not knowing who is going to come through the door is exciting.  Talking through difficulties with those who are suicidal is rewarding.  In the past my OT managers actively steered me away from doing duty and responding to whatever problem someone had at that time.  They encouraged me not to work with people who were chaotic and they gave me the message that anyone living with high risk was the domain of some other discipline.  Had I listened I could now be in a place where I worked in a CMHT with a sense that self harm, suicidality and acute mental health crisis is someone else’s job – which would be ridiculous as that seems to be the majority of the work of the CMHT.  We do ourselves no favours at all when we refuse to develop skills in some of the most pressing problems of mental health.  

In a perfect world the bureaucracy of care coordination would be minimised and we would all do the therapeutic work that we wanted.  In an imperfect world we need to help out with the work that our colleagues resent just as much as we do.  Don’t be an OT that doesn’t help the team.  Don’t be an OT who disappears when things get tough.  Consistency and reliability doesn’t always mean being in a room on time for people planning on how to hold things together.  It might mean being round their house while their world falls apart.  

Keir provides supervision, consultancy, training & therapy via beamconsultancy.co.uk

 

Many thanks to Hollie @hoppypelican, Leanne Algeo @luvlea85, Sophie and Amy Boot @amyelizaharriet for kindly looking over the drafts of this blog and giving some useful feedback.  Any errors, typos and bizarre ideas are entirely mine.  If anything is coherent or makes a modicum of sense that is purely down to them.

Risk Management Begins at Home

Keir provides therapy, training and consultancy via www.beamconsultancy.co.uk

For a while now I’ve been writing about the impact of overly defensive and restrictive practices on the people that I work with (like here and here).  The usual story that I tell is of people being at risk in the community but that risk increasing massively when in hospital.  Unable to see that the ‘help’ seems to putting the service user in greater danger, the answer is seen to be more restriction, greater security and eventually a few years locked rehab unit.  

While many people can recognise the pattern described above, it’s not something that gets promoted a great deal in services where the message of ‘doing whatever it takes’ to keep people safe is often repeated.  It was interesting then to read the Independent Review of the Mental Health Act and to see  Sir Simon Wessely expanding on these very themes right at the beginning of the document.  

My MSc dissertation (which I will publish at some point) concluded that it was fear of what clinicians might be blamed for that led to some of the most restrictive practices in the organisation.  The MHA review begins by talking about Fear – 

“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”

While it is rarely said out loud, this means that people who are in services to receive care and support, can instead be viewed as people who are dangerous to those who should care for them.  The danger is not so much about what service users might do to a clinician (although this fear is not uncommon) but what clinicians might be blamed for.  The service user moves from being a focus of support, to a threat that can damage or destroy a clinician.  It is unsurprising then that the way service users experience ‘care’ is often not perceived as kindness. 

One way that clinicians can rid themselves of any blame for the actions of those in their care is to pass the responsibility for their care onto others.  I have observed and been part of too many unenthusiastic interactions where someone has been referred for an assessment just so that someone else can make a decision (Sometimes with the full knowledge that it’s a waste of time, but at least it’s the other team that has said No rather than us).  It is dispiriting for all concerned and can too often lead to an inappropriate level of restriction because anything less restrictive ‘isn’t worth losing my badge over’.  Bethany’s dad (@jeremyH09406697) is an avid campaigner against restrictive practice and his experiences seem to echo Wessley’s sentiments 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”

I wish that the chair of the review saying that what we do to people in the name of safety is making things worse had excited the media and society a bit more.  Sadly at the time it was released we were too focused on whether to throw rocks or olive branches towards Europe.  

“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.”  

The consequence of this is that for many professionals, risk management has “slipped into ‘managing risk to themselves”.  This makes sense as the consequences for a wrong decision can be catastrophic, but to look after ourselves before the person we are being paid to care for is a perversion of our duty of care.  

Wessely suggests that this practice can explain some of the rise in detentions under the mental health act, the sterile nature of many inpatient units and some of the more baffling “just in case” interventions that can take place (No shoe laces for someone with no history of ligaturing?).  I agree with him.  He goes on to suggest that clinicians and services need help from the government and the law to ensure that ‘positive risk’ (which can often mean anything other that the most restrictive practice) is supported.  I hope this can happen, but at the moment, its only @normanlamb I ever see talking about this issue.  

Much of my work over the past few years has been around helping organisations question and avoid some of the more restrictive options available when caring for people who cope in ways that can be dangerous to them.  There’s a range of things that can be done to relieve some of the anxiety in the system and to ensure that the needs of the service user are kept at the forefront of the minds of the people involved in their care.  I may expand on these in future posts but briefly…

  • Too often decisions about how to manage someones risk are made without them.  When they are made an equal partner in decision making, most people can describe their wishes and aims in ways that can reassure people.  We don’t need to agree with people’s decisions, but if we give people all the information at our disposal then we should respect what they want and think about how to support them with their goals.  Where the service user isn’t able to articulate a view, it’s useful to have the input of an Expert by Experience who can help staff teams make sense of why people do what they do.  

 

  • We are often quite poor at giving people information.  I’ve never had anyone respond to the rationale “it’s for your own good”, but I have had people respond to genuine dilemmas where we weigh up pro’s and cons together.  

 

  • We can often have a fantasy about what ‘the next level up’ will be like.  In my experience the extra level of restriction either exacerbates the current difficulties or needs to use increasingly potent cocktails of medication to achieve the desired response.  The intensive therapy supposedly on offer is rarely available and when it is, there’s little benefit from being forced to do therapy.

 

  • Clinicians should never feel that they’re alone in making decisions.  The backing of senior managers and most importantly the service user themselves can take away a lot of anxiety.

 

  • We need to learn from the past.  If someone presents for the 20th time we need to use the knowledge that we have rather than act as if it’s the first time it has happened.  Thinking about crisis when not in crisis is essential and being able to communicate the plans we have made so that people aren’t ‘thinking on the spot’ is really useful too.

 

  • A good risk formulation can again take away a lot of anxiety.  This can help us move from “What’s the worst thing that can happen?” To “What is likely to happen given our past experience?”.  The service users I work with and I have used this to help teams see that for some, admission is likely to result in more lethal methods of coping.  Equally it has helped others recognise that after self harm is a time when the urge to harm has been reset, rather than the time to restrict.  There is little substitute for a coproduced formulation in helping everyone understand the risks and thus agree how to move forward.

There was a post on twitter recently that likened positive risk taking to clinicians neglectfully gambling with peoples lives.  I hope that people can see that this isn’t what I’m advocating.  Trying to eliminate risk can paradoxically put people in danger and we need to keep an awareness of this as we balance the need to support people with the need to keep them safe when they have lost the ability to do it for themselves.  If we can recognise when the focus of our work is protecting ourselves then we can step back and refocus on the person we are supposed to be helping.  If we can do this, the chances of our input being perceived as kindness is substantially increased.  

If you or your organisation would like to talk about how we can help with any of the above please get in touch via the website.  Keir provides therapy, training and consultancy via www.beamconsultancy.co.uk

Product Placement: Out of Sight and Out of Mind

This is jointly written by Keir Harding @keirwales and Hollie @Hoppypelican.  Please stay safe reading this.  It contains descriptions of self harm and restraint and allusions to abuse.

It’s taken a long time for us to put it together but we think its something that needs to be heard.

A story…

She places her hands against the cold window and peers through the grill into the twilit garden; the grill that traps her, obscures her view of the outside world and reinforces her cage.  The reds and pinks of dusk bleed across the manicured lawn; the progression of day to night being the only consistency amidst the chaos she lives within. Along the corridor someone is still screaming.  She knows the staff have tired of it because she hears the shouting and clattering of the care starting.

She remembers arriving; the initial feelings of safety, respite and containment that disintegrated over the days and months.  It was substituted with anxiety and frustration.  Still she wasn’t allowed to leave the cage that exacerbated her distress and eroded her last shreds of hope and resilience.   For a time she’d wanted to die but somewhere lurking in her subconscious was a desire for something to be different.  Even when things were at their darkest; when she’d swallowed down the tablets and knocked back the vodka, even after she’d written the note something inside her wanted to keep her alive.  She phoned for an ambulance even though she felt sick and ashamed. She knew she was wasting resources and she knew she was undeserving, but it took so much to pick up that phone. Utterly overwhelmed by sadness, self-loathing and desperation she sobbed as she told them. Drowsy and nauseous and to a total stranger, she gave away her darkest thoughts.  By the time she’d finished she just wanted to be looked after.  She just wanted someone to care.

When she got to the ward the ‘care’ started.  She told them she wouldn’t try again but they took her shoe laces and belt off her, then her bra. They rifled though her belongings like a Primark sale bin and anything deemed a ‘risk’ was confiscated; no explanation. Every night for years she’d listened to music to keep the worst of the thoughts at bay, but now that she was being cared for her headphones were snatched away, no recommendation of how else to keep out those intrusive barbs.  She was told she’d been silly.  She was told that everything she’d done was just to get attention.  She was told that the bed she had should have been used for someone who needed it. She was told she wasn’t ill, that it was just ‘bad behaviour’. She cried as she tried to shrink into the corner of the room.  The warm, wet tears dropped onto the blanket she’d pulled over her head.  In her mind she shrunk down like Alice in Wonderland and cowered within the Airtex cocoon.  After 15 minutes the blanket was ripped away and she was told she was attention seeking again.  It didn’t feel much like care, but they ‘cared’ for her every 15 minutes until the end of the night. The unlocking door and flash of torch, a reminder 4 times an hour that they were there, ‘caring’, watching and depriving her of sleep, the thing she longed for most.

The day came slowly with a murky light turning the dark into grey.  She’d watched every minute tick by, as between the 15 minute door clanging of the care and the shrieks of the others who were living in some other reality, sleep hadn’t come near her.  The energy of the other patients and the sudden noises frightened her.  This was not being looked after.  This was not what the care was supposed to feel like. She noticed that the other people on the ward seemed to have a very different version of care to what she was receiving. Having gone through life feeling like a pariah, this augmented and reaffirmed everything she believed about herself being different and not belonging in the world.

Conscious of her drooping jeans and laceless shoes she shuffled to the office.  She knocked gently and saw someone in a uniform catch her eye and look away again. This happened often. She knocked once more and waited for someone to come to her.  After she’d waited a while someone came along with a clipboard to give her the 15 minute care.  She explained that she wanted to go home and was told she couldn’t.  She told them that she felt different now, that she didn’t want to die, that she just needed to sleep; she wasn’t getting that here.  They told her she couldn’t go home.  She turned to walk towards the doors. She pulled and yanked at the stupid handle that you have to claw onto, it rattled but didn’t yield. They shouted that she needed to stay.  The doctor needed to see her; they made it clear if she didn’t behave she’d be made to – detained and totally stripped of liberty and dignity.

She felt helpless, like she had so often before.  She felt like a puppet; those in authority directing her moving parts and holding the control, just like before.  She was told that she’d manipulated her way into hospital and was now wasting people’s time.   With her face calm and her heart screaming, she walked to the toilet and wailed a piercing scream that vibrated though her head but didn’t make a sound.  Once again it didn’t matter what she wanted, others would make her do things, once again she didn’t matter, she was worthless and nothing.  She rooted through what was left of her things, biting the little plastic buds off the end of a hair-grip and dragging it down her arm; it brought nothing. She frantically searched for something else and found a lip balm tin.  She didn’t remember taking the lid off and jamming it into the doorframe to bend it and create a point.  She only remembered the noise stopping when she pushed the shard of metal into her leg.  She only felt that the world was right when she treated herself like the piece of shit everyone else had, when she punished herself like she was told she deserved.  She only felt like she had some control again when the pain blotted out everything and the blood let the agony flow away.

Within 15 minutes the toilet door opened, someone shouted “For fuck’s sake” and an alarm started going off.  In the tiny space of the toilet, three men she didn’t know ran towards her.  Just like before, they pinned her arms.  As she thrashed about they pulled her to the floor; she was no longer in hospital, she was transported back to that terrified child again.  She was pushed down, face to the floor, arms held, the backs of knees knelt on. She couldn’t move, couldn’t breathe, and as she fought to escape she felt her trousers being pulled down.  She screamed as loudly now as she had then.  She knew how this would end.  Broken, hurt, degraded. This pain was different.  This time a needle penetrated her buttock and as they held forced her into the floor she felt the wave of numbness wash over her.  Before everything turned to watercolour she heard someone saying that they knew this would happen.

Reality started to creep back as her body thawed but the world around her still felt hazy, like her head was full of candyfloss but no where near as sweet; this was due to the benzos she’d been forced to swallow with a thimble full of water. Made to open her mouth dentist wide and stick her tongue out and up to make sure they’d gone down. She still wanted to leave.  And they still wouldn’t let her.  She explained that she’d be okay.  They told her that people that cut themselves aren’t okay. She told them she’d only done that because they wouldn’t let her leave.  They told her she had to stay until she wasn’t going to kill herself and could keep herself safe.  But she’d thought about suicide every day for the past 4 years.  She’d cut herself carefully, with her special blade every day for 4 years.  How was she going to stop this now?  How was she going to stop it here?

She didn’t stop.  The urge to cut and get some sense of control back became overwhelming.  Without having her blade with her she did what she could to get the same relief but it became harder to do. They watched her.  They followed her.  After she smashed apart the Perspex covered display board and cut with the shards they stayed within arm’s length.  After she ripped her pants apart and tied them around her neck in the toilet she had to piss with the door open; underwear confiscated and hospital paper pants instated.  Every time they did more to ‘care’ for her she had to do something more frantic, more dangerous and with more of a chance of killing her.  Every time she did this, they did more and more to make sure she couldn’t do anything to hurt herself.  Every time she did this, three of them would hold her down, just like the men had when she was young; like them she could feel that they hated her. Every time she cut herself, they reacted as if she was cutting into them.  They couldn’t go on like this…

And they didn’t.  They told her that her personality was disordered and that she needed specialist treatment.  That her reaction to the ‘care’ was inappropriate.  That she needed to go to a specialist unit where she would be treated to get better.  She did not want to go, but to them she was voiceless, she was going, and would probably be gone for a year. Ripped away from everything and anyone she ever knew.

She’s been here 2 years now.   Things aren’t much different.  She can’t cut with anything so she tries to tie things around her neck a lot more.  She never did that when she was at home.  She’s on more medicine which is supposed to help but instead makes her drowsy.  She bothers people less when she’s sleepy.  She’s not got the energy to exercise, which she wants to do because she’s 3 stone heavier than when she arrived.  The specialist treatment she was supposed to get has turned into seeing her nurse 1:1 for an hour once a week, something she got more often at home. These sessions are not tailored to her needs and she is jammed into boxes she does not fit in; square peg, round hole.  She wants to go home but they tell her she isn’t safe.  She needs to stay in the specialist placement.  It doesn’t feel special.  She doesn’t feel special.  She feels likes she’s been forgotten and in a sense she has.  If any of the staff that worked with her previously think of her, they feel relief when they remember cutting the cord from her neck.  They think of their relief when they remember that she’s gone, not their responsibility, not their risk to contain, not their problem.  They never think of the time she looked after herself by phoning an ambulance.  They never remember that the things most likely to kill her began after they started ‘caring’ for her.

__________________________________________________________________________________________

Between us we have worked in  and received mental health services for about 30 years now.  Sadly we have lost count of the number of people who have lived the exact same story we’ve described above.   People get stuck on an acute psychiatric ward and staff believe that the only answer is a specialist placement, even if no therapy or more intensive support has been tried in the community first.  Because “Specialist Unit” is not a protected title and doesn’t come with any accompanying standards, places become such a unit by changing the sign above their door.  People are then compelled to go to these non-specialist ‘specialist placements’ to receive little more than warehousing.  Unsurprisingly things don’t improve.  Unsurprisingly, the promised one year stretches into two or more.  Between a private provider who makes money from people being on their unit, and an NHS team who is afraid something dangerous will happen and they will end up in court, there is no incentive to bring people back home.  The cost to the NHS is extortionate.  The cost to people’s lives is immeasurable.

It’s  World Mental Health Day as we publish this.  On this day, while we think of how it is good to talk and that 1 in 4 of us (at least) will experience mental health problems, let’s try to remember some other people too.   Let us try to remember the people for whom we pay £200,000 a year to keep out of sight and out of mind.  Let us consider whether life at all costs is worth forcing people to live in hell.  Let us ponder whether our care can harm people.   Those who get diagnosed with personality disorder are notoriously excluded from NHS services, either by not being allowed through the door or not being allowed out of one far away.  Recently Norman Lamb spoke of how we value containing people over their human rights.  Certainly it seems better to have them locked away so it looks like we’re keeping them safe, regardless of the evidence and NICE guidance that suggest we should do the opposite.  In a 21st century healthcare system we cannot continue with this way of responding to people who have lived through trauma.  We will not have a 21st century healthcare system if we continue to pay £1,000,000 a year to enforce the safety of 5 people.

Keir and Hollie work  to help organisations avoid the situation described above, via beamconsultancy.co.uk 

Do leave us a comment or catch us on twitter and let us know your thoughts.

Manipulation & ‘Personality Disorder’ – Dig Deeper

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

Every now and then people are kind enough to respond to some of the things I’ve written with really thoughtful stories, ideas and comments.  I’m sharing this one.  (And feel free to let me know if you’d like me to share what you think, whether it’s complimentary or not).  It’s inspired by my most read post which is also about manipulation.  If you enjoy reading it do let @sarahjaynepalgr know.

“We all manipulate. People who tend to be diagnosed with personality disorder are just particularly bad at it”. Keir Harding (2016)

Manipulation in the context of those diagnosed with personality disorder has negative connotations. Selfish, egotistical, devious, difficult; but those assumptions refer to the intent behind the behaviour. Manipulation is essentially used for survival in whatever form is required. Our children manipulate us all the time if they feel this is necessary to get what they want and depending on how we respond some may learn that this is an effective means of survival. Forming attachments becomes a risky business when a child lacks nurturing and emotional stability. Toxic parenting, neglect, abuse or indifference (intentional or otherwise) teaches a child that human relationships are untrustworthy, painful and disappointing so the negative experience of this will be carried forward into adult life and form the basis for expectations.

Something people diagnosed with PD have in common is a lack of validation of their feelings from an early age. Many have abuse in their history, sustained trauma, complex PTSD. Receiving little or no validation of thoughts and feelings creates insecurity, fear and lack of trust as a child’s personality is forming. When emotional needs are left unmet the message is ‘you are not worthy’. Layered on top of this, any further dysfunction or trauma re-enforces the belief of unworthiness until trust is an unknown feeling. Anyone who lives in fear and cannot trust will continually test any relationship to prove their belief that no-one can be trusted. When we refer to Personality Disorder we are referring to a personality that has ‘disordered’ itself in an attempt to cope with a traumatic reality. A person has an inability to manage emotions as they have learnt their lessons in life through pain and fear not love. When a person is fearful over a sustained period of time (raw fear in a child, anxiety in an adult), the fear internalises and the chemicals in the brain remain in a permanent ‘fight or flight’ response. This heightened state of anxiety causes automatic and extreme responses to stress as any situation can trigger the fear response with no conscious control, hence creating ‘unreasonable’ behaviour which others find difficult.

Very few can empathise without having walked in a person’s shoes, however we can show human compassion and understanding and refrain from judgement. We are all unique in our ability to cope and heal and if a client is triggering you, ask yourself why and what this tells you about yourself; are you are working from your ego or your heart? To label people dismissively as manipulative, difficult or with terms such as ‘it’s behavioural’, is to ignore the core issues where the answers lie. To dismiss the cause of the condition isn’t really treating it at all but does represent the way in which we approach dis-ease in general in our culture.

It’s worth pointing out also that individuals who have had to read the moods and energy of another to stay safe from a young age are very good at sensing when they are being misunderstood or patronised. Staff should be given access to regular training sessions and examine how they manage their own health and emotions to make a positive impact in the life of another. By the time service users get the diagnosis, care plan and treatment they so desperately need it may be at the end of a very long road of confusion and suffering. To engage with staff and form a relationship takes a lot of energy and effort for someone who is crippled with anxiety and afraid of forming attachments. Whilst lack of funding and adequate resources for training can always be an issue, compassion and empathy come from the heart. If we can share this we will improve service and outcomes and enjoy better relationships with those who we have a duty of care towards.

Sarah J Palgrave @sarahjaynepalgr

Views are based on my own experiences
Professional & personal experience in mental health
Reiki & Theta Healing Practitioner

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

 

 

The State of ‘Personality Disorder’ Services in Wales

 March is upon us and this is my first blog of this year.  The main reason for that is that I’ve been desperately trying to get my dissertation finished and any writing that has not contributed to that 18,000 word total has felt like a betrayal.  Anyway, it’s handed in now and it’s time to cast my eyes upon the land of my fathers as the British and Irish Group for the Study of Personality Disorder Annual Conference is coming to Cardiff on March 20th.  With this in mind, it’s worth looking at how Wales responds to the needs of those diagnosed with personality disorder and how we compare to our neighbours on the other side of Offa’s Dyke.

In some ways, Wales has been quite pioneering in this field.  While the NICE guidelines for borderline personality disorder were published in 2009, Wales laid out its own blueprint for services in 2005 calling for the provision of specialist services that were integrated into current provision.  This was echoed in the NICE guidelines 4 years later.  With Welsh Government guidelines and the National Institute for Clinical Excellence requiring trusts to provide specialist services you would assume that Wales would have ploughed ahead.  You would be mistaken…

In 2017 Oliver Dale and his colleagues undertook a review of the provision of personality disorder services in England.  They found that 84% of trusts provided a specialist service.  In Cardiff in 2016, at a conference that gathered people from all the trusts in Wales, we very quickly replicated Dale’s study.  We found that less than half of Welsh trusts (3/7) had specialist services.  This was odd because 2 had services that were recognised as being very effective while areas that didn’t have specialist services talked about “the privatisation of PD” – how those diagnosed with a personality disorder were ‘not their business’ and were sent to expensive independent hospitals miles away.

Given the potential for specialist services to reduce the amount of people sent (and they go under the mental health act so they are literally sent) out of area I began to wonder why the Welsh Government wasn’t pushing trusts to follow NICE guidelines, or even its own guidelines.  I wrote to the Health Secretary asking if he could encourage trusts to follow his own and NICE guidelines or explain what they were doing that was better.  The disappointing response was:

“I hope you will understand that neither the Cabinet Secretary nor Welsh Government officials can intervene in health boards’ day-to-day operations”

This seems to me to be a preposterous answer.  Not least because one of the Welsh Health trusts is under ‘special measures’.  This is defined as “Current arrangements require significant change. Welsh Ministers may take intervention as set out in the NHS (Wales) Act 2006.” So in contrast to the answer I received, Ministers can not only ask why NICE guidelines are not being followed, they can take intervention to remedy it.  In this case they merely choose not to.

If over half of Welsh trusts were refusing to provide treatment for people with cancer I suspect someone at the assembly would pick up the phone.  If half of Welsh trusts declined to offer services to war veterans I’m convinced someone at the assembly would write a letter.  Over half of Welsh trusts are ignoring Welsh Government guidelines and NICE guidelines for people diagnosed with personality disorder and the government doesn’t even see it as within its remit to ask why.

We can have lots of ideas about why this might be.  We could say it’s because specialist services cost money, but the evidence is that they save money by reducing the need for expensive Out of Area placements.  We might conclude that personality disorder remains a diagnosis of exclusion in Wales and that for some reason this is acceptable.  Those in mental health tend not to shout very loud for their rights to be upheld.  Those diagnosed with personality disorder are probably the most stigmatised and excluded within mental health.  They are easy to ignore, easy to forget about and potentially paying £200,000 a year for them to be sent out of area is for some reason a better option than having to work with them at home. We can do better than this.

I wasn’t particularly satisfied with the answer I received, so I emailed again.  Part of my letter said:

“I take your point that neither the cabinet secretary nor government officials can intervene in the day to day running of health boards, but I wonder if the Welsh government could avoid being complicit in the exclusion of people diagnosed with personality disorder by strongly encouraging trusts to follow its own guidance.  My understanding is that NICE clinical guidelines continue to apply in Wales so I’m curious why it’s acceptable for less than half of Welsh trusts to follow them.  Given that trusts have been sued for not following NICE guidelines would it be prudent for the Welsh Government to call on trusts to justify why they are not following the guidelines rather than have to pay the legal bills when somebody opts to take matters to court?

I welcome the extra money that the Welsh Government has put into primary care however the clientele I was speaking of tend to manage their distress with potentially lethal self harm.  This is generally not seen as a primary care role and an absence of specialist services means that they get sent to largely unsuccessful out of area placements at a cost of around £200,000 a year.  This is £1,000,000 to treat 5 people where a specialist team at a fraction of the cost could provide better treatment without the necessity to send Welsh people to England”

My response to this one was equally uninspiring.  I was told that despite seeing no role for itself in highlighting that less than half of its trusts follow NICE guidelines for a particularly stigmatised group, the government had signed a pledge to reduce stigma.  I feel like actions might have spoken much louder than words here.

I was also told “The Welsh government’s main role is to set the strategic direction for health services and hold the NHS to account”.  For me ‘Strategic Direction’ might include writing guidance.  ‘Hold the NHS to account’ might include ensuring that guidance is followed.  I’m baffled why this is the case for some areas of health but not the realm of personality disorder.

The reply finished with “Health boards must regularly review their services to ensure they meet the needs of their resident population you may, therefore, wish to consider contacting the individual health boards directly on this matter” – my interpretation of this was “We have produced guidance, NICE has produced guidance, half of our trusts are ignoring it and if you want to know why, you can ask them yourself”.  Again, this seems an incredibly vague interpretation of setting strategic direction and holding the NHS to account.

I did an experiment and opted to contact one of the health boards to find out why they didn’t follow NICE guidelines.  They replied that Dialectical Behaviour Therapy was available in some areas and that intervention was offered through generic services.  “That’s not what I asked” I replied, “Where are the specialist services that NICE recommend?”  They replied something along the lines of “We know we’re not following the NICE guidelines and we’re working on it as a priority”.  Given that it’s 13 years on from the Welsh government guidance and 9 years from the NICE guidance you have to wonder how far down the list of priorities it must have been.  There is also the worrying response that “we need additional funding to create specialist services” when the reality is that a service could be paid for immediately by not sending one or two people out of area.  If the health boards are happy to spend £1,000,000 providing treatment to 5 people for a year, why not provide therapy to hundreds of people in the community for the same money?

Frustrated and wanting to know the extent of the problem the trust was ignoring I tried one more time.  A freedom of information request asked:

  1. How much does the Health Board spend on residential treatment for people diagnosed with a personality disorder?

  2. How many acute beds are utilised by such patients who are often stuck on acute wards?

This resulted in the response:

“Unfortunately, the Health Board is unable to respond to your request for information as we do not record data on personality disorders to this level of detail.”

“This level of detail” is an interesting phase. Another interpretation of this is “People we pay over and above £200,000 per year to receive treatment in private hospitals, we don’t even record what we are paying for”.

No Longer A Diagnosis of Exclusion was a document published 15 years ago highlighting the discrimination people diagnosed with personality disorder experienced within mental health services.  15 years on, despite an early call for better service provision, the Welsh dragon must hang its head at the ongoing systemic discrimination that goes on.  This is a client group of whom 10% will die by suicide.  The National Confidential Inquiry into Suicide and Homicide by people with a Mental Illness found that none of the 10% who died over the period of their study were receiving care that was consistent with NICE guidelines.  Perhaps a high proportion were living in Wales where for some reason the NICE guidelines don’t apply or, for this client group, there is no will for trusts to implement them.

It was about 2 years ago that I asked the Welsh government to encourage trusts to follow the guidance it had written around personality disorder, let alone the NICE guidelines that apply across England and Wales.  That 84% of English trusts have a specialist service compared to our 43% is shameful indeed. It would be less shameful if we saw it as a travesty to be addressed rather than an issue to contact individual trusts about if you are interested.  I’ve asked Mind Cymru, Time to Change Wales, Hafal, Gofal and other groups with an influential voice to try to make some noise about the current exclusion of this client group in Wales.  Perhaps with the British and Irish Group for the Study of Personality Disorder Conference coming to Cardiff in March, the Welsh Government might reassess it’s position on encouraging trusts to follow its own guidance.  Perhaps it might start counting the amount of money spent on sending people to England for treatment they don’t want.  Perhaps 15 years on it might reread No Longer A Diagnosis of Exclusion and consider that the difficulties experienced by those diagnosed with personality disorder have a legitimate place in our health service after all. I hope they do.

For a petition to be considered by the Welsh Assembly it needs to get 50 signatures.  A petition that calls on the Welsh Government to implement the NICE guidelines for borderline personality disorder can be found HERE.  Please sign.

Keir Harding provides Training, Consultancy and Therapy around complex mental health problems via www.beamconsultancy.co.uk

What Does an Occupational Therapist do in Mental Health? #OTWeek 2019

I wrote this 2 years ago but this seems a good time to dig it out again…I get asked this question a lot.  It was asked more often when I actually had Occupational Therapist as part of my job title, but it’s still asked fairly regularly and often by people who are Occupational Therapists themselves.  As it’s OT week from today (November 6th), I’m going to spell out what my understanding of OT in mental health is and spend a bit of time talking about what I do.

Keir provides Training, Consultancy, Supervision and Therapy around people with complex mental health problems via BeamConsultancy.co.uk

To understand what OTs do in mental health, we need to have an understanding of what OTs do in general.  Whenever I tell people I’m an Occupational Therapist, unless they’ve seen one they generally assume I’m ‘something to do with backs’ or that I work in Human Resources. This normally leads to me disabusing them of these notions and beginning the following tirade…

We see humans as having an inherent need to act – to do things.  We can break down these actions (or occupations) into what we want to do, what we need to do and the skills we need to be able to do them.  While there will always be some overlap, an example might be that I WANT to play the guitar and I NEED to be able to go to the toilet. There are also a range of (physical, cognitive, emotional…) SKILLS that I need, to be able to manage both of these occupations.  A big factor that impacts on my ability to do these things is the ENVIRONMENT around me.  If my social environment doesn’t like the sound of bad guitar players, my progress will be hampered.  The environment will hinder my functioning.  If my toilet is upstairs and I can’t use my legs then again, the environment is not helping me to do what I need.

OTs help people to identify the things they want and need to do in their lives, identify areas where skills development is needed and assess how the environment helps or hinders people in achieving their goals.

In mental health the process is exactly the same.  I don’t think diagnosis is particularly important when we’re thinking about this, but I’m going to use it in some examples just so we have a shared understanding.

If an Occupational Therapist comes across someone with depression, the drive to do what they want and need to do will have plummeted.  They will tend to isolate themselves, thus missing out on the things that give them a sense of accomplishment (from what needs to be done) and a sense of pleasure (from what they want to do).  If we use ideas from CBT, the client loses the skill of being able to rationally weigh up their thoughts and overly identifies with negative thoughts about themselves, others and the future.   An Occupational Therapist might identify the priorities of what the client wants and needs to do and establish what gets in the way.  We can then support the client to use the energy and motivation that they have to perform the activities that will give the most reward.  We can help the client build skills in recognising and challenging negative thoughts.  We can adapt the environment so that there are more opportunities for achieving a sense of reward and accomplishment.  We can also support our colleagues by letting them know how their interventions affect the clients functioning. For example, after changes in medication, we can do something the client finds meaningful and observe changes in concentration, cognitive ability, body language, communication skills… all the things that don’t depend on symptoms, but whether the client is more or less able to do what they want and need to do.  This observation and assessment of changes in how the client is able to function can be useful to everyone involved.  I’d argue it’s more important than a descriptive account of what some has been doing.   The OT is able to describe what has increased or decreased that has allowed/prevented the person doing what they’d set out to do.

Taking Schizophrenia as another example, at times someone with this diagnosis is likely to have things going on in their mind that make focus and concentration pretty difficult.  Here we are again following the same process as above.   In this case the client’s life may well have started to deviate markedly from the lives of their peers.  They might leave school, become isolated and find themselves in situations and ways of being that result in them being ostracised by society. OTs would again look at what the client wants and needs to do and what gets in the way.  We might teach ways to drown out or cope with voices and how changes in the environment (smaller classroom sizes?, shopping at midnight?) to allow the client to do what they want and need to.  As the medication for schizophrenia can cause side effects some feel are worse that the condition itself, we would be closely looking at how other treatments affect function.  We might argue on behalf of the client that a small reduction in voices isn’t worth a 16 hour sleep cycle, impotence and an extra 4 stone.

You will tend to see Occupational Therapists doing activities with people.  This is because we think this is the best way to help people make changes.  People will engage more in an activity that they find meaningful than they will in some random task that isn’t part of their life (“I’d like you to meditate on this raisin???”). It might look like we are just doing things that are fun.  We might well be, but the purpose of the activity is to effect change in some way.  It might be the building of social skills, or exposure to something that is disproportionately feared. It might also be challenging a sense that nothing can be accomplished.  If we are doing our jobs properly, there is always a purpose.  I won’t go as far as to say that Occupational Therapy is never entertaining, but if we are only entertaining then something has gone seriously wrong with us and the system around us.

Some Frustrations with OT in Mental Health

But Can They Cook?

My colleagues are always asking if someone can cook.  We seem to get obsessed with it.  I see many OTs choosing to spend time teaching clients to make curry, going to the supermarket to buy healthy things and making sure they wash their hands enough times in the therapeutic kitchen.  Unless my client is desperate to be able to cook, I genuinely don’t care whether they can or not.  “Can they feed themselves?” is a much more pertinent question and we need to respect some of the choices our clients might make in this area, rather than enforcing some faux middle class dining etiquette upon them.  I once worked with one poor man who wasn’t going to be discharged until he could cook, when he knew full well he wouldn’t use the kitchen for anything other than making tea and toast once he got home.

I Think I’ll Ask a Nurse to Handle This

I’ve always hated other staff suggesting that critical incident decision making and complex risk management is somehow not my business.  I’ve loathed it when senior Occupational Therapists have said the same.  I’ve been in meetings where a Nurse has fed back about John’s suicidal urges, a Doctor has described his life threatening self-harm and the OT has said he came to the walking group and is eating his 5 a day.  I’ve always felt that when the challenges to mental health are so strong that people lose all boundaries, those are the times OTs should be most interested and involved.  That is when their functioning is most severely compromised. The idea that we wait until people are ‘well enough to come to group’ can make us seem (and possibly feel) useless.

 

The Primary Care Team in Secondary Mental Health Services

It fits with the above point, but I often saw the OTs getting dragged into (with full throated encouragement by their managers) short term pieces of work that barely gave time to form a relationship.  These seemed to set the clients up to fail.

“A 12 year history of anxiety?  6 weeks anxiety management for you.”

“Not left the house for a year? 12 weeks of graded exposure to solve that issue.”

So ridiculous.  I wanted to get in and help people with lifetime issues make changes over the long term.  I couldn’t articulate it at the time, but I spent hours modelling that someone could be non-judgemental and reliable, because this was the basis for everything else we might ever do together.  In more OT terms, I changed the client’s environment by modelling another way that people could ‘be’ around them.  To my Managers, it looked like it didn’t quite fit with the plan to provide some input for 6 weeks and move on.

When OTs work well, they don’t manage symptoms, they help people live.  Just like physical OTs, in Mental Health we identify and tackle what gets in the way of a life worth living.

Anyway, enough of what other OTs do.  Let’s talk about me.  For the past 8 years I’ve worked with people who have been taught that others are untrustworthy and who cope by self-harming to a degree that could well kill them. They tend to get given the label of Borderline Personality Disorder which is often very unhelpful to them and also to the staff that they work with.

In terms of the usual OT process, this can be a bit tricky.  As people are chronically suicidal and genuinely see death as a better option than living with their pain, much of what they want is simply to get by day by day.  In terms of what they want, it’s often mainly to escape from the pain. I think humans have an intrinsic need to connect with others and because the people I work with have had such a poor experience of other humans, attempts to connect can be fraught with danger.  They may have had to hurt themselves to feel they deserve help from others.  They may need to place themselves in danger so that others will show they care.  All the skills they have were designed to cope with a dangerous environment when they were defenceless children, so they don’t work anywhere near as well when the threats are significantly reduced. While they use the skills they have to manage every day as it comes, they can’t plan for the future (they feel there is no future) so they get stuck in their current situations.

My main intervention in work is trying to change the environment around people.  This often involves recognising that for them, restrictive environments like acute wards often result in decreased functioning and increased life threatening behaviour. Once we both understand why this occurs we can then help the organisation to react in a way that doesn’t replicate some of the punishing and coercive experiences the client has had in the past.  In English, this means I spot when hospital is unhelpful and try to get people out as soon as possible.  This generally results in a significantly higher quality of life for the client, as well as the organisation saving hundreds of thousands of pounds.  I will often spend time with clients to try to understand how self-harm fits into a framework of what they want and need to do.  Once it makes sense, we can help the organisation respond to that knowledge rather than to its own interpretation. For example, staff are cold towards someone ‘who self-harms to get attention’, but are warmer towards someone who experiences such crushing numbness then needs to feel pain just so that they can feel something.  I also train other staff to understand how past experiences are played out in current ways of coping, so that they react in a more thoughtful, caring way and in a way that promotes the client’s functioning.

My favourite way of offering therapy to people is via a therapeutic community.  You can hear me bang on about it here (pump up the volume or it’s a bit quiet)) but it basically gives people opportunity to practice relevant skills while being cared for and providing care to each other.  If you ever get the chance to experience working in this way you should snap it up.

So all the above is some of what OTs do in mental health.  Having said that, it might be what I think OTs should do in mental health.  And actually, having said that, some might look at me and wonder if I’m actually still being an OT.  I think I am.  I don’t see diagnosis and instead I look at how people are inhibited from what they want and need to do.  This is a useful mind-set to take into all aspects of health services, as it keeps us focusing on people as individuals rather than clusters and diagnoses.  OTs can bring much into debates about healthcare and because we are a relatively small group, we need to shout a bit louder about what we do and ensure that what we do is useful.

I hope that gives you an idea of what all the OTs in the Psychiatric inpatient Wards, Community Teams and all the specialisms in between are doing.  If might look like we’re just having fun.  And it should be fun.  But it’s also hard.  We work with people who don’t have the lives they want and we help them to get there.

Next time the OT emerges with a cake from the kitchen, remember that we were looking at all the physical, cognitive and interpersonal skills that went into its creation and in a sense we didn’t care whether the cake got made or not.  Seeing as it normally does get made, let’s blow out some candles on it now.  Happy OT Week, now go tell a colleague what we do.

Keir provides Training, Consultancy, Supervision and Therapy around people with complex mental health problems via BeamConsultancy.co.uk

            Huge thanks for input from to Anne Clarkin Occupational Therapist, Lindsay Rook, Personality Disorder Specialist Practitioner, Devon Partnership NHS Trust and a last minute piece of emergency proof reading from Kelly Johnston Occupational Therapist.

Care in the Community

This really is cheating but just to let those who follow the blog know, my blog on the importance of using forced residential care as a last resort is published by the Mental Elf today at

https://www.nationalelfservice.net/mental-health/personality-disorder/psychodynamic-programmes-for-personality-disorders-residential-versus-community-treatment/

How to Categorically Tell if Someone has a Personality Disorder (with Game of Thrones and Donald Trump)

At some point I’m going to write a great treatise on what I think of diagnosis and personality disorder, but today I’m just going to focus a bit on how the diagnostic criteria for personality disorder is interpreted and applied.  Because that’s something of a dull topic, we’re going to explore this with a few extra dragons, knights and sorceresses than your average medical textbook.

Now as an Occupational Therapist, I’m generally not that interested in diagnosis.  I’m far more concerned with the difficulties people have and the impact those difficulties have on their lives.  As a pedant however, I’m very interested in what rules are and what it means when they’re not followed.  I was particularly irked this week to read a blog hosted on the British Medical Association website saying of personality disorder “There is usually no history, just a sudden change”.

Screenshot_20170823-224243

Now this is just wrong.  If we have a glance at the DSM 5 (the big book with all the illnesses and disorders in) we can read about someone’s difficulties having ‘onset in adolescence or early adulthood and being stable over time’.  If someone’s personality suddenly changes, ‘disordered’ or otherwise, you’re better off checking for a brain injury or whether there are any recreational substances floating around their bloodstream.  That the BMA hasn’t bothered to correct anything in the blog they hosted reflects very badly on them in my opinion, however, they are not the only people I think are misapplying diagnostic criteria this week. (There’s a better critique of the BMA blog here)

Andrea Schneider has written a series of blogs where she goes through characters in the TV series Game of Thrones and identifies problematic personality traits.  I’d recommend you check them out as they’re quite entertaining, however, Andrea goes on to diagnose characters and it’s here I don’t think the diagnostic manual is being followed.  Just before we start, the entire series of GOT should have TRIGGER WARNING plastered all over it and what I write below is going to reflect that.  Here we go…

In blog 1 of Andrea’s series she diagnosis Cersi Lannister with Antisocial Personality Disorder.  Cersi is one of twins who lost their mother at an early age.  Her younger brother was identified as killing her mother during childbirth and she was taught that he was less than human, someone to taunt, hurt and insult.  Her father was renowned for his ruthlessness and cruelty and she would have seen regular examples that people who are against you should be humiliated and annihilated. Cersi had little experience of love, her biggest attachment being to her twin brother.  When their play became sexual, they were separated with guards at the door to prevent them keeping each other company at night, the message being that their feelings of love were dirty, wrong and something to be punished.  Once their mother had died, Cersi and her twin brother became closer and their sexual relationship an open secret that if not approved of, was openly tolerated.  Cersi was given the message by her father that her feelings were not important and that her value was in who she could be married to.  She was told on a number of occasions who she would marry without her having any say.

Now regardless of what we think of the term ‘personality disorder’, we would probably agree that anyone living through those experiences would grow up with some ideas about themselves, other people and the world that, while totally appropriate for the environment they have come from, would cause difficulties if they were suddenly plonked down onto the streets of London.  Cersi grows into an adult with her fathers cruelty, perhaps a paranoia that others are plotting against her, a disregard for the feelings of others and certainly some high levels of impulsiveness.  Now if someone walked into your clinic tomorrow with these features which had been present for a long time (remember the DSM!) it might be accurate to say that they fit with what the textbook describes as Antisocial Personality Disorder.  If your clinic was in Westeros (the setting for Game of Thrones) I’m certain that this wouldn’t be the case.

To visit the DSM again, it tells us about “inner experience and and behaviour that deviates markedly from the expectations of the individuals culture”.  In other words to get a diagnosis, you need to be very different from everyone else around you.  We have covered the cruelty of Cersi’s father who for example, had his son watch as his wife was raped by all the guards of the palace.  Cersi’s husband regularly raped her and made no secret of his frequent infidelity.  Her brother in law burned his daughter alive and killed his other brother.  The ‘mad king’ was busy burning many people alive, the Freys in the North were happy to massacre hundreds of people who had sat down for dinner with them, the princesses down south assumed power by killing their brother and the Lady of high garden thought it best to have the king vomiting to death on his wedding day to make sure her daughter could marry someone else.  Across the sea Daenerys is seen a a good person, but even she is content to burn people alive and crucify thousands.  When we compare Cersi to her peers can we honestly say that her behaviour ‘deviates markedly’ from what others are doing? We can’t.  She hasn’t even killed the most people.  When looking at diagnosis people often lose sight of whether a person’s behaviour is entirely adaptive given the background they have come from, or even the environment they are currently living in.  Put bluntly, if everyone has got ‘a personality disorder’, then no one has got a personality disorder.

As a slight aside, there is someone in Game of Thrones it might be possible to pin a label on and make it stick.  With his behaviour that was markedly different, with his attitudes and values that couln’t be adapted and that led to huge amounts of stress and the impairment of having his head cut off, Ned Stark is the person whose way of seeing himself, others and the world caused him the most problems.

While we’re looking at the misapplication of diagnosis, lets have a quick peek at a tyrannical leader a bit closer to home.  This time were going to hang onto the “leads to distress or impairment” part of the DSM.  Donald Trump frequently has people throwing the label of Narcissistic Personality Disorder at him.  And narcissistic he is.  Impulsive too.  But are his behaviours enough to say that he has a disorder?  Party politics and emotions aside, we need to look at the fact that he was elected President.  We need to acknowledge that whatever vacuous statement he throws out to contradict the last clanger he dropped, a sizeable braying mob will applaud, cheers and believe his lies.  He may well be a very dangerous man, but he is adored by his followers because of who and how he is.  Whatever you think of him, his way of being has, rather than caused him problems, got him into the position of being the most powerful man in the world.  God help us all.

Whenever you’re thinking that someone’s presentation fits with what the textbook would define as personality disorder, you need to consider the 3 Ps.

Are the difficulties persistent?  This was the mistake the BMA blog made.  You’re looking for issues that have been around all their lives.  Not something that comes out of the blue.

Are the difficulties pervasive?  Do they affect every aspect of the person’s life or are they limited to specific situations?  If they’re very contained then whatever PD criteria you’re trying to apply isn’t going to fit.

Are the difficulties problematic?  This is the mistake the Trump diagnosers make.  Just because you loath someone, if your loathing doesn’t impact them then its not a problem for them.  Its a problem for you.

Now this blog is very silly, but I hope it makes some serious points about how diagnostic criteria is applied.  It is by no means an argument in favour of diagnosis but just a suggestion that if you are going to use diagnoses, then at least do it properly.  If you have a look at this there’s a link to a publication from the National Offender Management Service which has all the diagnostic criterial you could dream of.  People often feel that if they can absorb this then they’ll be more effective in their work but honestly, you’re far better off talking to people and creating a narrative out of what they tell you rather than plonking a label on them.  Diagnosis can obscure people’s stories and it’s those stories that matter.  Go weave some stories together.

All the above are ideas rather than truth and many other ideas are available online.  Do let me know what you think.

Keir provides training, therapy and consultancy via beamconsultancy.co.uk