Risk Management Begins at Home

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

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

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

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

“Professionals are fearful that unless they adopt a cautious, risk averse approach to their patients, they will find themselves being publicly shamed for those occasions when those same people cause serious harm to themselves or others”

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

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

”some people with a learning disability, autism or schizophrenia are being “warehoused” as we now call it in locked rehab wards, or unsuitable long stay wards which exacerbate and not ease their problems”

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

“So whilst fear of the mentally ill has decreased in the public, parliament and media, a different kind of fear has increased – the fear of making a faulty risk assessment that influences many professionals.”  

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

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

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

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

 

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

 

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

 

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

 

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

 

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

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

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

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

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

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.

Why Prince Harry has set the mental health world back 200 years.

It seems habitual for me to write about rugby in these blogs lately but why interfere with a winning (unless you read the stats) formula.  So 2 weeks ago Prince Harry poked his head above the trench and spoke about some of the mental health problems that he has experienced in his life.   What surprised me was some of the negativity that surrounded his sharing of his experiences.  The issues that I came across most were

1 Why the hell are we talking about this millionaire who has been a bit sad when there are people with real problems who can’t get help?

2  It’s all very well for you, a privately educated millionaire to tell people to seek help that doesn’t exist.  Go and live in a tower block and once you’ve queued on the phone for an hour to see your GP she can tell you about waiting lists, service gaps and a mindfulness leaflet

The issue with point 1 is that people regularly share their desperation, pain, and feelings of hopelessness on social media and the response they get is relatively muted.  Some of their friends are interested.  They might even get a like or retweet but in general, the world moves on.  Two weeks ago someone talked about having some mental health problems and it was on every news program, every newspaper and social media exploded with people sharing thoughts about Harry’s story.  Even those typing “But what about people with real problems” missed the irony that they were only typing that in that moment because of the choice that Harry had made.

Point 2 has a bit more substance to it.  One of the benefits of private healthcare is that people will take your money and do what you want very quickly.  Harry need only have thought “I think I need to talk to someone” and it probably happened the next day.  So we can all agree that Harry’s experience of accessing help was different to the majority of other people’s.  We might also agree that it’s as useful for Harry to extol the virtues of seeking help as it is for him to encourage people to drink more water during a drought.  If there’s nothing around then there is no point asking for it.

 Both of these miss the point of how helpful it was for Harry to speak out.  (Here comes the rugby part)

I’ve played rugby for about 25 years now.  During this time I’ve known men with piles who have poked them back in while we were showering, I’ve known men talk of the colour, volume and aroma of their ‘nether’ discharges, I have seen men compare and contrast the size of various ‘private’ rashes, bumps and blemishes.  Not once, not once have I ever heard anyone talk about their mental health problems.  That’s not to say that mental health isn’t discussed, but it belongs to another realm.  A realm of nutters, loonies and those who are very different to us.  We are ragingly, emphatically sane while those ‘others’ are broken, weak and flawed in some way. 

So I’m suggesting here that mental health carries a greater stigma than sexually transmitted diseases.  What Harry has done, and what I truly think everyone should be grateful for, is something that erodes some of the stigma surrounding mental health.  “But what good does this do?” we cry, knowing that services struggle to cope with the business they have, let alone another 50 customers walking through the door next week.  Well, let’s remember some statistics (and as I’m reading them I’m not terribly convinced, but here goes) in 2014 there were 4882 suicides in England.  Of those 751 were current mental health patients.  Even if those figures are way out we can see that the majority of people who come to the conclusion that death is the only way out do so without ever setting foot in a CMHT, my uncle included.  I’m going to suggest that the majority of people who kill themselves carry a huge sense of shame.  The weight of the burden they carry drags them down and due to society’s attitudes towards mental health problems it is better to die than it is to share that burden with someone else.  

When I was a much younger man there was a period in life where I felt that I’d lost just about everything that was important, that the future was going to bring only more misery and that a potential solution to this dilemma was to go rock climbing (which I’d never done) up a massive cliff.  During this period I had a best friend who I could talk to anything about and after I shared my ideas with him he helped me think up a few solutions and even got into the car with me to drive off and put them into action.  Without having him in my life and without having the (courage? Foolishness? Vision?) to get what was in my head out of my mouth I could easily have become a statistic.  What I’m saying is that talking about mental health problems isn’t necessarily seeing a therapist.  It’s telling your friend, your partner, your boss that you’re struggling.  It’s about voicing the thing that you know people will hate and despise you for and finding that they accept you.  It’s about turning thoughts into words so that people can examine them with you, rather than having to carry them yourself with the certainty that every bleak thought and every hopeless prediction is 100% accurate.

But for people who need treatment there’s still no services!!!!  That’s true but for me the thing that makes things change in the NHS is demand.  Now that can be demand in the form of a queue of people out of the door or DEMAND as in people screaming that they are (literally ) as mad as hell and are not going to take it anymore.  To go back to the genital urinary analogy from earlier, if the wise people in my town’s NHS decided to radically cut the funding of the GUM clinic the response would be…..muted.  There would be no marching in the streets, there would be no celebrity endorsements of the campaign.  No one would make too much of a fuss because it’s just too noxious a brush to be tarred by.  The same is true to an extent of mental health.  Hugely underfunded in both services and research this is largely because people don’t campaign about it to the same extent that they do for heart disease or cancer.  Someone who dies of cancer ‘lost a battle’ someone who died by suicide ‘gave up or couldn’t take it any more’, as if mental health problems aren’t something that can affect anyone, just a thing that weak people choose.

Prince Harry is the highest profile ‘normal’ person to talk about his experience of loss and managing strong emotions that we call mental health problems.  If he can have them and he’s normal, maybe other normal people can admit they struggle too.  Maybe we can rethink our ideas about what normal might mean.   If more people share that they struggle, maybe they won’t have to kill themselves.  If more people go to their GP for help, if the queues for therapy get longer and if more normal people shout, write to their MPs, complain, and/or march in the streets then the government will have to listen.  By saying it’s ok to talk about mental health problems, Harry showed that it was OK to have mental health problems and for that alone we should celebrate and recognise the good that he has done. 

On the other hand I loathe the phrase ‘we all have mental health’…..