Learning to Be Me: Treatment in A Democratic Therapeutic Community

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

One of my favourite ways of helping people is the day therapeutic community.  I got a chance to work in one around 2010, a time when I held (pretty tightly) some of the more stigmatising views people express when talking about ‘personality disorder’.  I joined for a year and left most unwillingly after 2 and a half.  I spent 5 hours on a Monday in a group being genuine with people.  I worked with experts by experience and saw those who I’d thought of as being manipulative and attention seeking being brutally honest and utterly self sacrificing.  Aside from the change the group made in me, I saw people who had been on the verge of death from self injury move into lives where they could care for themselves and allow others to love them.  It was a powerful transformational learning experience for me and it is with much pain and despondency that I see this way of working move into the shadows, eclipsed by DBT and other 3 letter therapies.  In a world where services for those who hurt themselves tend to be easily forgotten or overlooked, 2 of the day therapeutic communities I was part of either won or were the only mental health team shortlisted for the NHS Wales awards.  Both these services have now closed and it feels palpably ironic that services can be both celebrated and praised for their excellence while also marginalised and unsupported.  Perhaps one of the reasons people find therapeutic communities hard to support is that they are difficult to understand.  The lack of direction can be uncomfortable.  The idea of patients having full control of their group can be terrifying – especially to organisations that try to eliminate risk.  In many ways the only way to understand how a TC works is to see it.  In the world of social media I’ve always hoped for someone to write an account of their time in a TC to give people an indication of what it feels like.  When I voiced this on twitter one day the marvellously articulate @shadesofsky offered to write that very piece.  A few months later here it is, a powerful account of what a TC can feel like.  I hope people read this and think of TCs as an option.  I hope commissioners and clinicians read this and remember that recovery isn’t only spelled DBT.  I hope people can remember that the NICE guidelines say we need to give people a choice.  Finally, I hope you enjoy reading this as much as I did.

Keir

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It’s 4pm on a rainy Tuesday afternoon. I’m a member of a Democratic Therapeutic Community for people diagnosed with Personality Disorders. I’m sitting, curled tight on a sofa that’s nearly collapsed in on itself, trying not to do the same. My knees held fast against my chest, my hands are tearing at my hair. 

I want out.  I thought that this was one place I was understood, but I was wrong, wrong, wrong. I am always wrong. I myself, am wrong. I want out.

 I am crying, hard. I’ve left the community meeting in despair again. Run away, because someone said something that I couldn’t handle. I don’t like it here. My anger is too intense. I can’t stand conflict. I am too full of anger. The whole community hates me. I am too messed up to be put right. I need to leave. 

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It’s 4pm on a rainy Tuesday afternoon, 15 months and 500 miles away from that Tuesday afternoon. I am remembering what I used to be like, when I was starting out treatment. Even after spending 12 months in the preparatory group, I was still a crumbling wreck. Brittle, the psychiatrist said. I would snap at the slightest thing. Cry. Self-harm. Stop eating. Nothing – not courses of CBT, years of counselling, exercise, book prescriptions – nor medication had worked to change my mental health. I was volatile and lonely, with a self-esteem on the floor. Not that you’d know that from the outside. When I started in the TC, I worked multiple jobs, more than full-time hours, teaching; researching. Striving. Pretending to the world that all was OK. Trying to run faster than the emotional maelstrom baying at me, without success.  For the past few years, life outside work had been getting messier. And I was terrified that I wouldn’t be accepted in the TC. I had never belonged anywhere. 

The TC, (group therapy for 15 hours a week) had offered yet another treatment option. Therapists from different health backgrounds, work with service users, as equal members of the community. Each member joins via a case conference which identifies the things that they would like to change in therapy, for a period of 18 months. I was voted in unanimously. I wanted to work on trusting others; on kindling a sense of self-worth, on handling conflict without falling apart. And on not needing to work so hard. But a few months in, I was crying more, breaking down more often. I had returned to the self-harm, that I’d been obliged to stop for a period of four weeks, as a condition of entry to the community. I felt intensely disliked. I was utterly unlovable: rotten to the core, my inner voice whispered. I’d given up working many of the hours I was doing. But I felt more depleted than ever. And I still felt rubbish. 

The community held me to account for my walk-out. I had to explain what had led me to leave; how I felt; what could stop that happening again. I had to face the reality of how getting overwhelmingly distressed and leaving the group had left others feeling. It was not comfortable. It left me feeling like I wanted to leave for good. But I didn’t. I kept going back because people would notice if you weren’t there. I went to group after group after group, day after day. 

TCs are set up to work like a microcosm of life outside. So, the idea is that with a small number of therapists and service users, each person will end up re-enacting the patterns of interaction that they use outside. And, within the boundaries of the TC, those patterns are examined and reflected upon, and changed.  There are endless boundaries in a TC. Twelve months into treatment, I was still discovering them. But I like structure and routine. After breaking the rule around no self-harm, I was put on a contract “to not cut”: and haven’t broken it since. The strict timings of opening and closing community meetings, the definite rules around contact with community members, the accountability for my actions, were keeping me contained. I struggled against flexibility; around times when the boundaries were deliberately broken – even by therapists – times that left me feeling like a small, lost child again.

Held by the boundaries, a few months into treatment, I was beginning to open up. Each week, the TC divided in half for “small group” – a time to test thoughts with a smaller number of people, look at events that had happened that week in more detail, or to share something new with the group. The feedback here was also painful. I was prickly, clipped, even condescending at times. I worked hard with the group to explore reasons for that. I was encouraged to take responsibility for the way I was acting – but not to blame myself for it, either. There was a reason – perhaps a wound that I was protecting – that was beyond my conscious experience – and that was driving my behaviour. The more I understood my knee-jerk reactions, the better position I was in not to resort to them. 

TCs don’t just consider interactions in the present. They consider their history, too. One way of doing that, in the TC I was a part of was psychodrama. Acting out the past. One time, I was nine years old, on the playground again. S — was standing in front of me, with J— and B— beside her. J—‘s family don’t want to buy a copy of the school class photo’. That was my fault, because it’s not a class photo’ because I’m in it, and I was not supposed to be in that class. I was in the wrong class. In the days before PhotoShop, S— and J— wished that they could scratch me out of it. So do I. I wished I could erase myself completely from everybody’s lives. Everyone hated me. Even my teacher standing less than a foot away didn’t respond as the slap S–struck across my face echoed over the playground. The whole world hated me. In the psychodrama, I fight tears, fight for control, as this scene is laid before me. I must stay in control. I must not cry. I am not nine years old. S— is not about to hit me for calling her a name, in despair because nothing else has made her stop. I’m OK. Really. I’m OK. The echoes of my present thought patterns are there. Surely, I’ve processed stuff that happened over 20 years ago. It wasn’t not your fault, S —. You were nine. The adults let you down.  So the therapist says.  The TC offer a different perspective on the past.  I have to work hard to believe that what happened when I was a child was not my fault. 

We spend time each week going through the Structured Clinical Interview for Diagnosis II. Each and every trait of personality disorder. And conduct disorder. We work as a group, reflecting whether we think we have the trait, and get feedback from the rest of the TC. As expected, I meet the criteria for EUPD. But I also meet the traits for Avoidant Personality Disorder, too. I intensely fear rejection. I am scared to let people in, unless I can be certain that I will be liked. So I distance myself instead, most of the time. It’s safer that way. I have some fairly rigid thinking, too. I like boundaries: I find flexible interpretations of the rules harder to bear.  Knowing the traits is useful. 

In Objectives (PsychEducation by another name) we go through model after model to try to explain our distress. I consciously try to apply my experiences to each one, to make some kind of sense of the mess. Radical acceptance, concepts from DBT, help me most. Seeing each emotion as a guest at your house. Trying not to slam the door on it, but to invite it in, instead, to get to know it better.  Mentalising, too. Thinking of all the other reasons why that person didn’t reply to my message, that aren’t about them not really wanting to be my friend. The world brightens after a realization like that. 

The TC has a creative hour each week, too. I relished these. This was something I could do. I was allowed to write about how I felt, and that I could do. I wrote letters. Letters to my ex-partner in prison. Letters to my four year-old self. To myself. But writing is easy for me. I am challenged to use a different medium. I recoil. I’m less certain of myself in the break times as well, at first. I prefer to go where others aren’t. Hide on my ‘phone. Others might not want me to be hanging out with them, anyway. 

Around ten months into treatment, things start to change, measurably. I have drawn a rose in the creative session. And the rose is in bud, and delicate, but it is growing, and I am beginning to believe that it will bloom. I have started dating. I think I can trust someone else that  much. I am more accepting of the bad bits of me. Some things still get me. Using ableist language is one very quick way to get me riled.  But maybe that’s useful, too, if I can use that anger in a helpful way. 

A few months before I leave, I start applying for jobs again. And I get one, to dovetail with my leaving date from the community. Apart from, as much as I wanted to leave, three months into treatment, I don’t want to leave now. I have made firm, secure attachments to members. They have seen me scream and cry, and they still come back to me. They know the authentic me, and they still seem to want me around. But they encourage positivity in me, too. They are excited that I have a new job, in a new country. A new place to live. They wish me well. And I leave. I am now not allowed to contact them until they are discharged. I miss them, even a couple of months later. And things have been stressful with the job and the move, and I crave the structure of the TC to hold me safely again. I am frightened that I’m going to be no good at being an adult. But I am acknowledging that, rather than hiding at work. TC was tough. Leaving it was heart-rending. I am scared of life beyond its boundaries. But TC has given me the determination to make the most of what I have; to look forward to the future. I believe that the best is yet to come. And I can’t wait to live it. 

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@shadesofsky is certainly worth a follow on twitter.

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

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Product Placement: Out of Sight and Out of Mind

This is jointly written by Keir Harding @keirwales and Hollie @Hoppypelican.  Please stay safe reading this.  It contains descriptions of self harm and restraint and allusions to abuse.

It’s taken a long time for us to put it together but we think its something that needs to be heard.

A story…

She places her hands against the cold window and peers through the grill into the twilit garden; the grill that traps her, obscures her view of the outside world and reinforces her cage.  The reds and pinks of dusk bleed across the manicured lawn; the progression of day to night being the only consistency amidst the chaos she lives within. Along the corridor someone is still screaming.  She knows the staff have tired of it because she hears the shouting and clattering of the care starting.

She remembers arriving; the initial feelings of safety, respite and containment that disintegrated over the days and months.  It was substituted with anxiety and frustration.  Still she wasn’t allowed to leave the cage that exacerbated her distress and eroded her last shreds of hope and resilience.   For a time she’d wanted to die but somewhere lurking in her subconscious was a desire for something to be different.  Even when things were at their darkest; when she’d swallowed down the tablets and knocked back the vodka, even after she’d written the note something inside her wanted to keep her alive.  She phoned for an ambulance even though she felt sick and ashamed. She knew she was wasting resources and she knew she was undeserving, but it took so much to pick up that phone. Utterly overwhelmed by sadness, self-loathing and desperation she sobbed as she told them. Drowsy and nauseous and to a total stranger, she gave away her darkest thoughts.  By the time she’d finished she just wanted to be looked after.  She just wanted someone to care.

When she got to the ward the ‘care’ started.  She told them she wouldn’t try again but they took her shoe laces and belt off her, then her bra. They rifled though her belongings like a Primark sale bin and anything deemed a ‘risk’ was confiscated; no explanation. Every night for years she’d listened to music to keep the worst of the thoughts at bay, but now that she was being cared for her headphones were snatched away, no recommendation of how else to keep out those intrusive barbs.  She was told she’d been silly.  She was told that everything she’d done was just to get attention.  She was told that the bed she had should have been used for someone who needed it. She was told she wasn’t ill, that it was just ‘bad behaviour’. She cried as she tried to shrink into the corner of the room.  The warm, wet tears dropped onto the blanket she’d pulled over her head.  In her mind she shrunk down like Alice in Wonderland and cowered within the Airtex cocoon.  After 15 minutes the blanket was ripped away and she was told she was attention seeking again.  It didn’t feel much like care, but they ‘cared’ for her every 15 minutes until the end of the night. The unlocking door and flash of torch, a reminder 4 times an hour that they were there, ‘caring’, watching and depriving her of sleep, the thing she longed for most.

The day came slowly with a murky light turning the dark into grey.  She’d watched every minute tick by, as between the 15 minute door clanging of the care and the shrieks of the others who were living in some other reality, sleep hadn’t come near her.  The energy of the other patients and the sudden noises frightened her.  This was not being looked after.  This was not what the care was supposed to feel like. She noticed that the other people on the ward seemed to have a very different version of care to what she was receiving. Having gone through life feeling like a pariah, this augmented and reaffirmed everything she believed about herself being different and not belonging in the world.

Conscious of her drooping jeans and laceless shoes she shuffled to the office.  She knocked gently and saw someone in a uniform catch her eye and look away again. This happened often. She knocked once more and waited for someone to come to her.  After she’d waited a while someone came along with a clipboard to give her the 15 minute care.  She explained that she wanted to go home and was told she couldn’t.  She told them that she felt different now, that she didn’t want to die, that she just needed to sleep; she wasn’t getting that here.  They told her she couldn’t go home.  She turned to walk towards the doors. She pulled and yanked at the stupid handle that you have to claw onto, it rattled but didn’t yield. They shouted that she needed to stay.  The doctor needed to see her; they made it clear if she didn’t behave she’d be made to – detained and totally stripped of liberty and dignity.

She felt helpless, like she had so often before.  She felt like a puppet; those in authority directing her moving parts and holding the control, just like before.  She was told that she’d manipulated her way into hospital and was now wasting people’s time.   With her face calm and her heart screaming, she walked to the toilet and wailed a piercing scream that vibrated though her head but didn’t make a sound.  Once again it didn’t matter what she wanted, others would make her do things, once again she didn’t matter, she was worthless and nothing.  She rooted through what was left of her things, biting the little plastic buds off the end of a hair-grip and dragging it down her arm; it brought nothing. She frantically searched for something else and found a lip balm tin.  She didn’t remember taking the lid off and jamming it into the doorframe to bend it and create a point.  She only remembered the noise stopping when she pushed the shard of metal into her leg.  She only felt that the world was right when she treated herself like the piece of shit everyone else had, when she punished herself like she was told she deserved.  She only felt like she had some control again when the pain blotted out everything and the blood let the agony flow away.

Within 15 minutes the toilet door opened, someone shouted “For fuck’s sake” and an alarm started going off.  In the tiny space of the toilet, three men she didn’t know ran towards her.  Just like before, they pinned her arms.  As she thrashed about they pulled her to the floor; she was no longer in hospital, she was transported back to that terrified child again.  She was pushed down, face to the floor, arms held, the backs of knees knelt on. She couldn’t move, couldn’t breathe, and as she fought to escape she felt her trousers being pulled down.  She screamed as loudly now as she had then.  She knew how this would end.  Broken, hurt, degraded. This pain was different.  This time a needle penetrated her buttock and as they held forced her into the floor she felt the wave of numbness wash over her.  Before everything turned to watercolour she heard someone saying that they knew this would happen.

Reality started to creep back as her body thawed but the world around her still felt hazy, like her head was full of candyfloss but no where near as sweet; this was due to the benzos she’d been forced to swallow with a thimble full of water. Made to open her mouth dentist wide and stick her tongue out and up to make sure they’d gone down. She still wanted to leave.  And they still wouldn’t let her.  She explained that she’d be okay.  They told her that people that cut themselves aren’t okay. She told them she’d only done that because they wouldn’t let her leave.  They told her she had to stay until she wasn’t going to kill herself and could keep herself safe.  But she’d thought about suicide every day for the past 4 years.  She’d cut herself carefully, with her special blade every day for 4 years.  How was she going to stop this now?  How was she going to stop it here?

She didn’t stop.  The urge to cut and get some sense of control back became overwhelming.  Without having her blade with her she did what she could to get the same relief but it became harder to do. They watched her.  They followed her.  After she smashed apart the Perspex covered display board and cut with the shards they stayed within arm’s length.  After she ripped her pants apart and tied them around her neck in the toilet she had to piss with the door open; underwear confiscated and hospital paper pants instated.  Every time they did more to ‘care’ for her she had to do something more frantic, more dangerous and with more of a chance of killing her.  Every time she did this, they did more and more to make sure she couldn’t do anything to hurt herself.  Every time she did this, three of them would hold her down, just like the men had when she was young; like them she could feel that they hated her. Every time she cut herself, they reacted as if she was cutting into them.  They couldn’t go on like this…

And they didn’t.  They told her that her personality was disordered and that she needed specialist treatment.  That her reaction to the ‘care’ was inappropriate.  That she needed to go to a specialist unit where she would be treated to get better.  She did not want to go, but to them she was voiceless, she was going, and would probably be gone for a year. Ripped away from everything and anyone she ever knew.

She’s been here 2 years now.   Things aren’t much different.  She can’t cut with anything so she tries to tie things around her neck a lot more.  She never did that when she was at home.  She’s on more medicine which is supposed to help but instead makes her drowsy.  She bothers people less when she’s sleepy.  She’s not got the energy to exercise, which she wants to do because she’s 3 stone heavier than when she arrived.  The specialist treatment she was supposed to get has turned into seeing her nurse 1:1 for an hour once a week, something she got more often at home. These sessions are not tailored to her needs and she is jammed into boxes she does not fit in; square peg, round hole.  She wants to go home but they tell her she isn’t safe.  She needs to stay in the specialist placement.  It doesn’t feel special.  She doesn’t feel special.  She feels likes she’s been forgotten and in a sense she has.  If any of the staff that worked with her previously think of her, they feel relief when they remember cutting the cord from her neck.  They think of their relief when they remember that she’s gone, not their responsibility, not their risk to contain, not their problem.  They never think of the time she looked after herself by phoning an ambulance.  They never remember that the things most likely to kill her began after they started ‘caring’ for her.

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Between us we have worked in  and received mental health services for about 30 years now.  Sadly we have lost count of the number of people who have lived the exact same story we’ve described above.   People get stuck on an acute psychiatric ward and staff believe that the only answer is a specialist placement, even if no therapy or more intensive support has been tried in the community first.  Because “Specialist Unit” is not a protected title and doesn’t come with any accompanying standards, places become such a unit by changing the sign above their door.  People are then compelled to go to these non-specialist ‘specialist placements’ to receive little more than warehousing.  Unsurprisingly things don’t improve.  Unsurprisingly, the promised one year stretches into two or more.  Between a private provider who makes money from people being on their unit, and an NHS team who is afraid something dangerous will happen and they will end up in court, there is no incentive to bring people back home.  The cost to the NHS is extortionate.  The cost to people’s lives is immeasurable.

It’s  World Mental Health Day as we publish this.  On this day, while we think of how it is good to talk and that 1 in 4 of us (at least) will experience mental health problems, let’s try to remember some other people too.   Let us try to remember the people for whom we pay £200,000 a year to keep out of sight and out of mind.  Let us consider whether life at all costs is worth forcing people to live in hell.  Let us ponder whether our care can harm people.   Those who get diagnosed with personality disorder are notoriously excluded from NHS services, either by not being allowed through the door or not being allowed out of one far away.  Recently Norman Lamb spoke of how we value containing people over their human rights.  Certainly it seems better to have them locked away so it looks like we’re keeping them safe, regardless of the evidence and NICE guidance that suggest we should do the opposite.  In a 21st century healthcare system we cannot continue with this way of responding to people who have lived through trauma.  We will not have a 21st century healthcare system if we continue to pay £1,000,000 a year to enforce the safety of 5 people.

Keir and Hollie work  to help organisations avoid the situation described above, via beamconsultancy.co.uk 

Do leave us a comment or catch us on twitter and let us know your thoughts.

Throw Away the Key: An Alternative to Women in Prison?

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

References
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R. D. Rubitel, ed. Containmnet in the Community: Supportive Frameworks fot
Thinking About Antisocial Behaviour and Mental Health. London: Karnac, pp.
45-67.

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England and Wales. http://www.civitas.org.uk/crime/factsheet-Prisons.pdf
accessed 13/04/2015
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Therapeutic Relationships with Offenders: An Introduction to the
Psychodynamics of Mental Health Nursing (Forensic Focus)
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Working Therapeutically with Women in Secure Mental Health Settings
London: Jessica
Corston, J (2007). A report by Baroness Jean Corston of a review of
women with particular vulnerabilities in the Criminal Justice system.
London: Home Office.
De Zulueta, F (2008) From Pain to Violence: The Traumatic Roots of
Destructiveness London: Wiley
Linehan, M. M. (1993) Cognitive Behavioral Treatment of Borderline
Personality Disorder. New York: Guilford.

Low, G., Jones, D., Duggan, C., et al (2001) The treatment of deliberate self-
harm in borderline personality disorder using dialectical behaviour therapy. A
pilot study in a high security hospital. Behavioural and Cognitive
Psychotherapy, 29, 85–92
Motz, A (2014) Toxic Couples: The Psychology of Domestic Violence Hove:
Routledge (Chapter 2: ‘Action Replay: The Intergenerational Transmission of
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Harm: Psychological Perspectives (Chapter 1)
Motz A 2008. The Psychology of Female Violence: Crimes Against the Body
Taylor & Francis, 2008
Farr, M., 2011. Collaboration in public services: can service users and staff
particpate together?. In: M. Barnes & P. Cotterell, eds. Critical perspectives
on user involvement. London: Policy Press.
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Universal Qualities, Therapeutic Communities. Past, Present and Future p.
246-257, (ed.) P Campling and R. Haigh, London and Philadelphia: Jessica
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initiative", Housing, Care and Support, Vol. 15 Iss: 1, pp.34 – 42
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settings (2012) In Harvey J and Smedley K (eds) Psychosocial Therapy in
Prisons and Other Secure Settings. Willan Publishing, Abingdon

Hinshelwood RD (2002) Abusive help– helping abuse: the psychodynamic
impact of severe personality disorder on caring institutions. Crim Behav Ment
Health. 2002;12(2 Suppl):S20-30
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Factors Related to Positive Outcome. [Online]
Available at:
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[Accessed 2nd July 2014].
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imprisonment of women
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Accessed 13/04/2015
Serano, Julia (2007). Whipping Girl: A Transsexual Woman on Sexism and
the Scapegoating of Femininity. Berkeley: Seal Press.
Simpson, E., 2002. Involving service users in the delivery and evaluation of
mental health services: systematic review. BMJ, 325(1265).
Tuck, G & Aiyegbusi, A (2008) ‘Caring Amide Victims and Perpetrators:
Trauma and forensic mental health nursing’ in eds. Gordon, J & Kirtchuk, G
Psychic Assaults and Frightened Clinicians: Countertransference Respo
Welldon, E.V. (1988) Mother Madonna Whore: The Idealisation and
Denigration of Motherhood London: Free Association Books
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Psychoanalytic Approach (Basic Texts in Counselling and Psychotherapy)
Basingstoke: Palgrave Macmillan
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Destructiveness London: Wiley

 

Manipulation & ‘Personality Disorder’ – Dig Deeper

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

Every now and then people are kind enough to respond to some of the things I’ve written with really thoughtful stories, ideas and comments.  I’m sharing this one.  (And feel free to let me know if you’d like me to share what you think, whether it’s complimentary or not).  It’s inspired by my most read post which is also about manipulation.  If you enjoy reading it do let @sarahjaynepalgr know.

“We all manipulate. People who tend to be diagnosed with personality disorder are just particularly bad at it”. Keir Harding (2016)

Manipulation in the context of those diagnosed with personality disorder has negative connotations. Selfish, egotistical, devious, difficult; but those assumptions refer to the intent behind the behaviour. Manipulation is essentially used for survival in whatever form is required. Our children manipulate us all the time if they feel this is necessary to get what they want and depending on how we respond some may learn that this is an effective means of survival. Forming attachments becomes a risky business when a child lacks nurturing and emotional stability. Toxic parenting, neglect, abuse or indifference (intentional or otherwise) teaches a child that human relationships are untrustworthy, painful and disappointing so the negative experience of this will be carried forward into adult life and form the basis for expectations.

Something people diagnosed with PD have in common is a lack of validation of their feelings from an early age. Many have abuse in their history, sustained trauma, complex PTSD. Receiving little or no validation of thoughts and feelings creates insecurity, fear and lack of trust as a child’s personality is forming. When emotional needs are left unmet the message is ‘you are not worthy’. Layered on top of this, any further dysfunction or trauma re-enforces the belief of unworthiness until trust is an unknown feeling. Anyone who lives in fear and cannot trust will continually test any relationship to prove their belief that no-one can be trusted. When we refer to Personality Disorder we are referring to a personality that has ‘disordered’ itself in an attempt to cope with a traumatic reality. A person has an inability to manage emotions as they have learnt their lessons in life through pain and fear not love. When a person is fearful over a sustained period of time (raw fear in a child, anxiety in an adult), the fear internalises and the chemicals in the brain remain in a permanent ‘fight or flight’ response. This heightened state of anxiety causes automatic and extreme responses to stress as any situation can trigger the fear response with no conscious control, hence creating ‘unreasonable’ behaviour which others find difficult.

Very few can empathise without having walked in a person’s shoes, however we can show human compassion and understanding and refrain from judgement. We are all unique in our ability to cope and heal and if a client is triggering you, ask yourself why and what this tells you about yourself; are you are working from your ego or your heart? To label people dismissively as manipulative, difficult or with terms such as ‘it’s behavioural’, is to ignore the core issues where the answers lie. To dismiss the cause of the condition isn’t really treating it at all but does represent the way in which we approach dis-ease in general in our culture.

It’s worth pointing out also that individuals who have had to read the moods and energy of another to stay safe from a young age are very good at sensing when they are being misunderstood or patronised. Staff should be given access to regular training sessions and examine how they manage their own health and emotions to make a positive impact in the life of another. By the time service users get the diagnosis, care plan and treatment they so desperately need it may be at the end of a very long road of confusion and suffering. To engage with staff and form a relationship takes a lot of energy and effort for someone who is crippled with anxiety and afraid of forming attachments. Whilst lack of funding and adequate resources for training can always be an issue, compassion and empathy come from the heart. If we can share this we will improve service and outcomes and enjoy better relationships with those who we have a duty of care towards.

Sarah J Palgrave @sarahjaynepalgr

Views are based on my own experiences
Professional & personal experience in mental health
Reiki & Theta Healing Practitioner

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

 

 

Forgetting inconvenient truths: A way to keep thinking.

January 2018 was an interesting month in the world of what textbooks refer to as Personality Disorder. There was the launch of the Personality Disorder Consensus Statement, an article on Personality Disorder on the BBC and the launch of the Power Threat Meaning Framework. While I haven’t read the full version of the PTFM I have read a lot about it, and there has been a lot to read. The responses were many and mixed. Some of the responses have been vitriolic, others merely critical, and others more celebratory as a high profile way of thinking about mental health and mental health problems leaps into being.

 
Some of the criticisms of the PTMF are articulately laid out here. What I want to do in this blog is lay out a basic version of what the PTMF promotes, why it’s essential that people can take this on board and what might get in the way of making some use of it.

3d doctor
Within traditional psychiatry signs and symptoms that occur together are named as a diagnosis. The PTMF encourages us to shy away from diagnosis and illness and instead explore a person’s difficulties and distress in terms of:
 What happened to you?
 How did it affect you?
 What sense did you make of it?
 What did you have to do to survive?

 
From the questions above we can then discover a narrative around why someone does what they do. We can see how their behaviour makes perfect sense given their previous experiences. In an ideal world we can then think about what might help and at a minimum consider how to avoid replaying some of the person’s most negative experiences.

 
For difficulties such as insomnia the framework might not be that helpful. For other areas I suspect clinicians and service users should use it if they both agree it’s useful. For the people who get labelled with Borderline Personality Disorder this kind of thinking is vital.

 
Why is it vital? There was a time that I didn’t think that it was. I was happy to join in with a roll of the eyes and a “typical PD” comment. I could understand that someone was self-harming because they had a personality disorder. Times when I felt attacked or criticised it was easy to label everything as the product of a disordered personality – this left me as a flawless clinician with merely a faulty patient to contend with.
As the years ticked by my experiences in work got me thinking of people with a diagnosis much more as simply people. My work became about helping staff who thought in the way that I used to, to unpick their ideas and see someone in a more empathic way. What I tended to find was that a list of diagnostic criteria had absolutely no impact in how staff thought about and responded to the people in their care. When we could move away from the descriptive (and fairly judgemental) criteria and think about the experiences that people had lived through that might inform how they behaved, then it felt like some empathy could arise.

 

Two examples:
1 Looking through someone’s notes I read “Mandy went to her room and was self harming due to her diagnosis”. It frustrated me that someone’s thinking could begin and end with that sentence. There was no sense of what was going on in their head. No indication of or curiosity about what they might be feeling. No indication of how people around them responded (apart from the implication that it was dismissed and pathologised). How can we help people if our sole understanding of their behaviour is that they do it because of a particular label?

 
2 I was in a group and someone recounted something that they’d done “because of my BPD”. We spent a decent amount of time exploring how their feelings and responses were entirely appropriate, especially given their early traumatic experiences. The description of overwhelming emotion and the desperate urge to feel something different made a lot more sense and contained more potential for change than “because I’ve got BPD”.

 
It would be easy to say that the above examples are simply people using diagnosis badly. While this is true, there is something that happens in this area of work that means that traumatic histories are forgotten and staff see risky or troubling behaviour purely through the lens of their own experience.

 
“I feel manipulated” = They were manipulating me
“I don’t know why they did that” = They were doing it for attention
She cut herself after ward round = She’s trying to sabotage her discharge

 
To an extent this is understandable (understanding does not mean approval). I was very poorly trained to work with people who had lived through trauma and my understanding is that undergraduate training hasn’t changed significantly. With no knowledge base, the students of today tend to learn from those who also had little training so learned on the job. Combine this with people who cope in ways that can be dangerous (the results of which staff might be blamed for) and you have an environment full of confused, anxious clinicians. This seems to lead to a situation where toxic ideas can flourish with little opportunity for people to learn anything different. A new cycle of treating people as if they were manipulators begins, with people reacting to that hostility and then having their reactions explained by their diagnosis.

 
This doesn’t happen everywhere but it does happen every day. Any tool we can use to stop the thinking shortcuts of “They’re just…” and focus on an empathic understanding of why someone does what they do seems essential for maintaining compassionate care. We can’t validate someone with personality disorder, but we can validate someone whose thoughts feelings and actions make perfect sense given their experience. The PTMF may not be product that means we never use diagnosis again, but let’s not boycott the restaurant because there are a few dishes we don’t like.

 

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

The State of ‘Personality Disorder’ Services in Wales

 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:

  1. How much does the Health Board spend on residential treatment for people diagnosed with a personality disorder?

  2. 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.

Keir Harding provides Training, Consultancy and Therapy around complex mental health problems via www.beamconsultancy.co.uk

A Disorder for Everyone?

Dec 8th 2017

It is too early in the morning, there is a light dusting of snow on the ground, and I’m heading off to Manchester to spend a day dropping the disorder.  A Disorder for Everyone  (#adisorder4everyone) advertises itself as a one day event for a range of staff and service users to discuss critical questions around the biomedical model in health.  My perception of it is that it’s overtly critical of our current system of diagnosis (especially around the term personality disorder) and heavily promotes the idea of formulation and understanding difficulties rather than labelling them.  Less a neutral place to debate but a place with an agenda and a message to impart. This is no bad thing as I’d agree with something that I often hear emanating from the AD4E days, that “Diagnosis obscures peoples stories”, that once something is labelled, it’s an excuse to stop thinking and respond to the label rather than the person.

The event comes at a poignant time.  Earlier in the week I’d lost someone I was relatively close to (as close as you can be to someone you have never met) on twitter to suicide and I was at an event  where her passing was to be acknowledged.  She was almost described as someone who ‘had’ personality disorder and I was glad to be able to point out how much she (and eminent psychiatrists) rejected that label for her presentation, how she felt that it had led to a ‘care’ plan she felt to be brutal and dehumanising and how she saw the label as something that had led to the staff around her acting in a way that was toxic to her.  So in a week where the damage labels can do is on my mind more than usual I was off to find out more.

I need to confess to being a touch apprehensive about going.  When talking about what textbooks describe as ‘personality disorder’ on social media I tend to get a bit of a hard time.  I wonder if it’s because the debate tends to become polarised and I actively try to keep something of a middle ground.  In a polarised debate this means I don’t end up on anyone’s ‘side’ tending to result in me being perceived to be ‘against’ people.  I rarely am and if anything, my views on diagnosis tend to slide more towards the DTD side.  I shall elaborate….

Whenever I’m training people about personality disorder, someone will pretty much always say “I want to know about the signs and symptoms and the different types”.  In many ways, this knowledge is next to useless, but it does help staff feel more competent and competent.  Most days this statement gets a response along the lines of….

There are 10 types of personality disorder.  I’ve worked in a variety of mental health settings for the past 18 years and I have met less that 10 people with a personality disorder diagnosis that isn’t borderline or antisocial.  So – there’s these 10 types, only 2 of them ever get diagnosed.  Something with this system is seriously wrong.

In my experience if you are a woman who self harms, you are getting a BPD diagnosis regardless of whatever else is going on.  Something with this system is seriously wrong.

Research suggests that if you can be diagnosed with one personality disorder, it’s highly likely you’ll meet the criteria for another 2.  That’s 3 personality disorders in all.  So in a system that aims to put people into a neat tidy box so that we know a care pathway, it’s messy because they’re actually in 3 boxes (and probably with some traits in a few others).  Something with this system is seriously wrong.

Let’s take borderline personality disorder in the DSM 5 as an example.  To be given the diagnosis you need to match 5 of the 9 criteria.  Let’s say that my friend Ian and I are on the ward.  He can meet criteria 1-5 and I’ll meet criteria 5-9.  That’s us with the same diagnosis, the same treatment plan, and sharing only one characteristic.  Something with this system is seriously wrong.

Those are the problems within the system, let alone the insult inherent in labelling someone as having a disordered personality.  I can intellectually accept that we all have personality traits, that some of those can cause us difficulties (mine do!) and that if they cause us serious difficulties that could be described as a disorder. The difficulty in this field is that the majority of the people getting this label are those who have lived through experiences of neglect, abandonment and outright abuse.  To then label them as disordered rather than seeing them as having an understandable response to their experiences then seems to be somewhat callous.

Now often, people can’t accept that the ideas above go anywhere near my head at all.  One reason for this is that I work in a personality disorder service.  I’m told that I have an investment in this label and that I have forged a career on the backs of abused women.  I can see a basis for this argument but I’m not sure what the correct response is.  I suspect it’s to jack in my job.  The difficulty I see with that is that systems often struggle with people who get a personality disorder label.  I want to make that better.  I’ve met too many people who come onto wards feeling suicidal and never get let off again.  Ways of coping that would go unnoticed in the community become reasons to detain in hospital and all of a sudden people have been on an acute ward for 6 months, they’re on a range of toxic chemicals, they’re 3 stone heavier and they’re about  to be shipped off to some institution miles from home.  Will this happen less if I stop work?  I suspect not.  Will there be a voice that challenges this trajectory?  Again I suspect not.  I was reading Gary Kasparov’s book last week and he was talking about what to do to combat malaria.  Do you try and help some people now or a lot of people in the future?  Do you make more mosquito nets or do you work on a cure?  I’m making mosquito nets and I want all those working on the cure to succeed.  It doesn’t mean that either of us is the enemy.

So in essence, this is what I a took into the event.  I also took some worries.  If the diagnostic system vanishes, how do newly qualified staff cope?  It took me years to feel confident enough to just look at the difficulties people were experiencing.  Can someone do that fresh from college?  How does that culture change come about?  Painfully I suspect.

Also, what do we do with our accumulated knowledge so far?  Is it useless because it’s built on such a shaky foundation?  With a diagnostic system shattered, will we know ‘what works for what’ anymore?

 

 

So the event is over.  And I survived.  Actually, the apprehension I’d had about attending was totally groundless and while a couple of people recognised me from social media, they couldn’t have been friendlier or more welcoming.  While there was a touch more poetry present than I would normally have the stomach for, it was powerful in its delivery and did what I think all good poetry does, says more with less words.

I’d opted to go to this event rather than other DTD ones as I was keen to hear Lucy Johnston speak and I’d somehow managed to overlook that she actually speaks at all of them.  I was a little bit disappointed, not it the quality of what she said, but because I’d expected there might be something to rail against.  Something that sounded a bit too left field or a bit ‘crazy’.  Instead Lucy gave a critique of diagnosis where there wasn’t anything substantial to push against.  If I’d wanted to be particularly devilish I might have pointed out that the diagnostic criteria she (rightfully) pointed out as being moral judgements did come with the caveat that they needed to cause problems for people for the diagnosis to apply.  Having said that, I’ve seen people detained in hospital for self harm that was only a problem for other people so I might support Lucy’s position about the spirit of how diagnosis is used, if not the letter of it.

In the afternoon Lucy spoke about the value of team formulation.  Again (almost disappointingly) there was little to disagree with.  She described a mechanism to keep teams thinking so that they weren’t overly rejecting or enmeshed.  It made me think of the Knowledge and Understanding framework for Personality Disorder and the Offender Personality Disorder Pathway and how they both (in my experience) aim to challenge labels, offer a understandable and empathic alternative to a diagnosis and “try to keep thinking at all levels in the organisation”.  It also made me think of the NICE guidelines for Borderline Personality Disorder which encourage trusts to set up specialist services to “provide consultation and advice” which in my experience has been a similar “let’s forget about labels and understand what’s going on approach”.  Now the KUF, the OPD and the NICE guidelines are heavily loaded with the PD label, but as they offer a non diagnostic approach is that a price worth paying to get organisations thinking differently?  In systems that are welded to a hierarchical, diagnostic system, are these tools a wedge to get different thinking in?  Many will think not but one of the reasons I often berate Wales for not following NICE guidelines is because without a mechanism in the organisation to promote thinking, people mindlessly (often with good intentions) do what they have always done.   One of the comments about the use of team formulation is that getting a team together to think for an hour costs a lot of money.  It does.  But locking someone in a “specialist” placement for a year costs £200,000 and if formulation stops that happening once then its paid for itself until most of the team have retired.

Jacqui Dillion (Dr Jacqui Dillion no less) finished the day off with a description of her journey through life, services and activism.  It was a captivating talk with far too many people who you might expect to be helpful being outright abusive.  We heard experiences being discounted as illness, emotions being discounted as illness, anger about not being believed discounted as illness and a host of people who should have helped replicating the abuse of the past.  It was this part of the day I found most affecting and it was heartening to hear Jacqui talking of what made life liveable for her again.  Not some magic therapy but someone who would listen, someone who would validate and someone who empathise.  Someone who could give a different perspective to those who told her she was evil and bad.  I’m going to butcher this quote but it was something along the lines of “We are traumatised by relational abuses and we need relationships to get past them”.  For all those on the ward and the CMHT who don’t know how to help I’d urge you to read that sentence again.

Jacqui asked how many people worked in mental health and a bunch of hands shot up.  She told us that you have to be a bit odd to choose to do this.  I tend to agree and I often wonder if what gets labelled as personality disorder is the combination of those who get all their self worth from helping people in distress meeting those who understandably cannot trust those who are supposed to care.  Much to think about…

Having left the event I’d share what one of the delegates voiced with frustration, that this is all just common sense.  It is, but we need to find a way to inject it into systems that run like they have always run and are paralysed by the fear of being blamed.  My only gripe of the day is that there wasn’t much of a chance to interact with the other delegates.  Even if there had been my suspicion is that the event wasn’t populated by senior managers and clinicians from the NHS.  I think people left validated rather than converted but again, this is no bad thing.  We might also have left a bit angry.  ‘Anger is an energy’ was quoted (but not attributed to the Sex Pistols).  I quite like ‘Anger is a gift’ from Rage Against the Machine.  Certainly people left with anger but also with some ideas around how to apply it.

Part of the theme of the day was how labels can stigmatise and stop us seeing people.  We talked a lot about the value of stories, how people are made of stories (not sure I agree, but certainly our perceptions of others are), and how “recovery” was about getting a story that portrayed you as a survivor of adversity rather than someone who was disordered or ill.  We have the power to influence the stories that are told about people and I left today inspired to tell better ones. To tell stories about people, about why difficulties make sense and about ways in which we can help.  I want an alternative to a Daily Mail letter that talks only of illness and tablets, and in the midst of all the evils of the world, I want to tell stories that are full of hope.

I’d heartily recommend attending one of these events and there are details of the next ones here…

For a bit of balance, here is another view around critiquing diagnosis which I found interesting.

www.adisorder4everyone.com

Keir is the Clinical Lead of Beamconsultancy.co.uk and provides Training, Consultation and Therapy around the issues often labelled as Personality Disorder

*Thanks/Curses to @sisaysPSYCHOSIS for pointing out that I don’t know my Sex Pistols from my Public Image Limited.  That will teach me to be so smug.

An Overview of “Personality Disorder”

This is a little collection I put together for the people I was training with the other week.  I’m sure there are loads of gaps so if you think something essential is missing do let me know.  Hope you find it useful.

Personality Disorder services in the UK

The very recent Personality Disorder Consensus Statement

And Personality disorder on the BBC

The idea that people who were labelled as having a personality disorder were part of the core work of mental health services first gained traction in 2003 with the publication of the seminal No Longer A Diagnosis of Exclusion

Doing The Work

This is the Ministry of Justice Guide to working with people with Personality Disorder.  Lots of stats, facts and figures

This is the Guide to working with people diagnosed with personality disorder, written by people who identify with personality disorder.

Stigma

This talks about other ways of thinking of ‘manipulation’ – Why Are People With Personality Disorder So Manipulative?

This brilliantly encapsulates how once we have a picture of what someone is like in our mind, everything they do can be twisted to fit that picture: How Not To Get A Diagnosis of Personality Disorder  

This again highlights the damage a label can do: Testimonial Injustice and Borderline Personality Disorder

The Not So Nice Guidelines for Borderline Personality Disorder.  A bit funny but a bit too accurate.

Safer Care for Patients With Personality Disorder is both a collection of statistics around people with the diagnosis who killed themselves, and a survey of peoples experience of living with the diagnosis.  Best/Worst statistic – Not one of the people who died by suicide was receiving NICE recommended care.

For people who have just been given a diagnosis

This personal account is a good start.  Lots of resources in there. By the excellent Sue Sibbald @BPDFFS

What works? 

This gives an overview of MBT, DBT, TFT and GPM.  GPM is interesting (something similar over here known as “Structured Clinical Management”) as it is delivered by generic workers rather than specialists. 

Schema therapy

Therapeutic Communities – My favourite way of working with people

Dialectical Behaviour Therapy(DBT) – Often described as the only NICE recommended therapy, which it isn’t.

What “should” we do?

NICE Guidelines Self Harm

NICE Borderline Personality Disorder – The personal accounts of people who have been through services are really interesting.  Also gives an overview of different interventions.

NICE Antisocial Personality Disorder

But services might be a bit more like this:

https://recoveryinthebindotorg.files.wordpress.com/2017/07/not-so-nice-full.pdf

What makes the work hard?

The Ailment by Tom Maine This isn’t the best copy but this is an excellent article that describes the impact complexity can have on staff.

This talks about Trauma Informed Care and why ‘what we usually do’ often isn’t helpful. 

With research suggesting up to 78% of people in prison could be diagnosed with personality disorder, here’s some relevant things to read –

The Working With Offenders booklet again.

The Bradley Report – This looks at mental health problems and learning disability within the criminal justice system

The Corston Report – Specifically about Women in criminal justice

Women and Girls at Risk – A heartbreaking read about the disadvantage women face throughout their lives.

 

And finally

https://themainoffenderblog.wordpress.com/

A very articulate account of what it’s like living with BPD

Online resources:

http://www.dbtselfhelp.com/ –  Lots of stuff  to work through – All DBT flavour

Sunday night chats on twitter #BPDChat – Also with a DBT flavour.

Keir Harding provides Training, Consultancy and Therapy around complex mental health problems via www.beamconsultancy.co.uk

Below is a way of talking about complex emotional difficulties without talking labelling them Personality Disorder.

An important area of mental health that is getting increasingly recognised is the way people express various forms of emotional distress. It can cause various behaviours:

People harm themselves, for example by cutting their arms
Drinking unsafe amounts of alcohol
Taking illegal drugs regularly, excessively or irresponsibly
Misusing prescribed medications (or those available over-the-counter at pharmacies)
By impulsive and reckless actions that could have have serious consequences, like driving too fast or having unsafe sex
Chaotic eating patterns – such as bingeing, vomiting, abusing laxatives or continuously eating too much.

In addition, people with these problems often have repeated difficulties in relationships in ways like this:

Never keep friends very long
Cannot hold down a job
Isolated and lonely
Violence in intimate relationships
Over-sensitivity to criticism
Argumentative with people in authority
Feeling very abandoned when left alone or people leave
Unable to cope with making any decisions without help
Often switching between loving and hating family members.

Many people will experience these things at some time during their lives, perhaps in response to stress, but some are severely troubled by many of them for most of their lives. These could be called ‘long-standing emotional problems’, and they often go right back to childhood. In mental health services they are sometimes known by diagnoses like ‘complex needs’, ‘personality disorder’, ‘borderline’ or ‘severe and enduring non-psychotic disorder’.

Although it is not always the case, people with these types of difficulties have usually had difficult childhoods, with adversities like repeated trauma, or physical, emotional or sexual abuse, or neglect and deprivation, or several severe losses and bereavements. On the other hand, some people who suffer very harsh childhoods seem to be somehow ‘protected’ from the long-term psychological damage it can do. Unfortunately, there is no easy way of finding out who will have more problems and who will have less – although research is always being done to help us understand these matters better.

People who suffer in these ways often do so silently, without getting any help and often feeling guilty or ashamed of how they ‘are’. They often do not even know that they have a problem that others have too – and can become very isolated and lonely with it. In fact, these problems are very common, and increasingly recognised. The reason people behave the way they do, and have the difficult relationships they do, is usually to deal with their feelings, and to try and cope with them. But their actions often do not help enough, and they can make matters worse.

Very commonly, the behaviours can be confusing and upsetting, and this is as true for the people themselves as for those around them. This is because there is a lack of information and understanding about how these things arise, unwillingness to think and talk about them, and little knowledge about what can be done to support someone in this sort of emotional turmoil.

Although it is often the easiest route, there is recent research and NICE guidelines which suggest that medication is not usually the best way to deal with these problems. In the NHS, psychological treatment often helps, and this may take different forms. However, short-term ‘quick fix’ treatments and therapies are rarely very much help. Some psychiatric services are good at helping people with these problems, but because the number of people affected has only recently been recognised, many mental health staff do not yet have good training to deal with it.

In this situation, one of the things that can be very helpful is to help people to feel less alone and ‘odd’ – and for this, other people who have suffered similar feelings are usually better than professionals at understanding what it is like.

(This was taken from the Emergence website)

And those are some things that might help you understand whatever personality disorder means and what might help.  Again, if something is missing let me know.

Keir

 Keir Harding provides Training, Consultancy and Therapy around complex mental health problems via www.beamconsultancy.co.uk

Suicide Aint Painless

So its suicide prevention week (or month or day, depending what hashtag is being used at the time) and there is much talk of how to help people who feel suicidal. There are lots of people speaking about never having had any training in this area, and lots of service users saying that the response they have had has been awful. As someone who has been responsible for some awful responses in my career I thought I’d share some ideas around working with suicide. Now I’m not suggesting that this is THE way to work with people who are suicidal, I’m not even saying that it works. What I do find is that having these tools and ways of thinking in my head makes me more confident and capable of working with someone who is telling you they want to die. Do excuse the arrogance and I’m sure there are better ideas out there which I’m eager to hear.

Learning The Hard Way
My big introduction to working with suicidal people came when I started doing duty in the CMHT. We had someone who phoned around once a week to say they had lined up their tablets on the table and were going to take them all. I then took on all the responsibility for keeping then alive and got panicky when they couldn’t assure me they would be alright. Very often the conversation ended with them hanging up because they were so frustrated with me, me calling an ambulance to go to their house and sometimes both. It was in the CMHT that I started to pick up the idea that suicide was someone else’s business. One whiff of suicide and I could free myself from any anxiety around being responsible for them by packing them off to A&E or calling in the crisis team to take them off me. While this solution worked wonders for me, it did little for the service user who would tend to be passed around a range of services and sometimes be sent off to a placement miles from home. This was partly to address their suicidal tendencies and partly to do us the great service of not having to worry about them anymore.
I started thinking differently as a result of working in a day therapeutic community for people with personality disorder who were frequently suicidal. This got me used to staying with people who wanted to die but trusting the group to help, not feeling that I needed to fix it. I went on to do DBT and spent a few years working with highly suicidal people and people who manage their distress in ways that are potentially lethal. I think back to the naive practitioner sitting on duty and hoping the phone wouldn’t ring. In a way, this is a gift that might have helped him be more useful. Again, I’m not saying you have to do this, I’m not saying that it will work, I am saying that the more tools you have in your box the more comfortable you will be. Regardless of the effectiveness, feeling more confident might be enough to keep you going.

“I’m having suicidal thoughts…”

Find out what they are. Asking won’t make it worse.
If they’re being vague, let’s get some clarity – “When you say ‘It won’t matter or I won’t be here’ it makes me think you’re going to kill yourself. Are you?”
What are you going to do?
When are you going to do it?
Often I find that being able to talk about the horror that’s in their mind is enough to reduce their distress.
Once we have the What and When of what’s in someone’s mind we can start working on the Why. If we think about suicide being the solution to a problem, try to understand what the problem is.
Sometimes I will use the words above but something like “Can you help me understand why being dead is appealing?” “What would being dead be better than?” “What is so unbearable at the moment that means being dead would be useful?” can be used. You can probably put it better…
Start building hope – “It sounds like it’s this issue and the thought that nothing will change is what’s behind your decision to die. If that issue could be changed would you feel the same way?”
Give examples of similar situations which have changed (or ask them for some).
Don’t solve the problem for them but try to generate alternative solutions to deal with the issue.
Ask if they have felt this way before and gradually felt differently – “It is worth making a literally life changing decision when you’re feeling a way you don’t always feel?” or “You felt this way x months ago, then had y time where things were bearable. Might you feel differently in a few days like you did last time?”
A desperate one – “You have felt like this for x years. We have been trying to change your life for y time. Can we really undo x amout of problems in y amount of time? Can you give it a bit longer before you make a final decision?”
All the above can make a difference. I suspect it’s less about what you say and more about helping someone feel listened to. If your input finishes there you’ll tend to feel pretty good. If nothing has changed you might want to try some things that make you feel a bit meaner.
Attack their rationale for dying.
“I want to be at peace” – What if the afterlife is worse? Some people believe in hell, what if that’s true? What if those ghosts people report screaming and wailing is what death is all about? “We don’t know what it’s like when we die. There’s no evidence. Taking your own life is a gamble. It’s worth gambling if you’re a lucky person…..Are you a lucky person?” (People often cry at this point)
“They’ll be better off without me” – They will not. Almost everyone I work with has had massive trauma in their lives. I will end up working with them if you kill yourself. You know how you blame yourself for everything? They will do that. Their risk of attempting suicide will more than double if you kill yourself. This hell you’re in now, you will be putting them in that.
It can be helpful to describe the horror of a dead body if there’s a chance people will find them. “Do you want their last memory of you to be your purple body covered in blood and sick? Don’t think you will be falling into a peaceful sleep…”
Alternatively – “Are you going to let them win? After all the suffering they put you through it seems unfair that you’ll be dead with people missing you while they carry on with their lives”
Those bits might make you feel awful but might get you some commitment to stay alive a bit longer.
Once we have some commitment we can start exploring ways to stay alive that keep the service user in charge as much as possible.
Get rid of the means to kill yourself – “There’s a million ways to kill yourself out there and if you’re determined you will do it. Can we get rid of that rope/stash/weapon so that you don’t do something fatal on impulse?” Best for them to do it, good for them do to it with someone, ok for them to give it to you. Try to avoid just taking things.
Make it harder to go – I’ve written you a suicide note – “I wont read it. I’ve deleted it. I won’t let you say goodbye to me.” Get them to delete/dispose of it. They can always write another one.
If you have a good relationship – “I will miss you.” “I come to work to help people and it will destroy me if you kill yourself” OR “I will go to court and someone will criticise every aspect of our work together to make it my fault that you’ve died. In my notes somewhere I’ll have written something wrong or written it too late and I’ll get struck off. I might never be able to do my job again if you do this.” This can sound totally self centred by at some point you might just want to say anything you can to keep someone alive. If they’re set on dying, it’s not as if anything you say can make it worse.
And I’ve never done this but if pushed – “You can die. We are part of Europe and there are places you can go that will help you. I’m asking you not to die today. You can fill out an advance directive refusing treatment. It takes a bit of time but it means you can do it. I’ll be honest and I hope you change your mind during that time but it can be done.”
A few more things I might say are –
“The obvious thing to do is get you into hospital and have people force you to stay safe. My experience is that once someone else is responsible for keeping someone alive, everything they were doing to keep themselves safe up until now goes out of the window. If we can consider the idea that admission could be more dangerous for you, can we think other things that might keep you safe?”
“Admission sounds like a good idea but you often cope by cutting. In hospital they will take away the ways that you normally cope so you’ll be feeling like you do now, but without being able to do what you normally do to cope. Can we think of other ways….”
When offering solutions try to make them fit with their normal life – support from friends, family, call lines, more time with people they trust. A change of environment. Even time in a 24 hour Mcdonalds is time spent around people when it’s harder to act on that urge.
“Feel free to talk to me again” lets people know you’re not dismissing them. I always include a warning that I will be no help at all if they phone five minutes before the office closes.
With all the above I’d add the importance of validating someone’s reasoning. “That makes sense.” “If I felt like that I would want rest.” “I would want that pain to stop.” We don’t agree with their solution but we agree with their problem and can see how they thought dying would help.
Rather than tell people to distract themselves, ask what they’ve tried so far. It can sound really invalidating if we suggest things they’ve already tried. Also try to avoid telling people they’re wrong about how they feel. When someone feels like dying, “But you’re doing so well…” isn’t going to fly. If you really disagree, validate their thinking first before offering a different view.
With all these interactions it’s important to try to be curious. If you feel someone is saying one thing but communicating something else don’t be afraid to say that. I sometimes use the preface “This might sound like I’m trying to trick you or catch you out, but honestly I’m just trying to understand…” which can then lead on to “There’s people who jump under a train and there’s people who have no thoughts about dying at all. I’m thinking that you’re sitting here telling me this and I wonder what that means about how determined you are to die. I’m not saying you don’t want to. I can see how much you’re struggling. Can we think about what it might mean together? Does that sound like I’m not listening?” This can often change a conversation from ‘I’m going to’ to ‘I want to’ and urges are easier to work with than firm plans.
What I often hear service users saying is that they were dismissed, not listened to and abandoned. In my experience you can agree solutions that are massively different from what the service user wanted when they walked through the door if they feel you are interested and care. Not admitting someone on the back of a sound rationale which relates to their past/current services can be much more acceptable than “Your notes say admission isn’t helpful”.
Sometimes someone’s desire to die is so acute they might need to be protected from themselves. This is always my least favourite option but short term and with people you don’t know it might be your only one. My gut instinct is for the admission to be short term and that time used to assess and formulate rather than just warehouse. The decisions we make when we understand might be significantly different to those we have to make when caught by surprise.
And I think (to inappropriately use a military expression) those might be all the weapons in my arsenal. Remember that these are tools to use when the service user is on the phone or right in front of you and you’re caught by surprise. There is no substitute for assessing/formulating risk beforehand so that you can act as if this is the 10th time they have been in this situation rather than make all your decisions as if it’s the first time it has ever happened. You will feel more comfortable if you have a plan that the service user has co-produced beforehand. If there’s lots of positive risk (and in hindsight anything other than infantilising, detaining and restricting will be labelled reckless) get senior clinicians and the service user to give the plan their blessing.
I hope this is useful. I think it might have been useful to me when I qualified. Any extra tips and tricks be sure to comment at the bottom. I know I can always learn new things and you never know, it might just save a life. Again, excuse the arrogance of writing something that might be a bit (a lot) patronising but honestly, it’s a genuine response to people saying they felt stuck. Looking forward to hearing your thoughts.

@keirwales660265

Suicide Ain’t Painless

So its suicide prevention week…

An added bit – Sept 11th 2019

After sharing this on twitter yesterday I got a lot of feedback.  It was mostly very positive but there were some really valid critiques too.  Perhaps the biggest message is that validation and empathy is your most effective tool.  I totally agree with this and spending time with someone in a thoughtful and empathic manner often changes the narrative of a conversation about death.

Some people were aghast at some of the ways I was suggesting we might talk to people.  What I will emphasise is that the suggestions I’ve used here are not your starting point – they’re what you use when you think someone is genuinely going to die.  There was some feedback that using some of these could cause people to kill themselves but I can’t quite get my head around that concept.  If you’re convinced someone is going to die I don’t think there’s anything you can say to make that worse.  What I will say is that I’m not right about about most things so pay attention to people with lived experience who say this is not the way to go.

Finally there were a couple of other additions.  I can’t get behind being more supportive of people taking their own lives but it was a suggestion.  Another was to talk about suicide as an illness that is trying to kill you.  I’m really uncomfortable with that but….if I knew someone thought of their difficulties in that way then I’d use it.  Whatever works in that moment.

I’m hoping someone will write a piece refuting everything below and giving clinicians some really clear ideas around how to be helpful.  Remember to start gently first though. In the ER staff will generally begin with a conversation but in an emergency they’ll crack your chest open.  Let’s not start with that, but don’t be afraid to use what you can to keep the people you care for alive.  You’re more likely to regret the things you didn’t say.

This job is not easy.  Working with people who’s job this is is not easy.  Lets all do our best

______________________

So its suicide prevention week (or month or day, depending what hashtag is being used at the time) and there is much talk of how to help people who feel suicidal. There are lots of people speaking about never having had any training in this area, and lots of service users saying that the response they have had has been awful. As someone who has been responsible for some awful responses in my career I thought I’d share some ideas around working with suicide. Now I’m not suggesting that this is THE way to work with people who are suicidal, I’m not even saying that it works. What I do find is that having these tools and ways of thinking in my head makes me more confident and capable of working with someone who is telling you they want to die. Do excuse the arrogance and I’m sure there are better ideas out there which I’m eager to hear.

Learning The Hard Way
My big introduction to working with suicidal people came when I started doing duty in the CMHT. We had someone who phoned around once a week to say they had lined up their tablets on the table and were going to take them all. I then took on all the responsibility for keeping then alive and got panicky when they couldn’t assure me they would be alright. Very often the conversation ended with them hanging up because they were so frustrated with me, me calling an ambulance to go to their house and sometimes both. It was in the CMHT that I started to pick up the idea that suicide was someone else’s business. One whiff of suicide and I could free myself from any anxiety around being responsible for them by packing them off to A&E or calling in the crisis team to take them off me. While this solution worked wonders for me, it did little for the service user who would tend to be passed around a range of services and sometimes be sent off to a placement miles from home. This was partly to address their suicidal tendencies and partly to do us the great service of not having to worry about them anymore.
I started thinking differently as a result of working in a day therapeutic community for people with personality disorder who were frequently suicidal. This got me used to staying with people who wanted to die but trusting the group to help, not feeling that I needed to fix it. I went on to do DBT and spent a few years working with highly suicidal people and people who manage their distress in ways that are potentially lethal. I think back to the naive practitioner sitting on duty and hoping the phone wouldn’t ring. In a way, this is a gift that might have helped him be more useful. Again, I’m not saying you have to do this, I’m not saying that it will work, I am saying that the more tools you have in your box the more comfortable you will be. Regardless of the effectiveness, feeling more confident might be enough to keep you going.

“I’m having suicidal thoughts…”

Find out what they are. Asking won’t make it worse.
If they’re being vague, let’s get some clarity – “When you say ‘It won’t matter or I won’t be here’ it makes me think you’re going to kill yourself. Are you?”
What are you going to do?
When are you going to do it?
Often I find that being able to talk about the horror that’s in their mind is enough to reduce their distress.
Once we have the What and When of what’s in someone’s mind we can start working on the Why. If we think about suicide being the solution to a problem, try to understand what the problem is.
Sometimes I will use the words above but something like “Can you help me understand why being dead is appealing?” “What would being dead be better than?” “What is so unbearable at the moment that means being dead would be useful?” can be used. You can probably put it better…
Start building hope – “It sounds like it’s this issue and the thought that nothing will change is what’s behind your decision to die. If that issue could be changed would you feel the same way?”
Give examples of similar situations which have changed (or ask them for some).
Don’t solve the problem for them but try to generate alternative solutions to deal with the issue.
Ask if they have felt this way before and gradually felt differently – “It is worth making a literally life changing decision when you’re feeling a way you don’t always feel?” or “You felt this way x months ago, then had y time where things were bearable. Might you feel differently in a few days like you did last time?”
A desperate one – “You have felt like this for x years. We have been trying to change your life for y time. Can we really undo x amout of problems in y amount of time? Can you give it a bit longer before you make a final decision?”
All the above can make a difference. I suspect it’s less about what you say and more about helping someone feel listened to. If your input finishes there you’ll tend to feel pretty good. If nothing has changed you might want to try some things that make you feel a bit meaner.
Attack their rationale for dying.
“I want to be at peace” – What if the afterlife is worse? Some people believe in hell, what if that’s true? What if those ghosts people report screaming and wailing is what death is all about? “We don’t know what it’s like when we die. There’s no evidence. Taking your own life is a gamble. It’s worth gambling if you’re a lucky person…..Are you a lucky person?” (People often cry at this point)
“They’ll be better off without me” – They will not. Almost everyone I work with has had massive trauma in their lives. I will end up working with them if you kill yourself. You know how you blame yourself for everything? They will do that. Their risk of attempting suicide will more than double if you kill yourself. This hell you’re in now, you will be putting them in that.
It can be helpful to describe the horror of a dead body if there’s a chance people will find them. “Do you want their last memory of you to be your purple body covered in blood and sick? Don’t think you will be falling into a peaceful sleep…”
Alternatively – “Are you going to let them win? After all the suffering they put you through it seems unfair that you’ll be dead with people missing you while they carry on with their lives”
Those bits might make you feel awful but might get you some commitment to stay alive a bit longer.
Once we have some commitment we can start exploring ways to stay alive that keep the service user in charge as much as possible.
Get rid of the means to kill yourself – “There’s a million ways to kill yourself out there and if you’re determined you will do it. Can we get rid of that rope/stash/weapon so that you don’t do something fatal on impulse?” Best for them to do it, good for them do to it with someone, ok for them to give it to you. Try to avoid just taking things.
Make it harder to go – I’ve written you a suicide note – “I wont read it. I’ve deleted it. I won’t let you say goodbye to me.” Get them to delete/dispose of it. They can always write another one.
If you have a good relationship – “I will miss you.” “I come to work to help people and it will destroy me if you kill yourself” OR “I will go to court and someone will criticise every aspect of our work together to make it my fault that you’ve died. In my notes somewhere I’ll have written something wrong or written it too late and I’ll get struck off. I might never be able to do my job again if you do this.” This can sound totally self centred by at some point you might just want to say anything you can to keep someone alive. If they’re set on dying, it’s not as if anything you say can make it worse.
And I’ve never done this but if pushed – “You can die. We are part of Europe and there are places you can go that will help you. I’m asking you not to die today. You can fill out an advance directive refusing treatment. It takes a bit of time but it means you can do it. I’ll be honest and I hope you change your mind during that time but it can be done.”
A few more things I might say are –
“The obvious thing to do is get you into hospital and have people force you to stay safe. My experience is that once someone else is responsible for keeping someone alive, everything they were doing to keep themselves safe up until now goes out of the window. If we can consider the idea that admission could be more dangerous for you, can we think other things that might keep you safe?”
“Admission sounds like a good idea but you often cope by cutting. In hospital they will take away the ways that you normally cope so you’ll be feeling like you do now, but without being able to do what you normally do to cope. Can we think of other ways….”
When offering solutions try to make them fit with their normal life – support from friends, family, call lines, more time with people they trust. A change of environment. Even time in a 24 hour Mcdonalds is time spent around people when it’s harder to act on that urge.
“Feel free to talk to me again” lets people know you’re not dismissing them. I always include a warning that I will be no help at all if they phone five minutes before the office closes.
With all the above I’d add the importance of validating someone’s reasoning. “That makes sense.” “If I felt like that I would want rest.” “I would want that pain to stop.” We don’t agree with their solution but we agree with their problem and can see how they thought dying would help.
Rather than tell people to distract themselves, ask what they’ve tried so far. It can sound really invalidating if we suggest things they’ve already tried. Also try to avoid telling people they’re wrong about how they feel. When someone feels like dying, “But you’re doing so well…” isn’t going to fly. If you really disagree, validate their thinking first before offering a different view.
With all these interactions it’s important to try to be curious. If you feel someone is saying one thing but communicating something else don’t be afraid to say that. I sometimes use the preface “This might sound like I’m trying to trick you or catch you out, but honestly I’m just trying to understand…” which can then lead on to “There’s people who jump under a train and there’s people who have no thoughts about dying at all. I’m thinking that you’re sitting here telling me this and I wonder what that means about how determined you are to die. I’m not saying you don’t want to. I can see how much you’re struggling. Can we think about what it might mean together? Does that sound like I’m not listening?” This can often change a conversation from ‘I’m going to’ to ‘I want to’ and urges are easier to work with than firm plans.
What I often hear service users saying is that they were dismissed, not listened to and abandoned. In my experience you can agree solutions that are massively different from what the service user wanted when they walked through the door if they feel you are interested and care. Not admitting someone on the back of a sound rationale which relates to their past/current services can be much more acceptable than “Your notes say admission isn’t helpful”.
Sometimes someone’s desire to die is so acute they might need to be protected from themselves. This is always my least favourite option but short term and with people you don’t know it might be your only one. My gut instinct is for the admission to be short term and that time used to assess and formulate rather than just warehouse. The decisions we make when we understand might be significantly different to those we have to make when caught by surprise.
And I think (to inappropriately use a military expression) those might be all the weapons in my arsenal. Remember that these are tools to use when the service user is on the phone or right in front of you and you’re caught by surprise. There is no substitute for assessing/formulating risk beforehand so that you can act as if this is the 10th time they have been in this situation rather than make all your decisions as if it’s the first time it has ever happened. You will feel more comfortable if you have a plan that the service user has co-produced beforehand. If there’s lots of positive risk (and in hindsight anything other than infantilising, detaining and restricting will be labelled reckless) get senior clinicians and the service user to give the plan their blessing.
I hope this is useful. I think it might have been useful to me when I qualified. Any extra tips and tricks be sure to comment at the bottom. I know I can always learn new things and you never know, it might just save a life. Again, excuse the arrogance of writing something that might be a bit (a lot) patronising but honestly, it’s a genuine response to people saying they felt stuck. Looking forward to hearing your thoughts.  @keirwales

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