Learning to Be Me: Treatment in A Democratic Therapeutic Community

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

One of my favourite ways of helping people is the day therapeutic community.  I got a chance to work in one around 2010, a time when I held (pretty tightly) some of the more stigmatising views people express when talking about ‘personality disorder’.  I joined for a year and left most unwillingly after 2 and a half.  I spent 5 hours on a Monday in a group being genuine with people.  I worked with experts by experience and saw those who I’d thought of as being manipulative and attention seeking being brutally honest and utterly self sacrificing.  Aside from the change the group made in me, I saw people who had been on the verge of death from self injury move into lives where they could care for themselves and allow others to love them.  It was a powerful transformational learning experience for me and it is with much pain and despondency that I see this way of working move into the shadows, eclipsed by DBT and other 3 letter therapies.  In a world where services for those who hurt themselves tend to be easily forgotten or overlooked, 2 of the day therapeutic communities I was part of either won or were the only mental health team shortlisted for the NHS Wales awards.  Both these services have now closed and it feels palpably ironic that services can be both celebrated and praised for their excellence while also marginalised and unsupported.  Perhaps one of the reasons people find therapeutic communities hard to support is that they are difficult to understand.  The lack of direction can be uncomfortable.  The idea of patients having full control of their group can be terrifying – especially to organisations that try to eliminate risk.  In many ways the only way to understand how a TC works is to see it.  In the world of social media I’ve always hoped for someone to write an account of their time in a TC to give people an indication of what it feels like.  When I voiced this on twitter one day the marvellously articulate @shadesofsky offered to write that very piece.  A few months later here it is, a powerful account of what a TC can feel like.  I hope people read this and think of TCs as an option.  I hope commissioners and clinicians read this and remember that recovery isn’t only spelled DBT.  I hope people can remember that the NICE guidelines say we need to give people a choice.  Finally, I hope you enjoy reading this as much as I did.

Keir

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It’s 4pm on a rainy Tuesday afternoon. I’m a member of a Democratic Therapeutic Community for people diagnosed with Personality Disorders. I’m sitting, curled tight on a sofa that’s nearly collapsed in on itself, trying not to do the same. My knees held fast against my chest, my hands are tearing at my hair. 

I want out.  I thought that this was one place I was understood, but I was wrong, wrong, wrong. I am always wrong. I myself, am wrong. I want out.

 I am crying, hard. I’ve left the community meeting in despair again. Run away, because someone said something that I couldn’t handle. I don’t like it here. My anger is too intense. I can’t stand conflict. I am too full of anger. The whole community hates me. I am too messed up to be put right. I need to leave. 

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It’s 4pm on a rainy Tuesday afternoon, 15 months and 500 miles away from that Tuesday afternoon. I am remembering what I used to be like, when I was starting out treatment. Even after spending 12 months in the preparatory group, I was still a crumbling wreck. Brittle, the psychiatrist said. I would snap at the slightest thing. Cry. Self-harm. Stop eating. Nothing – not courses of CBT, years of counselling, exercise, book prescriptions – nor medication had worked to change my mental health. I was volatile and lonely, with a self-esteem on the floor. Not that you’d know that from the outside. When I started in the TC, I worked multiple jobs, more than full-time hours, teaching; researching. Striving. Pretending to the world that all was OK. Trying to run faster than the emotional maelstrom baying at me, without success.  For the past few years, life outside work had been getting messier. And I was terrified that I wouldn’t be accepted in the TC. I had never belonged anywhere. 

The TC, (group therapy for 15 hours a week) had offered yet another treatment option. Therapists from different health backgrounds, work with service users, as equal members of the community. Each member joins via a case conference which identifies the things that they would like to change in therapy, for a period of 18 months. I was voted in unanimously. I wanted to work on trusting others; on kindling a sense of self-worth, on handling conflict without falling apart. And on not needing to work so hard. But a few months in, I was crying more, breaking down more often. I had returned to the self-harm, that I’d been obliged to stop for a period of four weeks, as a condition of entry to the community. I felt intensely disliked. I was utterly unlovable: rotten to the core, my inner voice whispered. I’d given up working many of the hours I was doing. But I felt more depleted than ever. And I still felt rubbish. 

The community held me to account for my walk-out. I had to explain what had led me to leave; how I felt; what could stop that happening again. I had to face the reality of how getting overwhelmingly distressed and leaving the group had left others feeling. It was not comfortable. It left me feeling like I wanted to leave for good. But I didn’t. I kept going back because people would notice if you weren’t there. I went to group after group after group, day after day. 

TCs are set up to work like a microcosm of life outside. So, the idea is that with a small number of therapists and service users, each person will end up re-enacting the patterns of interaction that they use outside. And, within the boundaries of the TC, those patterns are examined and reflected upon, and changed.  There are endless boundaries in a TC. Twelve months into treatment, I was still discovering them. But I like structure and routine. After breaking the rule around no self-harm, I was put on a contract “to not cut”: and haven’t broken it since. The strict timings of opening and closing community meetings, the definite rules around contact with community members, the accountability for my actions, were keeping me contained. I struggled against flexibility; around times when the boundaries were deliberately broken – even by therapists – times that left me feeling like a small, lost child again.

Held by the boundaries, a few months into treatment, I was beginning to open up. Each week, the TC divided in half for “small group” – a time to test thoughts with a smaller number of people, look at events that had happened that week in more detail, or to share something new with the group. The feedback here was also painful. I was prickly, clipped, even condescending at times. I worked hard with the group to explore reasons for that. I was encouraged to take responsibility for the way I was acting – but not to blame myself for it, either. There was a reason – perhaps a wound that I was protecting – that was beyond my conscious experience – and that was driving my behaviour. The more I understood my knee-jerk reactions, the better position I was in not to resort to them. 

TCs don’t just consider interactions in the present. They consider their history, too. One way of doing that, in the TC I was a part of was psychodrama. Acting out the past. One time, I was nine years old, on the playground again. S — was standing in front of me, with J— and B— beside her. J—‘s family don’t want to buy a copy of the school class photo’. That was my fault, because it’s not a class photo’ because I’m in it, and I was not supposed to be in that class. I was in the wrong class. In the days before PhotoShop, S— and J— wished that they could scratch me out of it. So do I. I wished I could erase myself completely from everybody’s lives. Everyone hated me. Even my teacher standing less than a foot away didn’t respond as the slap S–struck across my face echoed over the playground. The whole world hated me. In the psychodrama, I fight tears, fight for control, as this scene is laid before me. I must stay in control. I must not cry. I am not nine years old. S— is not about to hit me for calling her a name, in despair because nothing else has made her stop. I’m OK. Really. I’m OK. The echoes of my present thought patterns are there. Surely, I’ve processed stuff that happened over 20 years ago. It wasn’t not your fault, S —. You were nine. The adults let you down.  So the therapist says.  The TC offer a different perspective on the past.  I have to work hard to believe that what happened when I was a child was not my fault. 

We spend time each week going through the Structured Clinical Interview for Diagnosis II. Each and every trait of personality disorder. And conduct disorder. We work as a group, reflecting whether we think we have the trait, and get feedback from the rest of the TC. As expected, I meet the criteria for EUPD. But I also meet the traits for Avoidant Personality Disorder, too. I intensely fear rejection. I am scared to let people in, unless I can be certain that I will be liked. So I distance myself instead, most of the time. It’s safer that way. I have some fairly rigid thinking, too. I like boundaries: I find flexible interpretations of the rules harder to bear.  Knowing the traits is useful. 

In Objectives (PsychEducation by another name) we go through model after model to try to explain our distress. I consciously try to apply my experiences to each one, to make some kind of sense of the mess. Radical acceptance, concepts from DBT, help me most. Seeing each emotion as a guest at your house. Trying not to slam the door on it, but to invite it in, instead, to get to know it better.  Mentalising, too. Thinking of all the other reasons why that person didn’t reply to my message, that aren’t about them not really wanting to be my friend. The world brightens after a realization like that. 

The TC has a creative hour each week, too. I relished these. This was something I could do. I was allowed to write about how I felt, and that I could do. I wrote letters. Letters to my ex-partner in prison. Letters to my four year-old self. To myself. But writing is easy for me. I am challenged to use a different medium. I recoil. I’m less certain of myself in the break times as well, at first. I prefer to go where others aren’t. Hide on my ‘phone. Others might not want me to be hanging out with them, anyway. 

Around ten months into treatment, things start to change, measurably. I have drawn a rose in the creative session. And the rose is in bud, and delicate, but it is growing, and I am beginning to believe that it will bloom. I have started dating. I think I can trust someone else that  much. I am more accepting of the bad bits of me. Some things still get me. Using ableist language is one very quick way to get me riled.  But maybe that’s useful, too, if I can use that anger in a helpful way. 

A few months before I leave, I start applying for jobs again. And I get one, to dovetail with my leaving date from the community. Apart from, as much as I wanted to leave, three months into treatment, I don’t want to leave now. I have made firm, secure attachments to members. They have seen me scream and cry, and they still come back to me. They know the authentic me, and they still seem to want me around. But they encourage positivity in me, too. They are excited that I have a new job, in a new country. A new place to live. They wish me well. And I leave. I am now not allowed to contact them until they are discharged. I miss them, even a couple of months later. And things have been stressful with the job and the move, and I crave the structure of the TC to hold me safely again. I am frightened that I’m going to be no good at being an adult. But I am acknowledging that, rather than hiding at work. TC was tough. Leaving it was heart-rending. I am scared of life beyond its boundaries. But TC has given me the determination to make the most of what I have; to look forward to the future. I believe that the best is yet to come. And I can’t wait to live it. 

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@shadesofsky is certainly worth a follow on twitter.

Keir provides training, consultancy and therapy via 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.

An Overview of “Personality Disorder”

This is a little collection I put together for the people I was training with the other week.  I’m sure there are loads of gaps so if you think something essential is missing do let me know.  Hope you find it useful.

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

What do services look like in England?  services in the UK.   Dale O et al (2017)

Essential Reading

The idea that people who were labelled as having a personality disorder were part of the core work of mental health services first gained traction in 2003 with the publication of the seminal No Longer A Diagnosis of Exclusion  (2003)

The Personality disorder Capabilities Framework describes the skills required for staff to work effectively in this area.  It is rarely used.  (2003)

The review of the 11 pilot sites of ‘personality disorder’ services (2007) Crawford et al describes useful features of effective services.

Stigma

There are some dodgy attitudes towards people who get the diagnosis out there.  This is a mix of papers that identify problematic attitudes and ways of challenging them.

The patients psychiatrists dislike (1988)

Attitudes towards patients with a diagnosis of ‘borderline personality disorder’: Social rejection and dangerousness (2003)

Jay Watts talking about how having a BPD diagnosis means you don’t get listened to Testimonial Injustice 2018

This is a critique of all diagnosis  thats tells us what we all know – people who get this label have lived through awful experiences. (2019)

This is a way of challenging some of the stigma Why Are People With Personality Disorder So Manipulative?

This brilliantly encapsulates how once we have a picture of what someone is like in our mind, everything they do can be twisted to fit that picture: How Not To Get A Diagnosis of Personality Disorder  by Recovery in the Bin

The Not So Nice Guidelines for Borderline Personality Disorder. – This is a way of reading the NICE Guidelines for BPD but with a commentary about what services are really like.  By recovery in the bin again, specifically Lara Quinn and Erik

 

How to work with people who get/could get this diagnosis

This is the Ministry of Justice Guide to working with people with ‘Personality Disorder’.  Lots of stats, facts and figures (2015)

Meeting the Challenge, Making a Difference – This is the Guide to working with people diagnosed with personality disorder, written by people who identify with personality disorder. (2014)

This talks about Trauma Informed Care and why ‘what we usually do’ often isn’t helpful. 

 

Specific Guidance

Most recently the Royal College of Psychiatrists Position Paper on Personality Disorder makes some very clear recommendations

NICE Guidelines Self Harm

NICE Borderline Personality Disorder – The personal accounts of people who have been through services are really interesting.  Also gives an overview of different interventions.

NICE Antisocial Personality Disorder

What help is out there? 

Theres lots of therapies with an evidence based in this area.  These include….

Dialectical Behaviour Therapy (DBT) from the Mind website

Mentalisation Based Therapy (MBT)

Schema therapy

Therapeutic Communities – My favourite way of working with people

STEPPS – Systems Training for Emotional Predicability and Problem Solving

Structured Clinical Management (SCM). It is hard to find a good link on this.  The book it’s based on is this one

Cognitive Analytic Therapy (CAT)

Someone will tell you one is better than another.  The evidence is fairly similar.  It’s all about the quality of your relationship.

This gives an overview of MBT, DBT, TFT and GPM.  GPM is interesting (something similar over here known as “Structured Clinical Management”) as it is delivered by generic workers rather than specialists. 

 

What makes the work hard?

The Ailment by Tom Maine This isn’t the best copy but this is an excellent article that describes the impact complexity can have on staff.  This is the best article you can read if you work in this area!!!

With research suggesting up to 78% of people in prison could be diagnosed with personality disorder, here’s some relevant things to read –

The Working With Offenders booklet again.

The Bradley Report – This looks at mental health problems and learning disability within the criminal justice system

The Corston Report – Specifically about Women in criminal justice

Women and Girls at Risk – A heartbreaking read about the disadvantage women face throughout their lives.

Suicide

Safer Care for Patients With Personality Disorder is both a collection of statistics around people with the diagnosis who killed themselves, and a survey of peoples experience of living with the diagnosis.  Best/Worst statistic – Not one of the people who died by suicide was receiving NICE recommended care.

Medication

Olanzapine is as good as placebo

Lamotirgine isn’t helpful

Be afraid of clozapine

Local Pictures (From the UK but happy to add more)

Northern Ireland 

England Has the RCP position statement.  Scroll up

Scotland 

Wales – This link doesn’t work because Wales has nothing to say on this subject, to our great shame.

And just some other interesting stuff…

Personality disorder on the BBC

I read this blog a lot!  *shameless self publicity warning

https://themainoffenderblog.wordpress.com/ A very articulate account of what it’s like living with BPD by @hoppypelican

Online resources:

http://www.dbtselfhelp.com/ –  Lots of stuff  to work through – All DBT flavour

Sunday night chats on twitter #BPDChat – Also with a DBT flavour

For people who have just been given a diagnosis

This personal account is a good start.  Lots of resources in there. By the excellent Sue Sibbald @BPDFFS

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

Below is a way of talking about complex emotional difficulties without talking labelling them Personality Disorder.

An important area of mental health that is getting increasingly recognised is the way people express various forms of emotional distress. It can cause various behaviours:

People harm themselves, for example by cutting their arms
Drinking unsafe amounts of alcohol
Taking illegal drugs regularly, excessively or irresponsibly
Misusing prescribed medications (or those available over-the-counter at pharmacies)
By impulsive and reckless actions that could have have serious consequences, like driving too fast or having unsafe sex
Chaotic eating patterns – such as bingeing, vomiting, abusing laxatives or continuously eating too much.

In addition, people with these problems often have repeated difficulties in relationships in ways like this:

Never keep friends very long
Cannot hold down a job
Isolated and lonely
Violence in intimate relationships
Over-sensitivity to criticism
Argumentative with people in authority
Feeling very abandoned when left alone or people leave
Unable to cope with making any decisions without help
Often switching between loving and hating family members.

Many people will experience these things at some time during their lives, perhaps in response to stress, but some are severely troubled by many of them for most of their lives. These could be called ‘long-standing emotional problems’, and they often go right back to childhood. In mental health services they are sometimes known by diagnoses like ‘complex needs’, ‘personality disorder’, ‘borderline’ or ‘severe and enduring non-psychotic disorder’.

Although it is not always the case, people with these types of difficulties have usually had difficult childhoods, with adversities like repeated trauma, or physical, emotional or sexual abuse, or neglect and deprivation, or several severe losses and bereavements. On the other hand, some people who suffer very harsh childhoods seem to be somehow ‘protected’ from the long-term psychological damage it can do. Unfortunately, there is no easy way of finding out who will have more problems and who will have less – although research is always being done to help us understand these matters better.

People who suffer in these ways often do so silently, without getting any help and often feeling guilty or ashamed of how they ‘are’. They often do not even know that they have a problem that others have too – and can become very isolated and lonely with it. In fact, these problems are very common, and increasingly recognised. The reason people behave the way they do, and have the difficult relationships they do, is usually to deal with their feelings, and to try and cope with them. But their actions often do not help enough, and they can make matters worse.

Very commonly, the behaviours can be confusing and upsetting, and this is as true for the people themselves as for those around them. This is because there is a lack of information and understanding about how these things arise, unwillingness to think and talk about them, and little knowledge about what can be done to support someone in this sort of emotional turmoil.

Although it is often the easiest route, there is recent research and NICE guidelines which suggest that medication is not usually the best way to deal with these problems. In the NHS, psychological treatment often helps, and this may take different forms. However, short-term ‘quick fix’ treatments and therapies are rarely very much help. Some psychiatric services are good at helping people with these problems, but because the number of people affected has only recently been recognised, many mental health staff do not yet have good training to deal with it.

In this situation, one of the things that can be very helpful is to help people to feel less alone and ‘odd’ – and for this, other people who have suffered similar feelings are usually better than professionals at understanding what it is like.

(This was taken from the Emergence website)

And those are some things that might help you understand whatever personality disorder means and what might help.  Again, if something is missing let me know.

Keir

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