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
For those outside of the UK, or those who haven’t had the pleasure of working in mental health, it’s probably worth exploring what care care coordination is. So in the uk, people with more complex mental heath problems are seen within secondary care.This is likely to be a community mental health team.If you are among the most complex of the most complex you will get a care coordinator.The mental health charity Rethink say a care coordinator will:
Fully assess your needs:
Write a care plan which shows how your needs will be met
Regularly review your plan with you to check your progress
Your care coordinator should consider the following needs:
Your mental health needs
Medication and side effects
Employment, training or education
Personal circumstances including family and carers
Potential risk to yourself or others
Problems with drugs or alcohol
What you can probably add to the above list is going to safeguarding meetings, arranging reviews and professionals meetings, being the go to person when the person you work with is in crisis – which might involve getting extra services involved, arranging an admission or mental health act assessment or staying involved once someone is in hospital.
I spent a fair few years being a care-coordinator for people.Mostly in a CMHT, but also in Assertive Outreach and Early Intervention.What I learned over time was that care coordination is boring.Not all of it, the opportunity to build a relationship with someone over months or years was fantastic.The filling out of forms was not.The bureaucracy and associated paperwork is mind numbingly dull.In all my time doing these forms no one was particularly interested in the quality of them, merely that they had been done.And the pressure to fill them in was relentless.Not only was there the need to complete an assessment and risk assessment and crisis plan almost within an hour of meeting someone, but these had to be updated and signed by theclient every time you did a review and every time there was an admission.Unmet Need forms needed to be completed and it seemed that for anything to happen, there was a form that had to be filled out.There were days that I filled in forms about people that I wasn’t seeing because I was filling in forms.It felt pointless, an exercise in box ticking and (to steal a phrase from my old lecturer “As if the performance management aspect of the primary task had become the primary task itself”.
In stark contrast to the organisational anxiety and zeal around the completion of forms was the total disinterest of those who were in the service looking for help.This isn’t to say that they weren’t very concerned about the quality of what they were receiving, just that the filling out of forms was something that got in the way of the work, rather than made it better.The only times care plans became important for those I worked with was when things had gone very badly wrong.Obviously some sort of system is required to identify problems and how they will be addressed, but for me the entire system seemed set up to demonstrate that ‘something was being done’ often at the expense of anything being done at all.
With the paperwork out of the way (it was never out of the way, it just went further away from the front of your mind for a bit) there came the real work of actually helping people.This could be disrupted quite quickly.A client in hospital appealing their detention?A 2000 word report is required.A phone call saying a relative is concerned?You’re going to need to follow that up.
All the above is what my nursing, social work colleagues and I did day in, day out.They would also do periods of ‘duty’ where they would man a phone in the office and be the first port of call for anyone phoning the office.My memory of the spectrum of calls involved everything from a man who wanted to die to a nun who was organising a coffee morning who wanted to know if one of our patients was allowed a cake.It was chaotic, but it was enjoyable and rewarding.
While I was working in the CMHT there was often a lot of pressure to work differently from the rest of the team.Despite the fact that many of those in the service had been there for years and had histories crammed full of neglect, abandonment and abuse – the OT department were keen for all the work to be done in 12 weeks.This could be anything – anxiety management, healthy eating, linking into voluntary work, supporting to return to education….all of these and more – as long as it could be done in 12 weeks.If part of the reason that you were in the CMHT was that you had difficulty trusting others and believed that life would always be a shit as it had been – then that was you shut out from the 12 weeks of gold.A ‘lack of motivation’ was something to be penalised for, rather than something to be curious about.It seemed like there was a desire to provide a primary care service within secondary care for the noble reason of….I don’t know.There seemed to be no sense to it at all.
So there’s a view that when things are at their best, the work within mental health is structured, consistent and predictable.OTs often want to work in this way as it’s often the time that you feel most confident in what you are offering and you see the most benefit to those you are working with.The problem is that pretty much everyone wants to work in this way. I’ve never seen a social worker turn cartwheels at the prospect of writing a mental health act report nor seen a delighted CPN cancelling a group because a patient hasn’t been seen for 3 days.Few people relish doing duty.But….somebody has to do these things.Some of the jobs in the CMHT are boring, soul destroying and take you away from what you’d rather do.The question I always consider is why these relatively less rewarding jobs should be the domain of ‘others’.I know a lot of OT’s who would say that arranging a mental health act assessment isn’t the role of an OT – and maybe it isn’t, but it isn’t the role of a nurse or social worker either.
I have 2 concerns:
Concern the first
If we are precious about the work that we do, if we see ourselves as massively different to the rest of the CMHT I worry that we argue ourselves into being less useful than the rest of the team.Teams will advertise for generic posts that are nurses or social workers while we exclude ourselves from opportunities to show our value.I was in a meeting once where an OT was complaining about psychiatrists wanting people to come to them rather than going to where the others were – “It’s as if their time is more valuable than hours”.I wanted to feed him his payslip.OTs bring a unique contribution to the MDT but it isn’t worth any more or less than our nursing and social work colleagues.Let’s be team players and get dirty with the rest of the gang.
Concern the second
I work with people who are often dangerous to themselves.At one point I think I did this quite badly but after years of duty, crisis management, supervision and time with Lived Experience Practitioners I’m now seen as someone to look to for advice and support when working with people who might die.I’m going to suggest that this is relatively rare for an OT and I really don’t think it should be.Not knowing who is going to come through the door is exciting.Talking through difficulties with those who are suicidal is rewarding.In the past my OT managers actively steered me away from doing duty and responding to whatever problem someone had at that time.They encouraged me not to work with people who were chaotic and they gave me the message that anyone living with high risk was the domain of some other discipline.Had I listened I could now be in a place where I worked in a CMHT with a sense that self harm, suicidality and acute mental health crisis is someone else’s job – which would be ridiculous as that seems to be the majority of the work of the CMHT.We do ourselves no favours at all when we refuse to develop skills in some of the most pressing problems of mental health.
In a perfect world the bureaucracy of care coordination would be minimised and we would all do the therapeutic work that we wanted.In an imperfect world we need to help out with the work that our colleagues resent just as much as we do.Don’t be an OT that doesn’t help the team.Don’t be an OT who disappears when things get tough.Consistency and reliability doesn’t always mean being in a room on time for people planning on how to hold things together.It might mean being round their house while their world falls apart.
Many thanks to Hollie @hoppypelican, Leanne Algeo @luvlea85, Sophie and Amy Boot @amyelizaharriet for kindly looking over the drafts of this blog and giving some useful feedback. Any errors, typos and bizarre ideas are entirely mine. If anything is coherent or makes a modicum of sense that is purely down to them.
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.
For a while now I’ve been writing about the impact of overly defensive and restrictive practices on the people that I work with (like here and here).The usual story that I tell is of people being at risk in the community but that risk increasing massively when in hospital.Unable to see that the ‘help’ seems to putting the service user in greater danger, the answer is seen to be more restriction, greater security and eventually a few years locked rehab unit.
While many people can recognise the pattern described above, it’s not something that gets promoted a great deal in services where the message of ‘doing whatever it takes’ to keep people safe is often repeated.It was interesting then to read the Independent Review of the Mental Health Act and to seeSir Simon Wessely expanding on these very themes right at the beginning of the document.
My MSc dissertation (which I will publish at some point) concluded that it was fear of what clinicians might be blamed for that led to some of the most restrictive practices in the organisation.The MHA review begins by talking about Fear –
“Professionals are fearful that unless they adopt a cautious, risk averse approach to their patients, they will find themselves being publicly shamed for those occasions when those same people cause serious harm to themselves or others”
While it is rarely said out loud, this means that people who are in services to receive care and support, can instead be viewed as people who are dangerous to those who should care for them.The danger is not so much about what service users might do to a clinician (although this fear is not uncommon) but what clinicians might be blamed for.The service user moves from being a focus of support, to a threat that can damage or destroy a clinician.It is unsurprising then that the way service users experience ‘care’ is often not perceived as kindness.
One way that clinicians can rid themselves of any blame for the actions of those in their care is to pass the responsibility for their care onto others.I have observed and been part of too many unenthusiastic interactions where someone has been referred for an assessment just so that someone else can make a decision (Sometimes with the full knowledge that it’s a waste of time, but at least it’s the other team that has said No rather than us).It is dispiriting for all concerned and can too often lead to an inappropriate level of restriction because anything less restrictive ‘isn’t worth losing my badge over’.Bethany’s dad (@jeremyH09406697) is an avid campaigner against restrictive practice and his experiences seem to echo Wessley’s sentiments that –
”some people with a learning disability, autism or schizophrenia are being “warehoused” as we now call it in locked rehab wards, or unsuitable long stay wards which exacerbate and not ease their problems”
I wish that the chair of the review saying that what we do to people in the name of safety is making things worse had excited the media and society a bit more.Sadly at the time it was released we were too focused on whether to throw rocks or olive branches towards Europe.
“So whilst fear of the mentally ill has decreased in the public, parliament and media, a different kind of fear has increased – the fear of making a faulty risk assessment that influences many professionals.”
The consequence of this is that for many professionals, risk management has “slipped into ‘managing risk to themselves”.This makes sense as the consequences for a wrong decision can be catastrophic, but to look after ourselves before the person we are being paid to care for is a perversion of our duty of care.
Wessely suggests that this practice can explain some of the rise in detentions under the mental health act, the sterile nature of many inpatient units and some of the more baffling “just in case” interventions that can take place (No shoe laces for someone with no history of ligaturing?). I agree with him.He goes on to suggest that clinicians and services need help from the government and the law to ensure that ‘positive risk’ (which can often mean anything other that the most restrictive practice) is supported. I hope this can happen, but at the moment, its only @normanlamb I ever see talking about this issue.
Much of my work over the past few years has been around helping organisations question and avoid some of the more restrictive options available when caring for people who cope in ways that can be dangerous to them.There’s a range of things that can be done to relieve some of the anxiety in the system and to ensure that the needs of the service user are kept at the forefront of the minds of the people involved in their care.I may expand on these in future posts but briefly…
Too often decisions about how to manage someones risk are made without them.When they are made an equal partner in decision making, most people can describe their wishes and aims in ways that can reassure people.We don’t need to agree with people’s decisions, but if we give people all the information at our disposal then we should respect what they want and think about how to support them with their goals.Where the service user isn’t able to articulate a view, it’s useful to have the input of an Expert by Experience who can help staff teams make sense of why people do what they do.
We are often quite poor at giving people information.I’ve never had anyone respond to the rationale “it’s for your own good”, but I have had people respond to genuine dilemmas where we weigh up pro’s and cons together.
We can often have a fantasy about what ‘the next level up’ will be like. In my experience the extra level of restriction either exacerbates the current difficulties or needs to use increasingly potent cocktails of medication to achieve the desired response. The intensive therapy supposedly on offer is rarely available and when it is, there’s little benefit from being forced to do therapy.
Clinicians should never feel that they’re alone in making decisions. The backing of senior managers and most importantly the service user themselves can take away a lot of anxiety.
We need to learn from the past. If someone presents for the 20th time we need to use the knowledge that we have rather than act as if it’s the first time it has happened. Thinking about crisis when not in crisis is essential and being able to communicate the plans we have made so that people aren’t ‘thinking on the spot’ is really useful too.
A good risk formulation can again take away a lot of anxiety. This can help us move from “What’s the worst thing that can happen?” To “What is likely to happen given our past experience?”. The service users I work with and I have used this to help teams see that for some, admission is likely to result in more lethal methods of coping. Equally it has helped others recognise that after self harm is a time when the urge to harm has been reset, rather than the time to restrict. There is little substitute for a coproduced formulation in helping everyone understand the risks and thus agree how to move forward.
There was a post on twitter recently that likened positive risk taking to clinicians neglectfully gambling with peoples lives.I hope that people can see that this isn’t what I’m advocating.Trying to eliminate risk can paradoxically put people in danger and we need to keep an awareness of this as we balance the need to support people with the need to keep them safe when they have lost the ability to do it for themselves.If we can recognise when the focus of our work is protecting ourselves then we can step back and refocus on the person we are supposed to be helping.If we can do this, the chances of our input being perceived as kindness is substantially increased.
If you or your organisation would like to talk about how we can help with any of the above please get in touch via the website.Keir provides therapy, training and consultancy viawww.beamconsultancy.co.uk
One of my favourite ways of helping people is the day therapeutic community. I got a chance to work in one around 2010, a time when I held (pretty tightly) some of the more stigmatising views people express when talking about ‘personality disorder’. I joined for a year and left most unwillingly after 2 and a half. I spent 5 hours on a Monday in a group being genuine with people. I worked with experts by experience and saw those who I’d thought of as being manipulative and attention seeking being brutally honest and utterly self sacrificing. Aside from the change the group made in me, I saw people who had been on the verge of death from self injury move into lives where they could care for themselves and allow others to love them. It was a powerful transformational learning experience for me and it is with much pain and despondency that I see this way of working move into the shadows, eclipsed by DBT and other 3 letter therapies. In a world where services for those who hurt themselves tend to be easily forgotten or overlooked, 2 of the day therapeutic communities I was part of either won or were the only mental health team shortlisted for the NHS Wales awards. Both these services have now closed and it feels palpably ironic that services can be both celebrated and praised for their excellence while also marginalised and unsupported. Perhaps one of the reasons people find therapeutic communities hard to support is that they are difficult to understand. The lack of direction can be uncomfortable. The idea of patients having full control of their group can be terrifying – especially to organisations that try to eliminate risk. In many ways the only way to understand how a TC works is to see it. In the world of social media I’ve always hoped for someone to write an account of their time in a TC to give people an indication of what it feels like. When I voiced this on twitter one day the marvellously articulate @shadesofsky offered to write that very piece. A few months later here it is, a powerful account of what a TC can feel like. I hope people read this and think of TCs as an option. I hope commissioners and clinicians read this and remember that recovery isn’t only spelled DBT. I hope people can remember that the NICE guidelines say we need to give people a choice. Finally, I hope you enjoy reading this as much as I did.
It’s 4pm on a rainy Tuesday afternoon. I’m a member of a Democratic Therapeutic Community for people diagnosed with Personality Disorders. I’m sitting, curled tight on a sofa that’s nearly collapsed in on itself, trying not to do the same. My knees held fast against my chest, my hands are tearing at my hair.
I want out.I thought that this was one place I was understood, but I was wrong, wrong, wrong. I am always wrong. I myself, am wrong. I want out.
I am crying, hard. I’ve left the community meeting in despair again. Run away, because someone said something that I couldn’t handle. I don’t like it here. My anger is too intense. I can’t stand conflict. I am too full of anger. The whole community hates me. I am too messed up to be put right. I need to leave.
It’s 4pm on a rainy Tuesday afternoon, 15 months and 500 miles away from that Tuesday afternoon. I am remembering what I used to be like, when I was starting out treatment. Even after spending 12 months in the preparatory group, I was still a crumbling wreck. Brittle, the psychiatrist said. I would snap at the slightest thing. Cry. Self-harm. Stop eating. Nothing – not courses of CBT, years of counselling, exercise, book prescriptions – nor medication had worked to change my mental health. I was volatile and lonely, with a self-esteem on the floor. Not that you’d know that from the outside. When I started in the TC, I worked multiple jobs, more than full-time hours, teaching; researching. Striving. Pretending to the world that all was OK. Trying to run faster than the emotional maelstrom baying at me, without success.For the past few years, life outside work had been getting messier. And I was terrified that I wouldn’t be accepted in the TC. I had never belonged anywhere.
The TC, (group therapy for 15 hours a week) had offered yet another treatment option. Therapists from different health backgrounds, work with service users, as equal members of the community. Each member joins via a case conference which identifies the things that they would like to change in therapy, for a period of 18 months. I was voted in unanimously. I wanted to work on trusting others; on kindling a sense of self-worth, on handling conflict without falling apart. And on not needing to work so hard. But a few months in, I was crying more, breaking down more often. I had returned to the self-harm, that I’d been obliged to stop for a period of four weeks, as a condition of entry to the community. I felt intensely disliked. I was utterly unlovable: rotten to the core, my inner voice whispered. I’d given up working many of the hours I was doing. But I felt more depleted than ever. And I still felt rubbish.
The community held me to account for my walk-out. I had to explain what had led me to leave; how I felt; what could stop that happening again. I had to face the reality of how getting overwhelmingly distressed and leaving the group had left others feeling. It was not comfortable. It left me feeling like I wanted to leave for good. But I didn’t. I kept going back because people would notice if you weren’t there. I went to group after group after group, day after day.
TCs are set up to work like a microcosm of life outside. So, the idea is that with a small number of therapists and service users, each person will end up re-enacting the patterns of interaction that they use outside. And, within the boundaries of the TC, those patterns are examined and reflected upon, and changed.There are endless boundaries in a TC. Twelve months into treatment, I was still discovering them. But I like structure and routine. After breaking the rule around no self-harm, I was put on a contract “to not cut”: and haven’t broken it since. The strict timings of opening and closing community meetings, the definite rules around contact with community members, the accountability for my actions, were keeping me contained. I struggled against flexibility; around times when the boundaries were deliberately broken – even by therapists – times that left me feeling like a small, lost child again.
Held by the boundaries, a few months into treatment, I was beginning to open up. Each week, the TC divided in half for “small group” – a time to test thoughts with a smaller number of people, look at events that had happened that week in more detail, or to share something new with the group. The feedback here was also painful. I was prickly, clipped, even condescending at times. I worked hard with the group to explore reasons for that. I was encouraged to take responsibility for the way I was acting – but not to blame myself for it, either. There was a reason – perhaps a wound that I was protecting – that was beyond my conscious experience – and that was driving my behaviour. The more I understood my knee-jerk reactions, the better position I was in not to resort to them.
TCs don’t just consider interactions in the present. They consider their history, too. One way of doing that, in the TC I was a part of was psychodrama. Acting out the past. One time, I was nine years old, on the playground again. S — was standing in front of me, with J— and B— beside her. J—‘s family don’t want to buy a copy of the school class photo’. That was my fault, because it’s not a class photo’ because I’m in it, and I was not supposed to be in that class. I was in the wrong class. In the days before PhotoShop, S— and J— wished that they could scratch me out of it. So do I. I wished I could erase myself completely from everybody’s lives. Everyone hated me. Even my teacher standing less than a foot away didn’t respond as the slap S–struck across my face echoed over the playground. The whole world hated me. In the psychodrama, I fight tears, fight for control, as this scene is laid before me. I must stay in control. I must not cry. I am not nine years old. S— is not about to hit me for calling her a name, in despair because nothing else has made her stop. I’m OK. Really. I’m OK. The echoes of my present thought patterns are there. Surely, I’ve processed stuff that happened over 20 years ago. It wasn’t not your fault, S —. You were nine. The adults let you down.So the therapist says.The TC offer a different perspective on the past.I have to work hard to believe that what happened when I was a child was not my fault.
We spend time each week going through the Structured Clinical Interview for Diagnosis II. Each and every trait of personality disorder. And conduct disorder. We work as a group, reflecting whether we think we have the trait, and get feedback from the rest of the TC. As expected, I meet the criteria for EUPD. But I also meet the traits for Avoidant Personality Disorder, too. I intensely fear rejection. I am scared to let people in, unless I can be certain that I will be liked. So I distance myself instead, most of the time. It’s safer that way. I have some fairly rigid thinking, too. I like boundaries: I find flexible interpretations of the rules harder to bear.Knowing the traits is useful.
In Objectives (PsychEducation by another name) we go through model after model to try to explain our distress. I consciously try to apply my experiences to each one, to make some kind of sense of the mess. Radical acceptance, concepts from DBT, help me most. Seeing each emotion as a guest at your house. Trying not to slam the door on it, but to invite it in, instead, to get to know it better.Mentalising, too. Thinking of all the other reasons why that person didn’t reply to my message, that aren’t about them not really wanting to be my friend. The world brightens after a realization like that.
The TC has a creative hour each week, too. I relished these. This was something I could do. I was allowed to write about how I felt, and that I could do. I wrote letters. Letters to my ex-partner in prison. Letters to my four year-old self. To myself. But writing is easy for me. I am challenged to use a different medium. I recoil. I’m less certain of myself in the break times as well, at first. I prefer to go where others aren’t. Hide on my ‘phone. Others might not want me to be hanging out with them, anyway.
Around ten months into treatment, things start to change, measurably. I have drawn a rose in the creative session. And the rose is in bud, and delicate, but it is growing, and I am beginning to believe that it will bloom. I have started dating. I think I can trust someone else that much. I am more accepting of the bad bits of me. Some things still get me. Using ableist language is one very quick way to get me riled.But maybe that’s useful, too, if I can use that anger in a helpful way.
A few months before I leave, I start applying for jobs again. And I get one, to dovetail with my leaving date from the community. Apart from, as much as I wanted to leave, three months into treatment, I don’t want to leave now. I have made firm, secure attachments to members. They have seen me scream and cry, and they still come back to me. They know the authentic me, and they still seem to want me around. But they encourage positivity in me, too. They are excited that I have a new job, in a new country. A new place to live. They wish me well. And I leave. I am now not allowed to contact them until they are discharged. I miss them, even a couple of months later. And things have been stressful with the job and the move, and I crave the structure of the TC to hold me safely again. I am frightened that I’m going to be no good at being an adult. But I am acknowledging that, rather than hiding at work. TC was tough. Leaving it was heart-rending. I am scared of life beyond its boundaries. But TC has given me the determination to make the most of what I have; to look forward to the future. I believe that the best is yet to come. And I can’t wait to live it.
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
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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
March is upon us and this is my first blog of this year. The main reason for that is that I’ve been desperately trying to get my dissertation finished and any writing that has not contributed to that 18,000 word total has felt like a betrayal. Anyway, it’s handed in now and it’s time to cast my eyes upon the land of my fathers as the British and Irish Group for the Study of Personality Disorder Annual Conference is coming to Cardiff on March 20th. With this in mind, it’s worth looking at how Wales responds to the needs of those diagnosed with personality disorder and how we compare to our neighbours on the other side of Offa’s Dyke.
In some ways, Wales has been quite pioneering in this field. While the NICE guidelines for borderline personality disorder were published in 2009, Wales laid out its own blueprint for services in 2005 calling for the provision of specialist services that were integrated into current provision. This was echoed in the NICE guidelines 4 years later. With Welsh Government guidelines and the National Institute for Clinical Excellence requiring trusts to provide specialist services you would assume that Wales would have ploughed ahead. You would be mistaken…
In 2017 Oliver Dale and his colleagues undertook a review of the provision of personality disorder services in England. They found that 84% of trusts provided a specialist service. In Cardiff in 2016, at a conference that gathered people from all the trusts in Wales, we very quickly replicated Dale’s study. We found that less than half of Welsh trusts (3/7) had specialist services. This was odd because 2 had services that were recognised as being very effective while areas that didn’t have specialist services talked about “the privatisation of PD” – how those diagnosed with a personality disorder were ‘not their business’ and were sent to expensive independent hospitals miles away.
Given the potential for specialist services to reduce the amount of people sent (and they go under the mental health act so they are literally sent) out of area I began to wonder why the Welsh Government wasn’t pushing trusts to follow NICE guidelines, or even its own guidelines. I wrote to the Health Secretary asking if he could encourage trusts to follow his own and NICE guidelines or explain what they were doing that was better. The disappointing response was:
“I hope you will understand that neither the Cabinet Secretary nor Welsh Government officials can intervene in health boards’ day-to-day operations”
This seems to me to be a preposterous answer. Not least because one of the Welsh Health trusts is under ‘special measures’. This is defined as “Current arrangements require significant change. Welsh Ministers may take intervention as set out in the NHS (Wales) Act 2006.” So in contrast to the answer I received, Ministers can not only ask why NICE guidelines are not being followed, they can take intervention to remedy it. In this case they merely choose not to.
If over half of Welsh trusts were refusing to provide treatment for people with cancer I suspect someone at the assembly would pick up the phone. If half of Welsh trusts declined to offer services to war veterans I’m convinced someone at the assembly would write a letter. Over half of Welsh trusts are ignoring Welsh Government guidelines and NICE guidelines for people diagnosed with personality disorder and the government doesn’t even see it as within its remit to ask why.
We can have lots of ideas about why this might be. We could say it’s because specialist services cost money, but the evidence is that they save money by reducing the need for expensive Out of Area placements. We might conclude that personality disorder remains a diagnosis of exclusion in Wales and that for some reason this is acceptable. Those in mental health tend not to shout very loud for their rights to be upheld. Those diagnosed with personality disorder are probably the most stigmatised and excluded within mental health. They are easy to ignore, easy to forget about and potentially paying £200,000 a year for them to be sent out of area is for some reason a better option than having to work with them at home. We can do better than this.
I wasn’t particularly satisfied with the answer I received, so I emailed again. Part of my letter said:
“I take your point that neither the cabinet secretary nor government officials can intervene in the day to day running of health boards, but I wonder if the Welsh government could avoid being complicit in the exclusion of people diagnosed with personality disorder by strongly encouraging trusts to follow its own guidance. My understanding is that NICE clinical guidelines continue to apply in Wales so I’m curious why it’s acceptable for less than half of Welsh trusts to follow them. Given that trusts have been sued for not following NICE guidelines would it be prudent for the Welsh Government to call on trusts to justify why they are not following the guidelines rather than have to pay the legal bills when somebody opts to take matters to court?
I welcome the extra money that the Welsh Government has put into primary care however the clientele I was speaking of tend to manage their distress with potentially lethal self harm. This is generally not seen as a primary care role and an absence of specialist services means that they get sent to largely unsuccessful out of area placements at a cost of around £200,000 a year. This is £1,000,000 to treat 5 people where a specialist team at a fraction of the cost could provide better treatment without the necessity to send Welsh people to England”
My response to this one was equally uninspiring. I was told that despite seeing no role for itself in highlighting that less than half of its trusts follow NICE guidelines for a particularly stigmatised group, the government had signed a pledge to reduce stigma. I feel like actions might have spoken much louder than words here.
I was also told “The Welsh government’s main role is to set the strategic direction for health services and hold the NHS to account”. For me ‘Strategic Direction’ might include writing guidance. ‘Hold the NHS to account’ might include ensuring that guidance is followed. I’m baffled why this is the case for some areas of health but not the realm of personality disorder.
The reply finished with “Health boards must regularly review their services to ensure they meet the needs of their resident population you may, therefore, wish to consider contacting the individual health boards directly on this matter” – my interpretation of this was “We have produced guidance, NICE has produced guidance, half of our trusts are ignoring it and if you want to know why, you can ask them yourself”. Again, this seems an incredibly vague interpretation of setting strategic direction and holding the NHS to account.
I did an experiment and opted to contact one of the health boards to find out why they didn’t follow NICE guidelines. They replied that Dialectical Behaviour Therapy was available in some areas and that intervention was offered through generic services. “That’s not what I asked” I replied, “Where are the specialist services that NICE recommend?” They replied something along the lines of “We know we’re not following the NICE guidelines and we’re working on it as a priority”. Given that it’s 13 years on from the Welsh government guidance and 9 years from the NICE guidance you have to wonder how far down the list of priorities it must have been. There is also the worrying response that “we need additional funding to create specialist services” when the reality is that a service could be paid for immediately by not sending one or two people out of area. If the health boards are happy to spend £1,000,000 providing treatment to 5 people for a year, why not provide therapy to hundreds of people in the community for the same money?
Frustrated and wanting to know the extent of the problem the trust was ignoring I tried one more time. A freedom of information request asked:
How much does the Health Board spend on residential treatment for people diagnosed with a personality disorder?
How many acute beds are utilised by such patients who are often stuck on acute wards?
This resulted in the response:
“Unfortunately, the Health Board is unable to respond to your request for information as we do not record data on personality disorders to this level of detail.”
“This level of detail” is an interesting phase. Another interpretation of this is “People we pay over and above £200,000 per year to receive treatment in private hospitals, we don’t even record what we are paying for”.
No Longer A Diagnosis of Exclusion was a document published 15 years ago highlighting the discrimination people diagnosed with personality disorder experienced within mental health services. 15 years on, despite an early call for better service provision, the Welsh dragon must hang its head at the ongoing systemic discrimination that goes on. This is a client group of whom 10% will die by suicide. The National Confidential Inquiry into Suicide and Homicide by people with a Mental Illness found that none of the 10% who died over the period of their study were receiving care that was consistent with NICE guidelines. Perhaps a high proportion were living in Wales where for some reason the NICE guidelines don’t apply or, for this client group, there is no will for trusts to implement them.
It was about 2 years ago that I asked the Welsh government to encourage trusts to follow the guidance it had written around personality disorder, let alone the NICE guidelines that apply across England and Wales. That 84% of English trusts have a specialist service compared to our 43% is shameful indeed. It would be less shameful if we saw it as a travesty to be addressed rather than an issue to contact individual trusts about if you are interested. I’ve asked Mind Cymru, Time to Change Wales, Hafal, Gofal and other groups with an influential voice to try to make some noise about the current exclusion of this client group in Wales. Perhaps with the British and Irish Group for the Study of Personality Disorder Conference coming to Cardiff in March, the Welsh Government might reassess it’s position on encouraging trusts to follow its own guidance. Perhaps it might start counting the amount of money spent on sending people to England for treatment they don’t want. Perhaps 15 years on it might reread No Longer A Diagnosis of Exclusion and consider that the difficulties experienced by those diagnosed with personality disorder have a legitimate place in our health service after all. I hope they do.
For a petition to be considered by the Welsh Assembly it needs to get 50 signatures. A petition that calls on the Welsh Government to implement the NICE guidelines for borderline personality disorder can be found HERE. Please sign.