A weird thing happened the other week. I’d just been to an Occupational Therapy conference and because I had saturated twitter with posts about what had been going on I ended up in a conversation around how Occupational Therapy had really benefited people. I encouraged them to write down what had been helpful them. I thought very little of this until lo and behold this turned up in my inbox. Most OT’s will find this a fairly interesting read.
Just to introduce Ellie, she is someone I met at the British and Irish Group for the Study of Personality Disorder annul conference in Cardiff last year. She ended up being highly commended for her poster “The Impact of Activity and Occupation on Borderline Personality Disorder”. She’s a big advocate for OT and at some point I hope she becomes one. Enjoy her tale….
3 years ago I was a very lost young woman. I was sectioned in an acute psychiatric ward for the 5th time after years of BPD and an eating disorder slowly dragging my life away from me. My daily routine consisted of spending the nights in A&E getting stitched up after self harm, coming back home in the early hours, sleeping in the day, self harming again in the evening, back to A&E and so the cycle continued…sometimes with the occasional break of an overdose or suicide attempt and sometimes with the addition of multiple trips to A&E in a day. I was admitted to A&E over 200 times in less than a year.
But something about this admission was different to the last. As someone who is pretty dam intelligent (if I do say so myself), acute wards are pretty dangerous for me as I get very bored and spend my hours conjuring up inventive ways to hurt myself. So generally, acute admissions had brought no benefit apart from new self-harm methods. However, the big difference with this admission is that the ward that I was on had double doors at one end that led straight through to the OT department. And this is where the first glimpses of healing began. Here there were things to do, things to keep my mind and my hands occupied, I could make my own meals (which helped with my eating disorder), the staff had more time to chat to me and help me process my situation than the staff on the ward that were rushed off their feed with medications and observations. I was also more willing to talk, its easier to chat to someone whilst you’re doing another task – rather than artificially sitting opposite someone in a chair in a box room with no windows. Entries in the notes from around that time show that I was considered “complex”, “a disruptive influence on the ward” and someone who would be in the system a long time. However when I speak to the staff in that OT department from that time they don’t recall that side of me. I was like a totally different person once I went through those double doors. Here I was celebrated for who I am, staff encouraged me to teach other people to hoop (my favourite hobby), to write poems and explore art, to have a go at yoga and spend time outside. This also coincided with me coming off all my medication which after years on antipsychotics meant that I suddenly had a clearer head and could actually engage with these things rather than just going through the motions. I was starting to FEEL again.
One day, the lead OT asked me if I would like to come and sit on the Therapeutic Activities Development Group as a service user representative. He felt that I had a lot to contribute to ideas for activities in the inpatient areas of the mental health trust. The first meeting was a fortnight after I was discharged from hospital. I hadn’t got out of bed or washed in over a week, I vividly remember turning up still with pyjama bottoms on and steristrips on my face. I didn’t want to go, I was anxious about being the only service user in the room and having nothing to contribute. But to my surprise I had a really positive reception and professionals were turning round to me and asking my opinion and valuing my input. I walked out of that meeting and went home and had a shower and changed my clothes and felt a glimmer of hope that maybe there was something I could do in the world.
I was admitted to a specialist unit in a different city for a year after that, which changed my life, but all through it I worked remotely on tasks for the group and returned to Sheffield for monthly meetings if I was able. Part way through the year I was asked if I would like to start volunteering in the OT department on the ward – gathering service-user feedback about activity provision and just generally helping out. It meant that I had something to work towards and keep well for on my return to Sheffield – a city where I had been living a dysfunctional life for so long previously.
Fast forward a further 2 years and I can’t believe how far I’ve come since attending a once-monthly meeting in my pyjamas! I spent a year volunteering in OT on the ward, and during that time I learnt so much, got opportunities to present what I was doing to the rest of the trust and this lead to further people being interested in getting me involved. I started to deliver trainings on mental health to police officers, A&E staff, telling my story to people on induction to our trust, running workshops and attending conferences. My life is full of hobbies and activity (I roller skate in skate parks and take part in other circus activities) From one person believing in me and the power of having an occupation on someone’s recovery – even though they are very unwell – I am now employed by the trust, using my lived experience in my role as patient ambassador in medical education and research. I still volunteer and I still speak about my experiences and advocate for the impact of occupation and activity on recovery. I even wrote a poster presentation on the topic which came highly commended at BIGSPD 2018 which was a huge boost to my confidence and also helped me get where I am today.
My 2 years since returning to Sheffield have not been great in my personal life – I have battled with homelessness, fighting for care, a lot of issues with services (some of which have been quite frankly traumatic) not resolving certain unmet needs that are still impacting on my life significantly and it has been incredibly hard to keep going. But one of the reasons I have been able to soldier on is that now I have a purpose and a value in my existence. I’m appreciated for what I bring to the table in mental health in the city and for speaking out about my experiences. I have a future ahead of me and a whole new potential career path I would have never envisaged. And if that doesn’t end up working out then I’d actually love to become an OT. I’ve learnt to put the bad stuff that has happened to me to good use and for the first time I am excited about the future. And I honestly don’t think it would have been possible if it wasn’t for that OT department believing in me and encouraging me when I was in my darkest times. Occupation and activity is my medicine and it is what keeps me alive every day.
It is February 6th and this auspicious day brings together 2 great celebrations.Firstly it is #TimeToTalk day and secondly it is Harry Potter Book Night.At first glance there is no obvious connection but….lets take a close look.
Time to talk day “is all about bringing together the right ingredients, to have a conversation about mental health”.Last year I wrote a piece about the value of talking – not so much going to services and asking for help, but sharing some of the burden that we carry with those around us.I took a bit of flack for writing it, partly because I think I lost sight of the privileged position I inhabit – I’ve led a life that has given me the conviction that I’m worth something, and I know that there are people around me who are interested in me and want to help.It is a lot harder for people who haven’t had these gifts and I know full well that getting help isn’t as simple as asking for it.What I wanted to get across last year is the relief that can come from sharing your worries with people.
I work in a therapeutic community and for all the times I’ve seen people struggle with something that ‘cant be said’, not once have I seen people experience anything like the rejection they expected.Equally in my own life, the things that I thought were too hideous to be unveiled seemed to lose a few warts when brought into the light.Too many people will kill themselves without ever sharing any of their despair and I’d urge everyone to try to make an effort to make mental health (or ill health) something that can be talked about.That might mean taking a risk and sharing something with people you trust, more importantly it might mean letting the people you care about know that that conversation would be ok.
So this is all very worthy, but what does this have to do with Harry Potter?I loved the Harry Potter books and my children are now picking up my old books to follow the adventures of the hero of the wizarding world.Harry has a range of people who care for him and he inspires them to be a force of good in their lives.
My experience of the world tells me that Harry is in a relatively unique position.His parents died in his infancy and he was placed in the care of the pantomime villain-like Dursley family.He spends the first 11 years of his life living in a cupboard under the stairs.He is treated like a servant by the adults and bullied by his stronger, bigger cousin.For 11 years he is constantly criticised, belittled and told that everything is his fault.He is punished for trivial misdemeanours by being locked in the cupboard.His birthday is never marked and his clothes are the massive hand me downs of his larger cousin.We might imagine this leads to further bullying in school.These tend not to be the ingredients for a charismatic leader.
I work with a number of people who have had similar childhoods to Harry.They didn’t go to school and make friends, instead they went to school feeling utterly worthless and fully deserving of any mistreatment doled out to them.Their relationships with their peers and teachers were shaped by their core belief that they were insignificant, that no one would be interested in them, and that any interest that was shown was only to humiliate them more later.The self hatred they experienced led to them acting as if they were deserving of hate.They would hurt themselves or let others hurt or use them.Their experience of others led them to believe that they shouldn’t be in the world.Sometimes they sought death but even in the best of times (which were few) death wasn’t something to run away from.Sometimes they would connect with another person but their conviction that they were unlovable led them to acting as if that was true.It could also lead to them spending time with people who treated them like they thought they should be treated, because care and kindness felt too wrong. They often end up with a diagnosis that labels them as being flawed in some way when all they have done is learn what the world has taught them.
Harry made friends in his first year of senior school.He also found adults who cared for him and one in particular who became something of a father figure.At the end of the first school year this father figure sent him back to the people who kept him in a cupboard.The argument was that it stopped him from being killed.The reality would probably be that he would end up wanting to die.
We cant expect little Harrys to tell us about their misery and neglect.It’s more than likely that theywon’t know any different.We need to keep our eyes out for the children who are continuously sad, the children who are never made to feel special and who are dressed in ways that could only bring humiliation.When we see such things, it time to talk. When little Harry’s are talked of as being disordered, its time to talk. When there is no help for people like Harry, or the help only makes things worse, it might be time to shout.
Thanks to @hoppypelican for helping me shape the ideas for this blog.
One of my favourite ways of helping people is the day therapeutic community. I got a chance to work in one around 2010, a time when I held (pretty tightly) some of the more stigmatising views people express when talking about ‘personality disorder’. I joined for a year and left most unwillingly after 2 and a half. I spent 5 hours on a Monday in a group being genuine with people. I worked with experts by experience and saw those who I’d thought of as being manipulative and attention seeking being brutally honest and utterly self sacrificing. Aside from the change the group made in me, I saw people who had been on the verge of death from self injury move into lives where they could care for themselves and allow others to love them. It was a powerful transformational learning experience for me and it is with much pain and despondency that I see this way of working move into the shadows, eclipsed by DBT and other 3 letter therapies. In a world where services for those who hurt themselves tend to be easily forgotten or overlooked, 2 of the day therapeutic communities I was part of either won or were the only mental health team shortlisted for the NHS Wales awards. Both these services have now closed and it feels palpably ironic that services can be both celebrated and praised for their excellence while also marginalised and unsupported. Perhaps one of the reasons people find therapeutic communities hard to support is that they are difficult to understand. The lack of direction can be uncomfortable. The idea of patients having full control of their group can be terrifying – especially to organisations that try to eliminate risk. In many ways the only way to understand how a TC works is to see it. In the world of social media I’ve always hoped for someone to write an account of their time in a TC to give people an indication of what it feels like. When I voiced this on twitter one day the marvellously articulate @shadesofsky offered to write that very piece. A few months later here it is, a powerful account of what a TC can feel like. I hope people read this and think of TCs as an option. I hope commissioners and clinicians read this and remember that recovery isn’t only spelled DBT. I hope people can remember that the NICE guidelines say we need to give people a choice. Finally, I hope you enjoy reading this as much as I did.
It’s 4pm on a rainy Tuesday afternoon. I’m a member of a Democratic Therapeutic Community for people diagnosed with Personality Disorders. I’m sitting, curled tight on a sofa that’s nearly collapsed in on itself, trying not to do the same. My knees held fast against my chest, my hands are tearing at my hair.
I want out.I thought that this was one place I was understood, but I was wrong, wrong, wrong. I am always wrong. I myself, am wrong. I want out.
I am crying, hard. I’ve left the community meeting in despair again. Run away, because someone said something that I couldn’t handle. I don’t like it here. My anger is too intense. I can’t stand conflict. I am too full of anger. The whole community hates me. I am too messed up to be put right. I need to leave.
It’s 4pm on a rainy Tuesday afternoon, 15 months and 500 miles away from that Tuesday afternoon. I am remembering what I used to be like, when I was starting out treatment. Even after spending 12 months in the preparatory group, I was still a crumbling wreck. Brittle, the psychiatrist said. I would snap at the slightest thing. Cry. Self-harm. Stop eating. Nothing – not courses of CBT, years of counselling, exercise, book prescriptions – nor medication had worked to change my mental health. I was volatile and lonely, with a self-esteem on the floor. Not that you’d know that from the outside. When I started in the TC, I worked multiple jobs, more than full-time hours, teaching; researching. Striving. Pretending to the world that all was OK. Trying to run faster than the emotional maelstrom baying at me, without success.For the past few years, life outside work had been getting messier. And I was terrified that I wouldn’t be accepted in the TC. I had never belonged anywhere.
The TC, (group therapy for 15 hours a week) had offered yet another treatment option. Therapists from different health backgrounds, work with service users, as equal members of the community. Each member joins via a case conference which identifies the things that they would like to change in therapy, for a period of 18 months. I was voted in unanimously. I wanted to work on trusting others; on kindling a sense of self-worth, on handling conflict without falling apart. And on not needing to work so hard. But a few months in, I was crying more, breaking down more often. I had returned to the self-harm, that I’d been obliged to stop for a period of four weeks, as a condition of entry to the community. I felt intensely disliked. I was utterly unlovable: rotten to the core, my inner voice whispered. I’d given up working many of the hours I was doing. But I felt more depleted than ever. And I still felt rubbish.
The community held me to account for my walk-out. I had to explain what had led me to leave; how I felt; what could stop that happening again. I had to face the reality of how getting overwhelmingly distressed and leaving the group had left others feeling. It was not comfortable. It left me feeling like I wanted to leave for good. But I didn’t. I kept going back because people would notice if you weren’t there. I went to group after group after group, day after day.
TCs are set up to work like a microcosm of life outside. So, the idea is that with a small number of therapists and service users, each person will end up re-enacting the patterns of interaction that they use outside. And, within the boundaries of the TC, those patterns are examined and reflected upon, and changed.There are endless boundaries in a TC. Twelve months into treatment, I was still discovering them. But I like structure and routine. After breaking the rule around no self-harm, I was put on a contract “to not cut”: and haven’t broken it since. The strict timings of opening and closing community meetings, the definite rules around contact with community members, the accountability for my actions, were keeping me contained. I struggled against flexibility; around times when the boundaries were deliberately broken – even by therapists – times that left me feeling like a small, lost child again.
Held by the boundaries, a few months into treatment, I was beginning to open up. Each week, the TC divided in half for “small group” – a time to test thoughts with a smaller number of people, look at events that had happened that week in more detail, or to share something new with the group. The feedback here was also painful. I was prickly, clipped, even condescending at times. I worked hard with the group to explore reasons for that. I was encouraged to take responsibility for the way I was acting – but not to blame myself for it, either. There was a reason – perhaps a wound that I was protecting – that was beyond my conscious experience – and that was driving my behaviour. The more I understood my knee-jerk reactions, the better position I was in not to resort to them.
TCs don’t just consider interactions in the present. They consider their history, too. One way of doing that, in the TC I was a part of was psychodrama. Acting out the past. One time, I was nine years old, on the playground again. S — was standing in front of me, with J— and B— beside her. J—‘s family don’t want to buy a copy of the school class photo’. That was my fault, because it’s not a class photo’ because I’m in it, and I was not supposed to be in that class. I was in the wrong class. In the days before PhotoShop, S— and J— wished that they could scratch me out of it. So do I. I wished I could erase myself completely from everybody’s lives. Everyone hated me. Even my teacher standing less than a foot away didn’t respond as the slap S–struck across my face echoed over the playground. The whole world hated me. In the psychodrama, I fight tears, fight for control, as this scene is laid before me. I must stay in control. I must not cry. I am not nine years old. S— is not about to hit me for calling her a name, in despair because nothing else has made her stop. I’m OK. Really. I’m OK. The echoes of my present thought patterns are there. Surely, I’ve processed stuff that happened over 20 years ago. It wasn’t not your fault, S —. You were nine. The adults let you down.So the therapist says.The TC offer a different perspective on the past.I have to work hard to believe that what happened when I was a child was not my fault.
We spend time each week going through the Structured Clinical Interview for Diagnosis II. Each and every trait of personality disorder. And conduct disorder. We work as a group, reflecting whether we think we have the trait, and get feedback from the rest of the TC. As expected, I meet the criteria for EUPD. But I also meet the traits for Avoidant Personality Disorder, too. I intensely fear rejection. I am scared to let people in, unless I can be certain that I will be liked. So I distance myself instead, most of the time. It’s safer that way. I have some fairly rigid thinking, too. I like boundaries: I find flexible interpretations of the rules harder to bear.Knowing the traits is useful.
In Objectives (PsychEducation by another name) we go through model after model to try to explain our distress. I consciously try to apply my experiences to each one, to make some kind of sense of the mess. Radical acceptance, concepts from DBT, help me most. Seeing each emotion as a guest at your house. Trying not to slam the door on it, but to invite it in, instead, to get to know it better.Mentalising, too. Thinking of all the other reasons why that person didn’t reply to my message, that aren’t about them not really wanting to be my friend. The world brightens after a realization like that.
The TC has a creative hour each week, too. I relished these. This was something I could do. I was allowed to write about how I felt, and that I could do. I wrote letters. Letters to my ex-partner in prison. Letters to my four year-old self. To myself. But writing is easy for me. I am challenged to use a different medium. I recoil. I’m less certain of myself in the break times as well, at first. I prefer to go where others aren’t. Hide on my ‘phone. Others might not want me to be hanging out with them, anyway.
Around ten months into treatment, things start to change, measurably. I have drawn a rose in the creative session. And the rose is in bud, and delicate, but it is growing, and I am beginning to believe that it will bloom. I have started dating. I think I can trust someone else that much. I am more accepting of the bad bits of me. Some things still get me. Using ableist language is one very quick way to get me riled.But maybe that’s useful, too, if I can use that anger in a helpful way.
A few months before I leave, I start applying for jobs again. And I get one, to dovetail with my leaving date from the community. Apart from, as much as I wanted to leave, three months into treatment, I don’t want to leave now. I have made firm, secure attachments to members. They have seen me scream and cry, and they still come back to me. They know the authentic me, and they still seem to want me around. But they encourage positivity in me, too. They are excited that I have a new job, in a new country. A new place to live. They wish me well. And I leave. I am now not allowed to contact them until they are discharged. I miss them, even a couple of months later. And things have been stressful with the job and the move, and I crave the structure of the TC to hold me safely again. I am frightened that I’m going to be no good at being an adult. But I am acknowledging that, rather than hiding at work. TC was tough. Leaving it was heart-rending. I am scared of life beyond its boundaries. But TC has given me the determination to make the most of what I have; to look forward to the future. I believe that the best is yet to come. And I can’t wait to live it.
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.
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.
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 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
Adshead,G. (2004) More alike than different. In WorkingTherapeutically
withWomen in Secure Mental Health Settings (eds N. Jeffcote & T.Watson).
London: Jessica Kingsley.
Barrett, J (2011). Sustainable organisations in health and social care. In: A. &.
R. D. Rubitel, ed. Containmnet in the Community: Supportive Frameworks fot
Thinking About Antisocial Behaviour and Mental Health. London: Karnac, pp.
CIVITAS Institute of the Study of Civil Society (2010) Factsheet- Prisons in
England and Wales. http://www.civitas.org.uk/crime/factsheet-Prisons.pdf
Adshead, G (2004) ‘More Alike than Different’, in (ed) Aiyegbusi, A
Therapeutic Relationships with Offenders: An Introduction to the
Psychodynamics of Mental Health Nursing (Forensic Focus)
Aiyegbusi, A (2004) ‘Thinking Under Fire’ in eds Jeffcote, N & Watson, T
Working Therapeutically with Women in Secure Mental Health Settings
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
Motz, A (2009) ‘Self-harm as a Sign of Hope’ in Motz, A (ed) Managing Self-
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.
Haigh, R. (1999) The Quintessence of a Therapeutic Environment. Five
Universal Qualities, Therapeutic Communities. Past, Present and Future p.
246-257, (ed.) P Campling and R. Haigh, London and Philadelphia: Jessica
Haigh , R, Harrison , M, Johnson , R Paget , S Williams ,S (2012)
"Psychologically informed environments and the “Enabling Environments”
initiative", Housing, Care and Support, Vol. 15 Iss: 1, pp.34 – 42
Harrison A. (1998). A harmful procedure. Nursing Times, 94, 36–38
Pearson J Therapeutic practice with women in prisons and othersecure
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
Pearce, S. & Pickard, H., 2012. How Therapeutic Communities Work: Specific
Factors Related to Positive Outcome. [Online]
Available at: http://isp.sagepub.com/content/early/2012/07/18/0020764012450992
[Accessed 2nd July 2014].
Prison Reform Trust (2012) Reforming Women’s Justice: Reducing the
imprisonment of women
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
Yakeley, J (2010) ‘Violent Women’ in Working with Violence: A Contemporary
Psychoanalytic Approach (Basic Texts in Counselling and Psychotherapy)
Basingstoke: Palgrave Macmillan
De Zulueta, F (2008) From Pain to Violence: The Traumatic Roots of
Destructiveness London: Wiley
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
January 2018 was an interesting month in the world of what textbooks refer to as Personality Disorder. There was the launch of the Personality Disorder Consensus Statement, an article on Personality Disorder on the BBC and the launch of the Power Threat Meaning Framework. While I haven’t read the full version of the PTFM I have read a lot about it, and there has been a lot to read. The responses were many and mixed. Some of the responses have been vitriolic, others merely critical, and others more celebratory as a high profile way of thinking about mental health and mental health problems leaps into being.
Some of the criticisms of the PTMF are articulately laid out here. What I want to do in this blog is lay out a basic version of what the PTMF promotes, why it’s essential that people can take this on board and what might get in the way of making some use of it.
Within traditional psychiatry signs and symptoms that occur together are named as a diagnosis. The PTMF encourages us to shy away from diagnosis and illness and instead explore a person’s difficulties and distress in terms of:
What happened to you?
How did it affect you?
What sense did you make of it?
What did you have to do to survive?
From the questions above we can then discover a narrative around why someone does what they do. We can see how their behaviour makes perfect sense given their previous experiences. In an ideal world we can then think about what might help and at a minimum consider how to avoid replaying some of the person’s most negative experiences.
For difficulties such as insomnia the framework might not be that helpful. For other areas I suspect clinicians and service users should use it if they both agree it’s useful. For the people who get labelled with Borderline Personality Disorder this kind of thinking is vital.
Why is it vital? There was a time that I didn’t think that it was. I was happy to join in with a roll of the eyes and a “typical PD” comment. I could understand that someone was self-harming because they had a personality disorder. Times when I felt attacked or criticised it was easy to label everything as the product of a disordered personality – this left me as a flawless clinician with merely a faulty patient to contend with.
As the years ticked by my experiences in work got me thinking of people with a diagnosis much more as simply people. My work became about helping staff who thought in the way that I used to, to unpick their ideas and see someone in a more empathic way. What I tended to find was that a list of diagnostic criteria had absolutely no impact in how staff thought about and responded to the people in their care. When we could move away from the descriptive (and fairly judgemental) criteria and think about the experiences that people had lived through that might inform how they behaved, then it felt like some empathy could arise.
1 Looking through someone’s notes I read “Mandy went to her room and was self harming due to her diagnosis”. It frustrated me that someone’s thinking could begin and end with that sentence. There was no sense of what was going on in their head. No indication of or curiosity about what they might be feeling. No indication of how people around them responded (apart from the implication that it was dismissed and pathologised). How can we help people if our sole understanding of their behaviour is that they do it because of a particular label?
2 I was in a group and someone recounted something that they’d done “because of my BPD”. We spent a decent amount of time exploring how their feelings and responses were entirely appropriate, especially given their early traumatic experiences. The description of overwhelming emotion and the desperate urge to feel something different made a lot more sense and contained more potential for change than “because I’ve got BPD”.
It would be easy to say that the above examples are simply people using diagnosis badly. While this is true, there is something that happens in this area of work that means that traumatic histories are forgotten and staff see risky or troubling behaviour purely through the lens of their own experience.
“I feel manipulated” = They were manipulating me
“I don’t know why they did that” = They were doing it for attention
She cut herself after ward round = She’s trying to sabotage her discharge
To an extent this is understandable (understanding does not mean approval). I was very poorly trained to work with people who had lived through trauma and my understanding is that undergraduate training hasn’t changed significantly. With no knowledge base, the students of today tend to learn from those who also had little training so learned on the job. Combine this with people who cope in ways that can be dangerous (the results of which staff might be blamed for) and you have an environment full of confused, anxious clinicians. This seems to lead to a situation where toxic ideas can flourish with little opportunity for people to learn anything different. A new cycle of treating people as if they were manipulators begins, with people reacting to that hostility and then having their reactions explained by their diagnosis.
This doesn’t happen everywhere but it does happen every day. Any tool we can use to stop the thinking shortcuts of “They’re just…” and focus on an empathic understanding of why someone does what they do seems essential for maintaining compassionate care. We can’t validate someone with personality disorder, but we can validate someone whose thoughts feelings and actions make perfect sense given their experience. The PTMF may not be product that means we never use diagnosis again, but let’s not boycott the restaurant because there are a few dishes we don’t like.
It is too early in the morning, there is a light dusting of snow on the ground, and I’m heading off to Manchester to spend a day dropping the disorder. A Disorder for Everyone (#adisorder4everyone) advertises itself as a one day event for a range of staff and service users to discuss critical questions around the biomedical model in health. My perception of it is that it’s overtly critical of our current system of diagnosis (especially around the term personality disorder) and heavily promotes the idea of formulation and understanding difficulties rather than labelling them. Less a neutral place to debate but a place with an agenda and a message to impart. This is no bad thing as I’d agree with something that I often hear emanating from the AD4E days, that “Diagnosis obscures peoples stories”, that once something is labelled, it’s an excuse to stop thinking and respond to the label rather than the person.
The event comes at a poignant time. Earlier in the week I’d lost someone I was relatively close to (as close as you can be to someone you have never met) on twitter to suicide and I was at an event where her passing was to be acknowledged. She was almost described as someone who ‘had’ personality disorder and I was glad to be able to point out how much she (and eminent psychiatrists) rejected that label for her presentation, how she felt that it had led to a ‘care’ plan she felt to be brutal and dehumanising and how she saw the label as something that had led to the staff around her acting in a way that was toxic to her. So in a week where the damage labels can do is on my mind more than usual I was off to find out more.
I need to confess to being a touch apprehensive about going. When talking about what textbooks describe as ‘personality disorder’ on social media I tend to get a bit of a hard time. I wonder if it’s because the debate tends to become polarised and I actively try to keep something of a middle ground. In a polarised debate this means I don’t end up on anyone’s ‘side’ tending to result in me being perceived to be ‘against’ people. I rarely am and if anything, my views on diagnosis tend to slide more towards the DTD side. I shall elaborate….
Whenever I’m training people about personality disorder, someone will pretty much always say “I want to know about the signs and symptoms and the different types”. In many ways, this knowledge is next to useless, but it does help staff feel more competent and competent. Most days this statement gets a response along the lines of….
There are 10 types of personality disorder. I’ve worked in a variety of mental health settings for the past 18 years and I have met less that 10 people with a personality disorder diagnosis that isn’t borderline or antisocial. So – there’s these 10 types, only 2 of them ever get diagnosed. Something with this system is seriously wrong.
In my experience if you are a woman who self harms, you are getting a BPD diagnosis regardless of whatever else is going on. Something with this system is seriously wrong.
Research suggests that if you can be diagnosed with one personality disorder, it’s highly likely you’ll meet the criteria for another 2. That’s 3 personality disorders in all. So in a system that aims to put people into a neat tidy box so that we know a care pathway, it’s messy because they’re actually in 3 boxes (and probably with some traits in a few others). Something with this system is seriously wrong.
Let’s take borderline personality disorder in the DSM 5 as an example. To be given the diagnosis you need to match 5 of the 9 criteria. Let’s say that my friend Ian and I are on the ward. He can meet criteria 1-5 and I’ll meet criteria 5-9. That’s us with the same diagnosis, the same treatment plan, and sharing only one characteristic. Something with this system is seriously wrong.
Those are the problems within the system, let alone the insult inherent in labelling someone as having a disordered personality. I can intellectually accept that we all have personality traits, that some of those can cause us difficulties (mine do!) and that if they cause us serious difficulties that could be described as a disorder. The difficulty in this field is that the majority of the people getting this label are those who have lived through experiences of neglect, abandonment and outright abuse. To then label them as disordered rather than seeing them as having an understandable response to their experiences then seems to be somewhat callous.
Now often, people can’t accept that the ideas above go anywhere near my head at all. One reason for this is that I work in a personality disorder service. I’m told that I have an investment in this label and that I have forged a career on the backs of abused women. I can see a basis for this argument but I’m not sure what the correct response is. I suspect it’s to jack in my job. The difficulty I see with that is that systems often struggle with people who get a personality disorder label. I want to make that better. I’ve met too many people who come onto wards feeling suicidal and never get let off again. Ways of coping that would go unnoticed in the community become reasons to detain in hospital and all of a sudden people have been on an acute ward for 6 months, they’re on a range of toxic chemicals, they’re 3 stone heavier and they’re about to be shipped off to some institution miles from home. Will this happen less if I stop work? I suspect not. Will there be a voice that challenges this trajectory? Again I suspect not. I was reading Gary Kasparov’s book last week and he was talking about what to do to combat malaria. Do you try and help some people now or a lot of people in the future? Do you make more mosquito nets or do you work on a cure? I’m making mosquito nets and I want all those working on the cure to succeed. It doesn’t mean that either of us is the enemy.
So in essence, this is what I a took into the event. I also took some worries. If the diagnostic system vanishes, how do newly qualified staff cope? It took me years to feel confident enough to just look at the difficulties people were experiencing. Can someone do that fresh from college? How does that culture change come about? Painfully I suspect.
Also, what do we do with our accumulated knowledge so far? Is it useless because it’s built on such a shaky foundation? With a diagnostic system shattered, will we know ‘what works for what’ anymore?
So the event is over. And I survived. Actually, the apprehension I’d had about attending was totally groundless and while a couple of people recognised me from social media, they couldn’t have been friendlier or more welcoming. While there was a touch more poetry present than I would normally have the stomach for, it was powerful in its delivery and did what I think all good poetry does, says more with less words.
I’d opted to go to this event rather than other DTD ones as I was keen to hear Lucy Johnston speak and I’d somehow managed to overlook that she actually speaks at all of them. I was a little bit disappointed, not it the quality of what she said, but because I’d expected there might be something to rail against. Something that sounded a bit too left field or a bit ‘crazy’. Instead Lucy gave a critique of diagnosis where there wasn’t anything substantial to push against. If I’d wanted to be particularly devilish I might have pointed out that the diagnostic criteria she (rightfully) pointed out as being moral judgements did come with the caveat that they needed to cause problems for people for the diagnosis to apply. Having said that, I’ve seen people detained in hospital for self harm that was only a problem for other people so I might support Lucy’s position about the spirit of how diagnosis is used, if not the letter of it.
In the afternoon Lucy spoke about the value of team formulation. Again (almost disappointingly) there was little to disagree with. She described a mechanism to keep teams thinking so that they weren’t overly rejecting or enmeshed. It made me think of the Knowledge and Understanding framework for Personality Disorder and the Offender Personality Disorder Pathway and how they both (in my experience) aim to challenge labels, offer a understandable and empathic alternative to a diagnosis and “try to keep thinking at all levels in the organisation”. It also made me think of the NICE guidelines for Borderline Personality Disorder which encourage trusts to set up specialist services to “provide consultation and advice” which in my experience has been a similar “let’s forget about labels and understand what’s going on approach”. Now the KUF, the OPD and the NICE guidelines are heavily loaded with the PD label, but as they offer a non diagnostic approach is that a price worth paying to get organisations thinking differently? In systems that are welded to a hierarchical, diagnostic system, are these tools a wedge to get different thinking in? Many will think not but one of the reasons I often berate Wales for not following NICE guidelines is because without a mechanism in the organisation to promote thinking, people mindlessly (often with good intentions) do what they have always done. One of the comments about the use of team formulation is that getting a team together to think for an hour costs a lot of money. It does. But locking someone in a “specialist” placement for a year costs £200,000 and if formulation stops that happening once then its paid for itself until most of the team have retired.
Jacqui Dillion (Dr Jacqui Dillion no less) finished the day off with a description of her journey through life, services and activism. It was a captivating talk with far too many people who you might expect to be helpful being outright abusive. We heard experiences being discounted as illness, emotions being discounted as illness, anger about not being believed discounted as illness and a host of people who should have helped replicating the abuse of the past. It was this part of the day I found most affecting and it was heartening to hear Jacqui talking of what made life liveable for her again. Not some magic therapy but someone who would listen, someone who would validate and someone who empathise. Someone who could give a different perspective to those who told her she was evil and bad. I’m going to butcher this quote but it was something along the lines of “We are traumatised by relational abuses and we need relationships to get past them”. For all those on the ward and the CMHT who don’t know how to help I’d urge you to read that sentence again.
Jacqui asked how many people worked in mental health and a bunch of hands shot up. She told us that you have to be a bit odd to choose to do this. I tend to agree and I often wonder if what gets labelled as personality disorder is the combination of those who get all their self worth from helping people in distress meeting those who understandably cannot trust those who are supposed to care. Much to think about…
Having left the event I’d share what one of the delegates voiced with frustration, that this is all just common sense. It is, but we need to find a way to inject it into systems that run like they have always run and are paralysed by the fear of being blamed. My only gripe of the day is that there wasn’t much of a chance to interact with the other delegates. Even if there had been my suspicion is that the event wasn’t populated by senior managers and clinicians from the NHS. I think people left validated rather than converted but again, this is no bad thing. We might also have left a bit angry. ‘Anger is an energy’ was quoted (but not attributed to the Sex Pistols). I quite like ‘Anger is a gift’ from Rage Against the Machine. Certainly people left with anger but also with some ideas around how to apply it.
Part of the theme of the day was how labels can stigmatise and stop us seeing people. We talked a lot about the value of stories, how people are made of stories (not sure I agree, but certainly our perceptions of others are), and how “recovery” was about getting a story that portrayed you as a survivor of adversity rather than someone who was disordered or ill. We have the power to influence the stories that are told about people and I left today inspired to tell better ones. To tell stories about people, about why difficulties make sense and about ways in which we can help. I want an alternative to a Daily Mail letter that talks only of illness and tablets, and in the midst of all the evils of the world, I want to tell stories that are full of hope.
I’d heartily recommend attending one of these events and there are details of the next ones here…
This 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.
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 (2003)
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 is the best article you can read if you work in this area!!!
With research suggesting up to 78% of people in prison could be diagnosed with personality disorder, here’s some relevant things to read –
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.
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.