Just Stop: The new solution to self harm

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

(Trigger warning for self harm and abuse)

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

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

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

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

1- The things people do make sense

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

2 – You’re not that important

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

3 – Be curious

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

4 – It does something for them

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

5 – It does something to other people. 

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

6 – But they could just ask us!!!

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

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

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

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

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

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

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

Why Occupational Therapy Saved Ellie

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

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

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

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

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

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

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

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

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

You can hear more from Ellie here on this podcast 

Ellie talks lots of sense on twitter @elliewildbore

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

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

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

It is February 6th and this auspicious day brings together 2 great celebrations.  Firstly it is #TimeToTalk day and secondly it is Harry Potter Book Night.  At first glance there is no obvious connection but….lets take a close look. 

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

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

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

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

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

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

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

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

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

I liked this blog and want to buy Keir a Coffee

No pressure to use this option at all. I suspect I will use the money to buy someone else a coffee, but you will have spread a little love around.

£2.50

 

Risk Management Begins at Home

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

For a while now I’ve been writing about the impact of overly defensive and restrictive practices on the people that I work with (like here and here).  The usual story that I tell is of people being at risk in the community but that risk increasing massively when in hospital.  Unable to see that the ‘help’ seems to putting the service user in greater danger, the answer is seen to be more restriction, greater security and eventually a few years locked rehab unit.  

While many people can recognise the pattern described above, it’s not something that gets promoted a great deal in services where the message of ‘doing whatever it takes’ to keep people safe is often repeated.  It was interesting then to read the Independent Review of the Mental Health Act and to see  Sir Simon Wessely expanding on these very themes right at the beginning of the document.  

My MSc dissertation (which I will publish at some point) concluded that it was fear of what clinicians might be blamed for that led to some of the most restrictive practices in the organisation.  The MHA review begins by talking about Fear – 

“Professionals are fearful that unless they adopt a cautious, risk averse approach to their patients, they will find themselves being publicly shamed for those occasions when those same people cause serious harm to themselves or others”

While it is rarely said out loud, this means that people who are in services to receive care and support, can instead be viewed as people who are dangerous to those who should care for them.  The danger is not so much about what service users might do to a clinician (although this fear is not uncommon) but what clinicians might be blamed for.  The service user moves from being a focus of support, to a threat that can damage or destroy a clinician.  It is unsurprising then that the way service users experience ‘care’ is often not perceived as kindness. 

One way that clinicians can rid themselves of any blame for the actions of those in their care is to pass the responsibility for their care onto others.  I have observed and been part of too many unenthusiastic interactions where someone has been referred for an assessment just so that someone else can make a decision (Sometimes with the full knowledge that it’s a waste of time, but at least it’s the other team that has said No rather than us).  It is dispiriting for all concerned and can too often lead to an inappropriate level of restriction because anything less restrictive ‘isn’t worth losing my badge over’.  Bethany’s dad (@jeremyH09406697) is an avid campaigner against restrictive practice and his experiences seem to echo Wessley’s sentiments that –

”some people with a learning disability, autism or schizophrenia are being “warehoused” as we now call it in locked rehab wards, or unsuitable long stay wards which exacerbate and not ease their problems”

I wish that the chair of the review saying that what we do to people in the name of safety is making things worse had excited the media and society a bit more.  Sadly at the time it was released we were too focused on whether to throw rocks or olive branches towards Europe.  

“So whilst fear of the mentally ill has decreased in the public, parliament and media, a different kind of fear has increased – the fear of making a faulty risk assessment that influences many professionals.”  

The consequence of this is that for many professionals, risk management has “slipped into ‘managing risk to themselves”.  This makes sense as the consequences for a wrong decision can be catastrophic, but to look after ourselves before the person we are being paid to care for is a perversion of our duty of care.  

Wessely suggests that this practice can explain some of the rise in detentions under the mental health act, the sterile nature of many inpatient units and some of the more baffling “just in case” interventions that can take place (No shoe laces for someone with no history of ligaturing?).  I agree with him.  He goes on to suggest that clinicians and services need help from the government and the law to ensure that ‘positive risk’ (which can often mean anything other that the most restrictive practice) is supported.  I hope this can happen, but at the moment, its only @normanlamb I ever see talking about this issue.  

Much of my work over the past few years has been around helping organisations question and avoid some of the more restrictive options available when caring for people who cope in ways that can be dangerous to them.  There’s a range of things that can be done to relieve some of the anxiety in the system and to ensure that the needs of the service user are kept at the forefront of the minds of the people involved in their care.  I may expand on these in future posts but briefly…

  • Too often decisions about how to manage someones risk are made without them.  When they are made an equal partner in decision making, most people can describe their wishes and aims in ways that can reassure people.  We don’t need to agree with people’s decisions, but if we give people all the information at our disposal then we should respect what they want and think about how to support them with their goals.  Where the service user isn’t able to articulate a view, it’s useful to have the input of an Expert by Experience who can help staff teams make sense of why people do what they do.  

 

  • We are often quite poor at giving people information.  I’ve never had anyone respond to the rationale “it’s for your own good”, but I have had people respond to genuine dilemmas where we weigh up pro’s and cons together.  

 

  • We can often have a fantasy about what ‘the next level up’ will be like.  In my experience the extra level of restriction either exacerbates the current difficulties or needs to use increasingly potent cocktails of medication to achieve the desired response.  The intensive therapy supposedly on offer is rarely available and when it is, there’s little benefit from being forced to do therapy.

 

  • Clinicians should never feel that they’re alone in making decisions.  The backing of senior managers and most importantly the service user themselves can take away a lot of anxiety.

 

  • We need to learn from the past.  If someone presents for the 20th time we need to use the knowledge that we have rather than act as if it’s the first time it has happened.  Thinking about crisis when not in crisis is essential and being able to communicate the plans we have made so that people aren’t ‘thinking on the spot’ is really useful too.

 

  • A good risk formulation can again take away a lot of anxiety.  This can help us move from “What’s the worst thing that can happen?” To “What is likely to happen given our past experience?”.  The service users I work with and I have used this to help teams see that for some, admission is likely to result in more lethal methods of coping.  Equally it has helped others recognise that after self harm is a time when the urge to harm has been reset, rather than the time to restrict.  There is little substitute for a coproduced formulation in helping everyone understand the risks and thus agree how to move forward.

There was a post on twitter recently that likened positive risk taking to clinicians neglectfully gambling with peoples lives.  I hope that people can see that this isn’t what I’m advocating.  Trying to eliminate risk can paradoxically put people in danger and we need to keep an awareness of this as we balance the need to support people with the need to keep them safe when they have lost the ability to do it for themselves.  If we can recognise when the focus of our work is protecting ourselves then we can step back and refocus on the person we are supposed to be helping.  If we can do this, the chances of our input being perceived as kindness is substantially increased.  

If you or your organisation would like to talk about how we can help with any of the above please get in touch via the website.  Keir provides therapy, training and consultancy via www.beamconsultancy.co.uk

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

___________________________________________________________________________________

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. 

______________________________________________________________________________________

@shadesofsky is certainly worth a follow on twitter.

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

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.

__________________________________________________________________________________________

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.

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.