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.
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.