Manipulation & ‘Personality Disorder’ – Dig Deeper

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

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

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

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

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

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

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

Sarah J Palgrave @sarahjaynepalgr

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

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

 

 

Forgetting inconvenient truths: A way to keep thinking.

January 2018 was an interesting month in the world of what textbooks refer to as Personality Disorder. There was the launch of the Personality Disorder Consensus Statement, an article on Personality Disorder on the BBC and the launch of the Power Threat Meaning Framework. While I haven’t read the full version of the PTFM I have read a lot about it, and there has been a lot to read. The responses were many and mixed. Some of the responses have been vitriolic, others merely critical, and others more celebratory as a high profile way of thinking about mental health and mental health problems leaps into being.

 
Some of the criticisms of the PTMF are articulately laid out here. What I want to do in this blog is lay out a basic version of what the PTMF promotes, why it’s essential that people can take this on board and what might get in the way of making some use of it.

3d doctor
Within traditional psychiatry signs and symptoms that occur together are named as a diagnosis. The PTMF encourages us to shy away from diagnosis and illness and instead explore a person’s difficulties and distress in terms of:
 What happened to you?
 How did it affect you?
 What sense did you make of it?
 What did you have to do to survive?

 
From the questions above we can then discover a narrative around why someone does what they do. We can see how their behaviour makes perfect sense given their previous experiences. In an ideal world we can then think about what might help and at a minimum consider how to avoid replaying some of the person’s most negative experiences.

 
For difficulties such as insomnia the framework might not be that helpful. For other areas I suspect clinicians and service users should use it if they both agree it’s useful. For the people who get labelled with Borderline Personality Disorder this kind of thinking is vital.

 
Why is it vital? There was a time that I didn’t think that it was. I was happy to join in with a roll of the eyes and a “typical PD” comment. I could understand that someone was self-harming because they had a personality disorder. Times when I felt attacked or criticised it was easy to label everything as the product of a disordered personality – this left me as a flawless clinician with merely a faulty patient to contend with.
As the years ticked by my experiences in work got me thinking of people with a diagnosis much more as simply people. My work became about helping staff who thought in the way that I used to, to unpick their ideas and see someone in a more empathic way. What I tended to find was that a list of diagnostic criteria had absolutely no impact in how staff thought about and responded to the people in their care. When we could move away from the descriptive (and fairly judgemental) criteria and think about the experiences that people had lived through that might inform how they behaved, then it felt like some empathy could arise.

 

Two examples:
1 Looking through someone’s notes I read “Mandy went to her room and was self harming due to her diagnosis”. It frustrated me that someone’s thinking could begin and end with that sentence. There was no sense of what was going on in their head. No indication of or curiosity about what they might be feeling. No indication of how people around them responded (apart from the implication that it was dismissed and pathologised). How can we help people if our sole understanding of their behaviour is that they do it because of a particular label?

 
2 I was in a group and someone recounted something that they’d done “because of my BPD”. We spent a decent amount of time exploring how their feelings and responses were entirely appropriate, especially given their early traumatic experiences. The description of overwhelming emotion and the desperate urge to feel something different made a lot more sense and contained more potential for change than “because I’ve got BPD”.

 
It would be easy to say that the above examples are simply people using diagnosis badly. While this is true, there is something that happens in this area of work that means that traumatic histories are forgotten and staff see risky or troubling behaviour purely through the lens of their own experience.

 
“I feel manipulated” = They were manipulating me
“I don’t know why they did that” = They were doing it for attention
She cut herself after ward round = She’s trying to sabotage her discharge

 
To an extent this is understandable (understanding does not mean approval). I was very poorly trained to work with people who had lived through trauma and my understanding is that undergraduate training hasn’t changed significantly. With no knowledge base, the students of today tend to learn from those who also had little training so learned on the job. Combine this with people who cope in ways that can be dangerous (the results of which staff might be blamed for) and you have an environment full of confused, anxious clinicians. This seems to lead to a situation where toxic ideas can flourish with little opportunity for people to learn anything different. A new cycle of treating people as if they were manipulators begins, with people reacting to that hostility and then having their reactions explained by their diagnosis.

 
This doesn’t happen everywhere but it does happen every day. Any tool we can use to stop the thinking shortcuts of “They’re just…” and focus on an empathic understanding of why someone does what they do seems essential for maintaining compassionate care. We can’t validate someone with personality disorder, but we can validate someone whose thoughts feelings and actions make perfect sense given their experience. The PTMF may not be product that means we never use diagnosis again, but let’s not boycott the restaurant because there are a few dishes we don’t like.

 

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

The State of ‘Personality Disorder’ Services in Wales

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This resulted in the response:

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

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

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

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

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

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

A Disorder for Everyone?

Dec 8th 2017

It is too early in the morning, there is a light dusting of snow on the ground, and I’m heading off to Manchester to spend a day dropping the disorder.  A Disorder for Everyone  (#adisorder4everyone) advertises itself as a one day event for a range of staff and service users to discuss critical questions around the biomedical model in health.  My perception of it is that it’s overtly critical of our current system of diagnosis (especially around the term personality disorder) and heavily promotes the idea of formulation and understanding difficulties rather than labelling them.  Less a neutral place to debate but a place with an agenda and a message to impart. This is no bad thing as I’d agree with something that I often hear emanating from the AD4E days, that “Diagnosis obscures peoples stories”, that once something is labelled, it’s an excuse to stop thinking and respond to the label rather than the person.

The event comes at a poignant time.  Earlier in the week I’d lost someone I was relatively close to (as close as you can be to someone you have never met) on twitter to suicide and I was at an event  where her passing was to be acknowledged.  She was almost described as someone who ‘had’ personality disorder and I was glad to be able to point out how much she (and eminent psychiatrists) rejected that label for her presentation, how she felt that it had led to a ‘care’ plan she felt to be brutal and dehumanising and how she saw the label as something that had led to the staff around her acting in a way that was toxic to her.  So in a week where the damage labels can do is on my mind more than usual I was off to find out more.

I need to confess to being a touch apprehensive about going.  When talking about what textbooks describe as ‘personality disorder’ on social media I tend to get a bit of a hard time.  I wonder if it’s because the debate tends to become polarised and I actively try to keep something of a middle ground.  In a polarised debate this means I don’t end up on anyone’s ‘side’ tending to result in me being perceived to be ‘against’ people.  I rarely am and if anything, my views on diagnosis tend to slide more towards the DTD side.  I shall elaborate….

Whenever I’m training people about personality disorder, someone will pretty much always say “I want to know about the signs and symptoms and the different types”.  In many ways, this knowledge is next to useless, but it does help staff feel more competent and competent.  Most days this statement gets a response along the lines of….

There are 10 types of personality disorder.  I’ve worked in a variety of mental health settings for the past 18 years and I have met less that 10 people with a personality disorder diagnosis that isn’t borderline or antisocial.  So – there’s these 10 types, only 2 of them ever get diagnosed.  Something with this system is seriously wrong.

In my experience if you are a woman who self harms, you are getting a BPD diagnosis regardless of whatever else is going on.  Something with this system is seriously wrong.

Research suggests that if you can be diagnosed with one personality disorder, it’s highly likely you’ll meet the criteria for another 2.  That’s 3 personality disorders in all.  So in a system that aims to put people into a neat tidy box so that we know a care pathway, it’s messy because they’re actually in 3 boxes (and probably with some traits in a few others).  Something with this system is seriously wrong.

Let’s take borderline personality disorder in the DSM 5 as an example.  To be given the diagnosis you need to match 5 of the 9 criteria.  Let’s say that my friend Ian and I are on the ward.  He can meet criteria 1-5 and I’ll meet criteria 5-9.  That’s us with the same diagnosis, the same treatment plan, and sharing only one characteristic.  Something with this system is seriously wrong.

Those are the problems within the system, let alone the insult inherent in labelling someone as having a disordered personality.  I can intellectually accept that we all have personality traits, that some of those can cause us difficulties (mine do!) and that if they cause us serious difficulties that could be described as a disorder. The difficulty in this field is that the majority of the people getting this label are those who have lived through experiences of neglect, abandonment and outright abuse.  To then label them as disordered rather than seeing them as having an understandable response to their experiences then seems to be somewhat callous.

Now often, people can’t accept that the ideas above go anywhere near my head at all.  One reason for this is that I work in a personality disorder service.  I’m told that I have an investment in this label and that I have forged a career on the backs of abused women.  I can see a basis for this argument but I’m not sure what the correct response is.  I suspect it’s to jack in my job.  The difficulty I see with that is that systems often struggle with people who get a personality disorder label.  I want to make that better.  I’ve met too many people who come onto wards feeling suicidal and never get let off again.  Ways of coping that would go unnoticed in the community become reasons to detain in hospital and all of a sudden people have been on an acute ward for 6 months, they’re on a range of toxic chemicals, they’re 3 stone heavier and they’re about  to be shipped off to some institution miles from home.  Will this happen less if I stop work?  I suspect not.  Will there be a voice that challenges this trajectory?  Again I suspect not.  I was reading Gary Kasparov’s book last week and he was talking about what to do to combat malaria.  Do you try and help some people now or a lot of people in the future?  Do you make more mosquito nets or do you work on a cure?  I’m making mosquito nets and I want all those working on the cure to succeed.  It doesn’t mean that either of us is the enemy.

So in essence, this is what I a took into the event.  I also took some worries.  If the diagnostic system vanishes, how do newly qualified staff cope?  It took me years to feel confident enough to just look at the difficulties people were experiencing.  Can someone do that fresh from college?  How does that culture change come about?  Painfully I suspect.

Also, what do we do with our accumulated knowledge so far?  Is it useless because it’s built on such a shaky foundation?  With a diagnostic system shattered, will we know ‘what works for what’ anymore?

 

 

So the event is over.  And I survived.  Actually, the apprehension I’d had about attending was totally groundless and while a couple of people recognised me from social media, they couldn’t have been friendlier or more welcoming.  While there was a touch more poetry present than I would normally have the stomach for, it was powerful in its delivery and did what I think all good poetry does, says more with less words.

I’d opted to go to this event rather than other DTD ones as I was keen to hear Lucy Johnston speak and I’d somehow managed to overlook that she actually speaks at all of them.  I was a little bit disappointed, not it the quality of what she said, but because I’d expected there might be something to rail against.  Something that sounded a bit too left field or a bit ‘crazy’.  Instead Lucy gave a critique of diagnosis where there wasn’t anything substantial to push against.  If I’d wanted to be particularly devilish I might have pointed out that the diagnostic criteria she (rightfully) pointed out as being moral judgements did come with the caveat that they needed to cause problems for people for the diagnosis to apply.  Having said that, I’ve seen people detained in hospital for self harm that was only a problem for other people so I might support Lucy’s position about the spirit of how diagnosis is used, if not the letter of it.

In the afternoon Lucy spoke about the value of team formulation.  Again (almost disappointingly) there was little to disagree with.  She described a mechanism to keep teams thinking so that they weren’t overly rejecting or enmeshed.  It made me think of the Knowledge and Understanding framework for Personality Disorder and the Offender Personality Disorder Pathway and how they both (in my experience) aim to challenge labels, offer a understandable and empathic alternative to a diagnosis and “try to keep thinking at all levels in the organisation”.  It also made me think of the NICE guidelines for Borderline Personality Disorder which encourage trusts to set up specialist services to “provide consultation and advice” which in my experience has been a similar “let’s forget about labels and understand what’s going on approach”.  Now the KUF, the OPD and the NICE guidelines are heavily loaded with the PD label, but as they offer a non diagnostic approach is that a price worth paying to get organisations thinking differently?  In systems that are welded to a hierarchical, diagnostic system, are these tools a wedge to get different thinking in?  Many will think not but one of the reasons I often berate Wales for not following NICE guidelines is because without a mechanism in the organisation to promote thinking, people mindlessly (often with good intentions) do what they have always done.   One of the comments about the use of team formulation is that getting a team together to think for an hour costs a lot of money.  It does.  But locking someone in a “specialist” placement for a year costs £200,000 and if formulation stops that happening once then its paid for itself until most of the team have retired.

Jacqui Dillion (Dr Jacqui Dillion no less) finished the day off with a description of her journey through life, services and activism.  It was a captivating talk with far too many people who you might expect to be helpful being outright abusive.  We heard experiences being discounted as illness, emotions being discounted as illness, anger about not being believed discounted as illness and a host of people who should have helped replicating the abuse of the past.  It was this part of the day I found most affecting and it was heartening to hear Jacqui talking of what made life liveable for her again.  Not some magic therapy but someone who would listen, someone who would validate and someone who empathise.  Someone who could give a different perspective to those who told her she was evil and bad.  I’m going to butcher this quote but it was something along the lines of “We are traumatised by relational abuses and we need relationships to get past them”.  For all those on the ward and the CMHT who don’t know how to help I’d urge you to read that sentence again.

Jacqui asked how many people worked in mental health and a bunch of hands shot up.  She told us that you have to be a bit odd to choose to do this.  I tend to agree and I often wonder if what gets labelled as personality disorder is the combination of those who get all their self worth from helping people in distress meeting those who understandably cannot trust those who are supposed to care.  Much to think about…

Having left the event I’d share what one of the delegates voiced with frustration, that this is all just common sense.  It is, but we need to find a way to inject it into systems that run like they have always run and are paralysed by the fear of being blamed.  My only gripe of the day is that there wasn’t much of a chance to interact with the other delegates.  Even if there had been my suspicion is that the event wasn’t populated by senior managers and clinicians from the NHS.  I think people left validated rather than converted but again, this is no bad thing.  We might also have left a bit angry.  ‘Anger is an energy’ was quoted (but not attributed to the Sex Pistols).  I quite like ‘Anger is a gift’ from Rage Against the Machine.  Certainly people left with anger but also with some ideas around how to apply it.

Part of the theme of the day was how labels can stigmatise and stop us seeing people.  We talked a lot about the value of stories, how people are made of stories (not sure I agree, but certainly our perceptions of others are), and how “recovery” was about getting a story that portrayed you as a survivor of adversity rather than someone who was disordered or ill.  We have the power to influence the stories that are told about people and I left today inspired to tell better ones. To tell stories about people, about why difficulties make sense and about ways in which we can help.  I want an alternative to a Daily Mail letter that talks only of illness and tablets, and in the midst of all the evils of the world, I want to tell stories that are full of hope.

I’d heartily recommend attending one of these events and there are details of the next ones here…

For a bit of balance, here is another view around critiquing diagnosis which I found interesting.

www.adisorder4everyone.com

Keir is the Clinical Lead of Beamconsultancy.co.uk and provides Training, Consultation and Therapy around the issues often labelled as Personality Disorder

*Thanks/Curses to @sisaysPSYCHOSIS for pointing out that I don’t know my Sex Pistols from my Public Image Limited.  That will teach me to be so smug.

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.

My “Mental Health” Problems

Normally I write about important issues i feel passionate about. This time I’m writing about something that in the greater scheme of things is absolutely meaningless, but seems to annoy me intensely. If you’ve followed me on twitter (@keirwales), you’ll have seen me banging on about people saying “Mental Health”, when what they mean is “the absence of mental health”. When people are using words to mean the opposite of what they are supposed to, it’s interesting to think about why. It’s also interesting to think about why it annoys me so much. I know I love words, and I know I use them a lot. Normally a bit of experimentation with the language doesn’t bother me too much but every time I hear someone refer to mental illness as mental health, it’s like my brain is being scoured by a scrubbing brush.
I first heard the use of the term about 4 years ago. I was working with someone in a community mental health team (CMHT) and they would regularly tell me how they had mental health, their family didn’t understand mental health and the bizarre things that happened at night which meant the police came round were again, because of mental health. I managed to let this go and think little of it, but since then I keep hearing people saying the same thing. I hear them not just in the clinics and the waiting rooms, but also on Radio 4 who I see as guardians of the English language.
Let s have a look at what Health means –

“the state of being free from illness or injury”

This is what comes up first. Here we see that health is a positive term. Specifically, it implies the absence of illness. Therefore health is the top of the ladder and things can only go down from there. “Aha!“ you may argue “But health is a spectrum. We all have health to some degree”. Well possibly, but I don’t think anyone* ever uses the word health to imply anything other than robust and hearty vigor. You might ask someone “How is your health?” but by this you tend to mean “Have you been ill?”. Lets have a look at some examples:
Most recently Theresa May was on Radio 4 talking about “the injustice and stigma associated with mental health.” Now this is obviously a ludicrous statement as people with health don’t face any injustice or stigma at all. Those with mental illness, mental disorder or mental health problems face bucket loads of both and its in this direction Mrs May needs to be looking.  Which she is.  She just said the opposite of what she meant.
Its not just prime ministers who make this mistake. Prince Harry said in January “In the past, the phrase ‘mental health’ would be translated as mental illness”. Obviously not in the dim and distant past because 6 months later in July he said “Anyone can suffer from mental health”. Again, this is just bobbins. No one suffers from health. People suffer from the absence of health.
As a third and final example lets call in the police. In August last year when a man was running around London stabbing people with a knife the police announced that “Mental health was a significant factor”. What would he have done if he didn’t have such health? Once more what they meant was “The absence of mental health was a factor”.

While all the above is a bit silly, (terrorism aside) it is interesting that Mental Health, despite Harry’s best efforts, is being used to imply illness. What is it about the word ‘mental’ that has this power? Health is associated with athletes and fitness gurus, but Mental Health is a reason to assault people. Health is something you can rest assured you have – “At least I’ve got my health” – but mental health is something to be suffered. People with health can lead active fulfilling lives while those with mental health suffer stigma and injustice. We need to stop using the words mental health when we mean the opposite.
One of the reasons I think this is important is that there’s a load of people bobbing around talking about how ‘we all have mental health’. We really don’t. The guy locked on the ward crying as he’s tortured by his paranoia does not have mental health at all. While I applaud people like Harry and Dr Llan Ben-Zion for their efforts to get mental illness and mental heath problems talked about more, the repetition of “I have mental health” reads to me as a bit boastful. I don’t want everyone to talk about how they have health, I want people to talk about how they’ve had problems, issues, breakdowns and worries. “I went to the GP because I was struggling” “I’ve been depressed” “I thought about killing myself” – These are the conversations that reduce stigma. These are the conversations where we feel accepted. These are the conversations that save lives.
1 in 4 people will have some form of mental health problem in their lives. I’ve had pills from the Dr and sat with a counsellor twice in my life. I can absolutely assure you that during these times “I have mental health” was the furthest thing from my mind. I had issues. Worse than issues, I had problems. The stigma around mental health problems is bad enough as it is without us twisting and tearing our language to sidestep around it. Lets speak plainly and if you really want to challenge some stigma, next time someone tells you they have mental health, tell them about the problems you’ve had with yours.

Keir provides training, consultancy and therapy to help people and organisations manage complex mental health problems at Beamconsultancy.co.uk

 

*anyone, apart from the people who get this wrong.

 

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