We have been busy...

It’s been a busy few months for us and we just wanted to collate some of the things that we have been involved in that highlight our concerns about private Out of Area Placements for those with recurrent suicidality and self harm.  While it might seem a bit self indulgent, we do want to be the loudest voices arguing for and pragmatically working for the reduction of private hospital placements for those we are committed to working with.  The links should take you to all the material. 

Hollie had an article published in Mental Health Practice entitled Living With Borderline Personality Disorder.  It describes the change in ‘care’ and staff attitudes once difficulties are understood as a disordered personality. 

This report (where Keir was one of the authors) was put together by the British and Irish Group for the Study of Personality Disorder and it details a number of concerns about the use of "specialist" placements and their quality.  In the forward Sir Norman Lamb states:

"The truth is that we are spending vast sums of public money on private institutions which have a clear incentive to keep the beds occupied. This amounts to an enduring and unacceptable breach of people’s human rights"

In the same week the report was released, the BBC released a news story  and documentary that raised further concerns about how people are treated within units that describe themselves as specialist.  Keir was featured in both.  The items that we see most regularly in our work that were highlighted in the program included 

• patients whose risk of suicide escalated on admission being compelled to remain in the environments where they were most dangerous to themselves

• staff talking about how they had no specialist training for working on a unit that claimed to be specialist.

Keir  talked about the issues involved in "specialist" placements on the BBC here

Keir and Hollie contributed to this documentary about “BPD” alongside experts such as Dan Warrender and Peter Kinderman

Keir argued that inpatient treatment for those diagnosed with “personality disorder” has been privatised here

Keir and Hollie (along with Dan Warrender) published an article describing their concerns about the use of Clozapine for the people they work with in private units.  It was written after they (we?  I’m getting myself in a muddle here) wanted to quote something in the scientific literature describing the concerns around ‘clozapine for BPD’ and nothing existed.  Something exists now. 

Keir tried to highlight BPD awareness week and ended up commenting on the boost the Heard/Depp trial has given to the stigma around BPD here in the Independent.

If it gets annoying that we bang on about this all the time, we will be delighted when the voices calling for this change get louder and more diverse.  We will be looking for people to help bring about change in one of our workshops at this years British and Irish Group for the Study of Personality Disorder Conference.  We’re also doing sessions on the criminalisation of suicide and how to move on if we want to abandoned the construct of personality disorder. 

Beam was founded after we couldn't see any more traumatised young (predominantly) women sent miles from home to receive care that seemed unrecognisable from what NICE recommend.  While all the above resources may seem self serving, we are passionate about helping patients and staff feel more supported in their local communities.  We estimate we save NHS services around £200,000 for each person we work with.  

We'd love to talk to you more but if not, we hope you can consider the above resources either when thinking about a patient for who a "specialist" placement has been suggested or when reviewing people who are currently placed.  

Closed Cultures and "Specialist" personality Disorder Units

The Care Quality Commission has recently published its annual State of Care report looking at how health and social care services are functioning.  It’s interesting to see their concern about Closed Cultures – “a poor culture that can lead to harm, including human rights breaches such as abuse”

It begins by a quote from someone saying :

“It felt like all my experiences, past education, training and work counted for nothing because I was the one who was mentally ill and they were the ‘professionals” 

highlighting how dissent can be pathologized in such cultures.

It goes on to highlight particular features

• incidents of abuse and restrictive practice

• issues with staff competence and training

• cover-up culture

• lack of leadership and management oversight

• poor-quality care generally

• poor-quality reporting.

It might not surprise anyone who has read anything I’ve ever written to hear that the above criteria are to be found in almost every private unit I have ever experienced that claims to specialise in working with Personality Disorder. Lets have a look through them…

 Incidents of abuse and restrictive practice

 

The practice is rife.  Whether it was someone who only self-harmed in a particular location being confined to that location due to a feared risk of self-harm or 3 person restraints for incidents that would have passed without comment in the community, restriction is what the “specialist” units provide in abundance.  It’s harder to witness incidents of outright abuse on such units, but when reports and note entries refer to people as being manipulative, calculating or attention seeking, it gives an indication of the level of esteem people are held in and how they might be treated.  

Issues with staff competence and training 

 

In almost every tribunal and visit I do, a consistent theme is that the people delivering psychological interventions are generally not qualified to deliver them.  There is much use of assistant and trainee psychologists with a clinical psychologist rarely to be seen.  In the general staff team there never seems to be any specialist understanding of what they claim to specialise in, with the mantra “they do the dangerous things because they have a disordered personality” being the predominant way of interpreting everything. 

Our recent experience of going to a new “specialist” unit, meeting a senior clinician and hearing “we’re glad you’re here, we don’t know anything about personality disorder” is unlikely to be beaten but is more notable for the level of candour rather than the situation being unusual. 

Cover-up culture

 

I never see an admission that something has gone wrong and the patients fulfil vital roles here because they can be blamed for everything.  An escalation in risk is due to them, never the inadequacy of the environment.  An interpersonal difficulty is down to them rather than restrictive staff being people who might be hard to trust.  

Poor-quality reporting

This probably means something different but the reports and case notes I see convey very little understanding of why people do what they do.  Incidents are listed, the reasons why people do what they do are not.  

Poor-quality care generally

This is the most frequent experience.  The care on offer deviates, often quite markedly, from what NICE recommend.  The reasoning behind this is often that the guidelines written for people who self-harm and are suicidal can be ditched when people self-harm and are suicidal.  There is never any acknowledgement regarding how far care has moved from what is seen as quality provision, only that the person is still dangerous and needs to receive more of the compulsory poor quality care until they get better.  

Something the CQC doesn’t comment on is the relationship these units have with relatives.  My general experience is that if the relative thinks of the person they care for as being disordered and needing restriction then the relationship will be great.  If the relative raises any questions regarding the issues above then they become pathologized themselves.  Criticism of the system is seen as a manifestation of a disorder in itself. Quickly they are attributed all the blame for the problems that led to the person they care about being there.  They will be slowly ostracised and if they become distressed as the person they care about sinks deeper into their environment of poor care…well that can be pathologized even more.  

Now obviously I am very anti “specialist” private placement so you should take all the above with a huge bucket of salt.  What really struck me reading this today was just how the concerns of the CQC dovetail with what I’ve witnessed on almost every ‘specialist’ private unit I’ve been party to.  Much as I would like to be, I am not an RCT study and I haven’t seen every unit, but I wonder if there is something about a “specialist” personality disorder unit that makes it especially vulnerable to developing the closed cultures that worry the CQC.  I’ve previously argued such units are simply places for dangerous people to be warehoused rather than there being any optimism.  I’ve taken a bit of flack for suggesting these units are places who accept those that the NHS doesn’t want to work with.  If we combine a client group that raise anxiety in staff with a system that places people out of sight, out of mind, there’s some pretty good ingredients there for things to go wrong (and when they go wrong, unless a journalist has sneaked in with a bodycam, then the patients can be blamed). 

I’d really like the CQC to look at these “specialist” units more as even the ones I see with decent CQC ratings tick a lot of the boxes above.  I’d certainly like the claims of specialism to be interrogated a bit more as at the moment, you’re a specialist unit just because you say you are. 

At present inpatient treatment for those who receive a personality disorder diagnosis has been almost entirely privatised.  We spend hundreds of millions of pounds on this inpatient care while claiming there isn’t enough money for decent community services that at least carry some evidence base for being effective and bear some relation to what NICE recommend (Could there possibly be a link???) 

Everyone hates being invalidated.  We owe people who have survived neglect, abandonment and abuse more than confining them to these closed cultures.  We can do better than this.  

You can decide if this is shameless profiteering or a plea from someone who wants to effect change – Last week we did some training about “specialist” placements and 100% of the attendees said they would be less likely to use them at the end.  Let us help you avoid this.  

Keir helps people work with complex mental health difficulties through beamconsultancy.co.uk

Why those with a "Personality Disorder" diagnosis always sabotage (or do they?)

“I can't stand it, I know you planned it”

                   Sabotage, The Beastie Boys

People with a diagnosis of personality disorder self-sabotage,  This is a fact.  How do I know it’s a fact?  Because health care professionals regularly tell me this when I ask them about their associations with a “personality disorder” diagnosis.  It is a very annoying thing when somebody makes a considered, deliberate attempt to undo anything good but it’s always worth wondering if that is the exact thing that is going on.  Just imagine what it might be like to be told that everything that has just gone wrong is the result of your deliberate action?  That the mess around you is what you intended. That regardless of how much you are inconvenienced or suffering, it is exactly what you wanted and strived to achieve. What might that do to your sense of self?  What might you think about the person telling you this?  Let’s have a think about the term sabotage and see if we can up with some other ways of understanding what people do.  

Oxford Languages (googles first result) defines sabotage as to “deliberately destroy, damage, or obstruct (something), especially for political or military advantage”.  The key word here for me is “deliberate”.  Moby tell us that things fall apart, like they always do.  What I tend to find is that if a personality disorder diagnosis is involved, the reason for things falling apart will be placed squarely on the shoulders of the person with that diagnosis. Sabotage will be talked of, and any other explanations with be thrown to the wind.  Let’s have a thing about what, in the absence of a personality disorder diagnosis, some of those explanations might be. 

Marsha Linehan, the creator of Dialectical Behaviour Therapy and someone who identified with the diagnosis of “BPD” herself asks us to work and think by the following principle 

“All things being equal, we agree to search for non-pejorative or phenomenologically empathic interpretations of our patients', our own, and other members’ behaviour. We agree to assume we and our patients are trying our best, and want to improve. We agree to strive to see the world through our patients' eyes and through one another's eyes. We agree to practice a non-judgmental stance with our patients and one another”

Now I’m going to suggest that it is impossible to follow the above direction while saying that people self sabotage, that they “deliberately destroy, damage, or obstruct” their own wellbeing.

 Lets have a scenario that lots of people will be familiar with.  A young woman (it’s always a young woman) is on a hospital ward after being admitted due to escalating self harm and suicidality.  Things have settled.  The MDT think it’s time for discharge but they don’t tell her in case she “sabotages” the plan.  She is told at lunchtime that she needs to be gone by teatime.  She self harms in the toilet.  She isn’t discharged that day.  Everyone agrees that she has sabotaged her care and people are so confident about this hypothesis that the patient is told this is what they did.  How do I know?  I was there.  This is a true story (stories – happened all the time).  

Lets have a think about some other possible interpretations of what went on. 

I’ve worked with some people who like fixed and concrete plans.  A sudden change of plan is massively unsettling.  A way to deal with massive upset is to self-harm.  The behaviour might have stopped discharge, but that wasn’t the intent.  

I’ve worked with others whose primary aim is to stay safe and their firm belief is that an inpatient ward is the place to do that.  Some of those people know self-harm will keep you on a ward.  If they disagree that discharge is best, it makes sense they will do what they can to stay safe.  Is this then sabotage of care or an attempt to maintain care?  If people have different goals to their MDT, is it sabotage for them to pursue their goals?

I’ve worked with people who hate themselves.  “Discharge in 4 hours” sounds a lot like “We don’t like you, you can fuck off now” especially when delivered out of the blue.  It would make sense that people validate their self-hatred by hurting themselves.  Is this a deliberate attempt to destroy their care or is it nothing to with destruction, it just happens to have the effect of changing other peoples plans even though that wasn’t even considered.

I’ve worked with people who have had every aspect of control and autonomy in their lives taken away.  The only thing they have in their lives that brings them into people’s thinking or influences what people do is the danger they place themselves in.  When they are told X is happening and they don’t want it, Y is often the only way to push back.  The only way to have any control.  Is that a deliberate attempt to wreck their long term goals or again, does it change the plans of others?

Are you thinking that there might be some other reasons that I haven’t mentioned?  You’re right.  There are millions.  The best answers will be the ones we elicit from the patients themselves but if not, “deliberate self sabotage” should be the last option on our list. 

I’m going to give another example.  We were working with Sarah (all my pseudonames are Sarah) who had a huge drug problem.  We got really involved.  We helped her move to a new area.  We got grants and bought her some basics for the new flat.  We celebrated her first night alone in her new place.  We cursed her for sabotaging all our efforts when she sold her basics and bed linen to buy drugs.  What I realise now is that whatever I wanted, Sarah’s priority in that moment was to be away from whatever was in her mind, as it had been for the months before.  We hadn’t tackled the things that made Sarah want to be unconscious, we just helped her take those awful thoughts to a new place.  Sarah didn’t sabotage anything. We lost sight of the fact that our goals and Sarah’s were different, we didn’t talk about that with her and when she went with her goals rather than ours we got annoyed with her rather than considering why our goals were more important than hers.

I’ve made a lot of impulsive decisions in my life, some of them have taken me away from my long term goals.  Even at my most critical, self-eviscerating moments I would struggle to define those times as a deliberate attempt to rip my life apart.  When we look people in the face and tell them that their actions are a deliberate attempt to tear down anything good in their lives we will almost certainly be re-enacting the part of somebody who has hurt them.  ‘You asked for this’.  ‘You’ve got what you wanted’.  “It’s all your fault”. We, those who are supposed to care, will be telling them that they are the authors of their misery and that this is what they wanted all along.  That the whole mess is of their creation and of their desire.  If we are replicating the words of somebody’s abuser, we’ve probably stopped providing care. We will never be struck off for saying people sabotage, but the reasoning behind such a statement is surely outside all of our codes of practice.

So should we celebrate an event that brings plans crashing to the ground?  Absolutely not.  It’s incredibly frustrating but before looking to diagnosis to give us a stigmatising explanation, lets exhaust every possible empathic explanation first.  We can still be annoyed, angry, frustrated and feel useless.  As Linehan would again remind us, the result of behaviour is often not the deliberate intention.  We can feel all these things without blaming the patient for deliberately eliciting them. 

Before we end, I have worked with those who have told me that they wanted to tear things down.  It was all they could do.  In a world where they were nothing, they were only something in the minds of people when they validated their sense that they were beyond help.  They inspired a great deal of sympathy from others, but also a lot of resentment and anger.  The important thing to remember is to let go of the self-centredness and narcissism that we as a staff member can hold – much of what we take personally in work isn’t about us.  

I don’t think the term sabotage has a place in the empathic, relational model of working most people agree is the foundation for helping people in their lives.  It locates all problems in the one person who probably has the least influence over what is taking place.  Let’s always strive to empathically understand why people do what they do and, if risks escalate at a time when we know things are more stressful, perhaps if we change the plan in response we are the ones who might be sabotaging something. 

Keir helps people work with complex mental health difficulties through beamconsultancy.co.uk 

Mental Health Act Tribunals and the Irrelevance of Occupational Therapy

In the UK, if you are detained under the mental health act against your will, you have the opportunity to appeal your detention.   You’ll be appointed a solicitor and they will listen to your instructions and help you argue that you shouldn’t be detained because either your problems aren’t of a nature or degree that require compulsory treatment and/or that detention isn’t required to protect your health, your safety or the safety of others.  Your solicitor might get some independent experts in if they can help with your case.  An example might be bringing in another psychiatrist to say that your doctor has got your diagnosis all wrong and that the treatment you’re being offered looks nothing like what you’re supposed to get.  

I’ve written in the past that I really enjoy doing tribunals.  I think the reason I enjoy them is that they help me feel very effective in my work.  So far, every person I’ve done a report for is someone who did risky things in the community, does near lethal things in a restrictive environment, has a care plan that looks nothing like what quality care is supposed to look like and is being kept in an environment where they have been the most dangerous to themselves ever.  The plan is to keep them in this environment until they stop doing the things they only do in this environment.  I’m very fortunate in that every tribunal panel I’ve presented this argument to has discharged the person appealing their detention.  Now in some ways, this isn’t the typical role of an occupational therapist.  In other ways you can argue that making sense of peoples actions and the way the environment influences their functioning is as OT as you can get.  

I got into this because after bleating about the injustice of prolonged detention for those given a ‘personality disorder’ diagnosis, a relative of someone detained contacted me and asked if I could help.  I think it would be fair to say that this relative was tenacious, driven, and exceedingly goal directed when pursing the best care for their offspring.  They persuaded their daughter’s solicitor to talk to me and after that conversation I was instructed to do a report and come to a tribunal.  The appeal was won and the barrister and solicitor involved were kind enough to say that my evidence was a significant factor.  

I waited to be rushed off my feet with similar invitations but nothing came.  After about six months I got a call from a different firm of solicitors.  The barrister I’d worked with had recommended me and on that basis, I did some work for that firm and eventually another again, after being recommended by the barrister.  I’ve done multiple reports for these firms now and because there are so many young women detained in private hospitals offered nothing like a specialist service, they keep being discharged from their sections.  

In some ways I’ve been slightly frustrated that I don’t get to work outside of the 2 solicitors that use me regularly, but a part of me just assumed that this is how the tribunal system works, that different solicitors have experts that they use regularly and in some ways it’s luck whether or not you get ‘found’ by other companies.  

This assumption was challenged this week.  Once again I ended up talking to someone who had a relative detained in a private hospital.  To make sure they don’t end up paying me anything out of their own pocket, I always advise them to talk to their relative’s solicitor and  they can then instruct me under legal aid if it’s agreed I might be helpful.  I had a chat with their solicitor and I outlined what I’ve done in the past and how my areas of knowledge might influence a decision to continue or cease someone’s detention.  Once we’d agreed I might be helpful we came to the assumption rocking bit.  We talked about how it was easy to apply for funding to get an independent medic, psychologist or social worker, but it was hard to work out how had solicitors justified getting funding for an OT report in the past.     While I’d known my work in this area was relatively novel, I hadn’t realised the hoops solicitors had had to jump through to be able to get me involved.  Those I’d previously worked for had either had a desperate parent or a Queens Council barrister pushing for me to be involved.  It was only when speaking with someone outside of those influences that I realised that it wasn’t that having an OT involved was novel, it was like it couldn’t be contemplated.  There seemed no obvious way to get a legal aid panel to possibly sanction the involvement of a profession so obviously distanced from the tribunal process.  

It had never occurred to me before that my profession was ostensibly so irrelevant for establishing whether someone met the criteria for involuntary detention under the mental health act.  I’ve nothing against the solicitor I was talking to here, they were just really helpfully reflecting the impact OTs have had on this process so far.  

As you might have suspected, I’m going to suggest that we have a lot to add to this area.  We help people with what they want and need to do, we look at the skills they have to do it and we look at how the environment supports or hinders them doing this.  

““Nature” involves a longer-term view of the condition: it can involve a consideration of whether the patient, if discharged, would be likely to relapse in the near future. For “nature” you can consider issues such as insight into the need for treatment in the future”

We can have a view on this.  We can consider not just the person but the physical and social environment around them.  We can also consider whether the ‘nature’ of the difficulties might make detention inadvisable.  A history of being made powerless and hurt by people who were supposed to care for you may mean that prolonged detention in a place where you are powerless and don’t trust those around you might not lead to life feeling jolly. 

“Degree” refers to the severity of the condition at the time of the hearing

Again, we can have a view on this.  Are things so bad that someone should be detained against their will?  Can they function? If not, why not? A really useful thing for us to have a view on might be “have changes in the physical and social environment resulted in an increase in severity?”.  I’m not seeing other professions answer these questions,  but those professional’s views impact on whether our clients live lives behind locked doors or in their own homes.  Surely we have relevant things to say about this? 

Danger to health, self or others

Because we are talking about the actions people take I think again, we can put forward a view on this.  We can differentiate between self harm with a clear rationale and actions aimed towards dying, we can explore what has led to violence in the past and whether the circumstances will be the same in the future.  We can bring a clear understanding of why people do what they do that is more useful than “because they are ill”.  A good read of anything by Rebecca Twinley will help a lot with this.  

I almost wrote that if we don’t get vocal about occupations that result in harm, we make ourselves irrelevant in this area.  Because of my experiences this week I need to write “we will continue to be seen as irrelevant in this area”.  Then I start thinking about NICE not wanting OTs on the committee to review NICE guidelines and I start to feel despondent…

Anyway, if nothing else, being locked in a hospital has a pretty hefty impact on someone’s ability to function so if we are working with people who are detained, we need to be pretty certain that this restriction is in their best interests.  

I’m pretty sure that once I post this, someone will comment that it’s awful we don’t get invited to submit reports for tribunals.  It is awful, and we can’t wait to get invited.  

If this sounds like something that might interest you, try to push against the idea that the intervention of detaining someone in hospital is the domain of other people.  Express a view.  When people involved in the tribunal are around, give them your opinion.  Ask to sit in on a tribunal – they can be scary places but much of that is due to it being unfamiliar.  Listen to how experts are questioned.  Consider how you might answer these questions.  Wonder if the perspective of your profession might add something to the debate.  If you come to the conclusion that your profession has nothing to say that is relevant to these proceedings, have another think.

Let your patients know that you have something to say that might help.  Encourage them to ask their solicitor to contact you (this has never worked for me).  In the past I have contacted solicitors of patients  and suggested they ask me to attend the tribunal.  It’s generally not something that makes you popular with your colleagues, but if you think detention is harming someone, you don’t really have many other options.  

The next step, getting solicitors to request your input as an independent expert, is a lot harder.  At present I think many will think of us as irrelevant.  We need to combine a stronger presence within this process with some assertive marketing around what we can do.  No one will do this for us.  If this is an area we should be involved in (and interested to hear from those who think we shouldn’t), then we need to get in there and show our worth.  

As I’m writing this I’m waiting for a tribunal to start.  I know that in an environment where guidelines exist describing good practice around medication, a psychiatrist is going to assert that as a non medic, I cannot have an opinion on practice that beaches that guidance.  Lets see how that goes…  

Many thanks to twitters @asifAMHP for looking over this for me. He is a MHA guru

It’s #TimeToTalk about HarryPotter – The reality of 11 years in a cupboard

It is February 4th and this auspicious day brings together 2 great celebrations.  Firstly it is #TimeToTalk day and secondly it is #ChildrensMentalHealthWeek.  At first glance there is no obvious connection but….lets take a close look. 

Time to talk day “is all about bringing together the right ingredients, to have a conversation about mental health”.  Last year I wrote a piece about the value of talking – not so much going to services and asking for help, but sharing some of the burden that we carry with those around us.  I took a bit of flack for writing it, partly because I think I lost sight of the privileged position I inhabit – I’ve led a life that has given me the conviction that I’m worth something, and I know that there are people around me who are interested in me and want to help.  It is a lot harder for people who haven’t had these gifts and I know full well that getting help isn’t as simple as asking for it.  What I wanted to get across last year is the relief that can come from sharing your worries with people.  

I work in a therapeutic community and for all the times I’ve seen people struggle with something that ‘cant be said’, not once have I seen people experience anything like the rejection they expected.  Equally in my own life, the things that I thought were too hideous to be unveiled seemed to lose a few warts when brought into the light.  Too many people will kill themselves without ever sharing any of their despair and I’d urge everyone to try to make an effort to make mental health (or ill health) something that can be talked about.  That might mean taking a risk and sharing something with people you trust, more importantly it might mean letting the people you care about know that that conversation would be ok.  

So this is all very worthy, but what does this have to do with Harry Potter?  I loved the Harry Potter books and my children are now picking up my old books to follow the adventures of the hero of the wizarding world.  Harry has a range of people who care for him and he inspires them to be a force of good in their lives.  

My experience of the world tells me that Harry is in a relatively unique position.  His parents died in his infancy and he was placed in the care of the pantomime villain-like Dursley family.  He spends the first 11 years of his life living in a cupboard under the stairs.  He is treated like a servant by the adults and bullied by his stronger, bigger cousin.  For 11 years he is constantly criticised, belittled and told that everything is his fault.  He is punished for trivial misdemeanours by being locked in the cupboard.  His birthday is never marked and his clothes are the massive hand me downs of his larger cousin.  We might imagine this leads to further bullying in school.  These tend not to be the ingredients for a charismatic leader.  

I work with a number of people who have had similar childhoods to Harry.  They didn’t go to school and make friends, instead they went to school feeling utterly worthless and fully deserving of any mistreatment doled out to them.  Their relationships with their peers and teachers were shaped by their core belief that they were insignificant, that no one would be interested in them, and that any interest that was shown was only to humiliate them more later.  The self hatred they experienced led to them acting as if they were deserving of hate.  They would hurt themselves or let others hurt or use them.  Their experience of others led them to believe that they shouldn’t be in the world.  Sometimes they sought death but even in the best of times (which were few) death wasn’t something to run away from.  Sometimes they would connect with another person but their conviction that they were unlovable led them to acting as if that was true.  It could also lead to them spending time with people who treated them like they thought they should be treated, because care and kindness felt too wrong.  They often end up with a diagnosis that labels them as being flawed in some way when all they have done is learn what the world has taught them.  

Harry made friends in his first year of senior school.  He also found adults who cared for him and one in particular who became something of a father figure.  At the end of the first school year this father figure sent him back to the people who kept him in a cupboard.  The argument was that it stopped him from being killed.  The reality would probably be that he would end up wanting to die.  

We cant expect little Harrys to tell us about their misery and neglect.  It’s more than likely that they  won’t know any different.  We need to keep our eyes out for the children who are continuously sad, the children who are never made to feel special and who are dressed in ways that could only bring humiliation.  When we see such things, it time to talk.  When little Harry’s are talked of as being disordered, its time to talk.  When there is no help for people like Harry, or the help only makes things worse, it might be time to shout. 

Thanks to @hoppypelican for helping me shape the ideas for this blog.  

Keir provides consultation, therapy and training to help people with experiences like Harry’s, via www.beamconsultancy.co.uk

A podcast covering similar issues to this can be found here: https://anchor.fm/wkom

DBT: The therapy with the most user involvement ever….

TW – Self Harm

Yesterday I did something I haven’t done for a long time.  I sat down and read a book cover to cover.  The book in question was Marsha Linehan’s, Building a Life Worth Living and while I’m going to suggest that it’s audience is going to be limited to people interested in this area, I found it captivating. 

Keir provides supervision, therapy, training and consultancy around what gets described as “personality disorder” via www.beamconsultancy.co.uk

What will probably be a surprise to most people is the level of lived experience of self harm, suicide and institutional care Linehan experienced.  She describes being an intelligent, popular girl with no obvious problems until the age of 18 when she started having recurring headaches with no obvious physical cause.  After a period of her doctor scratching his head she was sent to the local psychiatric hospital for 2 weeks evaluation and so began her descent into hell.  Marsha feels she didn’t meet any of the diagnostic criteria for Borderline Personality Disorder before going into the hospital but like many people I’ve worked with, something about her reaction to the restrictive environment and the staff reaction to her reaction meant that pretty soon she ticked a few boxes.  She began cutting, burning, overdosing, and smashing her head on the floor.  She blames her severe memory loss on this and the ECT she was compelled to receive.  Her 2 week stay lasted 2 years and 1 month including a hospital record of 3 months in seclusion.  It was here that she made a solemn and holy vow that she was going to get out of the suicidal hell she was trapped in and make sure she could get others out of hell too.  

It’s not plain sailing from here and we read about further suicide attempts, the threat of prosecution for attempting suicide and a Kafkaesque moment where the crisis line couldn’t talk to her on the phone to help her stop self harming, so sent the police around to take her to a psychiatric hospital.  The more she protested that she was now ok, the more they wanted to detain her.  

For all the criticisms DBT receives – many of them justified but many of the ones I read being about it being poorly implemented – there is little denying that this therapy originates from someone who has lived it.  Does that justify ways of interacting with people that have been described as rude, cruel and childlike?  Perhaps not but we are often encouraged to listen to the voices of those with lived experience and this voice has been given more volume than most.  

The rest of the book tells an interesting tale of her drive (and she does sound driven) to help people who were recurrently suicidal that the rest of the psychiatric world wasn’t interested in.  She describes a battle to help those who were marginalised in institutions that were frequently disinterested and misogynistic.  She recognises some interpersonal problems and being viewed as a difficult woman, a description attached to many articulate, intelligent passionate people I know.   She describes putting a therapy together that initially didn’t work.  She had up to 8 people watching her at a time, constantly making changes to develop a way of working that helped people to accept themselves while pushing them to change.  

In the book I recognised some refutations of some of the common criticisms I hear of DBT and Linehan herself.  Firstly that she only ‘came out’ as having lived experience after she had made her money with the therapy.  As well as her taking a vow of poverty early in her life and spending much of her income housing the homeless, she was advised by two leading international researchers that telling the world about her experiences would cripple her chances of getting funding to prove DBT worked.  

Another criticism is that DBT wasn’t developed for people ‘with BPD’.  She is clear from the offset that she wanted to help people like her stuck in a cycle of suicidality.  It was late in her career that she learned about the existence of a diagnosis called BPD and she stated her therapy was for the people who got that label because that was the label given to those she wanted to work with.

“I don’t think of myself as treating a disorder.  I treat a set of behaviours that gets turned into a disorder by others”

I was captivated by this book although I think I’m more interested in this area than most.  For those who have an interest in what gets described as personality disorder it is very interesting.  For therapists and service users who want a story of how someone can get out of hell, it’s useful for that too.  There is a lot of God and spirituality in this book which some might find off putting.  Given that it has played such a dominant role in her life, I was surprised how relatively little it is a part of DBT.

A cynic might see the book as an advert for DBT but I think it’s better explained by someone who is fanatical about their life’s work.  I don’t think it is a particularly literary work, but I did find myself moved by a number of passages, literally to tears on occasion.  I certainly see DBT in a new light having read the biography and if you’re interested in personality disorder, DBT, user involvement or mental health in general, this is a good read for you.  

Keir provides supervision, therapy, training and consultancy around what gets described as “personality disorder” via www.beamconsultancy.co.uk

How to Categorically Tell if Someone has a Personality Disorder (with Game of Thrones and Donald Trump)

At some point I’m going to write a great treatise on what I think of diagnosis and personality disorder, but today I’m just going to focus a bit on how the diagnostic criteria for personality disorder is interpreted and applied.  Because that’s something of a dull topic, we’re going to explore this with a few extra dragons, knights and sorceresses than your average medical textbook.

Now as an Occupational Therapist, I’m generally not that interested in diagnosis.  I’m far more concerned with the difficulties people have and the impact those difficulties have on their lives.  As a pedant however, I’m very interested in what rules are and what it means when they’re not followed.  I was particularly irked this week to read a blog hosted on the British Medical Association website saying of personality disorder “There is usually no history, just a sudden change”.

Now this is just wrong.  If we have a glance at the DSM 5 (the big book with all the illnesses and disorders in) we can read about someone’s difficulties having ‘onset in adolescence or early adulthood and being stable over time’.  If someone’s personality suddenly changes, ‘disordered’ or otherwise, you’re better off checking for a brain injury or whether there are any recreational substances floating around their bloodstream.  That the BMA hasn’t bothered to correct anything in the blog they hosted reflects very badly on them in my opinion, however, they are not the only people I think are misapplying diagnostic criteria this week. (There’s a better critique of the BMA blog here)

Andrea Schneider has written a series of blogs where she goes through characters in the TV series Game of Thrones and identifies problematic personality traits.  I’d recommend you check them out as they’re quite entertaining, however, Andrea goes on to diagnose characters and it’s here I don’t think the diagnostic manual is being followed.  Just before we start, the entire series of GOT should have TRIGGER WARNING plastered all over it and what I write below is going to reflect that.  Here we go…

In blog 1 of Andrea’s series she diagnosis Cersi Lannister with Antisocial Personality Disorder.  Cersi is one of twins who lost their mother at an early age.  Her younger brother was identified as killing her mother during childbirth and she was taught that he was less than human, someone to taunt, hurt and insult.  Her father was renowned for his ruthlessness and cruelty and she would have seen regular examples that people who are against you should be humiliated and annihilated. Cersi had little experience of love, her biggest attachment being to her twin brother.  When their play became sexual, they were separated with guards at the door to prevent them keeping each other company at night, the message being that their feelings of love were dirty, wrong and something to be punished.  Once their mother had died, Cersi and her twin brother became closer and their sexual relationship an open secret that if not approved of, was openly tolerated.  Cersi was given the message by her father that her feelings were not important and that her value was in who she could be married to.  She was told on a number of occasions who she would marry without her having any say.

Now regardless of what we think of the term ‘personality disorder’, we would probably agree that anyone living through those experiences would grow up with some ideas about themselves, other people and the world that, while totally appropriate for the environment they have come from, would cause difficulties if they were suddenly plonked down onto the streets of London.  Cersi grows into an adult with her fathers cruelty, perhaps a paranoia that others are plotting against her, a disregard for the feelings of others and certainly some high levels of impulsiveness.  Now if someone walked into your clinic tomorrow with these features which had been present for a long time (remember the DSM!) it might be accurate to say that they fit with what the textbook describes as Antisocial Personality Disorder.  If your clinic was in Westeros (the setting for Game of Thrones) I’m certain that this wouldn’t be the case.

To visit the DSM again, it tells us about “inner experience and and behaviour that deviates markedly from the expectations of the individuals culture”.  In other words to get a diagnosis, you need to be very different from everyone else around you.  We have covered the cruelty of Cersi’s father who for example, had his son watch as his wife was raped by all the guards of the palace.  Cersi’s husband regularly raped her and made no secret of his frequent infidelity.  Her brother in law burned his daughter alive and killed his other brother.  The ‘mad king’ was busy burning many people alive, the Freys in the North were happy to massacre hundreds of people who had sat down for dinner with them, the princesses down south assumed power by killing their brother and the Lady of high garden thought it best to have the king vomiting to death on his wedding day to make sure her daughter could marry someone else.  Across the sea Daenerys is seen a a good person, but even she is content to burn people alive and crucify thousands.  When we compare Cersi to her peers can we honestly say that her behaviour ‘deviates markedly’ from what others are doing? We can’t.  She hasn’t even killed the most people.  When looking at diagnosis people often lose sight of whether a person’s behaviour is entirely adaptive given the background they have come from, or even the environment they are currently living in.  Put bluntly, if everyone has got ‘a personality disorder’, then no one has got a personality disorder.

As a slight aside, there is someone in Game of Thrones it might be possible to pin a label on and make it stick.  With his behaviour that was markedly different, with his attitudes and values that couln’t be adapted and that led to huge amounts of stress and the impairment of having his head cut off, Ned Stark is the person whose way of seeing himself, others and the world caused him the most problems.

While we’re looking at the misapplication of diagnosis, lets have a quick peek at a tyrannical leader a bit closer to home.  This time were going to hang onto the “leads to distress or impairment” part of the DSM.  Donald Trump frequently has people throwing the label of Narcissistic Personality Disorder at him.  And narcissistic he is.  Impulsive too.  But are his behaviours enough to say that he has a disorder?  Party politics and emotions aside, we need to look at the fact that he was elected President.  We need to acknowledge that whatever vacuous statement he throws out to contradict the last clanger he dropped, a sizeable braying mob will applaud, cheers and believe his lies.  He may well be a very dangerous man, but he is adored by his followers because of who and how he is.  Whatever you think of him, his way of being has, rather than caused him problems, got him into the position of being the most powerful man in the world.  God help us all.

Whenever you’re thinking that someone’s presentation fits with what the textbook would define as personality disorder, you need to consider the 3 Ps.

Are the difficulties persistent?  This was the mistake the BMA blog made.  You’re looking for issues that have been around all their lives.  Not something that comes out of the blue.

Are the difficulties pervasive?  Do they affect every aspect of the person’s life or are they limited to specific situations?  If they’re very contained then whatever PD criteria you’re trying to apply isn’t going to fit.

Are the difficulties problematic?  This is the mistake the Trump diagnosers make.  Just because you loath someone, if your loathing doesn’t impact them then its not a problem for them.  Its a problem for you.

Now this blog is very silly, but I hope it makes some serious points about how diagnostic criteria is applied.  It is by no means an argument in favour of diagnosis but just a suggestion that if you are going to use diagnoses, then at least do it properly.  If you have a look at this there’s a link to a publication from the National Offender Management Service which has all the diagnostic criterial you could dream of.  People often feel that if they can absorb this then they’ll be more effective in their work but honestly, you’re far better off talking to people and creating a narrative out of what they tell you rather than plonking a label on them.  Diagnosis can obscure people’s stories and it’s those stories that matter.  Go weave some stories together.

All the above are ideas rather than truth and many other ideas are available online.  Do let me know what you think.

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

Should Occupational Therapists be Care Coordinators?

This question popped up on social media the other week.  Over all my time working in mental health I’ve often seen this debate going on, although it’s sometimes framed Generic Vs Specialist working. 

Intrusive advert: Keir provides supervision, consultancy, training & therapy via beamconsultancy.co.uk

For those outside of the UK, or those who haven’t had the pleasure of working in mental health, it’s probably worth exploring what care care coordination is. So in the uk, people with more complex mental heath problems are seen within secondary care.  This is likely to be a community mental health team.  If you are among the most complex of the most complex you will get a care coordinator.  The mental health charity Rethink say a care coordinator will:

Fully assess your needs:

Write a care plan which shows how your needs will be met

Regularly review your plan with you to check your progress

Your care coordinator should consider the following needs:

Your mental health needs

Medication and side effects

Employment, training or education

Personal circumstances including family and carers

Social needs

Physical health

Potential risk to yourself or others

Problems with drugs or alcohol

What you can probably add to the above list is going to safeguarding meetings, arranging reviews and professionals meetings, being the go to person when the person you work with is in crisis – which might involve getting extra services involved, arranging an admission or mental health act assessment or staying involved once someone is in hospital.  

I spent a fair few years being a care-coordinator for people.  Mostly in a CMHT, but also in Assertive Outreach and Early Intervention.  What I learned over time was that care coordination is boring.  Not all of it, the opportunity to build a relationship with someone over months or years was fantastic.  The filling out of forms was not.  The bureaucracy and associated paperwork is mind numbingly dull.  In all my time doing these forms no one was particularly interested in the quality of them, merely that they had been done.  And the pressure to fill them in was relentless.  Not only was there the need to complete an assessment and risk assessment and crisis plan almost within an hour of meeting someone, but these had to be updated and signed by the  client every time you did a review and every time there was an admission.  Unmet Need forms needed to be completed and it seemed that for anything to happen, there was a form that had to be filled out.  There were days that I filled in forms about people that I wasn’t seeing because I was filling in forms.  It felt pointless, an exercise in box ticking and (to steal a phrase from my old lecturer “As if the performance management aspect of the primary task had become the primary task itself”.  

In stark contrast to the organisational anxiety and zeal around the completion of forms was the total disinterest of those who were in the service looking for help.  This isn’t to say that they weren’t very concerned about the quality of what they were receiving, just that the filling out of forms was something that got in the way of the work, rather than made it better.  The only times care plans became important for those I worked with was when things had gone very badly wrong.  Obviously some sort of system is required to identify problems and how they will be addressed, but for me the entire system seemed set up to demonstrate that ‘something was being done’ often at the expense of anything being done at all.  

With the paperwork out of the way (it was never out of the way, it just went further away from the front of your mind for a bit) there came the real work of actually helping people.  This could be disrupted quite quickly.  A client in hospital appealing their detention?  A 2000 word report is required.  A phone call saying a relative is concerned?  You’re going to need to follow that up.  

All the above is what my nursing, social work colleagues and I did day in, day out.  They would also do periods of ‘duty’ where they would man a phone in the office and be the first port of call for anyone phoning the office.  My memory of the spectrum of calls involved everything from a man who wanted to die to a nun who was organising a coffee morning who wanted to know if one of our patients was allowed a cake.  It was chaotic, but it was enjoyable and rewarding.  

While I was working in the CMHT there was often a lot of pressure to work differently from the rest of the team.  Despite the fact that many of those in the service had been there for years and had histories crammed full of neglect, abandonment and abuse – the OT department were keen for all the work to be done in 12 weeks.  This could be anything – anxiety management, healthy eating, linking into voluntary work, supporting to return to education….all of these and more – as long as it could be done in 12 weeks.  If part of the reason that you were in the CMHT was that you had difficulty trusting others and believed that life would always be a shit as it had been – then that was you shut out from the 12 weeks of gold.  A ‘lack of motivation’ was something to be penalised for, rather than something to be curious about.  It seemed like there was a desire to provide a primary care service within secondary care for the noble reason of….I don’t know.  There seemed to be no sense to it at all.  

So there’s a view that when things are at their best, the work within mental health is structured, consistent and predictable.  OTs often want to work in this way as it’s often the time that you feel most confident in what you are offering and you see the most benefit to those you are working with.  The problem is that pretty much everyone wants to work in this way.   I’ve never seen a social worker turn cartwheels at the prospect of writing a mental health act report nor seen a delighted CPN cancelling a group because a patient hasn’t been seen for 3 days.  Few people relish doing duty.  But….somebody has to do these things.  Some of the jobs in the CMHT are boring, soul destroying and take you away from what you’d rather do.  The question I always consider is why these relatively less rewarding jobs should be the domain of ‘others’.  I know a lot of OT’s who would say that arranging a mental health act assessment isn’t the role of an OT – and maybe it isn’t, but it isn’t the role of a nurse or social worker either.  

I have 2 concerns:

Concern the first

If we are precious about the work that we do, if we see ourselves as massively different to the rest of the CMHT I worry that we argue ourselves into being less useful than the rest of the team.  Teams will advertise for generic posts that are nurses or social workers while we exclude ourselves from opportunities to show our value.  I was in a meeting once where an OT was complaining about psychiatrists wanting people to come to them rather than going to where the others were – “It’s as if their time is more valuable than hours”.  I wanted to feed him his payslip.  OTs bring a unique contribution to the MDT but it isn’t worth any more or less than our nursing and social work colleagues.  Let’s be team players and get dirty with the rest of the gang.  

Concern the second

I work with people who are often dangerous to themselves.  At one point I think I did this quite badly but after years of duty, crisis management, supervision and time with Lived Experience Practitioners I’m now seen as someone to look to for advice and support when working with people who might die.  I’m going to suggest that this is relatively rare for an OT and I really don’t think it should be.  Not knowing who is going to come through the door is exciting.  Talking through difficulties with those who are suicidal is rewarding.  In the past my OT managers actively steered me away from doing duty and responding to whatever problem someone had at that time.  They encouraged me not to work with people who were chaotic and they gave me the message that anyone living with high risk was the domain of some other discipline.  Had I listened I could now be in a place where I worked in a CMHT with a sense that self harm, suicidality and acute mental health crisis is someone else’s job – which would be ridiculous as that seems to be the majority of the work of the CMHT.  We do ourselves no favours at all when we refuse to develop skills in some of the most pressing problems of mental health.  

In a perfect world the bureaucracy of care coordination would be minimised and we would all do the therapeutic work that we wanted.  In an imperfect world we need to help out with the work that our colleagues resent just as much as we do.  Don’t be an OT that doesn’t help the team.  Don’t be an OT who disappears when things get tough.  Consistency and reliability doesn’t always mean being in a room on time for people planning on how to hold things together.  It might mean being round their house while their world falls apart.  

Keir provides supervision, consultancy, training & therapy via beamconsultancy.co.uk

Many thanks to Hollie @hoppypelican, Leanne Algeo @luvlea85, Sophie and Amy Boot @amyelizaharriet for kindly looking over the drafts of this blog and giving some useful feedback.  Any errors, typos and bizarre ideas are entirely mine.  If anything is coherent or makes a modicum of sense that is purely down to them.