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
It is February 6th and this auspicious day brings together 2 great celebrations.Firstly it is #TimeToTalk day and secondly it is Harry Potter Book Night.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 theywon’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.
For a while now I’ve been writing about the impact of overly defensive and restrictive practices on the people that I work with (like here and here).The usual story that I tell is of people being at risk in the community but that risk increasing massively when in hospital.Unable to see that the ‘help’ seems to putting the service user in greater danger, the answer is seen to be more restriction, greater security and eventually a few years locked rehab unit.
While many people can recognise the pattern described above, it’s not something that gets promoted a great deal in services where the message of ‘doing whatever it takes’ to keep people safe is often repeated.It was interesting then to read the Independent Review of the Mental Health Act and to seeSir Simon Wessely expanding on these very themes right at the beginning of the document.
My MSc dissertation (which I will publish at some point) concluded that it was fear of what clinicians might be blamed for that led to some of the most restrictive practices in the organisation.The MHA review begins by talking about Fear –
“Professionals are fearful that unless they adopt a cautious, risk averse approach to their patients, they will find themselves being publicly shamed for those occasions when those same people cause serious harm to themselves or others”
While it is rarely said out loud, this means that people who are in services to receive care and support, can instead be viewed as people who are dangerous to those who should care for them.The danger is not so much about what service users might do to a clinician (although this fear is not uncommon) but what clinicians might be blamed for.The service user moves from being a focus of support, to a threat that can damage or destroy a clinician.It is unsurprising then that the way service users experience ‘care’ is often not perceived as kindness.
One way that clinicians can rid themselves of any blame for the actions of those in their care is to pass the responsibility for their care onto others.I have observed and been part of too many unenthusiastic interactions where someone has been referred for an assessment just so that someone else can make a decision (Sometimes with the full knowledge that it’s a waste of time, but at least it’s the other team that has said No rather than us).It is dispiriting for all concerned and can too often lead to an inappropriate level of restriction because anything less restrictive ‘isn’t worth losing my badge over’.Bethany’s dad (@jeremyH09406697) is an avid campaigner against restrictive practice and his experiences seem to echo Wessley’s sentiments that –
”some people with a learning disability, autism or schizophrenia are being “warehoused” as we now call it in locked rehab wards, or unsuitable long stay wards which exacerbate and not ease their problems”
I wish that the chair of the review saying that what we do to people in the name of safety is making things worse had excited the media and society a bit more.Sadly at the time it was released we were too focused on whether to throw rocks or olive branches towards Europe.
“So whilst fear of the mentally ill has decreased in the public, parliament and media, a different kind of fear has increased – the fear of making a faulty risk assessment that influences many professionals.”
The consequence of this is that for many professionals, risk management has “slipped into ‘managing risk to themselves”.This makes sense as the consequences for a wrong decision can be catastrophic, but to look after ourselves before the person we are being paid to care for is a perversion of our duty of care.
Wessely suggests that this practice can explain some of the rise in detentions under the mental health act, the sterile nature of many inpatient units and some of the more baffling “just in case” interventions that can take place (No shoe laces for someone with no history of ligaturing?). I agree with him.He goes on to suggest that clinicians and services need help from the government and the law to ensure that ‘positive risk’ (which can often mean anything other that the most restrictive practice) is supported. I hope this can happen, but at the moment, its only @normanlamb I ever see talking about this issue.
Much of my work over the past few years has been around helping organisations question and avoid some of the more restrictive options available when caring for people who cope in ways that can be dangerous to them.There’s a range of things that can be done to relieve some of the anxiety in the system and to ensure that the needs of the service user are kept at the forefront of the minds of the people involved in their care.I may expand on these in future posts but briefly…
Too often decisions about how to manage someones risk are made without them.When they are made an equal partner in decision making, most people can describe their wishes and aims in ways that can reassure people.We don’t need to agree with people’s decisions, but if we give people all the information at our disposal then we should respect what they want and think about how to support them with their goals.Where the service user isn’t able to articulate a view, it’s useful to have the input of an Expert by Experience who can help staff teams make sense of why people do what they do.
We are often quite poor at giving people information.I’ve never had anyone respond to the rationale “it’s for your own good”, but I have had people respond to genuine dilemmas where we weigh up pro’s and cons together.
We can often have a fantasy about what ‘the next level up’ will be like. In my experience the extra level of restriction either exacerbates the current difficulties or needs to use increasingly potent cocktails of medication to achieve the desired response. The intensive therapy supposedly on offer is rarely available and when it is, there’s little benefit from being forced to do therapy.
Clinicians should never feel that they’re alone in making decisions. The backing of senior managers and most importantly the service user themselves can take away a lot of anxiety.
We need to learn from the past. If someone presents for the 20th time we need to use the knowledge that we have rather than act as if it’s the first time it has happened. Thinking about crisis when not in crisis is essential and being able to communicate the plans we have made so that people aren’t ‘thinking on the spot’ is really useful too.
A good risk formulation can again take away a lot of anxiety. This can help us move from “What’s the worst thing that can happen?” To “What is likely to happen given our past experience?”. The service users I work with and I have used this to help teams see that for some, admission is likely to result in more lethal methods of coping. Equally it has helped others recognise that after self harm is a time when the urge to harm has been reset, rather than the time to restrict. There is little substitute for a coproduced formulation in helping everyone understand the risks and thus agree how to move forward.
There was a post on twitter recently that likened positive risk taking to clinicians neglectfully gambling with peoples lives.I hope that people can see that this isn’t what I’m advocating.Trying to eliminate risk can paradoxically put people in danger and we need to keep an awareness of this as we balance the need to support people with the need to keep them safe when they have lost the ability to do it for themselves.If we can recognise when the focus of our work is protecting ourselves then we can step back and refocus on the person we are supposed to be helping.If we can do this, the chances of our input being perceived as kindness is substantially increased.
If you or your organisation would like to talk about how we can help with any of the above please get in touch via the website.Keir provides therapy, training and consultancy viawww.beamconsultancy.co.uk
One of my favourite ways of helping people is the day therapeutic community. I got a chance to work in one around 2010, a time when I held (pretty tightly) some of the more stigmatising views people express when talking about ‘personality disorder’. I joined for a year and left most unwillingly after 2 and a half. I spent 5 hours on a Monday in a group being genuine with people. I worked with experts by experience and saw those who I’d thought of as being manipulative and attention seeking being brutally honest and utterly self sacrificing. Aside from the change the group made in me, I saw people who had been on the verge of death from self injury move into lives where they could care for themselves and allow others to love them. It was a powerful transformational learning experience for me and it is with much pain and despondency that I see this way of working move into the shadows, eclipsed by DBT and other 3 letter therapies. In a world where services for those who hurt themselves tend to be easily forgotten or overlooked, 2 of the day therapeutic communities I was part of either won or were the only mental health team shortlisted for the NHS Wales awards. Both these services have now closed and it feels palpably ironic that services can be both celebrated and praised for their excellence while also marginalised and unsupported. Perhaps one of the reasons people find therapeutic communities hard to support is that they are difficult to understand. The lack of direction can be uncomfortable. The idea of patients having full control of their group can be terrifying – especially to organisations that try to eliminate risk. In many ways the only way to understand how a TC works is to see it. In the world of social media I’ve always hoped for someone to write an account of their time in a TC to give people an indication of what it feels like. When I voiced this on twitter one day the marvellously articulate @shadesofsky offered to write that very piece. A few months later here it is, a powerful account of what a TC can feel like. I hope people read this and think of TCs as an option. I hope commissioners and clinicians read this and remember that recovery isn’t only spelled DBT. I hope people can remember that the NICE guidelines say we need to give people a choice. Finally, I hope you enjoy reading this as much as I did.
It’s 4pm on a rainy Tuesday afternoon. I’m a member of a Democratic Therapeutic Community for people diagnosed with Personality Disorders. I’m sitting, curled tight on a sofa that’s nearly collapsed in on itself, trying not to do the same. My knees held fast against my chest, my hands are tearing at my hair.
I want out.I thought that this was one place I was understood, but I was wrong, wrong, wrong. I am always wrong. I myself, am wrong. I want out.
I am crying, hard. I’ve left the community meeting in despair again. Run away, because someone said something that I couldn’t handle. I don’t like it here. My anger is too intense. I can’t stand conflict. I am too full of anger. The whole community hates me. I am too messed up to be put right. I need to leave.
It’s 4pm on a rainy Tuesday afternoon, 15 months and 500 miles away from that Tuesday afternoon. I am remembering what I used to be like, when I was starting out treatment. Even after spending 12 months in the preparatory group, I was still a crumbling wreck. Brittle, the psychiatrist said. I would snap at the slightest thing. Cry. Self-harm. Stop eating. Nothing – not courses of CBT, years of counselling, exercise, book prescriptions – nor medication had worked to change my mental health. I was volatile and lonely, with a self-esteem on the floor. Not that you’d know that from the outside. When I started in the TC, I worked multiple jobs, more than full-time hours, teaching; researching. Striving. Pretending to the world that all was OK. Trying to run faster than the emotional maelstrom baying at me, without success.For the past few years, life outside work had been getting messier. And I was terrified that I wouldn’t be accepted in the TC. I had never belonged anywhere.
The TC, (group therapy for 15 hours a week) had offered yet another treatment option. Therapists from different health backgrounds, work with service users, as equal members of the community. Each member joins via a case conference which identifies the things that they would like to change in therapy, for a period of 18 months. I was voted in unanimously. I wanted to work on trusting others; on kindling a sense of self-worth, on handling conflict without falling apart. And on not needing to work so hard. But a few months in, I was crying more, breaking down more often. I had returned to the self-harm, that I’d been obliged to stop for a period of four weeks, as a condition of entry to the community. I felt intensely disliked. I was utterly unlovable: rotten to the core, my inner voice whispered. I’d given up working many of the hours I was doing. But I felt more depleted than ever. And I still felt rubbish.
The community held me to account for my walk-out. I had to explain what had led me to leave; how I felt; what could stop that happening again. I had to face the reality of how getting overwhelmingly distressed and leaving the group had left others feeling. It was not comfortable. It left me feeling like I wanted to leave for good. But I didn’t. I kept going back because people would notice if you weren’t there. I went to group after group after group, day after day.
TCs are set up to work like a microcosm of life outside. So, the idea is that with a small number of therapists and service users, each person will end up re-enacting the patterns of interaction that they use outside. And, within the boundaries of the TC, those patterns are examined and reflected upon, and changed.There are endless boundaries in a TC. Twelve months into treatment, I was still discovering them. But I like structure and routine. After breaking the rule around no self-harm, I was put on a contract “to not cut”: and haven’t broken it since. The strict timings of opening and closing community meetings, the definite rules around contact with community members, the accountability for my actions, were keeping me contained. I struggled against flexibility; around times when the boundaries were deliberately broken – even by therapists – times that left me feeling like a small, lost child again.
Held by the boundaries, a few months into treatment, I was beginning to open up. Each week, the TC divided in half for “small group” – a time to test thoughts with a smaller number of people, look at events that had happened that week in more detail, or to share something new with the group. The feedback here was also painful. I was prickly, clipped, even condescending at times. I worked hard with the group to explore reasons for that. I was encouraged to take responsibility for the way I was acting – but not to blame myself for it, either. There was a reason – perhaps a wound that I was protecting – that was beyond my conscious experience – and that was driving my behaviour. The more I understood my knee-jerk reactions, the better position I was in not to resort to them.
TCs don’t just consider interactions in the present. They consider their history, too. One way of doing that, in the TC I was a part of was psychodrama. Acting out the past. One time, I was nine years old, on the playground again. S — was standing in front of me, with J— and B— beside her. J—‘s family don’t want to buy a copy of the school class photo’. That was my fault, because it’s not a class photo’ because I’m in it, and I was not supposed to be in that class. I was in the wrong class. In the days before PhotoShop, S— and J— wished that they could scratch me out of it. So do I. I wished I could erase myself completely from everybody’s lives. Everyone hated me. Even my teacher standing less than a foot away didn’t respond as the slap S–struck across my face echoed over the playground. The whole world hated me. In the psychodrama, I fight tears, fight for control, as this scene is laid before me. I must stay in control. I must not cry. I am not nine years old. S— is not about to hit me for calling her a name, in despair because nothing else has made her stop. I’m OK. Really. I’m OK. The echoes of my present thought patterns are there. Surely, I’ve processed stuff that happened over 20 years ago. It wasn’t not your fault, S —. You were nine. The adults let you down.So the therapist says.The TC offer a different perspective on the past.I have to work hard to believe that what happened when I was a child was not my fault.
We spend time each week going through the Structured Clinical Interview for Diagnosis II. Each and every trait of personality disorder. And conduct disorder. We work as a group, reflecting whether we think we have the trait, and get feedback from the rest of the TC. As expected, I meet the criteria for EUPD. But I also meet the traits for Avoidant Personality Disorder, too. I intensely fear rejection. I am scared to let people in, unless I can be certain that I will be liked. So I distance myself instead, most of the time. It’s safer that way. I have some fairly rigid thinking, too. I like boundaries: I find flexible interpretations of the rules harder to bear.Knowing the traits is useful.
In Objectives (PsychEducation by another name) we go through model after model to try to explain our distress. I consciously try to apply my experiences to each one, to make some kind of sense of the mess. Radical acceptance, concepts from DBT, help me most. Seeing each emotion as a guest at your house. Trying not to slam the door on it, but to invite it in, instead, to get to know it better.Mentalising, too. Thinking of all the other reasons why that person didn’t reply to my message, that aren’t about them not really wanting to be my friend. The world brightens after a realization like that.
The TC has a creative hour each week, too. I relished these. This was something I could do. I was allowed to write about how I felt, and that I could do. I wrote letters. Letters to my ex-partner in prison. Letters to my four year-old self. To myself. But writing is easy for me. I am challenged to use a different medium. I recoil. I’m less certain of myself in the break times as well, at first. I prefer to go where others aren’t. Hide on my ‘phone. Others might not want me to be hanging out with them, anyway.
Around ten months into treatment, things start to change, measurably. I have drawn a rose in the creative session. And the rose is in bud, and delicate, but it is growing, and I am beginning to believe that it will bloom. I have started dating. I think I can trust someone else that much. I am more accepting of the bad bits of me. Some things still get me. Using ableist language is one very quick way to get me riled.But maybe that’s useful, too, if I can use that anger in a helpful way.
A few months before I leave, I start applying for jobs again. And I get one, to dovetail with my leaving date from the community. Apart from, as much as I wanted to leave, three months into treatment, I don’t want to leave now. I have made firm, secure attachments to members. They have seen me scream and cry, and they still come back to me. They know the authentic me, and they still seem to want me around. But they encourage positivity in me, too. They are excited that I have a new job, in a new country. A new place to live. They wish me well. And I leave. I am now not allowed to contact them until they are discharged. I miss them, even a couple of months later. And things have been stressful with the job and the move, and I crave the structure of the TC to hold me safely again. I am frightened that I’m going to be no good at being an adult. But I am acknowledging that, rather than hiding at work. TC was tough. Leaving it was heart-rending. I am scared of life beyond its boundaries. But TC has given me the determination to make the most of what I have; to look forward to the future. I believe that the best is yet to come. And I can’t wait to live it.
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
This is a very lazy blog, but on a day when there are calls for women’s prisons to close, I thought I’d dig out an old essay I did for my MSc. This was my least academically successful essay and earned me the feedback that I had portrayed women as victims. Should you ever be tempted to write a similar essay, you’ll find it is very difficult to do otherwise given the amount that the system victimises women.
We had to describe a service that would better respond to the needs of women and my attempt is below. It will help if you know that the Corston Report was “a review of vulnerable women in the criminal justice system”. Enjoy
Welsh – “Fenyw” (noun)
“Woman” (verb )English
A Service for Women in or at Risk of Entering the Criminal Justice System
My experience is in working in the community, most often with people who have not be arrested and convicted of crimes. There is a tendency to think of the forensic population as ‘other’ however many of the behaviours exhibited by my clients, if done outside the context of a mental health services, would certainly be of great concern to the general public and thus the agents of criminal justice. I will outline a service that would help the clients that I work with as well as those who have been arrested for crimes, those who have the capacity to hurt themselves and others, who struggle to maintain relationships with families and partners, and who experience strong feelings of rage, fear, helplessness and despair from those who work with them. In one sense, my service could be thought of as an organisational intervention that will target aspects that professionals find difficult to think about. In another way, my service would be for the clients as it will focus on and hold in mind the aspects of people that services are often keen to push away.
Before designing the service it’s worth looking at why change is required. The Corston report itself puts forward a number of reasons why the status quo is unfair. It can be argued that the system discriminates against women. (All of the following figures and statistics are taken from Corston 2008). Women are twice as likely as men to be jailed for a first offence. This is despite women committing less violent crime. In court women are more likely to be remanded to custody than men yet over half of the women remanded do not receive custodial sentences. If over half of the decisions to incarcerate are deemed unnecessary when the accused is tried, it seems that something untoward is occurring when women first enter the criminal justice system.
Women commit different crimes to men being involved in more acquisitive crime and substantially less involved in serious violence. Not only are their crimes different, the reasons behind their offending are different, with relationships, accommodation issues and substance misuse being greater factors than for men.
Ethically, the punishment aspect of the judicial system seems harsh for a population already suffering. They are frequently victims of crime, ill or already punishing themselves. 80% of women in prison have diagnosable mental health problems with twice as many women as men seeking help in the year prior to their sentence. Despite making up only 5.5% of the prison population, women account for 51% of the incidents of self harm. In prison, women are more likely than men to kill themselves. Two thirds of women coming into prison require detoxing from drug addiction. It might be unsurprising that women in prison hurt themselves given their backgrounds. Half of them have been victims of violence while one in three (compared to one in ten men) have experienced sexual abuse.
It seems sadistic to be harsh to this population yet the experience of prison is felt more harshly by women than by men. There are the invasive searches which cannot be well received by the third that have been sexually abused. There is the fact that a third of the women are lone parents who suffer knowing their children are not with a parent. 12% of women prisoner’s children will be looked after by strangers in the care system. When in prison, 30% of women lose their accommodation often including their possessions. To compound the punishment, women are separated from their families. Living in Wales, if my wife was to be unnecessarily remanded she would serve her time in a different country.
Discriminating and sadistic…it makes sense that Corston would want change. Others might take issue with Corston’s report and seek to emphasise the similarities between men and women. Adshead (2004), looking at forensic mental health patients, highlights the similarities in the in the backgrounds of males and females in secure settings with high levels of childhood abuse and neglect coupled with high levels of lifetime and childhood victimisation in both sexes. While this is a risk factor for violence in men Adshead points out that the gender stereotyping of females means that the masculine trait of violence is likely to be interpreted as madness in women but understandable in men. Women then go to hospital while men go to prison for the same actions. What we could take from Adshead is that a focus on the outcomes of abuse and neglect might be less important than an understanding of how the past affects us. Rather than treatments for men and for women, an intervention for victims/perpetrators of violence might serve better.
To adequately design a service that meets the needs of women, we need to understand the population we serve. I’ve already outlined the deprivation in backgrounds of many female offenders. When we add that “71% of female offenders have no qualifications whatsoever” (Civitas 2010) we can picture a background of poverty, stress and deprivation. “60% of women in prison are single. 34% of women in prison are lone parents. Around two-thirds of women were mothers living with their children before they came into prison” (Corston 2008). Nearly two thirds of boys who have a parent in prison will go on to commit some kind of crime themselves (Prison Reform Trust 2012).
We can picture some of the difficulties at home (if the children can stay at home). There is not only the statistical impact on offending but from a psychological perspective there are many examples of people who have a history of early neglect and/or abuse who go on to unconsciously recreate their pasts with the next generation (Motz 2008, De Zulueta 2008)
Some of the needs of this population are obvious: drug abuse, being unemployable due to literacy and numeracy deficits, lack of housing, difficulty parenting, self harm and mental health problems. Fenyw will address these needs and more. In describing Fenyw I am not going to confine my thoughts to a specific service and building, instead I’ll attempt to describe elements on a pathway that I feel are essential while leaving the practicalities of how this might be achieved to better minds than mine.
Keeping Women Out of Institutions
There are many arguments above as to why prison is not a good option for women. In my work I see people routinely hurting themselves in the community and uncontrollably maiming themselves in institutions. Studies show how restrictive environments can increase the frequency and severity of self harm (Harrison, 1998) while Pearson suggests that “suicide attempts and assaults are increased when women are detained in secure settings where the means of self harming and the access to substances that might dampen feelings” are reduced (Pearson 2010). Part of Fenyw would be to provide an advisory service to courts to divert women from custody wherever possible. Fenyw would hold in mind the idea that “Custodial sentences for women must be reserved for serious and violent offenders who pose a threat to the public.” (Corston, 2008).
To be able to thoughtfully divert women from prison Fenyw would need to hold a balanced view untainted by discrimination and mindful of what does and doesn’t work. Fenyw would remember “it is very unusual for women to act violently at all” (Adshead 2004) and that female violence is often directed at themselves (Motz 2008). We would embrace Welldon’s (1998) notions of the child being an extension of the mother’s body when recognising that 40-45% of female homicide offenders kill their children (Yakeley, 2010). We would also hold in mind that a third of female homicide offender’s victims are their partners while 80% are close family members (Yakeley, 2010). Fenyw would hold the idea that the vast majority of female offenders pose little to no danger to the public at large, therefore they do not need to be imprisoned. I think of my experience of Women’s wards and while I haven’t worked on one I have always been aware of their reputation as being the most violent and chaotic wards in the institution. Staff seemed to be regularly assaulted, residents were always fighting. Given the statistics on women assaulting non family members it seems that there must be something toxic on female units that allows women’s usual patterns of violence to be subverted to such an extent. Fenyw would avoid these environments as much as possible.
Diversion from prison would be done on the basis of a psychological formulation consistent with the Personality disorder pathway. Some would have to go to prison. Some would self harm to such an extent that they would need protection from themselves. Fenyw would stay involved to ensure periods of restriction were as short as possible. Much as I resent the notion of hierarchy in the NHS and other institutions (not least coming from the lowly status of OT) Fenyw would need consultant psychiatrists to be part of the team to take on an RMO role from staff who see the only solution to risk to be greater restrictions and heavier nurses.
Within the NHS and criminal justice system, self harm is often a fast route to responsibility being taken from you and restrictions being placed. Fenyw would make the understanding of self harm a priority for the service. This is an important distinction as while the service will help people who wish to stop self harming, the focus will be on making sense of the purpose of the act. You wouldn’t need to work in my organisation for long meet someone who regularly cuts themselves at home, but in a ward environment gouges their arms wit broken CDs or torn Coke cans after their blades have been taken away to “keep them safe”. Based on a psychological formulation of their behaviour, Fenyw would understand self harm as a communication (Motz 2009), a way of solving a problem (Linehan 1993), a re-enactment of past abuse or as something else that made sense to the client. Fenyw would then thoughtfully only remove responsibility from someone in the most extreme circumstances and then in the least restrictive way possible for as short a period as possible.
A Different Community Service
I envision women being diverted from court to the women’s centres Corston described. I would take her recommendations further and rather than the centres be places to refer and signpost, I would have them co-run with the NHS to provide ongoing intervention and support. Residential accommodation would be on site as well as units to cater for families and units to detox those who required it. The women might attend local centres to be able to work on their difficulties while living in their usual environment. Sometimes it might be more beneficial for the women to have a new start away from old toxic relationships where the process of starting new relationships can be examined and thought about. People might be compelled to attend these centres when they are sentenced but for me this is where the compulsion should end. My probation colleagues speak of the lack of reward inherent in providing interventions people attend under duress.
My background is in working in Day Therapeutic Communities where the only expectation of people is that they come – everything else can be talked about. Within the women’s centres I would work to the principles of the therapeutic community – attachment, containment, communication involvement and agency. (Haigh, 1999) In essence the centres would be a place where women felt they belonged and were accepted, a place where unspeakable thoughts can be put into words and acted on, a place that the women own and sustain. It’s not easy to engender these concepts but for those who cannot make use of the formal therapy on offer, this very different and more subtle intervention has more of a chance of success. The enabling environment of the TC can build the sense of belonging and personal efficacy the clients are unlikely to have developed in their backgrounds of deprivation (Pearce& Pickard 2012). Key to maintaining the ethos of the centres will be the roles of Experts by Experience in the centres. Thus much of the modelling, sharing, advice and direction will be imparted by people without a theoretic knowledge of offending and mental health, but with a lived experience of surviving trauma, illness and the criminal justice system. Those with lived experience have been shown to provide better outcomes than traditional services when “engaging people into care, reducing the use of emergency rooms and hospitals, and reducing substance use among persons with co-occurring substance use disorders. …peer staff have also been found to increase participants’ sense of hope, control, and ability to effect changes in their lives; increase their self-care, sense of community belonging, and satisfaction with various life domains; and decrease participants’ level of depression and psychosis.” (Simpson 2002).
The client group Fenyw targets comes from a background of abuse and neglect, where the template for healthy relationships has not been taught, and where communication has been more through actions than words. One of the main goals of Fenyw is to help our clients to use help and much of the work will be exploring the relationships that develop in the centre. Motz (2014) highlights the impact of experiencing and witnessing intimate partner violence and the frequency with which these toxic relationships are replayed later life. Fenyw will attempt to help its clients understand their relationship patterns in a community setting where mistakes can be made and thought about.
While Fenyw’s TC elements would qualify it as an enabling environment (Haigh et al 2012) there would be a number of other therapies on offer. What people attended would be based on their preference and formulation with a focus on managing acute problems first. I would struggle to make use of anything if I was withdrawing, psychotic, penniless, separated from my children and/or homeless. Staff including social workers and experts by experience would prioritise these needs. Once clients are able to think about more than survival, psychologically focused individual and group work would be on offer including DBT, metallization and psychoanalysis. In addition there would be roles in the centres which clients could take on the gain work experience and qualifications, there would be links to voluntary work and education and a program for increasing literacy and numeracy. Ideally our initial clients would be our future experts by experience.
What I have outlined in the two points above is an organisational intervention to keep women from going into environments of high security and a clinical intervention to subtly provide a healthy attachment for the women to go on to make use of more structured therapies. My rational for doing this is that people who readily identify their difficulties and believe change is possible tend to do well in therapy. Alas from the profile outlined earlier, these people are not reflected in the female prison population.
The difficulties for staff working in Fenyw will be significant. “Without robust frameworks to make sense of the intense emotional content of interpersonal contact there is a high risk of…(staff) being drawn into toxic relationships with the women patients, other professional groups and each other (Aiyegbusi 2004). The relationship difficulties of the past will be played out in the centres. Not only do we ask the staff to help those who have little experience of carers being helpful (Hinshelwood 2002), we ask them to thoughtfully hold back from the urge to protect those who are communicating their pain and to let the clients learn from their peers rather solving problems ourselves. This is all while the staff are holding ideas about those who hurt others coming to an easy option rather than being punished. One solution is to employ the mythical ‘right staff’ but in their absence, the service user consultants will be key to ensuring that splits are reduced – its hard to think of ‘us and them’ when the staff have been in prison and the offenders are in the staff room. Also “the experience of co working with service users reconnects staff with them emotionally” (Farr, 2011) reducing the risk of dehumanising our clientele. This deconstruction of the powerful/powerless dynamic that has proved so unhelpful for this client group will be difficult for staff, used to being in positions of authority, as they adjust to a different role. Tuck & Aiyegbusi write of the damage staff can sustain when receiving the raw communication (projection) of their clients trauma. Staff “need supportive, containing structures where they can think about their relationships, test reality and reflect on their experiences thoughtfully. (Tuck, G & Aiyegbusi A 2008). Fenyw would provide regular individual and group supervision to help staff process the experience of the work. While our staff would recognise our clients as victims, they must not “behave as if they had no idea why their clients had been imprisoned in the first place” (Barrett 2011) so supervision would help us to keep a balanced view of those we work with. Fenyw’s leadership must promote an environment where mistakes are opportunities to learn to reduce the chances of a blame culture developing. We would also emphasise shared decision making (particularly with our clients) so that no one person is held accountable.
The goals for Fenyw would be typical of a criminal justice/NHS service. We aim to reduce offending. In addition reduced self harm, mental health problems, substance misuse and more clients having stable accommodation would be key. These might be achievable via increased problem solving skills, parenting skills, literacy, numeracy, sense of belonging, self efficacy and people in work education or training. Also we’d like less children going into care and victimisation (avoiding typical relationship patterns). Because Fenyw will keep clients in the least restrictive environment, there is potentially a risk of increased completed suicide or accidental death when engaging in potentially lethal self harm. It would be important to measure the quality of life of clients currently in prison/secure settings to compare it with those in the women’s centres. Many would be fearful of a higher number of deaths, but there would be less people living in hell. This is likely to be a highly contentious issue for the public and the media but for Fenyw to be successful it cannot replicate the environments that seek to eliminate risk which currently fail women so badly.
Our women’s centres cannot be islands where men don’t exist or are seen only as abusers. There will be a mix of staff so that the experience of a relationships can be scrutinised and thought about. After the women have gained some understanding of their patterns of relationships (either from individual therapy or the TC) they will be encouraged to explore relationships in the community, ideally in environments outside of mental health or criminal justice. Women would move from residing at the centres, to attending regularly to attending as required as indicated by their formulation.
And that is my ‘Moon Under Water’ of the female criminal justice world. What you missed out on was another 1000 words about what it was like to study women in a largely female educational environment. Interestingly I started wearing figure hugging tops and grew a beard. No doubt if the course was a few weeks longer I’d have dragged the carcass of an animal I’d hunted and killed in with me.
The service I described is quite idealistic but certainly no worse than the prison environment where something so toxic happens that women kill themselves at a higher rate than men. As ever, let me know what you think. Keir @keirwales
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
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January 2018 was an interesting month in the world of what textbooks refer to as Personality Disorder. There was the launch of the Personality Disorder Consensus Statement, an article on Personality Disorder on the BBC and the launch of the Power Threat Meaning Framework. While I haven’t read the full version of the PTFM I have read a lot about it, and there has been a lot to read. The responses were many and mixed. Some of the responses have been vitriolic, others merely critical, and others more celebratory as a high profile way of thinking about mental health and mental health problems leaps into being.
Some of the criticisms of the PTMF are articulately laid out here. What I want to do in this blog is lay out a basic version of what the PTMF promotes, why it’s essential that people can take this on board and what might get in the way of making some use of it.
Within traditional psychiatry signs and symptoms that occur together are named as a diagnosis. The PTMF encourages us to shy away from diagnosis and illness and instead explore a person’s difficulties and distress in terms of:
What happened to you?
How did it affect you?
What sense did you make of it?
What did you have to do to survive?
From the questions above we can then discover a narrative around why someone does what they do. We can see how their behaviour makes perfect sense given their previous experiences. In an ideal world we can then think about what might help and at a minimum consider how to avoid replaying some of the person’s most negative experiences.
For difficulties such as insomnia the framework might not be that helpful. For other areas I suspect clinicians and service users should use it if they both agree it’s useful. For the people who get labelled with Borderline Personality Disorder this kind of thinking is vital.
Why is it vital? There was a time that I didn’t think that it was. I was happy to join in with a roll of the eyes and a “typical PD” comment. I could understand that someone was self-harming because they had a personality disorder. Times when I felt attacked or criticised it was easy to label everything as the product of a disordered personality – this left me as a flawless clinician with merely a faulty patient to contend with.
As the years ticked by my experiences in work got me thinking of people with a diagnosis much more as simply people. My work became about helping staff who thought in the way that I used to, to unpick their ideas and see someone in a more empathic way. What I tended to find was that a list of diagnostic criteria had absolutely no impact in how staff thought about and responded to the people in their care. When we could move away from the descriptive (and fairly judgemental) criteria and think about the experiences that people had lived through that might inform how they behaved, then it felt like some empathy could arise.
1 Looking through someone’s notes I read “Mandy went to her room and was self harming due to her diagnosis”. It frustrated me that someone’s thinking could begin and end with that sentence. There was no sense of what was going on in their head. No indication of or curiosity about what they might be feeling. No indication of how people around them responded (apart from the implication that it was dismissed and pathologised). How can we help people if our sole understanding of their behaviour is that they do it because of a particular label?
2 I was in a group and someone recounted something that they’d done “because of my BPD”. We spent a decent amount of time exploring how their feelings and responses were entirely appropriate, especially given their early traumatic experiences. The description of overwhelming emotion and the desperate urge to feel something different made a lot more sense and contained more potential for change than “because I’ve got BPD”.
It would be easy to say that the above examples are simply people using diagnosis badly. While this is true, there is something that happens in this area of work that means that traumatic histories are forgotten and staff see risky or troubling behaviour purely through the lens of their own experience.
“I feel manipulated” = They were manipulating me
“I don’t know why they did that” = They were doing it for attention
She cut herself after ward round = She’s trying to sabotage her discharge
To an extent this is understandable (understanding does not mean approval). I was very poorly trained to work with people who had lived through trauma and my understanding is that undergraduate training hasn’t changed significantly. With no knowledge base, the students of today tend to learn from those who also had little training so learned on the job. Combine this with people who cope in ways that can be dangerous (the results of which staff might be blamed for) and you have an environment full of confused, anxious clinicians. This seems to lead to a situation where toxic ideas can flourish with little opportunity for people to learn anything different. A new cycle of treating people as if they were manipulators begins, with people reacting to that hostility and then having their reactions explained by their diagnosis.
This doesn’t happen everywhere but it does happen every day. Any tool we can use to stop the thinking shortcuts of “They’re just…” and focus on an empathic understanding of why someone does what they do seems essential for maintaining compassionate care. We can’t validate someone with personality disorder, but we can validate someone whose thoughts feelings and actions make perfect sense given their experience. The PTMF may not be product that means we never use diagnosis again, but let’s not boycott the restaurant because there are a few dishes we don’t like.
March is upon us and this is my first blog of this year. The main reason for that is that I’ve been desperately trying to get my dissertation finished and any writing that has not contributed to that 18,000 word total has felt like a betrayal. Anyway, it’s handed in now and it’s time to cast my eyes upon the land of my fathers as the British and Irish Group for the Study of Personality Disorder Annual Conference is coming to Cardiff on March 20th. With this in mind, it’s worth looking at how Wales responds to the needs of those diagnosed with personality disorder and how we compare to our neighbours on the other side of Offa’s Dyke.
In some ways, Wales has been quite pioneering in this field. While the NICE guidelines for borderline personality disorder were published in 2009, Wales laid out its own blueprint for services in 2005 calling for the provision of specialist services that were integrated into current provision. This was echoed in the NICE guidelines 4 years later. With Welsh Government guidelines and the National Institute for Clinical Excellence requiring trusts to provide specialist services you would assume that Wales would have ploughed ahead. You would be mistaken…
In 2017 Oliver Dale and his colleagues undertook a review of the provision of personality disorder services in England. They found that 84% of trusts provided a specialist service. In Cardiff in 2016, at a conference that gathered people from all the trusts in Wales, we very quickly replicated Dale’s study. We found that less than half of Welsh trusts (3/7) had specialist services. This was odd because 2 had services that were recognised as being very effective while areas that didn’t have specialist services talked about “the privatisation of PD” – how those diagnosed with a personality disorder were ‘not their business’ and were sent to expensive independent hospitals miles away.
Given the potential for specialist services to reduce the amount of people sent (and they go under the mental health act so they are literally sent) out of area I began to wonder why the Welsh Government wasn’t pushing trusts to follow NICE guidelines, or even its own guidelines. I wrote to the Health Secretary asking if he could encourage trusts to follow his own and NICE guidelines or explain what they were doing that was better. The disappointing response was:
“I hope you will understand that neither the Cabinet Secretary nor Welsh Government officials can intervene in health boards’ day-to-day operations”
This seems to me to be a preposterous answer. Not least because one of the Welsh Health trusts is under ‘special measures’. This is defined as “Current arrangements require significant change. Welsh Ministers may take intervention as set out in the NHS (Wales) Act 2006.” So in contrast to the answer I received, Ministers can not only ask why NICE guidelines are not being followed, they can take intervention to remedy it. In this case they merely choose not to.
If over half of Welsh trusts were refusing to provide treatment for people with cancer I suspect someone at the assembly would pick up the phone. If half of Welsh trusts declined to offer services to war veterans I’m convinced someone at the assembly would write a letter. Over half of Welsh trusts are ignoring Welsh Government guidelines and NICE guidelines for people diagnosed with personality disorder and the government doesn’t even see it as within its remit to ask why.
We can have lots of ideas about why this might be. We could say it’s because specialist services cost money, but the evidence is that they save money by reducing the need for expensive Out of Area placements. We might conclude that personality disorder remains a diagnosis of exclusion in Wales and that for some reason this is acceptable. Those in mental health tend not to shout very loud for their rights to be upheld. Those diagnosed with personality disorder are probably the most stigmatised and excluded within mental health. They are easy to ignore, easy to forget about and potentially paying £200,000 a year for them to be sent out of area is for some reason a better option than having to work with them at home. We can do better than this.
I wasn’t particularly satisfied with the answer I received, so I emailed again. Part of my letter said:
“I take your point that neither the cabinet secretary nor government officials can intervene in the day to day running of health boards, but I wonder if the Welsh government could avoid being complicit in the exclusion of people diagnosed with personality disorder by strongly encouraging trusts to follow its own guidance. My understanding is that NICE clinical guidelines continue to apply in Wales so I’m curious why it’s acceptable for less than half of Welsh trusts to follow them. Given that trusts have been sued for not following NICE guidelines would it be prudent for the Welsh Government to call on trusts to justify why they are not following the guidelines rather than have to pay the legal bills when somebody opts to take matters to court?
I welcome the extra money that the Welsh Government has put into primary care however the clientele I was speaking of tend to manage their distress with potentially lethal self harm. This is generally not seen as a primary care role and an absence of specialist services means that they get sent to largely unsuccessful out of area placements at a cost of around £200,000 a year. This is £1,000,000 to treat 5 people where a specialist team at a fraction of the cost could provide better treatment without the necessity to send Welsh people to England”
My response to this one was equally uninspiring. I was told that despite seeing no role for itself in highlighting that less than half of its trusts follow NICE guidelines for a particularly stigmatised group, the government had signed a pledge to reduce stigma. I feel like actions might have spoken much louder than words here.
I was also told “The Welsh government’s main role is to set the strategic direction for health services and hold the NHS to account”. For me ‘Strategic Direction’ might include writing guidance. ‘Hold the NHS to account’ might include ensuring that guidance is followed. I’m baffled why this is the case for some areas of health but not the realm of personality disorder.
The reply finished with “Health boards must regularly review their services to ensure they meet the needs of their resident population you may, therefore, wish to consider contacting the individual health boards directly on this matter” – my interpretation of this was “We have produced guidance, NICE has produced guidance, half of our trusts are ignoring it and if you want to know why, you can ask them yourself”. Again, this seems an incredibly vague interpretation of setting strategic direction and holding the NHS to account.
I did an experiment and opted to contact one of the health boards to find out why they didn’t follow NICE guidelines. They replied that Dialectical Behaviour Therapy was available in some areas and that intervention was offered through generic services. “That’s not what I asked” I replied, “Where are the specialist services that NICE recommend?” They replied something along the lines of “We know we’re not following the NICE guidelines and we’re working on it as a priority”. Given that it’s 13 years on from the Welsh government guidance and 9 years from the NICE guidance you have to wonder how far down the list of priorities it must have been. There is also the worrying response that “we need additional funding to create specialist services” when the reality is that a service could be paid for immediately by not sending one or two people out of area. If the health boards are happy to spend £1,000,000 providing treatment to 5 people for a year, why not provide therapy to hundreds of people in the community for the same money?
Frustrated and wanting to know the extent of the problem the trust was ignoring I tried one more time. A freedom of information request asked:
How much does the Health Board spend on residential treatment for people diagnosed with a personality disorder?
How many acute beds are utilised by such patients who are often stuck on acute wards?
This resulted in the response:
“Unfortunately, the Health Board is unable to respond to your request for information as we do not record data on personality disorders to this level of detail.”
“This level of detail” is an interesting phase. Another interpretation of this is “People we pay over and above £200,000 per year to receive treatment in private hospitals, we don’t even record what we are paying for”.
No Longer A Diagnosis of Exclusion was a document published 15 years ago highlighting the discrimination people diagnosed with personality disorder experienced within mental health services. 15 years on, despite an early call for better service provision, the Welsh dragon must hang its head at the ongoing systemic discrimination that goes on. This is a client group of whom 10% will die by suicide. The National Confidential Inquiry into Suicide and Homicide by people with a Mental Illness found that none of the 10% who died over the period of their study were receiving care that was consistent with NICE guidelines. Perhaps a high proportion were living in Wales where for some reason the NICE guidelines don’t apply or, for this client group, there is no will for trusts to implement them.
It was about 2 years ago that I asked the Welsh government to encourage trusts to follow the guidance it had written around personality disorder, let alone the NICE guidelines that apply across England and Wales. That 84% of English trusts have a specialist service compared to our 43% is shameful indeed. It would be less shameful if we saw it as a travesty to be addressed rather than an issue to contact individual trusts about if you are interested. I’ve asked Mind Cymru, Time to Change Wales, Hafal, Gofal and other groups with an influential voice to try to make some noise about the current exclusion of this client group in Wales. Perhaps with the British and Irish Group for the Study of Personality Disorder Conference coming to Cardiff in March, the Welsh Government might reassess it’s position on encouraging trusts to follow its own guidance. Perhaps it might start counting the amount of money spent on sending people to England for treatment they don’t want. Perhaps 15 years on it might reread No Longer A Diagnosis of Exclusion and consider that the difficulties experienced by those diagnosed with personality disorder have a legitimate place in our health service after all. I hope they do.
For a petition to be considered by the Welsh Assembly it needs to get 50 signatures. A petition that calls on the Welsh Government to implement the NICE guidelines for borderline personality disorder can be found HERE. Please sign.
It is too early in the morning, there is a light dusting of snow on the ground, and I’m heading off to Manchester to spend a day dropping the disorder. A Disorder for Everyone (#adisorder4everyone) advertises itself as a one day event for a range of staff and service users to discuss critical questions around the biomedical model in health. My perception of it is that it’s overtly critical of our current system of diagnosis (especially around the term personality disorder) and heavily promotes the idea of formulation and understanding difficulties rather than labelling them. Less a neutral place to debate but a place with an agenda and a message to impart. This is no bad thing as I’d agree with something that I often hear emanating from the AD4E days, that “Diagnosis obscures peoples stories”, that once something is labelled, it’s an excuse to stop thinking and respond to the label rather than the person.
The event comes at a poignant time. Earlier in the week I’d lost someone I was relatively close to (as close as you can be to someone you have never met) on twitter to suicide and I was at an event where her passing was to be acknowledged. She was almost described as someone who ‘had’ personality disorder and I was glad to be able to point out how much she (and eminent psychiatrists) rejected that label for her presentation, how she felt that it had led to a ‘care’ plan she felt to be brutal and dehumanising and how she saw the label as something that had led to the staff around her acting in a way that was toxic to her. So in a week where the damage labels can do is on my mind more than usual I was off to find out more.
I need to confess to being a touch apprehensive about going. When talking about what textbooks describe as ‘personality disorder’ on social media I tend to get a bit of a hard time. I wonder if it’s because the debate tends to become polarised and I actively try to keep something of a middle ground. In a polarised debate this means I don’t end up on anyone’s ‘side’ tending to result in me being perceived to be ‘against’ people. I rarely am and if anything, my views on diagnosis tend to slide more towards the DTD side. I shall elaborate….
Whenever I’m training people about personality disorder, someone will pretty much always say “I want to know about the signs and symptoms and the different types”. In many ways, this knowledge is next to useless, but it does help staff feel more competent and competent. Most days this statement gets a response along the lines of….
There are 10 types of personality disorder. I’ve worked in a variety of mental health settings for the past 18 years and I have met less that 10 people with a personality disorder diagnosis that isn’t borderline or antisocial. So – there’s these 10 types, only 2 of them ever get diagnosed. Something with this system is seriously wrong.
In my experience if you are a woman who self harms, you are getting a BPD diagnosis regardless of whatever else is going on. Something with this system is seriously wrong.
Research suggests that if you can be diagnosed with one personality disorder, it’s highly likely you’ll meet the criteria for another 2. That’s 3 personality disorders in all. So in a system that aims to put people into a neat tidy box so that we know a care pathway, it’s messy because they’re actually in 3 boxes (and probably with some traits in a few others). Something with this system is seriously wrong.
Let’s take borderline personality disorder in the DSM 5 as an example. To be given the diagnosis you need to match 5 of the 9 criteria. Let’s say that my friend Ian and I are on the ward. He can meet criteria 1-5 and I’ll meet criteria 5-9. That’s us with the same diagnosis, the same treatment plan, and sharing only one characteristic. Something with this system is seriously wrong.
Those are the problems within the system, let alone the insult inherent in labelling someone as having a disordered personality. I can intellectually accept that we all have personality traits, that some of those can cause us difficulties (mine do!) and that if they cause us serious difficulties that could be described as a disorder. The difficulty in this field is that the majority of the people getting this label are those who have lived through experiences of neglect, abandonment and outright abuse. To then label them as disordered rather than seeing them as having an understandable response to their experiences then seems to be somewhat callous.
Now often, people can’t accept that the ideas above go anywhere near my head at all. One reason for this is that I work in a personality disorder service. I’m told that I have an investment in this label and that I have forged a career on the backs of abused women. I can see a basis for this argument but I’m not sure what the correct response is. I suspect it’s to jack in my job. The difficulty I see with that is that systems often struggle with people who get a personality disorder label. I want to make that better. I’ve met too many people who come onto wards feeling suicidal and never get let off again. Ways of coping that would go unnoticed in the community become reasons to detain in hospital and all of a sudden people have been on an acute ward for 6 months, they’re on a range of toxic chemicals, they’re 3 stone heavier and they’re about to be shipped off to some institution miles from home. Will this happen less if I stop work? I suspect not. Will there be a voice that challenges this trajectory? Again I suspect not. I was reading Gary Kasparov’s book last week and he was talking about what to do to combat malaria. Do you try and help some people now or a lot of people in the future? Do you make more mosquito nets or do you work on a cure? I’m making mosquito nets and I want all those working on the cure to succeed. It doesn’t mean that either of us is the enemy.
So in essence, this is what I a took into the event. I also took some worries. If the diagnostic system vanishes, how do newly qualified staff cope? It took me years to feel confident enough to just look at the difficulties people were experiencing. Can someone do that fresh from college? How does that culture change come about? Painfully I suspect.
Also, what do we do with our accumulated knowledge so far? Is it useless because it’s built on such a shaky foundation? With a diagnostic system shattered, will we know ‘what works for what’ anymore?
So the event is over. And I survived. Actually, the apprehension I’d had about attending was totally groundless and while a couple of people recognised me from social media, they couldn’t have been friendlier or more welcoming. While there was a touch more poetry present than I would normally have the stomach for, it was powerful in its delivery and did what I think all good poetry does, says more with less words.
I’d opted to go to this event rather than other DTD ones as I was keen to hear Lucy Johnston speak and I’d somehow managed to overlook that she actually speaks at all of them. I was a little bit disappointed, not it the quality of what she said, but because I’d expected there might be something to rail against. Something that sounded a bit too left field or a bit ‘crazy’. Instead Lucy gave a critique of diagnosis where there wasn’t anything substantial to push against. If I’d wanted to be particularly devilish I might have pointed out that the diagnostic criteria she (rightfully) pointed out as being moral judgements did come with the caveat that they needed to cause problems for people for the diagnosis to apply. Having said that, I’ve seen people detained in hospital for self harm that was only a problem for other people so I might support Lucy’s position about the spirit of how diagnosis is used, if not the letter of it.
In the afternoon Lucy spoke about the value of team formulation. Again (almost disappointingly) there was little to disagree with. She described a mechanism to keep teams thinking so that they weren’t overly rejecting or enmeshed. It made me think of the Knowledge and Understanding framework for Personality Disorder and the Offender Personality Disorder Pathway and how they both (in my experience) aim to challenge labels, offer a understandable and empathic alternative to a diagnosis and “try to keep thinking at all levels in the organisation”. It also made me think of the NICE guidelines for Borderline Personality Disorder which encourage trusts to set up specialist services to “provide consultation and advice” which in my experience has been a similar “let’s forget about labels and understand what’s going on approach”. Now the KUF, the OPD and the NICE guidelines are heavily loaded with the PD label, but as they offer a non diagnostic approach is that a price worth paying to get organisations thinking differently? In systems that are welded to a hierarchical, diagnostic system, are these tools a wedge to get different thinking in? Many will think not but one of the reasons I often berate Wales for not following NICE guidelines is because without a mechanism in the organisation to promote thinking, people mindlessly (often with good intentions) do what they have always done. One of the comments about the use of team formulation is that getting a team together to think for an hour costs a lot of money. It does. But locking someone in a “specialist” placement for a year costs £200,000 and if formulation stops that happening once then its paid for itself until most of the team have retired.
Jacqui Dillion (Dr Jacqui Dillion no less) finished the day off with a description of her journey through life, services and activism. It was a captivating talk with far too many people who you might expect to be helpful being outright abusive. We heard experiences being discounted as illness, emotions being discounted as illness, anger about not being believed discounted as illness and a host of people who should have helped replicating the abuse of the past. It was this part of the day I found most affecting and it was heartening to hear Jacqui talking of what made life liveable for her again. Not some magic therapy but someone who would listen, someone who would validate and someone who empathise. Someone who could give a different perspective to those who told her she was evil and bad. I’m going to butcher this quote but it was something along the lines of “We are traumatised by relational abuses and we need relationships to get past them”. For all those on the ward and the CMHT who don’t know how to help I’d urge you to read that sentence again.
Jacqui asked how many people worked in mental health and a bunch of hands shot up. She told us that you have to be a bit odd to choose to do this. I tend to agree and I often wonder if what gets labelled as personality disorder is the combination of those who get all their self worth from helping people in distress meeting those who understandably cannot trust those who are supposed to care. Much to think about…
Having left the event I’d share what one of the delegates voiced with frustration, that this is all just common sense. It is, but we need to find a way to inject it into systems that run like they have always run and are paralysed by the fear of being blamed. My only gripe of the day is that there wasn’t much of a chance to interact with the other delegates. Even if there had been my suspicion is that the event wasn’t populated by senior managers and clinicians from the NHS. I think people left validated rather than converted but again, this is no bad thing. We might also have left a bit angry. ‘Anger is an energy’ was quoted (but not attributed to the Sex Pistols). I quite like ‘Anger is a gift’ from Rage Against the Machine. Certainly people left with anger but also with some ideas around how to apply it.
Part of the theme of the day was how labels can stigmatise and stop us seeing people. We talked a lot about the value of stories, how people are made of stories (not sure I agree, but certainly our perceptions of others are), and how “recovery” was about getting a story that portrayed you as a survivor of adversity rather than someone who was disordered or ill. We have the power to influence the stories that are told about people and I left today inspired to tell better ones. To tell stories about people, about why difficulties make sense and about ways in which we can help. I want an alternative to a Daily Mail letter that talks only of illness and tablets, and in the midst of all the evils of the world, I want to tell stories that are full of hope.
I’d heartily recommend attending one of these events and there are details of the next ones here…
This a first for The Diagnosis of Exclusion. Normally this blog is full of the guff that spews out of my mind but this time it’s a response someone sent in to one of the earlier blogs I did. I thought it was too good to keep to myself so – this is what it’s like when our best efforts to keep someone ‘safe’ aren’t wanted. We can help in lots of other ways. Enjoy.
(Obviously you can all scratch your chins and wonder whether I would have shared this if they didn’t back up the point I was making)
Some time ago now, Occupational Therapist Keir Harding wrote a piece on his blog – ‘The Diagnosis of Exclusion’ – about the professional response to patient self-injury within an inpatient setting. The post, entitled ‘Use A Little Restraint: Why People Who Self Harm Must be Forced to Stop’, is one I’ve found myself returning to again and again as I reflect on my own inpatient experience.
I am the patient Keir writes about, you see. I mean, I’m not – I know of Keir as a fellow Tweeter/blogger in an online environment only – but for a number of professionals in similar positions, I have been.
Way back at the beginning of my most recent, all-too-lengthy hospital stay, I was admitted for suicidal ideation – incessant thoughts of self-destruction having taken over my brain. I was hopelessly low; had almost entirely given up. I was putting myself in dangerous situations with no regard to their possible conclusion and the obsessive plotting of these scenarios never seemed to cease. I was in A Bad Place. The professionals admitted me to hospital from a very genuine, very human desire to keep me safe.
Unfortunately, hospital is not a place that makes me very safe.
Struggling to cope, in the depths of my own despair, I am thrust into the midst of 25 other people’s chaos and distress. The ward is loud; unpredictable; and occasionally frightening. I am on an unfamiliar island, surrounded by a shipwreck of strangers going through their own shit. There is little privacy; no personal space; the flimsily-curtained bed area providing limited comfort or retreat from the sounds of shouting and alarms and wailing and vomiting and other people’s private tears. It is intense. I exist on high alert; the volume of the whole world suddenly increased.
I am permanently on edge. They are worried for my safety so I cannot leave – not even for a five minute break. I am trapped like an animal in a cage and I begin to feel wild like one, untamed.
These feelings only feed the hopeless voice inside my brain. Unable to go anywhere – distanced from everything that I know – I am cut off from the tools that help me cope. If I wasn’t managing before, now there is no hope. I cannot go for a drive or take myself for a walk to put space between my feelings and me. I cannot bury myself in familiar blankets or use my sunset clock to initiate sleep. I cannot lose myself in the kitchen, cooking up a distracting kind of feast. I cannot run or swim or go to the gym for an endorphin buzz or release. The things that help weren’t really helping, but now trying is not even an option – they are no longer accessible to this locked-up me.
My head is a witch out to get me. The ward is a cauldron bubbling relentlessly. People scrutinise my every word or action, further turning up the heat.
I feel unable to escape; desperate for a moment of peace from the noise of the ward and the noise inside of me. Feeling like there are no alternatives available to me, my last resort is the only thing for which I can reach. I hurt myself – clumsily, sneakily and somewhat superficially – finding respite in the familiarity and sense of relief.
I am caught out, eventually. They have always known this to be my final coping strategy, but here, on their ward, it is no longer okay. I am in the bad books. Whether I am just deemed ‘trouble’ or they are genuinely worried about me remains an uncertainty, but whatever the motivation they decide to observe me. Now the intensity of the ward has a new dimension – a shadow constantly following; a pair of eyes, even in the bathroom, watching me. For an anxious introvert who values her own space, this is torture – completely unbearable to me. In their determination to maintain my physical safety, they unintentionally ramp up the distress levels to Beyond Tolerable within me. I cannot cope. I crumble completely.
In my crumbling, I continue to reach for the only thing that might sustain me. My self-harm is ever more secretive now; ever more rushed, haphazardly. I am snatching moments so tiny that my actions become desperate and dangerous – minimum time for maximum effect. My harm takes on a shape it has never before been.
They give this different shape a different name, when they finally make the discovery. No longer satisfied with “self-harm,” they give it a new title – label it something previously unknown to me. Words are funny things, aren’t they? I consult with Dr. Google, obviously – trying to make sense of this wordthey’ve handed me – and a whole new world of self-destruction is revealed to me.
Once I step into this world, there is no going back – the style of the old world no longer effective now this one has been opened up. I am part of this new world now … And the new world very nearly kills me. Again and again and again, it almost kills me.
There are seizures and blood transfusions; blue lights and crash-carts at the ready. There are staff who alternate between desperately afraid and desperately angry. They want to make it better, desperately. In a bid to do just that – to make me stop; to fix things somehow, dammit, please – a whole new universe of nursed-in-room; 2:1 obs and restraints become my reality. In a vicious cycle I cannot break, this fuels the very thoughts and feelings that drive this behaviour in me, and so it goes on continually.
I am a monster; a burden; creating a mess for everybody. I am vulnerable; weak; stuck under the microscope; a freak show on display for all to see. I am broken and afraid. Trapped. I am hopeless. I admit defeat.
I don’t know what to do. No one else knows what to do with me. They stick me on a CTO but don’t know how to treat me. There are rumours of a more secure clinic somewhere far away and they frighten me. I was admitted a simple case of depression with some suicidal thoughts, but now I hear words like “Complex case .. Dangerous patient .. Challenging behaviour,” whispered regularly. I do not recognise this description of me. I have no idea how it came to be.
In the nine long months I spend on this merry-go-round, I lose sight of myself completely – entirely lose my sense of identity. I don’t know who or what I am anymore and the fight has gone right out of me. The world is dark. The end seems very near and I embrace it both fearfully and thankfully.
In the end, it is luck alone that seems to slow the merry-go-round for me. Luck; a team of professionals whose intentions are good (even though their actions don’t always help me); and someone willing to take a chance on me.
It is the hope of supported accommodation that begins to break the cycle for me: a tiny glimmer of something different to try; an alternative direction, finally. It is a safe and supported setting, but with a space that is entirely mine, away from the ward’s intensity and void of constant scrutiny. It is a limited resource and a rare opportunity and, in that sense, I got so very lucky. I have no idea how or why, when many other people in many similar situations haven’t been given a get-out so freely. I don’t dare to imagine where I’d be now had I not been.
As it is, things haven’t been easy. I left the hospital with more dangerous behaviours; more ingrained self-loathing; more fears and worries; and more negative coping strategies. At the same time, I left feeling weaker; less resilient; less able to cope with the everyday; less sure of myself and my beliefs. I feel like hospital destroyed my confidence and deskilled me completely. That’s a daunting and difficult place to be.
But I can say one thing for sure: it’s a thousand times better than hospital; a thousand times better than that merry-go-round; a thousand times better than what might have been. I am here now; home; alive; and so incredibly grateful that I got lucky.
So what’s the moral of the story? I’m not sure that there is one, really – simply a single person’s experience written down to speak to you freely.
I don’t wish to be critical of my care team because I know that they make difficult choices with limited options on a daily basis and I have a lot for which i am very grateful to them. Neither do I wish to rule out the usefulness of an inpatient setting entirely – there is certainly a place for it, I believe. I guess I do wish to get those brains whirring around its therapeutic effectiveness and how this might be improved; to wonder about which behaviours we might frown upon and how we respond; to ponder the impact of the language we use; to reflect on the role of positive risk taking; and to consider how we collaborate with and empower people to find alternatives to move on..
These are not easy challenges for anyone – on either side of the experience – to face. Thank you, sincerely, to each of you professionals who navigate this minefield every day and particularly to those of you who take these moments to be challenged and reflect on how best that might be done!
Lets start by saying that I self harm.I self harm regularly in a way that society tends to approve of.Most Saturdays I strap on my rugby boots and on a good day, for 80 minutes large, hairy men will charge at me while I try to knock them over.On other days I am punched, stamped on, scraped with studs, or just hurt.Over the years I have broken my nose, chipped my teeth, ripped the skin under my chin open, split my forehead and all last week, sported a big purple eye.I play rugby every week, not seeking pain but knowing full well that it is inherent in this activity.The pain and damage that it gives me is worth it in terms of the other benefits that I receive.Now obviously playing rugby isn’t the same as cutting lines in my thigh, but I’m arguing that that both activities are on a spectrum of things that damage you but come with some reward that makes it worthwhile.
Now its interesting that nobody cares about my self harm in the slightest.In work I spend a lot of time with people who regularly self injure, where others aren’t that bothered about their self harm either. At work I try to point out the link between self harm and suicide, offer to help and support people who want to stop and encourage them to care for themselves in ways that don’t involve hurting or punishing themselves. I never forcibly stop them.The people I work with all live in the community and can make informed decisions about how to live their lives.If they want to stop self harm I’ll do my best to help.If they don’t I’m still there (although I might let them know how I’m affected by it).Self harm is their understandable way of coping which they do because it works.
On the ward, it is a different story.The people I work with tend to have long standing thoughts of suicide.When that chronic risk becomes acute they might be admitted.What is interesting is that it becomes an unspoken part of someone’s care on the ward that they must immediately stop all forms of self harm.It doesn’t matter that self harm wasn’t a factor in their admission, it has become one now.Usually the acute period of suicidality passes fairly quickly, but because those who have self harmed for years have suddenly lost their only way of coping the risks go through the roof.Those who cut carefully with blades are ripping cans open, smashing crockery, banging their heads on the wall and (potentially most lethally) tying things around their neck in a quest to get whatever benefit they usually receive.It is at this point the person tends to want to get out of hospital asap and it is at this point that the enforced self harm abstinence really comes into its own.While the client articulately tells people they don’t want to die and just wants to go home, we can’t let them go until they fit our model of wellness, which tends to involve them presenting with healthier coping methods than they have used in years.
With people who don’t want to stop self harming (and weren’t admitted to do so) psychological intervention to help them stop rarely works.Instead we prescribe different intensities of observation ranging from being checked on once an hour to being followed constantly by 1 or more staff.At times we can administer a PRN dose of heavy staff to physically stop whatever behaviour we find intolerable.As the risks increase the number and weight of the staff rises proportionally and eventually we decide that the only solution is large staff in an environment far away from us.
We can wonder about why MDTs need someone who has no intention of stopping self harm to be self harm free before they are discharged.We can spend even longer wondering how a period of stability can be achieved when long standing coping mechanisms are forbidden, everything is scrutinised, no leave or time alone is allowed, any emotional response to this treatment is written off as part of the diagnosis and if you do try to hurt yourself in a way that no one would have batted an eyelid at in the community, 3 heavy men will hold you on the floor in a vague reanactment of one of your most traumatic experiences.
Looking at this rationally we can see that if you want to seriously upset and disregulate someone, following the above “care”plan might well be the perfect way to do it.
Its worth thinking about why situations like this come about.I hear others say that they are kicked off the ward as soon as they self harm but for some clients, ward based self harm is more effective at keeping you on the ward than locking yourself in the nursing office.It makes sense that we let people make their own decisions about how to manage their distress in their own homes, but why do we have to forcibly prevent them on the ward?
There’s two main factors at play for me. The first is that the majority of mental health staff come to work to make people better.Our training prepared us for people who would come in with simple problems, we would dispense our wisdom and they would recover and be grateful. It is almost impossible for staff to look at someone under their care bleeding profusely and feel they are doing a good job. Stopping self harming is a kind of recovery and if people won’t get better, we will make them better. I’m sure this starts out with the most caring and compassionate motivations but after a few weeks of wrestling much of the empathy will have evaporated.
The second is how painful it is to see someone hurting themselves.There is the immediate visceral impact of seeing damage occurring, the emotional reaction to seeing someone in so much distress and the psychological trauma of watching someone causing damage to themselves. When we combine people who see their role as preventing harm with people who use harm as a way of coping we manage to whip up a perfect storm where the more we help, the more abusive we are perceived.Given no obvious other way of helping we do everything we can to prevent harm occurring and lose sight of how much added distress, trauma and risk our help is causing.Regardless of the clients wishes, we will join the long list of other people in their lives who forced them to do what we wanted.
I see the above frequently and I suspect it is replayed across the country. I worked with a man recently who was only ever violent when he was in hospital.He was no longer suicidal but couldn’t be let off the ward until the behaviour that only occurred on the ward had stopped occurring on the ward.
My solution is for organisations to have a team to think about these complex dynamics that are so hard for us to see when we are caught up in them.The NICE guidelines for borderline personality disorder describe teams who support the organisation to formulate, assess and respond to complexity and risk in thoughtful ways. A 3rd mind that can ask the question “Why do we keep doing this when it makes it worse?” can be invaluable.
So often I find that staff caught up in these situations are utterly miserable.They can see that they are actively harming someone with their help but feel powerless in a system that knows only higher levels of restriction in response to risk.In my ideal world admission would rarely be used and when it was, the benefits/costs would be thought about beforehand.At the very least on every care plan we would rubber stamp “do not detain in hospital for behaviour we wouldn’t consider detention for in the community”.In models of organisations that work with people, a strong emphasis is placed on the value of a thinking space.I regularly hear that this can’t happen and that action is valued much more.If staff can’t be given space to think and reflect then specialised teams might need to do their thinking for them.This might involve changing the culture of the organisation so that risk is thought about in a different way.I have 2 fears.One that this will only begin to happen after someone who is far more dangerous as an inpatient accidently kills themselves on the ward.My other fear is that this happens time after time and we still can’t learn from it.
Now blanket approaches to managing risk are rarely successful and its most beneficial to think about everyone individually.I’m not advocating for inpatient environments where anything goes, but for thoughtful consideration of how people respond to an environment and how we respond to their presentation.If nothing else, let’s think about our role in someone’s change in presentation. Most importantly, lets ensure we are never a part of someone being sent miles from home to be forced to stop something that was never a factor in their admission.
All thoughts appreciated @keirwales
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
Much of this was inspired by a conversation with @graffiticymraeg who’s blog https://themainoffenderblog.wordpress.com/ is far better than mine
All the above reflects themes expressed much more articulately in The Ailment