Prediction 1 – 2020 “The year we talk about BPD?”

It is the first week of the new year!  A time when resolutions with no chance of success are made as we stare into the future with an optimism that things might be better.  In the spirit of gazing into crystal balls to peek into what lies ahead, I thought I’d share my mental health/“personality disorder” predictions of the year to come.  Let me know what you think on twitter, Facebook or comment below and I’m interested in any predictions of your own.

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

1- 2020 – The Year Borderline Personality Disorder becomes more mainstream.

In general I’d say the public knows very little about personality disorder.  Part of what makes me say this is that too many mental health staff know nothing about it either.  What do I think is going to make this change?  Well the year begins with the Royal College of Psychiatrists launching their Position Statement on Personality Disorder.  This will get the diagnosis talked about, not least because I think theres likely to be some controversy around how the ideas are presented.  The profession of Psychology has already put out their de facto position statement in the form of the Power Threat meaning framework, and I wonder if the other professions will now feel obliged to say something about those with this diagnosis.  It is becoming increasingly unacceptable for professionals to say they don’t work with this client group and my hope is professional bodies increasingly make this explicit.  

Outside of mental health world, the term personality disorder is increasingly coming into public consciousness.  In 2019 we’ve had the UK actors Nicola Thorpe and Joe Tracini talk about their experience of being diagnosed with BPD, alongside the American comedian Pete Davidson.  There’s lots of campaigns that try to get us to talk about about mental health more, but I think the modelling that high profile people have this diagnosis will make it easier for us to discuss issues around it more.  In addition the campaigner Sue Sibbald has made it onto the New Years honour list (to my knowledge the first person associated with Personality Disorder to receive such an honour) which I think will again help to stimulate debate.  

In the media we have Hattie Gladwell of the Independent regularly talking about her diagnosis and people like Paul Kelso at Sky looking at inappropriate detentions.  The stigma, exclusion and harm caused to people who get this diagnosis is being talked about more and more.

Now many people will think that wider recognition of a mysogenistic and harmful construct is nothing to celebrate whatsoever.  I might well be wrong but I think its very difficult to critique a concept that no-one has any idea about.  People don’t respond to issues they are ignorant of, and I think they’re more likely to be concerned about people who have lived though neglect, abandonment and abuse if their plight is talked about more, particularly when the wrongs that have been done are labelled as a disorder in the person themselves.  

One disadvantage to this is that the UK parliament has lost the one person with an MP badge who I’ve ever heard mention the term personality disorder, let alone put his name to something critiquing the label.  Norman Lamb leaves a hole in parliament far larger than the space he took up.  I hope someone else sees the continued exclusion and discrimination of this client group as a cause worth fighting for.  If nothing else I hope someone considers we could save money by not locking people in locked rehab facilities miles from home.  

2020, the year “Personality Disorder” enters the public consciousness??  Let me know what you think. 

Unspeakable Thoughts: When staff think “If you were going to kill yourself you’d have done it by now”

Trigger warning – Suicide, Dismissive ‘care’

This phrase has popped into my head a few times over the years.  Mostly, when I was first starting out in the community mental health team and I had my first taste of doing ‘duty’. ‘Duty’ (I have no idea where this name comes from) involved being in the office and fending off phone calls; seeing someone who pitched up at the building; or leaping into a car to go on an emergency visit. It was here that I first came across people who were recurrently suicidal.   

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

The first time I listened to a detailed description of how someone had prepared their method of suicide and was now phoning me because it was in their care plan to ask for help, I was terrified. I felt it was my duty to keep them safe. I suggested solutions, I reassured, I tried to instil hope. I probably suggested hot baths and milky drinks. All to no avail. I remember the first conversation ending with no reassurance that they could stay safe, so I sent an ambulance round and crossed my fingers. They were suicidal. I was the last person to speak to them. Could I live with myself if they died? Would I be blamed for not doing better or not doing enough? I spent the weekend worried I’d find out they were dead on Monday and when all seemed well on the Monday morning I breathed a sigh of relief.   

Fast forward 3 years and I’d probably had the same conversation with the same person 50 times. When I heard their voice on the phone I started to feel less compassion and more annoyance. Rather than my first novel experience of trying to save someone, I think I was frustrated, bored and eager to get the conversation finished. My colleagues supported me by reassuring me this person would never kill themselves and while we would occasionally still send ambulances if ‘the right words’ came out in the conversation, it was always out of a sense of ticking boxes rather than doing anything that might be useful.   

During this period that I was fully immersed in stigmatising attitudes around ‘personality disorder’.  I remember my amusement when someone told me they were putting on a course for people with Borderline Personality Disorder to teach them how to kill themselves properly. The ‘joke’ here being that despite repeated attempts, by some chance people always live. The implication is that the statement “I’m going to kill myself” has no value when uttered by someone with that diagnosis despite the 1 in 10 suicide rate. 

As I’ve developed within mental health services I’ve found myself working more and more with people who are recurrently suicidal. They have the misfortune to be supported by people who have attitudes similar to those I had in the past. Those staff still harbour the idea that “If you were going to kill yourself you’d have done it by now”. It either stays in the head of the practitioner (and gets acted out in more subtle ways of dismissal) or said openly to insult or attack. Neither of these are helpful and over time I’ve learned that being able to articulate a more empathic version of that view is essential to be able to work with those who feel life isn’t worth living.   

I think we need to see suicidality (a word that I use a lot but which every spell check hates) as being on a spectrum. People are rarely 100% suicidal or 100% loving every moment life sends. People exist somewhere in between. For me, someone saying they feel suicidal is the beginning of a conversation.   

Because this conversation is happening, we can assume that someone isn’t at the 100% stage. I’ve listened to people tell me with absolute clarity, the method they will use to end their life once I have left them.  10 years ago I’d have been furious at them for ‘putting me in this position’ and ‘knowing I would have to react’. I can now be curious about why someone would say these exact words to me. This can lead us to a discussion about my anticipated reaction and the pros and cons of this for them.   

This might sound invalidating but its important to keep in mind here is that telling someone you are suicidal might be a way of keeping yourself safe.  This is to be celebrated.  All people working in mental health want those in their care to live.  We could consider being grateful when someone says they are suicidal because in some way, it’s an invitation to help.  It might not be the most effective invitation, but it is an invitation none the less.  We can explore what’s going on in more detail, rather than ignoring everything in pursuit of someone saying they can keep themselves safe until the next person comes along.   

This might sound invalidating too, but even attempting suicide might be a way of inviting help.

For me attempting suicide and not dying is something to celebrate.  Often something will have got in the way which was, to an extent, predictable.  Not always, but where these occasions occur, they are again an opportunity to be curious and something to be joyful for. Some force, conscious or unconscious has intervened to keep them safe. I suppose some examples of these are people who take “small” overdoses (if such a thing exists), people who begin their act after saying goodbye in a way that will alert people, or do something that is likely to attract attention (e.g. standing at the bridge, walking down the tracks).  In here, somewhere, is a communication about distress that gets in the way of dying.   

The trap (which I have often fallen into myself) is seeing all this as some ploy to ensnare an unwary clinician. Just because someone has taken 40 overdoses with the stated intention of dying doesn’t mean they’re only saying it to torture you. It’s a chance to wonder about what is happening in that pattern. Whatever it is, is useful in some way.  Equally, it’s ok to ask what has kept someone alive.  I’ll often preface this with “This might sound like I’m trying to catch you out or trick you, but I’m really interested”.   

This might be massive invalidation number 3, but it’s important is to hold onto the idea that what we say isn’t always what we mean.  If you disagree, consider how often you’ve told people you’re ‘alright’ when really your world has collapsed.  I’ve worked with many people who have learned that merely asking for help brings nothing.  I’ve worked with people whose life has taught them that if you don’t use volume 11 then you won’t get heard.  I’ve worked with people whose life has taught them that only actions make people respond.  

My argument is that we should always take people seriously.  This does not mean that we take them literally. I’ve seen people who have wanted to be dead in the community for the past 5 years be kept on a hospital ward because they wanted to be dead.  It made the staff feel better.  It meant the person lived in hell.  Sadly, a conviction that death is better than life is very common for people who have lived through shit.  We generally compound this if we respond to their words with dismissal or restriction.   

Curiosity about why suicidal people are still alive is an essential part of work within mental health.  It allows us to expose strengths that are difficult to articulate.  It can let us know what is going on in the minds of those we care for.  It can prevent us doing things that are deeply unhelpful.   

A colleague now passed away once described the work of the CMHT to me.  “We will get a barn full of notifications that people are suicidal every year. Within that barn is a desk. That desk has a drawer. In that drawer is an envelope and in that envelope is a piece of paper with a few names on.  The work is trying to sift through the barn to find the people who are going to kill themselves”.  I identify a lot with this analogy, but I’d add some research to it as well.  We can predict those who are at high risk of suicide, but we are useless at predicting which high risk people will go on to die.  We risk a brutal system of ‘care’ for hundreds of people to save one life.  This might be a price worth paying, but it might not be the view of those who lose their liberty.   

We work in a system that demands accurate risk assessment – a task that no one has been able to manage so far.  Until our organisational and political systems recognise this, our workers will be filled with anxiety. Anxious workers dismiss people or restrict lives.  The work isn’t easy, but we will serve people better if we can thoughtfully voice the thoughts in our heads rather than having to act them out.  We will always be more helpful if we’re honest with people that we want to trust us.

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

* There was someone I only ever met on twitter.  She was very kind to me and very supportive of a blog I wrote called Why Are People With Personality Disorder So Manipulative?  We talked of a follow up around Why Are People With Personality Disorder So Attention Seeking?  This isn’t that, but I think it touches on some of the issues that mean that accusation gets thrown around.  I hope she would have approved of this.

* This was originally part of a co-produced workshop delivered at the BIGSPD conference in 2019.  It was originally Published in Asylum Magazine Vol 26 Issue 3.

Occupational Therapy: The Greatest Career in the World? #OTweek2019

When I was sat in school at the age of 16 I didn’t really know what I wanted to do with my life.  I had a vague notion that I wanted to be of help to others but no real notion of what that might entail.  I pictured flying fighter planes, being a barrister, teaching and being a physiotherapist. A lackadaisical approach to education ruled out a few options but after much pondering, I eventually applied to university to do either physiotherapy or education.  In their wisdom the admission tutors took one look at my lack of academia and attendance and decided that higher education was not for me.  It was with much trepidation that I collected my A Level results knowing that I had no offers and while my peers were off to pack for uni, I was off home to go through clearing. 

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

Clearing is an interesting experience that I hope you never have to go through.  You find a list of all the institutions that have vacancies on different courses and get in touch to see if they will take you on.  You phone asking after one course e.g. Spanish and they offer you a different one like woodwork.  I was on the phone making or waiting for calls for the next 2 days and eventually I spoke to a guy called Chris Bailey in London.  Once we had ruled out physiotherapy (“not with those grades mate”) he asked me about Occupational Therapy.  It had the word therapy in it so I said I was interested.  He made me an offer to go and study Occupational Therapy at Brunel in London and as soon as I had accepted I went down to the library to find out what on earth Occupational Therapy was.  

Occupational Therapy is great.  You help people to do the things they want and need to do.  Sometimes you teach people things so that they can do what they want and need to do better.  Sometimes you change the environment around them so that it becomes easier to do them.  When you’re working with people, more often than not you are doing things together – frequently things that either you or they love.  You find that rather than stopping people from dying, you’re helping them to live. 

What surprised me was the breadth of occupational therapy.  I wanted to be like a physio when I turned up at uni and there was full scope for me to specialise in areas like hand therapy, people with amputations, traumatic injuries, blindness, stroke…any physical health problem that impacted on their ability to live the lives they wanted and needed to.  One of my placements was in social services and I went around giving out equipment, fitting handrails and even designing houses so that people could live in their own homes and care for themselves independently.  If this area of work had piqued my interest I could have spent my career working with people with physical health problems and making a profound difference to their lives.  

Two things happened.  Firstly I discovered that I found learning anatomy rather dull and there’s loads of it.  Secondly I went on my first mental health placement and fell in love with it.  I became fascinated by what went on in people’s minds that meant they were unable to do what they wanted and needed to.  Equally I was shocked when what they wanted and needed to do in the moment, was totally outside of anything I’d ever thought of.  After university I threw my green trousers away and never worked in physical health again.  

Occupational therapy is a recognised profession within the NHS.  This means you will find a job pretty much anywhere in the UK.  I knew I wanted to work in forensic mental health so I took the first job that wanted me and moved to Edinburgh.  I loved my first year in Scotland and took away some really important things from my first job that set me up well for the rest of my career. 

After a year my wife got the chance to study in London and off we went without any doubt that I was going to get employment.  While there I worked on hospital psychiatric wards running sports groups and making sure people were safe to go home.  I went onto the psychiatric intensive care unit (PICU) and spent a while working with severely ill people, trying to help them get to a place where they could go back to a normal ward.  

Once the PICU had seen through my incompetence I went off to work in community mental health before going on to the really exciting area of assertive outreach.  This is where people who normal services struggle to be helpful for, get a more interested and determined approach.  I used to love building relationships with people who rarely trusted anyone and whose experiences of mental health services were often around being forced to go into hospital.  I also used to love using my knowledge of their likes and habits to find people who hadn’t been seen for a while, scoping out their regular haunts, waiting around in the hope of making contact with them, anything that would give a chance encounter and an opportunity to avoid the next relapse.  There was a lot of talk about how important medication was but now I know it was all about the relationships.  

One of my ambitions was to go and work abroad.  At one point we decided to go and work for a year, then we wanted to to work for six months and we got to a point where we didn’t want to work at all.  In 2003 I packed in my job and my wife and I bought round the world tickets which ended up including 3 months in a Community Mental Health Team in Masterton, New Zealand.  While there we went to hot springs, climbed mountains and spent too long touring vineyards and sampling wine in an incredibly disproportionate ratio to the amount of wine that we bought.  Those were happy days. 

When I got back to the UK I was able to try a few different areas of mental health.  I’ve found an area that I love and I’ve managed to build a specialism in a non-traditional role.  Occupational therapy has so many opportunities to be forward thinking, creative and innovative and I’m aware of loads of OTs getting themselves into places we’ve never been before, crafting out opportunities to help people live the lives they want in multiple areas.  Housing, homeless, asylum seekers, charities, schools…all over the place OTs are finding a way in and showing they can bring value.  

Within the NHS its traditionally been hard for OTs to get into senior leadership roles but this is changing.  I’ve loved seeing OT ward managers and Heads of Therapies come along.  There’s a definite career path for those who want to make systemic change but growing scope for specialised clinicians. In our hospitals and universities OTs are researching so that we are more aware of what will be most helpful in the years to come. 

In my area of work, its still hard for OTs to get into senior positions but this helped me to start my own business.  I’d never have envisioned this 20 years ago but the core clinical skills I’ve developed over the years are valued in the private sector.  Working for myself means that I can target the areas that I prioritise but the NHS finds difficult to work on.  It’s immensely rewarding.

In OT you escape some of the worst parts of work that unfairly seem reserved for nurses.  You skip away from most of the tedious bureaucracy I see social workers drown under.  Occupational Therapy is the key to a great job and and the gateway to wherever you want to go.  

There are many different ways of being able to help people.  Occupational Therapy may not be the best one but because it’s OT week forgive me if I say it is.  You get to be a part of helping people do what they want to do most.  You get to help them by doing things that are fun, engaging and meaningful to you and those you help.  Work has got me going to the cinema, going out for dinner and, because it was a client’s life long ambition, running the London marathon.

This year I joined the board of a national body and I’m going to give a keynote speech at a national conference.  No one would have thought this possible from the socially anxious, awkward student that lazily turned up in Brunel 20 years ago.  No one would have thought that the bumbling, incompetent practitioner I was for a good part of my career would ever get to a point where he was seen as an authority on anything.  OT shaped me into someone who could avoid being judgemental and make sense out of why people did what they did.  It shaped me to confidently stand up for the rights of others.  It shaped me to push myself and others to do more, and I’ve loved the journey it has taken me on.  

The point of the above is that OT is a decent job.  You can spread out into multiple fields and change tack whenever you see fit.  It makes you highly employable, it gives you experiences you might never have otherwise, and it can help you travel the world.  It will let you help people without just talking to them, but by actively doing what’s important.  

The health service workforce is changing.  The influence of OTs is growing.  When you’re thinking about your career don’t just think about if you want to help people, think about how you want to help people.  I could very easily have missed my chance to be an OT as I knew so little about it when I was was younger.  Make better choices than I made.  Best career in the world. 

Huge thanks to Ruth Hawley, Elaine Rutherford, Dianne Lane and Hollie Berrigan for reading over this and offering their feedback (which I did not pay enough attention to)

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

Lived Experience Practitioners: The Most Valuable Resource the the NHS Isn’t Using?

Users of mental health services shaping their organisation and delivery.  It’s a bit of a mad suggestion isn’t it?  It’s like asking the passengers to fly the plane.  Like asking the prisoners to run the prison or maybe like asking the kids to govern the school.  Health services are staffed by experts and what possible value could there be in letting a patient have a say in what goes on?  We didn’t spend all that time getting our training for some uppity service user to come along and act like they know better.  That we label ‘grandiosity’.  Problem is the people who have actually tasted what we are selling know a great deal.

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

One of the best sources of information is a randomised controlled trial.  Here we have something a tad less substantial – the bitter ramblings of a middle-aged welshman.  I’m going to take you through my history of working with lived experience practitioners and some thoughts about whether they should be a part of future mental health services.  

My first contact was with Lucy (@smile4wales).  A therapeutic community was being set up and when I joined the team Lucy was already there as the service user consultant.  I remember saying hello, dunking a biscuit in my tea and watching in horror as it dropped onto my shirt.  This set the tone for much of our working relationship…

I’d never worked with service users without offering them treatment before (not knowingly anyway, although having said that many of the NHS staff I come across would be diagnosable in another setting) and it was a bit weird to be in a team and in theory, equal.  It helped that Lucy and I were the least experienced members of the team and we were able to bond over “not knowing what the hell we were doing”.  One of the ideas around having a service user consultant in the Therapeutic Community was that it helped people engage in the group.  The Service User Consultant bridged the gap between the members and the staff.  What rarely got talked about was how it worked the other way too.  While something had obviously made people ask me to work in the TC, I was still very much in the Us/Them camp, with some fairly stigmatising ideas around people diagnosed with personality disorder that I’d picked up over the years.  Working in the TC with Lucy made it impossible to maintain that split and those views.  She became a colleague who supported me.  She validated me when I was frustrated and defended me when others were critical.  On the other side, she disagreed with me when she thought I was wrong, she voted against me when the group considered issues and she challenged me when I needed it.  Because she became a real person in my life and because I knew she shared a diagnosis with the people in the group the way I saw them changed.  The way I saw others in the whole service changed.  I would not be the practitioner I am today (for better or worse) without those years of working alongside Lucy.  We shared some painful experiences and we celebrated winning awards.  It was great that we became friends, and awful to see the organisation around her casually exploit her (who doesn’t want to wait 3 months to be paid your less than minimum wage income?).

Alongside her effect on me, thee was the magic that Lucy brought into the group.  Because she ‘had lived it’, she could challenge the members in ways the staff couldn’t.  Because she had lived it, she could validate in ways the staff couldn’t.  No member or visitor ever left without emphasising the impact that Lucy had on them and the group.  She had the skill and insight to use her experience in to help both staff and members respond in ways that were more helpful.  

Fast forward a few years and I found myself doing a masters degree in ‘personality disorder’.  The set up of the course meant that it was put together and taught in partnership with people with lived experience.  Again, this meant the course touched on areas that most wouldn’t, but also that the debates and teamwork came with heavy doses of a lived experience perspective.  These are easy to ignore when then they arrive in a complaining email.  They hit home a lot harder when delivered by your lecturers and peers.  

Around the same time as the MSc I started doing KUF awareness training.  This is a 3 day course that attempts to shift peoples views of ‘personality disorder’, moving away from a fixed diagnosis and looking more at how we see ‘the past in the present’, often how experiences of neglect and abuse have led to current difficulties.  One of the novelties of the KUF training is that it is always delivered by a lived experience trainer and professional trainer.  I’ve probably done over 100 days of this training but one day I wandered into a room in Cardiff where a Brummie woman was setting up a computer.  Hollie @hoppypelican delivered the training in a way that kept people amused and engaged.  She used her experience when it highlighted important issues and resonated with the material.  We did a few more sessions and I met her again at the British and Irish Group for the Study of Personality Disorder conference a year later.  I was on my own but Hollie and her clan looked after me during what could have been a fairly isolated experience.  We kept in touch and Hollie is my go to person for delivering training, thinking through issues and getting a second opinion.  I’ve worked with her to engage people that services had written off and to argue the case for reducing restriction.  The lived experience perspective when delivered in a way that can be heard moves people far more than my accounts of facts, figures and research.  Hollie does this exceptionally well and it’s great that I get to work with someone that I’ve become very close friends with.  

Problem is, not everyone has had my experience of working with LXPs.  (Brace yourselves everyone, this is the controversial bit).  I think what is often forgotten is that Lived Experience is not enough.  There is definitely a place for user involvement, there is definitely a place for getting a wide range of views but it is a fact that if you’re so angry you can only shout at people, no one will hear you and your views will be pathologised.  One of the clinicians I respect most in the world used to argue passionately against user involvement based on their experience of being in meeting with a service user rep with an axe to grind.  Yes we need to hear peoples anger.  Yes we need to give forums for anger to be expressed, but the role of the Lived Experience Practitioner goes beyond that.  It is not just telling your story, regardless of how people voyeuristically want to hear it. 

In my experience, a good LXP will have:

Experience of a range of mental health services

Experience of care delivered voluntarily and under compulsion

Thats like the core training but it isn’t enough.  To excel as an LXP:

In the same way that a clinician applies models, the LXP uses their experience to explain, inform and solve issues.

They express their views in ways that can be heard

They validate the views of others before challenging them

They recognise the complexity of the work 

They are in tune with their feelings and can express them in ways that are helpful

They can put up with a lot of shit and articulate it so it can be addressed.  

If you have people like this working in your organisation they will engage people who are hard to reach, they will stop staff enacting myths and stigma, they will ensure that service users are thought about, they will notice when staff are burning out, they will focus on the patients best interest and challenge defensive practice, they will tell you things you hadn’t considered and they will rub away much of the Us/Them dynamic in the service.  Hollie and Lucy are the best exemplars of all the above and I know there are others like them out there.  I am a better practitioner because of my work with LXPs and I don’t think we can do anything that would reduce stigma quicker than employing more of them. 

In an NHS that seems determined to incarcerate people hundreds of miles away if there’s a chance they could be blamed if something risky happens, we need people who can hold the patients interests at heart and make organisations listen.  After years of tokenistic user involvement lets make sure that the voice of lived experience influences all the decisions in our organisations.  We’ve been deaf to it long enough. 

I could not have written the above without many and varied influences of Hollie, Lucy, Becky, Jake, Sal, Jane, Tamar, Tania, Zoe, Sue, Jen, Mel, Tori, Julia, Kath, Lou, Cameron & Andy.   Please don’t ever judge the value of your input by what the NHS is prepared to pay you.

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

 

Mad or Bad? – The Portrayal of Mental Illness in Joker

I am just back from watching Joker in the cinema and thought I’d share a few ideas I had while I was watching it.  This is one of the first films I’ve gone to see with a level of professional curiosity and twitter had whet my appetite by telling me it gave the message that people with mental illness  were dangerous.  

Before we start I’m going to warn you that after this paragraph, while I won’t go into detail of the plot, there are bound to be things that will spoil some elements of the film if you haven’t seen it.  I’ll add that I thought it was very good.  Gripping, well acted and with a powerful message.  Go see it to make up your own mind then have a look at how much you disagree with what I’ve written below.  

** Warnings for spoilers, violence and abuse

So we’re going to take the line that was in my head when I went to the cinema about people with mental illness being dangerous.  Throughout the film there’s a few references to mental illness.  The ones that spring to mind are Arthur (Jokers name before his name is Joker)  asking for more medication because he feels terrible all of the time.  There is another reference to having stopped taking medication and two episodes of Arthur slightly losing contact with reality.  In one he imagines being recognised, understood and hugged by someone he has admired for years.  In another he imagines someone he is attracted to liking and supporting him.  There’s a reference to him having been detained in hospital with no explanation as to why.  If you got the Diagnostic and Statistical Manual out you could probably pathologise these and I’m sure the film deliberately uses them to place Arthur in the ‘mentally ill’ bracket.  What was important for me was that none of these seemed to have any impact on the violent, antisocial and sadistic behaviour that happens later in the film.  

What does bring out the descent into violence is far better explained by the question “What happened to you?”.  We learn of Arthur being at least physically abused and neglected while a child.  This led to his mothers detention in a psychiatric hospital.  While there she says how he was always happy.  I got the impression that regardless of how Arthur had felt, his mother had pushed him to show happiness and joy.  Arthur has a neurological condition that means he laughs inappropriately, often when under stress.  I wasn’t sure if this had always been there or whether it was a result of brain damage from his physical abuse.  Either way, from a young age he was given the message that he was worthless and unworthy of protection – merely a thing to be tied up and beaten.  Arthur is told that others find him creepy and even without the psychological damage caused by his upbringing, we can picture how manic laughter under stress would be like painting a target on your back in school. 

Fast forward 30 years and we see Arthur working as a clown.  We see him humiliated and beaten again.  We see the people who are supposed to help him abandon him and we see a number of public humiliations as he reaches out to connect with others.  He doesn’t know how to fit in.  He is given a gun by someone who hears of his first beating.  When he finds himself being powerless and beaten again, it is shocking but not surprising when he turns to violence.  The next few scenes imply that Arthur is for once experiencing something like control.   While it’s mixed with fear it’s clear that someone who seems to have had a life being hurt by either others or himself, has found a way to feel powerful.  Over the next few scenes we find Arthur struggling to work out who he is, being betrayed by the only person he thought loved him and being set up for for his most public humiliation yet.  During this time Arthur learns what many people that I have worked with have learned – that power over others can temporarily rid the body of intolerable feelings of being vulnerable and humiliated.  It seems that this is a factor in Arthur choosing not to end his life as he planned, but to attack the person who had arranged his public disgrace.  As his violence increases Arthur finds an acceptance and approval that he never experienced during his times of trying to make people happy.  Every horrific act in the film can be understood by looking at not what was wrong with him, but what happened to him. 

One of the most powerful lines in the film is:

 

“What do you get when you cross a mentally ill loner with a society that abandons him and treats him like trash?

You get what you fucking deserve”

I’ve read criticism of this because it draws a parallel between mental illness and violence.  I’m arguing that mental illness has absolutely nothing to do with it.  None of his actions are based on any mental illness.  It would be better to swap ‘mentally ill loner’ with ‘person who has been hurt by people who should care”.  It doesn’t sound as good to the ear, but it conveys the overall message of the film better.  

Time to get the red flag out and get political.  The film makes an effort to portray society as corrupt.  Nobody helps anyone else.  There is rubbish everywhere.  Vermin roam unchallenged.  The poor are dismissed and unimportant.  Those who are interested in the poor are dismissed and unimportant.  There is only interest in those who are rich.  Obviously such a society could never exist today….or maybe it could.  This film is set in America which is the ultimate embodiment of a capitalist society, where even a self confessed sexual predator can get himself elected president seemingly on the back of being a billionaire celebrity.  The gap between rich and poor is accelerating in most western societies and in a system where people are expected to be poor, powerless and humiliated day by day, it shouldn’t surprise us that people seek power in ways we do not approve of.  As of October 1st 2019 there had been at least 21 mass shootings with at least 124 dead in the USA this year alone.  Somehow this has become an acceptable part of society which although disapproved of, seemingly cannot be addressed.

There has been a lot of disquiet about Joker.  I’ve heard that it might incite violence and I think that it could.  In the same way that Catcher in the Rye and the 120 Days of Sodom were associated with horrific acts, I don’t think it’s beyond the realms of possibility that someone who was on the brink anyway could see this film and decide to ignite a similar blaze of glory.  The film even parodies the voyeuristic news coverage that inspires the next intake of mass killers.  To watch this film and worry about the response of individuals is to totally miss the point.  We need to look outside the cinema to the world around us.  If we support a society with massive inequalities, if we condemn people to poverty based on the lottery of their birth, if we leave children to be neglected, if we tell people to seek help when there is none available and all the time we push the idea that the only thing of value is money – then we will get what we deserve.  The president of the United States has told us that people who commit mass killings are mentally ill.  This film suggests it has nothing to do with mental illness and  everything to do with the products of humiliation, poverty and injustice.

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

 

Why are those with personality disorders STILL discriminated against in services?

Missed this a year ago. Thought provoking stuff.

jordanblossoms

In my opinion, personality disorders are just as prominent and valid as any other mental illness or disorder. So why are those with personality disorders still being discriminated against in the mental health services? We are seen as stubborn, reluctant to comply with treatment and at risk of attachments to peers/staff members and apparently this is reason enough to refuse some inpatient treatment for those with personality disorders. It has become normalised for those with PD to be treated unfairly, being seen as a group of people rather than an individual. There is a significant lack of people-centred care and the intensity of unfair treatment that is being delivered towards those with PD is barbaric, and ultimately making our symptoms worse.

In a survey of 92 people, all suffering from personality disorders, 85% said they felt they had been discriminated against by mental health services. This is a ridiculous number…

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Just Stop: The new solution to self harm

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

(Trigger warning for self harm and abuse)

A Mental Health Act tribunal is where people who are detained in hospital against their wishes get the chance to appeal their detention.  They get legal representation and while staff argue why they need to remain detained, the solicitor picks apart their statements to show that the detention is unjust.  Watching this are a panel of 3 people – a psychiatrist, a judge and a lay person and at the end of the merry process they get to decide whether the detention is required.  In the UK, this is how we make sure people aren’t deprived of their liberty without good reason.  This bit was a bit dull, but it gets more interesting from now on…

I was at a mental health tribunal once where I was asked the question “If self harm is what keeps them in hospital and they really want to get out, why don’t they just stop doing it?”  I relished answering this but my heart sank a bit as well.  This was the medical expert on the panel and it is so frustrating that people in such a position of power hold the view that self harm can simply be turned off.  

I’m not a fan of diagnosis, but using a medical model, self harm is one of the symptoms of borderline personality disorder. In what other area would we suggest people just stop the symptoms of their illness?  “Why don’t they just stop hearing voices?”  Or even “Why don’t the manic people just calm down?”  Obviously any action that someone takes has an element of choice involved but in mental health we work with many things that people do that cause them harm.  I’m going to suggest that if the attitude we take into our work is that people should just stop doing what they are doing, it is going to be absolutely impossible for us to help them.  It also conveys the idea that people who could just stop are unworthy of help. 

If you feel that alcoholics should just stop drinking, agoraphobics should just go out more or anorexics should just have a McDonalds, this probably isn’t the article for you.  If you’re interested I’m going to try and explain how to make sense of why people do things that aren’t obviously in their best interests.  I’ll probably focus on self harm but you can use this process for understanding most things.  I’ll give it to you in a couple of steps but the order doesn’t really matter.

1- The things people do make sense

Nobody self harms for the sake of it.  Nobody self harms because of their diagnosis.  The only reason someone self harms is because in that moment, it’s better than not doing it. 

2 – You’re not that important

There’s a good chance that the reason someone self harms is nothing to do with you.  Yes its painful to see someone you’re supposed to care for hurting themselves.  Yes it’s frightening to think you’ll be blamed for what they do and yes, it can feel personal.  Despite your initial reaction you will be much more useful if you can start in a non-judgemental and curious manner.  If you have to make an assumption, work hard to make sure it is the most empathic one you can think of.

3 – Be curious

The best source of information about why someone does something is the person themselves.  I once read “She spent time in her bedroom and self harmed due to her diagnosis” which I thought was one of the worst things ever written in somebody’s notes and the winner of my “Utter Lack of Interest” award.   We need to ask questions:  Can you help me understand why you do that?  I want to understand how it’s useful to you.  How does it help?  – These are all things we can say to help people talk about why they do things and as a bonus, it gives them a sense that we are interested in them.

4 – It does something for them

Everyone’s reason for self harming will be different but its likely that they get something positive out of it.  It might allow them to feel something (because feeling nothing is terrifying), it might ground them and help them focus, it might validate their sense that they need to be punished it might…..well, anything really.  Whether it affects their physiology, thoughts or feelings there is likely to be some result that is worthwhile. 

5 – It does something to other people. 

It’s very easy for us to start thinking of ‘attention seeking’ at this point.  Lets throw that term out of the window and just think about what happens in the environment once someone has hurt themselves.  It might mean that people spend time with you.  It might mean that people don’t abandon you.  It might mean that people keep you away from something that terrifies you.  It might mean that people care for you in ways that they wouldn’t otherwise.  I remember one person who had always been neglected by his parents.  They only showed they cared when he was physically unwell.  Later in life the only time he could accept people being nice to him without a crushing sense that he didn’t deserve it was after he had poisoned himself.  If we ask, we can find out why it makes sense. 

6 – But they could just ask us!!!

But you won’t ask for things you don’t think you deserve.  Many people have lived lives where they were never given what they asked for.  Even if they did ask, let’s have a think about who is given the clearest message that people care about them – Is it the person who asks politely for support or is it the person in their room turning blue with a team ensuring they stay alive in that moment then watching them for the night?  In mental health services we are very good at conveying the message that the amount of care you receive is related to how dangerous you are.  It’s weird that we then get annoyed when people respond to that. 

7 – We can’t see the choice they’re making

If we don’t ask, we are in danger of thinking people self harm for the sake of it.  It’s very hard to sympathise with that.  If we can see a choice between cutting and another night of staying awake replaying the most traumatic experiences in 3D IMAX in their brain – it makes a lot more sense.  If we can see a choice between overdosing and feeling that your head is going to explode it makes a lot more sense.  If we can see a choice between head banging and listening to the voice of the person who hurt you telling you how awful you are and that you deserved it and that no one likes you and it will never get any better, ever – again, it makes perfect sense.   

We won’t know what is going on for someone until we ask them.  We need to make sure we do that.  

So all of the above are just some ideas.  Others are available so feel free to dismiss it.  I’m going to suggest that if you can do the above you’ll be much more effective at helping people.  It might even mean that you work on the problems that lead to people hurting themselves, rather than just trying to stop the self harm itself.  Don’t be the person with a deciding vote in someone’s liberty thinking that they should just pack it in.  Be curious, be empathic and honestly, if stopping was easy people would do it.  

It is the height of arrogance for me to be writing about this.  People who actually experience these difficulties do it much better.  I highly recommend this by @hoppypelican.  

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

Should Occupational Therapists be Care Co-Ordinators?

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 Berrigan @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.

Why Occupational Therapy Saved Ellie

Keir provides clinical supervision, therapy, consultation and training via www.beamconultancy.co.uk

A weird thing happened the other week.  I’d just been to an Occupational Therapy conference and because I had saturated twitter with posts about what had been going on I ended up in a conversation around how Occupational Therapy had really benefited people.  I encouraged them to write down what had been helpful them.  I thought very little of this until lo and behold this turned up in my inbox.  Most OT’s will find this a fairly interesting read.

Just to introduce Ellie, she is someone I met at the British and Irish Group for the Study of Personality Disorder annul conference in Cardiff last year.  She ended up being highly commended for her poster “The Impact of Activity and Occupation on Borderline Personality Disorder”.  She’s a big advocate for OT and at some point I hope she becomes one.  Enjoy her tale….

3 years ago I was a very lost young woman. I was sectioned in an acute psychiatric ward for the 5th time after years of BPD and an eating disorder slowly dragging my life away from me. My daily routine consisted of spending the nights in A&E getting stitched up after self harm, coming back home in the early hours, sleeping in the day, self harming again in the evening, back to A&E and so the cycle continued…sometimes with the occasional break of an overdose or suicide attempt and sometimes with the addition of multiple trips to A&E in a day. I was admitted to A&E over 200 times in less than a year.

But something about this admission was different to the last. As someone who is pretty dam intelligent (if I do say so myself), acute wards are pretty dangerous for me as I get very bored and spend my hours conjuring up inventive ways to hurt myself. So generally, acute admissions had brought no benefit apart from new self-harm methods. However, the big difference with this admission is that the ward that I was on had double doors at one end that led straight through to the OT department. And this is where the first glimpses of healing began. Here there were things to do, things to keep my mind and my hands occupied, I could make my own meals (which helped with my eating disorder), the staff had more time to chat to me and help me process my situation than the staff on the ward that were rushed off their feed with medications and observations. I was also more willing to talk, its easier to chat to someone whilst you’re doing another task – rather than artificially sitting opposite someone in a chair in a box room with no windows. Entries in the notes from around that time show that I was considered “complex”, “a disruptive influence on the ward” and someone who would be in the system a long time. However when I speak to the staff in that OT department from that time they don’t recall that side of me. I was like a totally different person once I went through those double doors. Here I was celebrated for who I am, staff encouraged me to teach other people to hoop (my favourite hobby), to write poems and explore art, to have a go at yoga and spend time outside. This also coincided with me coming off all my medication which after years on antipsychotics meant that I suddenly had a clearer head and could actually engage with these things rather than just going through the motions. I was starting to FEEL again.

One day, the lead OT asked me if I would like to come and sit on the Therapeutic Activities Development Group as a service user representative. He felt that I had a lot to contribute to ideas for activities in the inpatient areas of the mental health trust. The first meeting was a fortnight after I was discharged from hospital. I hadn’t got out of bed or washed in over a week, I vividly remember turning up still with pyjama bottoms on and steristrips on my face. I didn’t want to go, I was anxious about being the only service user in the room and having nothing to contribute. But to my surprise I had a really positive reception and professionals were turning round to me and asking my opinion and valuing my input. I walked out of that meeting and went home and had a shower and changed my clothes and felt a glimmer of hope that maybe there was something I could do in the world.

I was admitted to a specialist unit in a different city for a year after that, which changed my life, but all through it I worked remotely on tasks for the group and returned to Sheffield for monthly meetings if I was able. Part way through the year I was asked if I would like to start volunteering in the OT department on the ward – gathering service-user feedback about activity provision and just generally helping out. It meant that I had something to work towards and keep well for on my return to Sheffield – a city where I had been living a dysfunctional life for so long previously. 

Fast forward a further 2 years and I can’t believe how far I’ve come since attending a once-monthly meeting in my pyjamas! I spent a year volunteering in OT on the ward, and during that time I learnt so much, got opportunities to present what I was doing to the rest of the trust and this lead to further people being interested in getting me involved. I started to deliver trainings on mental health to police officers, A&E staff, telling my story to people on induction to our trust, running workshops and attending conferences. My life is full of hobbies and activity (I roller skate in skate parks and take part in other circus activities) From one person believing in me and the power of having an occupation on someone’s recovery – even though they are very unwell – I am now employed by the trust, using my lived experience in my role as patient ambassador in medical education and research. I still volunteer and I still speak about my experiences and advocate for the impact of occupation and activity on recovery. I even wrote a poster presentation on the topic which came highly commended at BIGSPD 2018 which was a huge boost to my confidence and also helped me get where I am today.

My 2 years since returning to Sheffield have not been great in my personal life – I have battled with homelessness, fighting for care, a lot of issues with services (some of which have been quite frankly traumatic) not resolving certain unmet needs that are still impacting on my life significantly and it has been incredibly hard to keep going. But one of the reasons I have been able to soldier on is that now I have a purpose and a value in my existence. I’m appreciated for what I bring to the table in mental health in the city and for speaking out about my experiences. I have a future ahead of me and a whole new potential career path I would have never envisaged. And if that doesn’t end up working out then I’d actually love to become an OT. I’ve learnt to put the bad stuff that has happened to me to good use and for the first time I am excited about the future. And I honestly don’t think it would have been possible if it wasn’t for that OT department believing in me and encouraging me when I was in my darkest times. Occupation and activity is my medicine and it is what keeps me alive every day.

You can hear more from Ellie here on this podcast 

Ellie talks lots of sense on twitter @elliewildbore

Keir provides clinical supervision, therapy, consultation and training via www.beamconultancy.co.uk

Rotten Apples, on Poisoned Branches in Toxic Orchards

“It is a poor thing to enslave another.  I would suggest you find yourself a different line of business”

The Sandman, Neil Gaiman

Scrolling through my social media feeds I’m coming across a lot of vitriol for the “care” workers of the hospital exposed on Panorama this week.  There is anger, fury, sadness and disbelief.  This is often followed by a graphic depiction of what medieval tortures the person posting the comment would like to inflict.  This is an understandable response to witnessing people in power seemingly taking pleasure in inflicting pain and humiliation on those who are helpless.  It was sickening to watch, and they should face justice.  

It’s essential that our quest for justice does not stop there.   The destination turned out to be awful, but perhaps this is a journey that should never have been embarked upon?  After the Winterbourne scandal, Transforming Care emphasised the need for people to be supported in their communities.  The Rethink #InSightInMind campaign highlights how those with mental health problems are often put in locked rehab wards many miles from home.  Most are probably bored of me listing the enthusiasm of the NHS to send people diagnosed with personality disorder to long term locked rehab, which most could  agree is an utter inversion of what NICE would recommend. Despite all these voices arguing against the use of long term compulsory detention far away it continues to happen.  We need to ask ourselves why.

A common feature of those with complex needs (whether they be branded as learning difficulties, schizophrenia or personality disorder) is that they can worry those who feel responsible for them.  There is a two pronged fear around what might be done to you (E.g. assaults, allegations) and what you might be blamed for.  My MSc research and studies highlighted the impact of anxiety in organisations and how this can lead to a perversion of care.  I’ll use the example of someone diagnosed with personality disorder (not a real person but an amalgam of many I’ve met over my 20 years in mental health working in and researching this area).

“a pressure developed affecting all levels of staff, managerial through to clinical, to ‘manage risk’…but this soon slipped into ‘managing risk to themselves…this is understandable, since the consequences of a faulty risk assessment were and continue to be quite horrendous”  Independent Review of the Mental Health Act

There was a girl (it’s almost always a girl) who didn’t want to live.  She didn’t necessarily want to die, but she felt the world was an awful place.  After she had overdosed she felt unwell and went to A&E.  She ended up getting admitted to an acute ward.  On the ward she started to swallow things and to tie things around her neck.  Here, she never sought help and it was up to the staff on the ward to save her.  They watched her more and more.  They took everything dangerous away from her.  The things she did became even more dangerous.  She stopped being allowed any leave.  They took everything away from her. 

We sat in a meeting and talked.  Some people talked about how she was only doing this for attention.  Some people recognised that since others had taken over “keeping her safe” she had become significantly more dangerous to herself.  We could hear her saying loud and clear that she didn’t want to die, she just couldn’t cope with her living situation and the overdoses helped.  We thought really carefully and came up with some different accommodation options.  We thought about how we could provide therapy and support for her now and in the community.  We all agreed that the NICE guidelines for her diagnosis told us that collaborative working, minimal use of the mental health act and treatment in the community were the ideal response.  Then someone said “What if she kills herself?”.  The rest of the meeting was about how the organisation could protect itself from blame.  The solution that best met this objective was to send her to a private hospital for at least a year.  Some of the people in the room believed that private hospitals were specialist places with experts and exclusive therapies.  Some of the people in the room knew they were locked rehab wards with less therapy than was currently available in the community.  She would be locked there, for years, with people with difficulties vastly different to her own.

Clinicians had “failed to rescue the patient, were uneasy at their failure, and were inclined to blame others, especially relatives, but sometimes colleagues. They were clearly worried by the patient’s distress, and wanted to rid themselves of their responsibility, with professions of goodwill. Concern for the patient was emphasised; impatience or hatred never.” Tom Main 1957

She had to wait a long time to go to placement.  During this time she was never told that placement was the opposite of what was recommended to help her.  She kept being told it was the answer, that this would fix things.  Again some staff believed it.  Others not so much.  Different quotes were obtained from a variety of hospitals that all claimed they were special and could all provide intensive therapy.  It turned out one didn’t even have a psychologist.  3 different quotes were obtained.  One could say that the NHS made sure it got good value.  One could also say that the opportunity to provide substandard care was auctioned off to the lowest bidder. 

She went anyway.  Her years stay slipped into two, then three.  People visited but it felt more like the hospital told them what was needed rather than them holding the hospital to account.  Eventually a different hospital was suggested for her.  People talked again about how much more dangerous she had become since we had started keeping her safe.  People pointed out how her care was the opposite of what NICE recommended.  The answer was “What if she kills herself?” and she moved to another hospital. This one was further.  Despite the label above the hospital gate the staff there knew there was nothing special about them.  They knew they were working with those the NHS had given up on.  Why else would they be sent 100 miles away to a ward where none of the staff had any specialist training? After allegations were made against the staff she was eventually brought home to a greek chorus of “She will kill herself”.  She didn’t, but she had seen multiple people die in hospital with her.  Every inquest said they should have been watched closer.  None of them questioned why they were there in the first place. 

There are 3,500 locked rehab beds in the uk with 2/3 of these in the private sector.  It’s estimated 1,200 of people in them have a diagnosis of personality disorder.  Locked rehab placements in the private sector last twice as long as placements in the NHS.  The evidence for therapy delivered under coercion (if such therapy is available) is abysmal.  There are a range of therapies that have been shown to help, but the evidence for all of them is in the community.  Despite everything that good practice guidance recommends, the above treatment plan is still used all too frequently.  The NHS is terrified of blame, and for a mere £200,000 a year that blame can be exported to the private sector.

Due to the recent coverage it’s very easy to focus on those diagnosed with learning difficulties, but the reality is that a trip to the modern asylum is a danger for any person who elicits anxiety in those who feel responsible for them.

“The need to believe in the hoped for magical solution prompts denial of the inadequacy of the solution achieved, notably again in the poor quality of the institutions” Isabella Menzies Lyth

Last week I was at a study day where 30 people from across the country looked at ways of avoiding the above happening.  There are some trusts that do not use OOA placements and we studied what they did that made it possible. While the NHS is frightened the temptation is that we do not focus on the risk to our patients but instead the risk to ourselves.  When we are frightened it’s understandable that we do what we can to get the things that frighten us out of sight and out of mind.  When we stop thinking about people, unthinkable things happen to them.  Many people will watch Panorama and feel that it should never happen again.  It is happening today.

Keir works at Beam Consultancy helping organisations to avoid long term out of area hospitalisation via the provision of training, consultancy and intensive support.  contact@beamconsultancy.co.uk