Forgetting inconvenient truths: A way to keep thinking.

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

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

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

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

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

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

 

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

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

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

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

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

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

 

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

The State of ‘Personality Disorder’ Services in Wales

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This resulted in the response:

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

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

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

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

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

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

What Does an Occupational Therapist do in Mental Health? #OTWeek 2019

I wrote this 2 years ago but this seems a good time to dig it out again…I get asked this question a lot.  It was asked more often when I actually had Occupational Therapist as part of my job title, but it’s still asked fairly regularly and often by people who are Occupational Therapists themselves.  As it’s OT week from today (November 6th), I’m going to spell out what my understanding of OT in mental health is and spend a bit of time talking about what I do.

Keir provides Training, Consultancy, Supervision and Therapy around people with complex mental health problems via BeamConsultancy.co.uk

To understand what OTs do in mental health, we need to have an understanding of what OTs do in general.  Whenever I tell people I’m an Occupational Therapist, unless they’ve seen one they generally assume I’m ‘something to do with backs’ or that I work in Human Resources. This normally leads to me disabusing them of these notions and beginning the following tirade…

We see humans as having an inherent need to act – to do things.  We can break down these actions (or occupations) into what we want to do, what we need to do and the skills we need to be able to do them.  While there will always be some overlap, an example might be that I WANT to play the guitar and I NEED to be able to go to the toilet. There are also a range of (physical, cognitive, emotional…) SKILLS that I need, to be able to manage both of these occupations.  A big factor that impacts on my ability to do these things is the ENVIRONMENT around me.  If my social environment doesn’t like the sound of bad guitar players, my progress will be hampered.  The environment will hinder my functioning.  If my toilet is upstairs and I can’t use my legs then again, the environment is not helping me to do what I need.

OTs help people to identify the things they want and need to do in their lives, identify areas where skills development is needed and assess how the environment helps or hinders people in achieving their goals.

In mental health the process is exactly the same.  I don’t think diagnosis is particularly important when we’re thinking about this, but I’m going to use it in some examples just so we have a shared understanding.

If an Occupational Therapist comes across someone with depression, the drive to do what they want and need to do will have plummeted.  They will tend to isolate themselves, thus missing out on the things that give them a sense of accomplishment (from what needs to be done) and a sense of pleasure (from what they want to do).  If we use ideas from CBT, the client loses the skill of being able to rationally weigh up their thoughts and overly identifies with negative thoughts about themselves, others and the future.   An Occupational Therapist might identify the priorities of what the client wants and needs to do and establish what gets in the way.  We can then support the client to use the energy and motivation that they have to perform the activities that will give the most reward.  We can help the client build skills in recognising and challenging negative thoughts.  We can adapt the environment so that there are more opportunities for achieving a sense of reward and accomplishment.  We can also support our colleagues by letting them know how their interventions affect the clients functioning. For example, after changes in medication, we can do something the client finds meaningful and observe changes in concentration, cognitive ability, body language, communication skills… all the things that don’t depend on symptoms, but whether the client is more or less able to do what they want and need to do.  This observation and assessment of changes in how the client is able to function can be useful to everyone involved.  I’d argue it’s more important than a descriptive account of what some has been doing.   The OT is able to describe what has increased or decreased that has allowed/prevented the person doing what they’d set out to do.

Taking Schizophrenia as another example, at times someone with this diagnosis is likely to have things going on in their mind that make focus and concentration pretty difficult.  Here we are again following the same process as above.   In this case the client’s life may well have started to deviate markedly from the lives of their peers.  They might leave school, become isolated and find themselves in situations and ways of being that result in them being ostracised by society. OTs would again look at what the client wants and needs to do and what gets in the way.  We might teach ways to drown out or cope with voices and how changes in the environment (smaller classroom sizes?, shopping at midnight?) to allow the client to do what they want and need to.  As the medication for schizophrenia can cause side effects some feel are worse that the condition itself, we would be closely looking at how other treatments affect function.  We might argue on behalf of the client that a small reduction in voices isn’t worth a 16 hour sleep cycle, impotence and an extra 4 stone.

You will tend to see Occupational Therapists doing activities with people.  This is because we think this is the best way to help people make changes.  People will engage more in an activity that they find meaningful than they will in some random task that isn’t part of their life (“I’d like you to meditate on this raisin???”). It might look like we are just doing things that are fun.  We might well be, but the purpose of the activity is to effect change in some way.  It might be the building of social skills, or exposure to something that is disproportionately feared. It might also be challenging a sense that nothing can be accomplished.  If we are doing our jobs properly, there is always a purpose.  I won’t go as far as to say that Occupational Therapy is never entertaining, but if we are only entertaining then something has gone seriously wrong with us and the system around us.

Some Frustrations with OT in Mental Health

But Can They Cook?

My colleagues are always asking if someone can cook.  We seem to get obsessed with it.  I see many OTs choosing to spend time teaching clients to make curry, going to the supermarket to buy healthy things and making sure they wash their hands enough times in the therapeutic kitchen.  Unless my client is desperate to be able to cook, I genuinely don’t care whether they can or not.  “Can they feed themselves?” is a much more pertinent question and we need to respect some of the choices our clients might make in this area, rather than enforcing some faux middle class dining etiquette upon them.  I once worked with one poor man who wasn’t going to be discharged until he could cook, when he knew full well he wouldn’t use the kitchen for anything other than making tea and toast once he got home.

I Think I’ll Ask a Nurse to Handle This

I’ve always hated other staff suggesting that critical incident decision making and complex risk management is somehow not my business.  I’ve loathed it when senior Occupational Therapists have said the same.  I’ve been in meetings where a Nurse has fed back about John’s suicidal urges, a Doctor has described his life threatening self-harm and the OT has said he came to the walking group and is eating his 5 a day.  I’ve always felt that when the challenges to mental health are so strong that people lose all boundaries, those are the times OTs should be most interested and involved.  That is when their functioning is most severely compromised. The idea that we wait until people are ‘well enough to come to group’ can make us seem (and possibly feel) useless.

 

The Primary Care Team in Secondary Mental Health Services

It fits with the above point, but I often saw the OTs getting dragged into (with full throated encouragement by their managers) short term pieces of work that barely gave time to form a relationship.  These seemed to set the clients up to fail.

“A 12 year history of anxiety?  6 weeks anxiety management for you.”

“Not left the house for a year? 12 weeks of graded exposure to solve that issue.”

So ridiculous.  I wanted to get in and help people with lifetime issues make changes over the long term.  I couldn’t articulate it at the time, but I spent hours modelling that someone could be non-judgemental and reliable, because this was the basis for everything else we might ever do together.  In more OT terms, I changed the client’s environment by modelling another way that people could ‘be’ around them.  To my Managers, it looked like it didn’t quite fit with the plan to provide some input for 6 weeks and move on.

When OTs work well, they don’t manage symptoms, they help people live.  Just like physical OTs, in Mental Health we identify and tackle what gets in the way of a life worth living.

Anyway, enough of what other OTs do.  Let’s talk about me.  For the past 8 years I’ve worked with people who have been taught that others are untrustworthy and who cope by self-harming to a degree that could well kill them. They tend to get given the label of Borderline Personality Disorder which is often very unhelpful to them and also to the staff that they work with.

In terms of the usual OT process, this can be a bit tricky.  As people are chronically suicidal and genuinely see death as a better option than living with their pain, much of what they want is simply to get by day by day.  In terms of what they want, it’s often mainly to escape from the pain. I think humans have an intrinsic need to connect with others and because the people I work with have had such a poor experience of other humans, attempts to connect can be fraught with danger.  They may have had to hurt themselves to feel they deserve help from others.  They may need to place themselves in danger so that others will show they care.  All the skills they have were designed to cope with a dangerous environment when they were defenceless children, so they don’t work anywhere near as well when the threats are significantly reduced. While they use the skills they have to manage every day as it comes, they can’t plan for the future (they feel there is no future) so they get stuck in their current situations.

My main intervention in work is trying to change the environment around people.  This often involves recognising that for them, restrictive environments like acute wards often result in decreased functioning and increased life threatening behaviour. Once we both understand why this occurs we can then help the organisation to react in a way that doesn’t replicate some of the punishing and coercive experiences the client has had in the past.  In English, this means I spot when hospital is unhelpful and try to get people out as soon as possible.  This generally results in a significantly higher quality of life for the client, as well as the organisation saving hundreds of thousands of pounds.  I will often spend time with clients to try to understand how self-harm fits into a framework of what they want and need to do.  Once it makes sense, we can help the organisation respond to that knowledge rather than to its own interpretation. For example, staff are cold towards someone ‘who self-harms to get attention’, but are warmer towards someone who experiences such crushing numbness then needs to feel pain just so that they can feel something.  I also train other staff to understand how past experiences are played out in current ways of coping, so that they react in a more thoughtful, caring way and in a way that promotes the client’s functioning.

My favourite way of offering therapy to people is via a therapeutic community.  You can hear me bang on about it here (pump up the volume or it’s a bit quiet)) but it basically gives people opportunity to practice relevant skills while being cared for and providing care to each other.  If you ever get the chance to experience working in this way you should snap it up.

So all the above is some of what OTs do in mental health.  Having said that, it might be what I think OTs should do in mental health.  And actually, having said that, some might look at me and wonder if I’m actually still being an OT.  I think I am.  I don’t see diagnosis and instead I look at how people are inhibited from what they want and need to do.  This is a useful mind-set to take into all aspects of health services, as it keeps us focusing on people as individuals rather than clusters and diagnoses.  OTs can bring much into debates about healthcare and because we are a relatively small group, we need to shout a bit louder about what we do and ensure that what we do is useful.

I hope that gives you an idea of what all the OTs in the Psychiatric inpatient Wards, Community Teams and all the specialisms in between are doing.  If might look like we’re just having fun.  And it should be fun.  But it’s also hard.  We work with people who don’t have the lives they want and we help them to get there.

Next time the OT emerges with a cake from the kitchen, remember that we were looking at all the physical, cognitive and interpersonal skills that went into its creation and in a sense we didn’t care whether the cake got made or not.  Seeing as it normally does get made, let’s blow out some candles on it now.  Happy OT Week, now go tell a colleague what we do.

Keir provides Training, Consultancy, Supervision and Therapy around people with complex mental health problems via BeamConsultancy.co.uk

            Huge thanks for input from to Anne Clarkin Occupational Therapist, Lindsay Rook, Personality Disorder Specialist Practitioner, Devon Partnership NHS Trust and a last minute piece of emergency proof reading from Kelly Johnston Occupational Therapist.