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

 

When The Help Hurts More Than The Hurting Does

This a first for The Diagnosis of Exclusion.  Normally this blog is full of the guff that spews out of my mind but this time it’s a response someone sent in to one of the earlier blogs I did.  I thought it was too good to keep to myself so – this is what it’s like when our best efforts to keep someone ‘safe’ aren’t wanted.  We can help in lots of other ways.  Enjoy.

(Obviously you can all scratch your chins and wonder whether I would have shared this if they didn’t back up the point I was making)

 

Some time ago now, Occupational Therapist Keir Harding wrote a piece on his blog – ‘The Diagnosis of Exclusion’ – about the professional response to patient self-injury within an inpatient setting. The post, entitled ‘Use A Little Restraint: Why People Who Self Harm Must be Forced to Stop’, is one I’ve found myself returning to again and again as I reflect on my own inpatient experience.
I am the patient Keir writes about, you see. I mean, I’m not – I know of Keir as a fellow Tweeter/blogger in an online environment only – but for a number of professionals in similar positions, I have been.
Way back at the beginning of my most recent, all-too-lengthy hospital stay, I was admitted for suicidal ideation – incessant thoughts of self-destruction having taken over my brain. I was hopelessly low; had almost entirely given up. I was putting myself in dangerous situations with no regard to their possible conclusion and the obsessive plotting of these scenarios never seemed to cease. I was in A Bad Place. The professionals admitted me to hospital from a very genuine, very human desire to keep me safe.
Unfortunately, hospital is not a place that makes me very safe.
Struggling to cope, in the depths of my own despair, I am thrust into the midst of 25 other people’s chaos and distress. The ward is loud; unpredictable; and occasionally frightening. I am on an unfamiliar island, surrounded by a shipwreck of strangers going through their own shit. There is little privacy; no personal space; the flimsily-curtained bed area providing limited comfort or retreat from the sounds of shouting and alarms and wailing and vomiting and other people’s private tears. It is intense. I exist on high alert; the volume of the whole world suddenly increased.
I am permanently on edge. They are worried for my safety so I cannot leave – not even for a five minute break. I am trapped like an animal in a cage and I begin to feel wild like one, untamed.
These feelings only feed the hopeless voice inside my brain. Unable to go anywhere – distanced from everything that I know – I am cut off from the tools that help me cope. If I wasn’t managing before, now there is no hope. I cannot go for a drive or take myself for a walk to put space between my feelings and me. I cannot bury myself in familiar blankets or use my sunset clock to initiate sleep. I cannot lose myself in the kitchen, cooking up a distracting kind of feast. I cannot run or swim or go to the gym for an endorphin buzz or release. The things that help weren’t really helping, but now trying is not even an option – they are no longer accessible to this locked-up me.
My head is a witch out to get me. The ward is a cauldron bubbling relentlessly. People scrutinise my every word or action, further turning up the heat.
I feel unable to escape; desperate for a moment of peace from the noise of the ward and the noise inside of me. Feeling like there are no alternatives available to me, my last resort is the only thing for which I can reach. I hurt myself – clumsily, sneakily and somewhat superficially – finding respite in the familiarity and sense of relief.
I am caught out, eventually. They have always known this to be my final coping strategy, but here, on their ward, it is no longer okay. I am in the bad books. Whether I am just deemed ‘trouble’ or they are genuinely worried about me remains an uncertainty, but whatever the motivation they decide to observe me. Now the intensity of the ward has a new dimension – a shadow constantly following; a pair of eyes, even in the bathroom, watching me. For an anxious introvert who values her own space, this is torture – completely unbearable to me. In their determination to maintain my physical safety, they unintentionally ramp up the distress levels to Beyond Tolerable within me. I cannot cope. I crumble completely.
In my crumbling, I continue to reach for the only thing that might sustain me. My self-harm is ever more secretive now; ever more rushed, haphazardly. I am snatching moments so tiny that my actions become desperate and dangerous – minimum time for maximum effect. My harm takes on a shape it has never before been.
They give this different shape a different name, when they finally make the discovery. No longer satisfied with “self-harm,” they give it a new title – label it something previously unknown to me. Words are funny things, aren’t they? I consult with Dr. Google, obviously – trying to make sense of this wordthey’ve handed me – and a whole new world of self-destruction is revealed to me.
Once I step into this world, there is no going back – the style of the old world no longer effective now this one has been opened up. I am part of this new world now … And the new world very nearly kills me. Again and again and again, it almost kills me.
There are seizures and blood transfusions; blue lights and crash-carts at the ready. There are staff who alternate between desperately afraid and desperately angry. They want to make it better, desperately. In a bid to do just that – to make me stop; to fix things somehow, dammit, please – a whole new universe of nursed-in-room; 2:1 obs and restraints become my reality. In a vicious cycle I cannot break, this fuels the very thoughts and feelings that drive this behaviour in me, and so it goes on continually.
I am a monster; a burden; creating a mess for everybody. I am vulnerable; weak; stuck under the microscope; a freak show on display for all to see. I am broken and afraid. Trapped. I am hopeless. I admit defeat.
I don’t know what to do. No one else knows what to do with me. They stick me on a CTO but don’t know how to treat me. There are rumours of a more secure clinic somewhere far away and they frighten me. I was admitted a simple case of depression with some suicidal thoughts, but now I hear words like “Complex case .. Dangerous patient .. Challenging behaviour,” whispered regularly. I do not recognise this description of me. I have no idea how it came to be.
In the nine long months I spend on this merry-go-round, I lose sight of myself completely – entirely lose my sense of identity. I don’t know who or what I am anymore and the fight has gone right out of me. The world is dark. The end seems very near and I embrace it both fearfully and thankfully.
In the end, it is luck alone that seems to slow the merry-go-round for me. Luck; a team of professionals whose intentions are good (even though their actions don’t always help me); and someone willing to take a chance on me.
It is the hope of supported accommodation that begins to break the cycle for me: a tiny glimmer of something different to try; an alternative direction, finally. It is a safe and supported setting, but with a space that is entirely mine, away from the ward’s intensity and void of constant scrutiny. It is a limited resource and a rare opportunity and, in that sense, I got so very lucky. I have no idea how or why, when many other people in many similar situations haven’t been given a get-out so freely. I don’t dare to imagine where I’d be now had I not been.
As it is, things haven’t been easy. I left the hospital with more dangerous behaviours; more ingrained self-loathing; more fears and worries; and more negative coping strategies. At the same time, I left feeling weaker; less resilient; less able to cope with the everyday; less sure of myself and my beliefs. I feel like hospital destroyed my confidence and deskilled me completely. That’s a daunting and difficult place to be.
But I can say one thing for sure: it’s a thousand times better than hospital; a thousand times better than that merry-go-round; a thousand times better than what might have been. I am here now; home; alive; and so incredibly grateful that I got lucky.
So what’s the moral of the story? I’m not sure that there is one, really – simply a single person’s experience written down to speak to you freely.
I don’t wish to be critical of my care team because I know that they make difficult choices with limited options on a daily basis and I have a lot for which i am very grateful to them. Neither do I wish to rule out the usefulness of an inpatient setting entirely – there is certainly a place for it, I believe. I guess I do wish to get those brains whirring around its therapeutic effectiveness and how this might be improved; to wonder about which behaviours we might frown upon and how we respond; to ponder the impact of the language we use; to reflect on the role of positive risk taking; and to consider how we collaborate with and empower people to find alternatives to move on..
These are not easy challenges for anyone – on either side of the experience – to face. Thank you, sincerely, to each of you professionals who navigate this minefield every day and particularly to those of you who take these moments to be challenged and reflect on how best that might be done!

Keir offers training, consultancy and therapy around complex individuals via www.beamconsultancy.co.uk

Validation – Working with People who Think the Wrong Things

After another day of training people around how to work with people who hurt themselves and find it hard to trust others (often diagnosed with Borderline Personality Disorder) I was left thinking about how eager staff are for ways to be helpful. The generic ward and community staff often have a sense that they can offer nothing and that all the skills for working with this client group lie either with psychologists or mystic practitioners of 3 letter therapies. One of the exercises we do on the day looks at how to take the heat out of situations so that people can talk to each other. We normally identify it as ‘validation’ and in all my years of working with people labelled with personality disorder, I think its the most useful thing I’ve picked up.

In the spirit of trying to be helpful to the Keir Harding who struggled to work with traumatised people 15 years ago, I’m going to go through the 6 levels of validation as outlined in DBT. While DBT is a therapy specifically aimed at those with a diagnosis of borderline personality disorder, this way of relating to people is useful for everyone. I even used this to get £300 worth of free mechanical work so this is literally a valuable tool to have in your arsenal.

Level 1 – Being present
I think in the old days we would call this active listening. Eye contact, nodding, smiling in the right places. Budding Elvis impersonators might like to throw in an ‘uh huh’. While this seems like the most obvious thing in the world to do I think back to my early career when I was doing assessments with people. The session tended to move away from a place where we could learn something and instead turned into an exercise in getting a form filled in. I’m pretty sure I’d ask closed questions so as to fill a particular box and then stop listening once said box had been ticked or crossed.
So without being too creepy, look at people with rapt attention, as if in this moment what they are saying (or not saying) is the most important thing.

Level 2 – Accurate reflection
This is where you move on from showing people you are listening to showing them that you have heard them. This can be a simple “So you’ve told me you’re upset” a more hypothetical “It sounds like you’re really sad” or “When you came in you said you wanted x”. All we are doing here is repeating back what people have said in different (but not always) words. Again, when I think of myself doing this badly, I’d get to the end of the form and say “Right then, I’ll write this up and send you a copy. See you next week” which would pretty much give the impression I hadn’t heard anything they said.  It was as if the priority was getting the form filled in, rather than tryin to understand something about the person in front of me.

Level 3 Reading
This is where validation gets more interesting as we get to use our brains a bit more. Here we are taking what someone is telling us and offering something new. “When they walked out and the house was silent, I wonder if you felt utterly alone?” or “When your friend said she didn’t like her present, I wonder if that hurt?”. Again this lets people know that you’re not only listening but thinking about them. Try to avoid telling them what they should have felt.
I think my best (worst?) examples of doing this wrong is similar to the above, where I’ve written down responses verbatim or, where I’ve told people what they should feel.
“So he ran away with my bag”
“You must have been angry”
“I was too frightened”
“You weren’t angry that he took your bag?”
Telling people they should see and feel things your way never tends to work out too well…

Level 4 – Normalising based on past experience
This is one I use a lot and probably the one I’ve done most badly in the past. This is where we show that we are not only listening and thinking about someone, but we know them too. With this we try to show people that what they have felt/thought/done is entirely understandable given their background. It’s something I like to use when people say “I was so BPD”. For example…
“I get so worried about saying the wrong thing I just don’t say anything …it’s just my BPD”
“Well you could think of it as BPD, but you said that when you were younger you used to be severely punished for saying something that your parents disagreed with. I wonder if you learned that saying the wrong thing can be dangerous so it makes sense that you’re frightened.”

Here we are trying to show that their feelings are perfectly understandable, based on what has happened to them in the past. If we don’t know their past we can be curious – “So you say that you feel worried about speaking. Worry makes me think of fear and that makes me think of something threatening or dangerous. I wonder if something has happened that has taught you speaking can be dangerous to you?”. You might get a few “don’t knows” but I’m betting you will build a better relationship with one “I expect there’s a really good reason you feel this way” than you will from a hundred “There’s nothing to be afraid of”s.

Level 5 – Normalising based on it being normal
It’s this one where we help the person who feels freakish and different to see that they’re like everyone else in the world. We take the bizarre, baffling and unfathomable and turn it into pure reason. I often find this is what many staff struggle with and when they can’t understand, they make their own interpretations as to why people do what they do.  To use a real life example …
“I want to go on leave”
“We’ve sent you on leave a few times but you just sabotage it” – might possibly be better framed as:
“when you’re home by yourself you get frightened and desperate, so you cope by doing what you normally do when you’re scared. Everyone does what they can to cope when they are desperate.”
Or
“I get scared that I’ll be on my own forever”
“I think everyone would find the idea of being alone forever fairly scary”

It is in this area that I excelled in invalidating people. I’d learned some CBT on my travels through mental health and I had an obsession with challenging ‘thinking errors’ and ‘negative thoughts’. I would have seized the above statement and tried to convince them that they were wrong to feel what they felt. I’d ask what there was to be afraid of, I’d ask what was so bad about being on their own. I think I would tend to keep going until they felt stupid and ashamed for thinking what they did. I’m not proud…but (sadly) I am certainly not alone in making this mistake. One of the interactions I regularly see in services is someone saying “My life is so shit” and the other person leaps in to tell them they’re wrong.
“I want to die, I’ve got no money, everybody hates me and I’m never going to go out on my own”
“But Rachel, yesterday you were laughing at Simons joke, and this morning you made a cake and said you’d enjoyed it”.
This rarely makes people suddenly believe that their life is worth living and it certainly convinces them you don’t understand.
“I want to die, I’ve got no money everybody hates me and I’m never going to go out on my own”
“I can hear how much you want things to be different. Most people would despair at the idea of being hated and dependent on people”
The other common one I used to do a lot was “I’m never going to get better” at which point I’d leap in with gusto (because remember, my patient not getting better is an explicit criticism of me) ranting “But you’re doing so well!!!” To make me feel better the college lecturer would nod and agree when I told him he’d caught a bus by himself and stayed in the busy shop for a whole hour. In reality I had totally dismissed what he was feeling and instead put some work in to make myself feel better.
It is useful to challenge people but for most, and certainly the group I work with, people hear you louder if you can validate what they’re saying first.

Level 6 – Radical Genuineness
This is the master level of validation that only the true mental health ninjas can achieve, although in essence it’s not that hard. Once we have shown people that we are listening, hearing them, thinking about them, shown it makes sense given their experience, shown it makes sense given the rest of the world would feel like that too, – then we can take the final step, “I would probably feel like that!” or even “I have felt like that”. This can be as simple as:
“When they said I couldn’t get any leave I was fuming and just trashed my room”
“If I’d been planning something all week and someone told me it couldn’t happen I’d be pretty angry too”
Or it can be a bit more personal…
“Its so unfair, I just want to go home and they said they’ll section me if I try to leave”
“My daughter was in hospital once and the consultant said we could take her home. He went off shift and the physio said we couldn’t take her until the Dr said it was OK. Knowing it had been agreed I wanted to discharge her ‘against medical advice’ and the ward staff told me they’d call social services if I tried to take her. I know it’s not the same but I understand some of that feeling of being trapped, threatened and it being unfair.”
It’s possibly my own reading of radical genuineness, but i think there is a value in being, well, genuine with people. I think back to the times when someone has told me of some weekend that Stephen King and HP Lovecraft couldn’t have imagined if they’d had a month together. I’ve nodded along as if tales like this are all in a days work for a consummate professional like me when inside I felt like a cartoon of a shocked man. It might well have been more useful to convey the horror of what they had told me. When it seems helpful I now tend to drop in the odd “If that happened to me I think I’d be terrified”, “I can feel myself filling up as you’re describing that” “I’m trying to listen to you but I’m so worried about what you’ve told me I think I’m going to be useless to you until you get medical attention and my anxiety comes down”.  Non verbally I might wince when someone describes something painful.
The other obvious element of GR is that if you can do something to make the situation better then you do it or at least be really explicit about why you’re not. I’ve known people who were desperate to be admitted to hospital be told that they won’t be admitted because it’s not in their best interest. End of explanation. Either acting, or giving a detailed pros and cons of why you are not acting is a lot more validating than giving the message that they are wrong to want the things they want.

So those are the 6 levels of validation. I find myself using them most when meeting people for the first time and when the situation is becoming heated. Very often I’ve seen someone go up to a member of staff and shout at them. The staff member shouts back. They shout louder and a few minutes later there’s a wrestling match going on for which the staff have a numerical advantage. I’ve seen people shout at staff and the immediate response is that “You can’t talk to me like that”, which is a valid point, although a debate on the niceties of social etiquette is not something anyone whose emotions are dialled up to 11 is ready for.
“Youre a F***ing C*** you are!!!”
“You seem REALLY angry, can you help me understand what’s going on for you”
Or
“You seem really angry at the moment but when you shout at me my anxiety goes through the roof and I can’t think. Can we both take a breath and think together about what’s going on ?”
And you can wrap up with “If that happened to me I think the other person was a bit C***y too”.
In other blogs I’ve talked about wanting to ‘win’ interactions with people. Validation is not about ‘winning’, but giving the people we are talking to the clearest picture possible that we are there for them. When I’m doing training, at some point someone says that we can’t just validate everything. There are limits. Lines have to be drawn. And this is true, there are behaviours that can get people in trouble with the police, hurt people and destroy relationships. We do not validate the behaviour we find unacceptable, but we do validate the motivation. We don’t validate the assault but the anger. We don’t validate the overdose but the hopelessness.
The other question that comes up is whether or not we can challenge people. Of course we can. Most of the people I work with have been repeatedly abandoned so theyre always on the lookout for signs its about to happen again even when the staff are really invested. While being told how much I hate the person I work with, I’ve found a Monty Python style “Oh no I don’t” usually isn’t going to cut it.
“To be honest, I do get a bit frustrated when you interrupt me, but I wonder if I can be slightly irritated sometimes and enjoy working with you as well”
Or
“I can hear you think I hate you. I wonder what I’ve done to make you think that?”
Or
“You seem upset and angry with me. I expect I’ve done something that’s led you to feel that way. Can you help me understand what it might be”
The consistent thing with all those examples is to validate first. Once they know we’re listening we can offer something else. That might be a direct contradiction or it could be a synthesis of ideas:
“I’ve got nowhere”
“I know you feel stuck and that nothings good enough, but I wonder if two things are true, that your standards of success are really high and you haven’t changed as quickly as you wanted”.

So there is validation in a nutshell. It is not rocket science. It is barely paper aeroplane science but it is something that can easily slip when we’re tired and the work is hard. I forget a lot but I tend to be at my most effective when I’m using this a lot. I think this would have been useful to me when i was first starting out in the NHS. I hope it’s useful to you.

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

Use A Little Restraint: Why People Who Self Harm Must be Forced to Stop.

Lets start by saying that I self harm.  I self harm regularly in a way that society tends to approve of.  Most Saturdays  I strap on my rugby boots and on a good day,  for 80 minutes large, hairy men will charge at me while I try to knock them over.  On other days I am punched, stamped on, scraped with studs, or just hurt.  Over the years I have broken my nose, chipped my teeth, ripped the skin under my chin open, split my forehead and all last week, sported a big purple eye.  I play rugby every week, not seeking pain but knowing full well that it is inherent in this activity.  The pain and damage that it gives me is worth it in terms of the other benefits that I receive. Now obviously playing rugby isn’t the same as cutting lines in my thigh, but I’m arguing that that both activities are on a spectrum of things that damage you but come with some reward that makes it worthwhile.

Now its interesting that nobody cares about my self harm in the slightest.  In work I spend a lot of time with people who regularly self injure, where others aren’t that bothered about their self harm either.  At work I try to point out the link between self harm and suicide, offer to help and support people who want to stop and encourage them to care for themselves in ways that don’t involve hurting or punishing themselves.  I never forcibly stop them. The people I work with all live in the community and can make informed decisions about how to live their lives.  If they want to stop self harm I’ll  do my best to help.  If they don’t I’m  still there (although I might let them know how I’m  affected by it).  Self harm is their understandable way of coping which they do because it works.

On the ward, it is a different story.  The people I work with tend to have long standing thoughts of suicide.  When that chronic risk becomes acute they might be admitted.  What is interesting is that it becomes an unspoken part of someone’s care on the ward that they must immediately stop all forms of self harm.  It doesn’t matter that self harm wasn’t a factor in their admission, it has become one now.  Usually the acute period of suicidality passes fairly quickly, but because those who have self harmed for years have suddenly lost their only way of coping the risks go through the roof. Those who cut carefully with blades are ripping cans open, smashing crockery, banging their heads on the wall and (potentially most lethally) tying things around their neck in a quest to get whatever benefit they usually receive.  It is at this point the person tends to want to get out of hospital asap and it is at this point that the enforced self harm abstinence really comes into its own. While the client articulately tells people they don’t want to die and just wants to go home, we can’t let them go until they fit our model of wellness, which tends to involve them presenting with healthier coping methods than they have used in years. 

With people who don’t want to stop self harming (and weren’t admitted to do so) psychological intervention to help them stop rarely works.  Instead we prescribe different intensities of observation ranging from being checked on once an hour to being followed constantly by 1 or more staff.  At times we can administer a PRN dose of heavy staff to physically stop whatever behaviour we find intolerable.  As the risks increase the number and weight of the staff rises proportionally and eventually we decide that the only solution is large staff in an environment far away from us.

We can wonder about why MDTs need someone who has no intention of stopping self harm to be self harm free before they are discharged.  We can spend even longer wondering how a period of stability can be achieved when long standing coping mechanisms are forbidden, everything is scrutinised, no leave or time alone is allowed, any emotional response to this treatment is written off as part of the diagnosis and if you do try to hurt yourself in a way that no one would have batted an eyelid at in the community, 3 heavy men will hold you on the floor in a vague reanactment of one of your most traumatic experiences. 

Looking at this rationally we can see that if you want to seriously upset and disregulate someone, following the above “care”plan might well be the perfect way to do it. 

 

Its worth thinking about why situations like this come about.  I hear others say that they are kicked off the ward as soon as they self harm but for some clients, ward based self harm is more effective at keeping you on the ward than locking yourself in the nursing office.    It makes sense that we let people make their own decisions about how to manage their distress in their own homes, but why do we have to forcibly prevent them on the ward?

There’s two main factors at play for me. The first is that the majority of mental health staff come to work to make people better.  Our training prepared us for people who would come in with simple problems, we would dispense our wisdom and they would recover and be grateful.  It is almost impossible for staff to look at someone under their care bleeding profusely and feel they are doing a good job.  Stopping self harming is a kind of recovery and if people won’t get better, we will make them better.  I’m sure this starts out with the most caring and compassionate motivations but after a few weeks of wrestling much of the empathy will have evaporated.

The second is how painful it is to see someone hurting themselves.  There is the immediate visceral impact of seeing damage occurring, the emotional reaction to seeing someone in so much distress and the psychological trauma of watching someone causing damage to themselves. When we combine people who see their role as preventing harm with people who use harm as a way of coping we manage to whip up a perfect storm where the more we help, the more abusive we are perceived. Given no obvious other way of helping we do everything we can to prevent harm occurring and lose sight of how much added distress, trauma and risk our help is causing.  Regardless of the clients wishes, we will join the long list of other people in their lives who forced them to do what we wanted.

I see the above frequently and I suspect it is replayed across the country. I worked with a man recently who was only ever violent when he was in hospital.  He was no longer suicidal but couldn’t be let off the ward until the behaviour that only occurred on the ward had stopped occurring on the ward.  

My solution is for organisations to have a team to think about these complex dynamics that are so hard for us to see when we are caught up in them.  The NICE guidelines for borderline personality disorder describe teams who support the organisation to formulate, assess and respond to complexity and risk in thoughtful ways.  A 3rd mind that can ask the question “Why do we keep doing this when it makes it worse?” can be invaluable.  

So often I find that staff caught up in these situations are utterly miserable.  They can see that they are actively harming someone with their help but feel powerless in a system that knows only higher levels of restriction in response to risk.  In my ideal world admission would rarely be used and when it was, the benefits/costs would be thought about beforehand.  At the very least on every care plan we would rubber stamp “do not detain in hospital for behaviour we wouldn’t consider detention for in the community”. In models of organisations that work with people, a strong emphasis is placed on the value of a thinking space.  I regularly hear that this can’t happen and that action is valued much more.  If staff can’t be given space to think and reflect then specialised teams might need to do their thinking for them.  This might involve changing the culture of the organisation so that risk is thought about in a different way.  I have 2 fears.  One that this will only begin to happen after someone who is far more dangerous as an inpatient accidently kills themselves on the ward.  My other fear is that this happens time after time and we still can’t learn from it.

Now blanket approaches to managing risk are rarely successful and its most beneficial to think about everyone individually.  I’m not advocating for inpatient environments where anything goes, but for thoughtful consideration of how people respond to an environment and how we respond to their presentation.  If nothing else, let’s think about our role in someone’s change in presentation. Most importantly, lets ensure we are never a part of someone being sent miles from home to be forced to stop something that was never a factor in their admission.

All thoughts appreciated @keirwales

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

 Much of this was inspired by a conversation with @graffiticymraeg who’s blog https://themainoffenderblog.wordpress.com/ is far better than mine

All the above reflects themes expressed much more articulately in The Ailment 

https://www.google.com/url?sa=t&source=web&rct=j&url=http://www.ljaa.lv/download/dokumenti/the_ailment_by_t_main.pdf&ved=0ahUKEwiHwLmDx6nSAhUhLMAKHRoqDcYQFggaMAA&usg=AFQjCNGrZVjErJGBfwhJE2BxcI7ug01wrQ&sig2=-tsrJcsIbiSxsXYXIKp5Vg

Helping Only Makes It Worse

I wrote this a while ago when the A Day In My Head project was collecting diary entries for a book on mental health. As our computers refused to speak to each other it didn’t make it into the book but I thought I’d share it just to describe some of the agonies that work can bring up.

To give a bit more context than the original word count would allow, we were doing Dialectical Behaviour Therapy. This is an intensive therapy that aims to get a life worth living for people who have difficulties managing strong emotions. As part of starting therapy a few things are agreed with the client and therapist before you can proceed. The one that is most relevant here is the agreement to make every effort possible to give up (or seriously reduce) things that might kill you. The main idea behind this is that therapy doesn’t work if you’re dead. DBT ‘demands’ that things that might kill you are what the session focuses on if they’ve happened in the past week. Due to my feeling (which she didn’t share) that she was repeatedly putting her life at risk, thats all we had talked about for some weeks. This might sound harsh. It certainly felt harsh. What I had to remember was that DBT is an evidence based therapy that we had both freely chosen to try…

I came home from work today feeling useless. I’d been working with someone whose partner has been repeatedly violent to her but she wants to maintain the relationship. She’s keen to get help with her suicidal thoughts, self harming, substance misuse, low self worth and anxiety. She doesn’t accept these issues might be exacerbated by the person you love kicking you around the house. It’s really hard to be in a job where you’re there to help someone, see them suffering, offer help but get told that you can only help with the symptoms rather than the cause. It’s as if she’s got her hand stuck in a mousetrap but only wants help with the pain rather than help to get the trap off. This puts me in something of a dilemma as I either need to pull out and invite her to come back when she thinks her relationship is a problem, or I stay involved and give the impression that you can get a life worth living while the person who lives with you tells you how shit you are and punishes you when you fall below his standards. Which is often. And the standards vary.I feel quite callous when I’m weighing the options up, mostly because I really care about her and hate to see her opting for a life with so much guaranteed unhappiness in it. I know that making changes is frightening. I know that people have always hurt her, so why should she believe things can be different? I also know that she takes massive comfort from SOMEONE choosing to be with her, regardless of how she’s treated. People have suggested that it’s unreasonable to ask her to choose between him and me, but in a sense that’s not what I’m asking. I want us to agree that wanting to live with someone who hurts you is a problem and I really want to help with that. That doesn’t mean that she has to leave tomorrow, but it does mean that a life without a resident abuser is a goal to aim for. As it is, she is really keen for therapy to continue, as long as it focuses on things other than her relationship. This leaves me with a dispiriting choice. On one hand I can stick with her, see the evidence of her assaults, hear her suffering and pretend I can help her feel better about it, which will leave me feeling like shit. On the other, I can tell her that I can’t help her to suffer less with the life she’s chosen, but I will be there to help if she ever wants a life without an abuser in it. She will feel abandoned, and I will feel like shit. It’s a difficult job sometimes. I tend to go to work to help people, so watching them suffer or leaving them when they’re suffering doesn’t feel at all good. In fact it makes me feel quite bad at my job. Rather than abandoning her, I’ve carried her around in my head all evening wondering about the ethics, the effectiveness and the outcomes of both courses of action. The logical part of me wants to respect the choice she’s made and let her get on with it. The emotional part of me wants to rescue her, to help her, to keep her safe. It goes against almost every part of my being to leave someone in that situation. I’m sure “you have to be cruel to be kind” has justified some brutal behaviour towards people in the mental health world. In this case I do feel that telling her why I can’t work with her now but would work with her in future if this issue changed is the thing that would give her the best chance of a better life in the long term. What will be painful for me (and her) is telling her and following through on it. It would be so much easier to just hang in and hope things change. There’s a bit of me wondering why this is what I chose to share. I think I want people to know the impact that the work has, that we don’t skip home at 5 o’clock, that we think and feel about what we have and haven’t done during the day. We talk a lot about compassion in the NHS, but being compassionate isn’t always doing what people ask for.

I shared an abridged version of this story while having a conversation about people experiencing domestic violence being intensely miserable on mental health wards. Staff acted as if they were ill rather than having a natural reaction to prolonged suffering. I got the feedback that I was a misogynist with a worrying attititude towards domestic violence. I’ve thought about that comment a lot and it’s probably done more than anything else to inspire me to write this down. In truth I’m not sure if this vindicates me or makes my hole a little deeper. Perhaps it’s worth adding that if I had done what I think would have been most useful (stopping working with her until she agreed that living with someone who might kill her was a problem) she would still have had support from the CMHT, she would ‘merely’ have lost a therapy that prioritised getting things that could kill you out of your life.

I wish there was a nice tidy ending to this story. In the end I changed jobs and she transferred to another therapist. I don’t know how life turned out for her but in my head when I think of her I tend to see her smiling before being beaten. I’d like to think that things turned around but thats purely based on hope. There’s nothing I can hold on to that suggests things would improve. She’s now one of the people I carry around in my head. I wonder what has happened to her and whether I could have been more helpful. Helping someone to stay in hell seems wrong while leaving them there to burn in the hope it gets too hot seems wrong too. Maybe sometimes  there just is no good option…

Let me know what you think,

Keir

@keirwales

You can get the full book of A Day in my Head packed with many better entries than this here-

A day in my head
by Aron Bennett
Link: http://amzn.eu/e4YRwJM

Why are people with Personality Disorder so manipulative?

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

Those diagnosed with personality disorder are manipulative.  This is a fact.  At least, you would think it was a fact if you heard it as many times as I have coming from the mouths of people in the caring professions.  Whenever I’m doing training on personality disorder, there is rarely a session where this fact isn’t voiced at some point.  When it does come out, it isn’t spoken in a timid, tentative way, but with the full throated confidence of someone speaking a truth universally acknowledged.  It is a fact as certain as death and taxes, and because people are so assured that it is a fact, the presence of a service user with a diagnosis of personality disorder in the room does nothing to encourage them to censor their views.

I’m going to spend some time thinking about manipulation, what we might mean by it and whether this is another way of interpreting behaviour in a way that might help carers keep caring.

 Most definitions of manipulation use the terms like clever, skilful or artful, implying a conscious use of talent on behalf of the manipulator. Based on this definition, we all manipulate the people in our lives in that we consciously try to get them to do what we want.  Being good manipulators, we hope to do this while keeping people liking us.  This is the skill.  It is not the forcing of our will onto others but being able influence people while keeping them on our side.  The problem that people with personality disorders have is that they are awful manipulators. Very often in my life women who are older than me tend to mother me.  If I look a bit flustered or helpless, they will frequently step in and do things for me that I’m perfectly capable of doing myself.  At the end of it, we all tend to like each other a bit more.  I’m in their debt and they feel they’ve been useful.  You can argue that this is a skilful bit of interaction, but based on the definition above, you could also argue that I’m manipulating people.  Let’s contrast this with me walking into the office and shouting “If someone doesn’t give me a lift into town, I’m going to fucking kill myself and it will be your fault.”  I have no doubt that the people in the office would indeed take me into town.  Whether they would ever want anything to do with me in the future is another matter.  Again, lets have a think about what might be the actions of a skilful arch manipulator, and what might be someone with really ineffective ways of getting their needs met.  A good manipulator gets what they want and people like them.  A bad manipulator gets what they want and people resent them.

It wasn’t a million years ago that I shared the ‘personality disorder = arch manipulator’ view. I used to work in a team where at least once a week a man would phone to tell us he was suicidal.  What followed would invariably be a 30 minute phone call where I desperately tried to get him to tell me he would be ok.  He rarely did.  Every suggestion of what to do had already been tried.  Every option had been explored and found wanting.  It said on his careplan to phone when he was suicidal and here he was phoning.  Now what was I going to do about it?  The answer was always nothing particularly useful.  While I was being berated for my incompetence I tended to feel powerless, useless and for someone who came to work to make people better, pretty bad at my job.  It would be fair to say that I hated the way he ‘made’ me feel and I know that many of my responses on the phone were far more about me trying to ‘win’ than they were about trying to provide care.  Because he had phoned weekly for years, I knew the actual risk of him committing suicide was pretty static and that the phone calls didn’t reflect a significant change.  In my head this guy was sat at home planning different ways that he could torture me.  I saw him rejoicing in my discomfort, raising his fist in the air (as I did) when he felt he’d refuted an argument and hanging up the phone after a particularly vitriolic exchange happy with a job well done.  My team were very helpful in supporting me with my view of him and we would have many conversations that built up a picture of someone whose sole pleasure in life was my misery.

It’s hard to be particularly caring to someone who at best, I wished would leave me alone.  Because I took the majority of his phone calls, I sought out some supervision to help me manage what I viewed as a cruel individual.  The supervision was not an enjoyable experience as rather than help me to manage a trouble maker, the supervisor started pulling apart the foundations of the power crazed manipulator I had built up.  He asked me what the service user was looking for when he called and what in his life might explain the way he interacted the way he did.  He got me to see how unhelpful the picture I had of the client was and even worse, how I might be exacerbating and maintaining some of the very things that did my head in.  That was the first time that everything I thought I knew about ‘personality disorder’ had been challenged and now I reflect on it, the first step towards me choosing this area for my career.

The point of the above is that I can sympathise with the view that people diagnosed with personality disorder are manipulators and it’s a view that I’ve held myself.  Now let’s try a different way of looking at things.

Within DBT (Linehan 1993) manipulation would be viewed as poor interpersonal effectiveness.  Most of us come from a background that helped us to be effective.  We know how to get our needs met while keeping people on our side.  We know that when we raise the intensity of our communication by being more assertive or even hostile and rude, we run the risk of damaging the relationship with that person.  We generally know that if we need help someone will do something and that we can say no to requests that are unreasonable.  People who tend to be diagnosed with personality disorder haven’t come from the same background and as a result, they don’t have the same skill set as the average person in the street.  They might have come from a background where your needs were only met if you screamed blue murder.  They might have come from a background where people modelled that threats and violence were the only way to get people to do what you want.  They might have only been cared for when they were physically hurt or they might never have been taught to put their feelings into words.  They might….and on and on.  The gist of this is that we will see peoples past relationships in their present ones if we look for them.  If we look hard enough, we can see how people have been taught to interact the way we do.  If we’re being brutally honest with ourselves we might see how what we do keeps some of these problems going.  If we only spend time with people when they’re in crisis, if we only increase input when they self harm or we reduce our contact as soon as they’re ‘doing well’,  we can be playing a big part in keeping some of the more difficult to manage behaviours going.

It might also be worth thinking about splitting, where “people with personality disorder ‘play staff off against each other’ and form special relationships with particular carers”.  Splitting in teams certainly happens but I wonder if us staff ignore the part we play.  Instead we blame the client and think of them as an evil puppet master, pulling strings that ‘make’ us act.    Now I come from a background that taught me I was loved and valued.  Despite this I tend to gravitate towards people I perceive as warm, friendly and interested in me.  People labelled with personality disorder have the same tendency.  When in a frightening place it makes sense for them to particularly attach to staff who show the most warmth or have some characteristic that feels safe.  It makes more sense to strengthen that relationship by giving gifts, telling secrets and ‘being good’ for them.  Those staff care.  They need to be hung on to.  The relationship can also be strengthened by distancing yourself from people who are more cold, apathetic, hostile or just different.  By being difficult for the ‘other’ ones or only working with the special ones the special relationship is emphasised . This isn’t a cold, calculated endeavour to cause chaos, but a natural response from someone whose early experience of carers was different to our own.  In The Ailment, Tom Main (1957) gives the example of a baby crying in a room full of people.  They will compete to sooth it and some will succeed.  In an innocent way the baby evokes some rivalries in the people around it.  It might become distressed by these rivalries and might even make them worse in the quest for comfort.  While the baby hasn’t caused the rivalry (or split), its behaviour which draws in some while pushing away other inflames them.  The baby (fairly understandably) is pretty poor at managing the people around him but he does the best with what he has.  The split isn’t his fault. 

We can also think about what gets called personality disorder as a difficulty in managing strong emotions.  Often people with this label were never taught to manage their emotions, they had people in their lives who modelled ineffective ways of coping or they learned that only intense expressions were effective.  When on the receiving end of these powerful emotional communications it’s important to remember how well we are able to think when we are at our most frightened and angry.  When working with those who have been taught that the world is out to hurt them or those who are terrified at the prospect of being left alone, it is understandable that strong emotional responses will be a part of many of our interactions.  When angry or afraid we all want to manage the immediate threat and pay less attention to what happens in the long term.  If we can view people as feeling threatened or terrified, if we can understand why they might do all they can to achieve a short term goal again, it is harder to keep that picture of a skilful arch manipulator. 

We started with a picture of people diagnosed with personality disorder as calculating master manipulators.  We’re now at a place where we might see that some behaviours are exaggerated natural responses while others are the product of poor interpersonal skills.  We might substitute the idea of people intentionally causing chaos with people doing the best they can with what they’ve got.  Holding this in mind is essential for keeping some care in the caring professions.  It is nigh on impossible to care for someone who you think is deliberately trying to hurt you simply for the pleasure it will give them.  If we can ask ourselves why the client communicates in this way and find an explanation in their past then we can keep empathy.  While we have empathy, we can show compassion.

We live and work in busy times.  There is little time to search peoples records for clues from their past.  Action is valued, reflection looks a lot like doing nothing.  We do little good for our clientele when we act without empathy and yet the pressure to act on what is in front of us is immense.  Perhaps next time we feel that pressure to act we might do it with a person who has missed out on some of the skills we have in mind.  We can notice the sense that we’re being manipulated and wonder what that might mean in the context of an unskilful person trying to get their needs met.  It doesn’t mean that our actions will be different but it might mean we might communicate in a more caring way.

We all manipulate.  People who tend to be diagnosed with personality disorder are just particularly bad at it. 

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

Linehan, M. M. (1993). Cognitive Behavioral Treatmentof Borderline Personality Disorder. New York: Guilford Press.

Main TF. The Ailment. Br J Med Psychol. 1957; 30:129-45.

 

As ever, all of the above is just an idea to play with.  Don’t take it as fact.  Other ideas are available...

 

Suicide Aint Painless

So its suicide prevention week (or month or day, depending what hashtag is being used at the time) and there is much talk of how to help people who feel suicidal. There are lots of people speaking about never having had any training in this area, and lots of service users saying that the response they have had has been awful. As someone who has been responsible for some awful responses in my career I thought I’d share some ideas around working with suicide. Now I’m not suggesting that this is THE way to work with people who are suicidal, I’m not even saying that it works. What I do find is that having these tools and ways of thinking in my head makes me more confident and capable of working with someone who is telling you they want to die. Do excuse the arrogance and I’m sure there are better ideas out there which I’m eager to hear.

Learning The Hard Way
My big introduction to working with suicidal people came when I started doing duty in the CMHT. We had someone who phoned around once a week to say they had lined up their tablets on the table and were going to take them all. I then took on all the responsibility for keeping then alive and got panicky when they couldn’t assure me they would be alright. Very often the conversation ended with them hanging up because they were so frustrated with me, me calling an ambulance to go to their house and sometimes both. It was in the CMHT that I started to pick up the idea that suicide was someone else’s business. One whiff of suicide and I could free myself from any anxiety around being responsible for them by packing them off to A&E or calling in the crisis team to take them off me. While this solution worked wonders for me, it did little for the service user who would tend to be passed around a range of services and sometimes be sent off to a placement miles from home. This was partly to address their suicidal tendencies and partly to do us the great service of not having to worry about them anymore.
I started thinking differently as a result of working in a day therapeutic community for people with personality disorder who were frequently suicidal. This got me used to staying with people who wanted to die but trusting the group to help, not feeling that I needed to fix it. I went on to do DBT and spent a few years working with highly suicidal people and people who manage their distress in ways that are potentially lethal. I think back to the naive practitioner sitting on duty and hoping the phone wouldn’t ring. In a way, this is a gift that might have helped him be more useful. Again, I’m not saying you have to do this, I’m not saying that it will work, I am saying that the more tools you have in your box the more comfortable you will be. Regardless of the effectiveness, feeling more confident might be enough to keep you going.

“I’m having suicidal thoughts…”

Find out what they are. Asking won’t make it worse.
If they’re being vague, let’s get some clarity – “When you say ‘It won’t matter or I won’t be here’ it makes me think you’re going to kill yourself. Are you?”
What are you going to do?
When are you going to do it?
Often I find that being able to talk about the horror that’s in their mind is enough to reduce their distress.
Once we have the What and When of what’s in someone’s mind we can start working on the Why. If we think about suicide being the solution to a problem, try to understand what the problem is.
Sometimes I will use the words above but something like “Can you help me understand why being dead is appealing?” “What would being dead be better than?” “What is so unbearable at the moment that means being dead would be useful?” can be used. You can probably put it better…
Start building hope – “It sounds like it’s this issue and the thought that nothing will change is what’s behind your decision to die. If that issue could be changed would you feel the same way?”
Give examples of similar situations which have changed (or ask them for some).
Don’t solve the problem for them but try to generate alternative solutions to deal with the issue.
Ask if they have felt this way before and gradually felt differently – “It is worth making a literally life changing decision when you’re feeling a way you don’t always feel?” or “You felt this way x months ago, then had y time where things were bearable. Might you feel differently in a few days like you did last time?”
A desperate one – “You have felt like this for x years. We have been trying to change your life for y time. Can we really undo x amout of problems in y amount of time? Can you give it a bit longer before you make a final decision?”
All the above can make a difference. I suspect it’s less about what you say and more about helping someone feel listened to. If your input finishes there you’ll tend to feel pretty good. If nothing has changed you might want to try some things that make you feel a bit meaner.
Attack their rationale for dying.
“I want to be at peace” – What if the afterlife is worse? Some people believe in hell, what if that’s true? What if those ghosts people report screaming and wailing is what death is all about? “We don’t know what it’s like when we die. There’s no evidence. Taking your own life is a gamble. It’s worth gambling if you’re a lucky person…..Are you a lucky person?” (People often cry at this point)
“They’ll be better off without me” – They will not. Almost everyone I work with has had massive trauma in their lives. I will end up working with them if you kill yourself. You know how you blame yourself for everything? They will do that. Their risk of attempting suicide will more than double if you kill yourself. This hell you’re in now, you will be putting them in that.
It can be helpful to describe the horror of a dead body if there’s a chance people will find them. “Do you want their last memory of you to be your purple body covered in blood and sick? Don’t think you will be falling into a peaceful sleep…”
Alternatively – “Are you going to let them win? After all the suffering they put you through it seems unfair that you’ll be dead with people missing you while they carry on with their lives”
Those bits might make you feel awful but might get you some commitment to stay alive a bit longer.
Once we have some commitment we can start exploring ways to stay alive that keep the service user in charge as much as possible.
Get rid of the means to kill yourself – “There’s a million ways to kill yourself out there and if you’re determined you will do it. Can we get rid of that rope/stash/weapon so that you don’t do something fatal on impulse?” Best for them to do it, good for them do to it with someone, ok for them to give it to you. Try to avoid just taking things.
Make it harder to go – I’ve written you a suicide note – “I wont read it. I’ve deleted it. I won’t let you say goodbye to me.” Get them to delete/dispose of it. They can always write another one.
If you have a good relationship – “I will miss you.” “I come to work to help people and it will destroy me if you kill yourself” OR “I will go to court and someone will criticise every aspect of our work together to make it my fault that you’ve died. In my notes somewhere I’ll have written something wrong or written it too late and I’ll get struck off. I might never be able to do my job again if you do this.” This can sound totally self centred by at some point you might just want to say anything you can to keep someone alive. If they’re set on dying, it’s not as if anything you say can make it worse.
And I’ve never done this but if pushed – “You can die. We are part of Europe and there are places you can go that will help you. I’m asking you not to die today. You can fill out an advance directive refusing treatment. It takes a bit of time but it means you can do it. I’ll be honest and I hope you change your mind during that time but it can be done.”
A few more things I might say are –
“The obvious thing to do is get you into hospital and have people force you to stay safe. My experience is that once someone else is responsible for keeping someone alive, everything they were doing to keep themselves safe up until now goes out of the window. If we can consider the idea that admission could be more dangerous for you, can we think other things that might keep you safe?”
“Admission sounds like a good idea but you often cope by cutting. In hospital they will take away the ways that you normally cope so you’ll be feeling like you do now, but without being able to do what you normally do to cope. Can we think of other ways….”
When offering solutions try to make them fit with their normal life – support from friends, family, call lines, more time with people they trust. A change of environment. Even time in a 24 hour Mcdonalds is time spent around people when it’s harder to act on that urge.
“Feel free to talk to me again” lets people know you’re not dismissing them. I always include a warning that I will be no help at all if they phone five minutes before the office closes.
With all the above I’d add the importance of validating someone’s reasoning. “That makes sense.” “If I felt like that I would want rest.” “I would want that pain to stop.” We don’t agree with their solution but we agree with their problem and can see how they thought dying would help.
Rather than tell people to distract themselves, ask what they’ve tried so far. It can sound really invalidating if we suggest things they’ve already tried. Also try to avoid telling people they’re wrong about how they feel. When someone feels like dying, “But you’re doing so well…” isn’t going to fly. If you really disagree, validate their thinking first before offering a different view.
With all these interactions it’s important to try to be curious. If you feel someone is saying one thing but communicating something else don’t be afraid to say that. I sometimes use the preface “This might sound like I’m trying to trick you or catch you out, but honestly I’m just trying to understand…” which can then lead on to “There’s people who jump under a train and there’s people who have no thoughts about dying at all. I’m thinking that you’re sitting here telling me this and I wonder what that means about how determined you are to die. I’m not saying you don’t want to. I can see how much you’re struggling. Can we think about what it might mean together? Does that sound like I’m not listening?” This can often change a conversation from ‘I’m going to’ to ‘I want to’ and urges are easier to work with than firm plans.
What I often hear service users saying is that they were dismissed, not listened to and abandoned. In my experience you can agree solutions that are massively different from what the service user wanted when they walked through the door if they feel you are interested and care. Not admitting someone on the back of a sound rationale which relates to their past/current services can be much more acceptable than “Your notes say admission isn’t helpful”.
Sometimes someone’s desire to die is so acute they might need to be protected from themselves. This is always my least favourite option but short term and with people you don’t know it might be your only one. My gut instinct is for the admission to be short term and that time used to assess and formulate rather than just warehouse. The decisions we make when we understand might be significantly different to those we have to make when caught by surprise.
And I think (to inappropriately use a military expression) those might be all the weapons in my arsenal. Remember that these are tools to use when the service user is on the phone or right in front of you and you’re caught by surprise. There is no substitute for assessing/formulating risk beforehand so that you can act as if this is the 10th time they have been in this situation rather than make all your decisions as if it’s the first time it has ever happened. You will feel more comfortable if you have a plan that the service user has co-produced beforehand. If there’s lots of positive risk (and in hindsight anything other than infantilising, detaining and restricting will be labelled reckless) get senior clinicians and the service user to give the plan their blessing.
I hope this is useful. I think it might have been useful to me when I qualified. Any extra tips and tricks be sure to comment at the bottom. I know I can always learn new things and you never know, it might just save a life. Again, excuse the arrogance of writing something that might be a bit (a lot) patronising but honestly, it’s a genuine response to people saying they felt stuck. Looking forward to hearing your thoughts.

@keirwales660265