Why Occupational Therapy Saved Ellie

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

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

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

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

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

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

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

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

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

You can hear more from Ellie here on this podcast 

Ellie talks lots of sense on twitter @elliewildbore

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

Learning to Be Me: Treatment in A Democratic Therapeutic Community

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

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

Keir

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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@shadesofsky is certainly worth a follow on twitter.

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

The State of ‘Personality Disorder’ Services in Wales

 March is upon us and this is my first blog of this year.  The main reason for that is that I’ve been desperately trying to get my dissertation finished and any writing that has not contributed to that 18,000 word total has felt like a betrayal.  Anyway, it’s handed in now and it’s time to cast my eyes upon the land of my fathers as the British and Irish Group for the Study of Personality Disorder Annual Conference is coming to Cardiff on March 20th.  With this in mind, it’s worth looking at how Wales responds to the needs of those diagnosed with personality disorder and how we compare to our neighbours on the other side of Offa’s Dyke.

In some ways, Wales has been quite pioneering in this field.  While the NICE guidelines for borderline personality disorder were published in 2009, Wales laid out its own blueprint for services in 2005 calling for the provision of specialist services that were integrated into current provision.  This was echoed in the NICE guidelines 4 years later.  With Welsh Government guidelines and the National Institute for Clinical Excellence requiring trusts to provide specialist services you would assume that Wales would have ploughed ahead.  You would be mistaken…

In 2017 Oliver Dale and his colleagues undertook a review of the provision of personality disorder services in England.  They found that 84% of trusts provided a specialist service.  In Cardiff in 2016, at a conference that gathered people from all the trusts in Wales, we very quickly replicated Dale’s study.  We found that less than half of Welsh trusts (3/7) had specialist services.  This was odd because 2 had services that were recognised as being very effective while areas that didn’t have specialist services talked about “the privatisation of PD” – how those diagnosed with a personality disorder were ‘not their business’ and were sent to expensive independent hospitals miles away.

Given the potential for specialist services to reduce the amount of people sent (and they go under the mental health act so they are literally sent) out of area I began to wonder why the Welsh Government wasn’t pushing trusts to follow NICE guidelines, or even its own guidelines.  I wrote to the Health Secretary asking if he could encourage trusts to follow his own and NICE guidelines or explain what they were doing that was better.  The disappointing response was:

“I hope you will understand that neither the Cabinet Secretary nor Welsh Government officials can intervene in health boards’ day-to-day operations”

This seems to me to be a preposterous answer.  Not least because one of the Welsh Health trusts is under ‘special measures’.  This is defined as “Current arrangements require significant change. Welsh Ministers may take intervention as set out in the NHS (Wales) Act 2006.” So in contrast to the answer I received, Ministers can not only ask why NICE guidelines are not being followed, they can take intervention to remedy it.  In this case they merely choose not to.

If over half of Welsh trusts were refusing to provide treatment for people with cancer I suspect someone at the assembly would pick up the phone.  If half of Welsh trusts declined to offer services to war veterans I’m convinced someone at the assembly would write a letter.  Over half of Welsh trusts are ignoring Welsh Government guidelines and NICE guidelines for people diagnosed with personality disorder and the government doesn’t even see it as within its remit to ask why.

We can have lots of ideas about why this might be.  We could say it’s because specialist services cost money, but the evidence is that they save money by reducing the need for expensive Out of Area placements.  We might conclude that personality disorder remains a diagnosis of exclusion in Wales and that for some reason this is acceptable.  Those in mental health tend not to shout very loud for their rights to be upheld.  Those diagnosed with personality disorder are probably the most stigmatised and excluded within mental health.  They are easy to ignore, easy to forget about and potentially paying £200,000 a year for them to be sent out of area is for some reason a better option than having to work with them at home. We can do better than this.

I wasn’t particularly satisfied with the answer I received, so I emailed again.  Part of my letter said:

“I take your point that neither the cabinet secretary nor government officials can intervene in the day to day running of health boards, but I wonder if the Welsh government could avoid being complicit in the exclusion of people diagnosed with personality disorder by strongly encouraging trusts to follow its own guidance.  My understanding is that NICE clinical guidelines continue to apply in Wales so I’m curious why it’s acceptable for less than half of Welsh trusts to follow them.  Given that trusts have been sued for not following NICE guidelines would it be prudent for the Welsh Government to call on trusts to justify why they are not following the guidelines rather than have to pay the legal bills when somebody opts to take matters to court?

I welcome the extra money that the Welsh Government has put into primary care however the clientele I was speaking of tend to manage their distress with potentially lethal self harm.  This is generally not seen as a primary care role and an absence of specialist services means that they get sent to largely unsuccessful out of area placements at a cost of around £200,000 a year.  This is £1,000,000 to treat 5 people where a specialist team at a fraction of the cost could provide better treatment without the necessity to send Welsh people to England”

My response to this one was equally uninspiring.  I was told that despite seeing no role for itself in highlighting that less than half of its trusts follow NICE guidelines for a particularly stigmatised group, the government had signed a pledge to reduce stigma.  I feel like actions might have spoken much louder than words here.

I was also told “The Welsh government’s main role is to set the strategic direction for health services and hold the NHS to account”.  For me ‘Strategic Direction’ might include writing guidance.  ‘Hold the NHS to account’ might include ensuring that guidance is followed.  I’m baffled why this is the case for some areas of health but not the realm of personality disorder.

The reply finished with “Health boards must regularly review their services to ensure they meet the needs of their resident population you may, therefore, wish to consider contacting the individual health boards directly on this matter” – my interpretation of this was “We have produced guidance, NICE has produced guidance, half of our trusts are ignoring it and if you want to know why, you can ask them yourself”.  Again, this seems an incredibly vague interpretation of setting strategic direction and holding the NHS to account.

I did an experiment and opted to contact one of the health boards to find out why they didn’t follow NICE guidelines.  They replied that Dialectical Behaviour Therapy was available in some areas and that intervention was offered through generic services.  “That’s not what I asked” I replied, “Where are the specialist services that NICE recommend?”  They replied something along the lines of “We know we’re not following the NICE guidelines and we’re working on it as a priority”.  Given that it’s 13 years on from the Welsh government guidance and 9 years from the NICE guidance you have to wonder how far down the list of priorities it must have been.  There is also the worrying response that “we need additional funding to create specialist services” when the reality is that a service could be paid for immediately by not sending one or two people out of area.  If the health boards are happy to spend £1,000,000 providing treatment to 5 people for a year, why not provide therapy to hundreds of people in the community for the same money?

Frustrated and wanting to know the extent of the problem the trust was ignoring I tried one more time.  A freedom of information request asked:

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

  2. How many acute beds are utilised by such patients who are often stuck on acute wards?

This resulted in the response:

“Unfortunately, the Health Board is unable to respond to your request for information as we do not record data on personality disorders to this level of detail.”

“This level of detail” is an interesting phase. Another interpretation of this is “People we pay over and above £200,000 per year to receive treatment in private hospitals, we don’t even record what we are paying for”.

No Longer A Diagnosis of Exclusion was a document published 15 years ago highlighting the discrimination people diagnosed with personality disorder experienced within mental health services.  15 years on, despite an early call for better service provision, the Welsh dragon must hang its head at the ongoing systemic discrimination that goes on.  This is a client group of whom 10% will die by suicide.  The National Confidential Inquiry into Suicide and Homicide by people with a Mental Illness found that none of the 10% who died over the period of their study were receiving care that was consistent with NICE guidelines.  Perhaps a high proportion were living in Wales where for some reason the NICE guidelines don’t apply or, for this client group, there is no will for trusts to implement them.

It was about 2 years ago that I asked the Welsh government to encourage trusts to follow the guidance it had written around personality disorder, let alone the NICE guidelines that apply across England and Wales.  That 84% of English trusts have a specialist service compared to our 43% is shameful indeed. It would be less shameful if we saw it as a travesty to be addressed rather than an issue to contact individual trusts about if you are interested.  I’ve asked Mind Cymru, Time to Change Wales, Hafal, Gofal and other groups with an influential voice to try to make some noise about the current exclusion of this client group in Wales.  Perhaps with the British and Irish Group for the Study of Personality Disorder Conference coming to Cardiff in March, the Welsh Government might reassess it’s position on encouraging trusts to follow its own guidance.  Perhaps it might start counting the amount of money spent on sending people to England for treatment they don’t want.  Perhaps 15 years on it might reread No Longer A Diagnosis of Exclusion and consider that the difficulties experienced by those diagnosed with personality disorder have a legitimate place in our health service after all. I hope they do.

For a petition to be considered by the Welsh Assembly it needs to get 50 signatures.  A petition that calls on the Welsh Government to implement the NICE guidelines for borderline personality disorder can be found HERE.  Please sign.

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