"Specialist" Placements - How Special?
This week brings with it the conference of the British and Irish Group for the Study of Personality Disorder (BIGSPD) . BIGSPD gets a lot of criticism as an organisation but I’m going to suggest that despite it’s flaws, it’s a democratic organisation with substantially more co-production than most. When I say most, I’m not aware of any organisation that involves the recipients of services to the same extent. BIGSPD has a lived experience co-president and people with lived experience make up around half of the executive committee, which Hollie and I both serve on.
It’s likely that we’re going to talk to a few people about “specialist” out of area placements for people who recurrently self harm and feel suicidal this week, so we wanted to make sure that some of the evidence that suggests “specialist” placements might be a poor option is at the top of our blog page.
In this blog we will be looking at the idea of a specialist placement to provide therapy and keep people safe, and float the idea that they aren’t specialist, the therapy is far from ideal and that they do not keep people safe. Some would say that they make things worse.
The Use of a “Specialist Placement” is contrary to all current quality guidelines
It is a fact that the use of compulsory placements is against the NICE guidelines and the recommendations of the National Confidential Inquiry Into Suicide and Self Harm. NICE tell us to:
“ensure that when, in extreme circumstances, compulsory treatment is used, management on a voluntary basis is resumed at the earliest opportunity”. This is entirely incompatible with the decision to compel people to go to a unit far from home for long period. NICE also tells us not to think about the possible harms of admission, but the “likely harm that may result”.
The NCISSH words their advice a bit stronger. They tell us “Admission to inpatient care should be avoided where possible”. They highlight out of area placements as an increased risk factor for suicide, leading to NICE advising“For people admitted to hospital outside the area in which they live, take into account the higher risk of suicide after discharge”.
Specialist Placements are not Special
Some areas of inpatient psychiatry have quality standards which mean units can be accredited as specialist units. No such system exists in the world of suicide and self-harm, nor in the field of “personality disorder”. As such, a unit becomes specialist by telling the world that it is special. The worst inpatient unit in the UK could change its title to specialist personality disorder unit tomorrow without breaking any rule or regulation. While the Care Quality Commission do inspect the locked rehab units that claim to be specialist, they are inspected as generic locked rehabilitation wards. Their claims of specialism are not interrogated.
Within this field, people are often sent to “specialist” units to receive therapy. The one most commonly offered is Dialectical Behaviour Therapy. DBT was created by Marsha Linehan, someone who herself survived severe self-harm, suicide attempts and prolonged psychiatric admissions. In the DBT manual, she writes “There is no empirical evidence that whatsoever that involuntary intervention or psychiatric hospitalisation decreases suicide risk in any way”. She adds that the aim of DBT is to work with people when in crisis, not to remove people from the environment where they live. When doing the comprehensive DBT as recommended in the NICE guidelines, patients admitted to hospital will need to be able to talk their way out in order to continue to access therapy. The therapist will not continue therapy on the ward. Obviously compulsory treatment in a locked environment is a run and a jump from the DBT with the evidence base that Linehan described and NICE recommend. NICE also recommends being offered a choice of therapies rather than compulsory DBT. We rarely see one therapy offered adherently by qualified clinicians, let alone a choice of therapies.
There is no study describing the therapy available in “specialist” units. Part of the reason we started Beam was because we visited a number of units and found the therapy on offer was primarily provided by unqualified staff. When we meet with staff who work in ‘specialist’ units, they typically described how they have never received any specialist training. One of the most uncomfortable training sessions we ever took part in was for a large provider where the people present seemed totally disinterested. They played on their phones through most of it and that would have been a problem if the ward manager had seen them, had he not been doing the same himself. When we asked why people were so distant they explained that they used to be a rehab ward and had been told they were becoming a specialist “PD” ward the following month. They seemed to exude a contempt for the people who were given a personality disorder diagnosis. It was a job no one had applied for, that no one wanted and we pitied the people who would be admitted to that “specialist” environment.
The Radio 4 documentary “The Forgotten Patients” describes a number of experiences in “specialist” units. One of the key moments for us was a lead member of staff in not only a “specialist” unit, but a centre of excellence, describing how none of the staff there had any specialist training. This could be an aberration but it fits 100% with our experience.
What does “specialist” prescribing look like?
The NICE guidelines tell us “Antipsychotic drugs should not be used for the medium- and long-term treatment of borderline personality disorder”. Our experience is that this guideline is routinely ignored in units that brand themselves as specialist. We wrote the paper Clozapine Concerns after being shocked at the use of long term powerful antipsychotics in “specialist units” that we very rarely see in the community. While the only study we’re aware of that surveyed Drs opinions on the use of clozapine found that the majority disapproved, there is a lone voice calling for the use of clozapine to be increased. That voice comes from a specialist unit. There is a study describing positive experiences by patients taking clozapine for “BPD”. This study was carried out in a “specialist” unit by the people who were providing the care.
Hospital keeps people safe
“They need to be sent there to keep them safe” is something we hear a lot. We have covered how placements increase the risk of suicide and how the creator of DBT is emphatic there is no evidence for their use to reduce it. Sadly some people we know who were sent to placements against their will to be kept safe never returned. We have no intention of singling out one provider but these headlines reveal the nonsense of the ”to keep them safe” policy.
In summary, the “specialist” placements offer care that arguably diverges significantly from the NICE guidelines. BIGSPDs own report describes some horrific individual experiences as well as significant concerns about this area of practice. It is entirely possible that when people have the most severe difficulties, a specialist response is to jettison what is seen as quality treatment and do things differently out of necessity. It could also be argued that maverick practices thrive in closed institutions with reduced peer scrutiny and restricted family access.
If you watch Panorama you’ll know that poor treatment of people who recurrently self harm and feel suicidal is not unique to the private sector. We both walked away from the NHS when our concerns about the harms being done in the name of care couldn’t be heard. The difference is that the NHS keeps people detained for significantly less time and doesn’t give out leaflets with “specialist” written all over them.
We would like to talk to you about alternatives to “specialist” placements. We can talk about how the last 5 people we worked with who were seen as NEEDING a specialist placement were supported to live in the community instead. They had 1250 bed days between them in the year before we supported their discharge. 2 in the year after. That’s a reduction in bed days of over 98%.
You might notice that we are criticising a specialist service while claiming to be one ourselves. Between us we have qualifications in delivering and experience of receiving Integrative Counselling, DBT, SCM, Occupational Therapy, CBT, Group Analysis, primary care therapy, CMHT, Home Treatment, peer support, hearing voices groups, inpatient care and an MSc in Personality Disorder. We are part of a genuinely co-produced service. We both sit on the executive for BIGSPD and the Royal Collage of Psychiatrists Expert Reference Group for Stigma, Labelling and ‘Personality Disorder’. While we have quoted some facts and provided some links, we’re asking you to make a judgement on what narrative to believe.
Providers of “specialist” services have been invited to debate the ethics of their mode of treatment with us at previous conferences. They have declined. We have not. There are plenty of opportunities to discuss all the above with representatives of “specialist” services in the foyer at the conference and we invite you to talk to us as well. You can decide which narrative sounds more plausible.
If you want to try to avoid placements either by us doing therapy, training or thinking with your staff, do get in touch. You can use the contact form on the site, message us on twitter, facebook or linkedin or if you’re at the conference, shout as we walk past you.
We are holding a facilitated day around Avoiding Placements In central Manchester on Wednesday 13th September
Click here to book a place
Keir & Hollie
Unspeakable Thoughts: When staff think “If you were going to kill yourself you’d have done it by now”
Trigger warning – Suicide, Dismissive ‘care’ This piece was originally published in Asylum magazine but has been on my mind for the past few days. Hope it’s useful.
The phrase “If you were going to kill yourself you’d have done it by now” has popped into my head a few times over the years. Mostly, when I was first starting out in the community mental health team and I had my first taste of doing ‘duty’. ‘Duty’ (I have no idea where this name comes from) involved being in the office and fending off phone calls; seeing someone who pitched up at the building; or leaping into a car to go on an emergency visit. It was here that I first came across people who were recurrently suicidal.
The first time I listened to a detailed description of how someone had prepared their method of suicide and was now phoning me because it was in their care plan to ask for help, I was terrified. I felt it was my duty to keep them safe. I suggested solutions, I reassured, I tried to instil hope. I probably suggested hot baths and milky drinks. All to no avail. I remember the first conversation ending with no reassurance that they could stay safe, so I sent an ambulance round and crossed my fingers. They were suicidal. I was the last person to speak to them. Could I live with myself if they died? Would I be blamed for not doing better or not doing enough? I spent the weekend worried I’d find out they were dead on Monday and when all seemed well on the Monday morning I breathed a sigh of relief.
Fast forward 3 years and I’d probably had the same conversation with the same person 50 times. When I heard their voice on the phone I started to feel less compassion and more annoyance. Rather than my first novel experience of trying to save someone, I think I was frustrated, bored and eager to get the conversation finished. My colleagues supported me by reassuring me this person would never kill themselves and while we would occasionally still send ambulances if ‘the right words’ came out in the conversation, it was always out of a sense of ticking boxes rather than doing anything that might be useful.
During this period that I was fully immersed in stigmatising attitudes around ‘personality disorder’. I remember my amusement when someone told me they were putting on a course for people with Borderline Personality Disorder to teach them how to kill themselves properly. The ‘joke’ here being that despite repeated attempts, by some chance people always live. The implication is that the statement “I’m going to kill myself” has no value when uttered by someone with that diagnosis despite the 1 in 10 suicide rate.
As I’ve developed within mental health services I’ve found myself working more and more with people who are recurrently suicidal. They have the misfortune to be supported by people who have attitudes similar to those I had in the past. Those staff still harbour the idea that “If you were going to kill yourself you’d have done it by now”. It either stays in the head of the practitioner (and gets acted out in more subtle ways of dismissal) or said openly to insult or attack. Neither of these are helpful and over time I’ve learned that being able to articulate a more empathic version of that view is essential to be able to work with those who feel life isn’t worth living.
I think we need to see suicidality (a word that I use a lot but which every spell check hates) as being on a spectrum. People are rarely 100% suicidal or 100% loving every moment life sends. People exist somewhere in between. For me, someone saying they feel suicidal is the beginning of a conversation.
Because this conversation is happening, we can assume that someone isn’t at the 100% stage. I’ve listened to people tell me with absolute clarity, the method they will use to end their life once I have left them. 10 years ago I’d have been furious at them for ‘putting me in this position’ and ‘knowing I would have to react’. I can now be curious about why someone would say these exact words to me. This can lead us to a discussion about my anticipated reaction and the pros and cons of this for them.
This might sound invalidating but its important to keep in mind here is that telling someone you are suicidal might be a way of keeping yourself safe. This is to be celebrated. All people working in mental health want those in their care to live. We could consider being grateful when someone says they are suicidal because in some way, it’s an invitation to help. It might not be the most effective invitation, but it is an invitation none the less. We can explore what’s going on in more detail, rather than ignoring everything in pursuit of someone saying they can keep themselves safe until the next person comes along.
This might sound invalidating too, but even attempting suicide might be a way of inviting help.
For me attempting suicide and not dying is something to celebrate. Often something will have got in the way which was, to an extent, predictable. Not always, but where these occasions occur, they are again an opportunity to be curious and something to be joyful for. Some force, conscious or unconscious has intervened to keep them safe. I suppose some examples of these are people who take “small” overdoses (if such a thing exists), people who begin their act after saying goodbye in a way that will alert people, or do something that is likely to attract attention (e.g. standing at the bridge, walking down the tracks). In here, somewhere, is a communication about distress that gets in the way of dying.
The trap (which I have often fallen into myself) is seeing all this as some ploy to ensnare an unwary clinician. Just because someone has taken 40 overdoses with the stated intention of dying doesn’t mean they’re only saying it to torture you. It’s a chance to wonder about what is happening in that pattern. Whatever it is, is useful in some way. Equally, it’s ok to ask what has kept someone alive. I’ll often preface this with “This might sound like I’m trying to catch you out or trick you, but I’m really interested”.
This might be massive invalidation number 3, but it’s important is to hold onto the idea that what we say isn’t always what we mean. If you disagree, consider how often you’ve told people you’re ‘alright’ when really your world has collapsed. I’ve worked with many people who have learned that merely asking for help brings nothing. I’ve worked with people whose life has taught them that if you don’t use volume 11 then you won’t get heard. I’ve worked with people whose life has taught them that only actions make people respond.
My argument is that we should always take people seriously. This does not mean that we take them literally. I’ve seen people who have wanted to be dead in the community for the past 5 years be kept on a hospital ward because they wanted to be dead. It made the staff feel better. It meant the person lived in hell. Sadly, a conviction that death is better than life is very common for people who have lived through shit. We generally compound this if we respond to their words with dismissal or restriction.
Curiosity about why suicidal people are still alive is an essential part of work within mental health. It allows us to expose strengths that are difficult to articulate. It can let us know what is going on in the minds of those we care for. It can prevent us doing things that are deeply unhelpful.
A colleague now passed away once described the work of the CMHT to me. “We will get a barn full of notifications that people are suicidal every year. Within that barn is a desk. That desk has a drawer. In that drawer is an envelope and in that envelope is a piece of paper with a few names on. The work is trying to sift through the barn to find the people who are going to kill themselves”. I identify a lot with this analogy, but I’d add some research to it as well. We can predict those who are at high risk of suicide, but we are useless at predicting which high risk people will go on to die. We risk a brutal system of ‘care’ for hundreds of people to save one life. This might be a price worth paying, but it might not be the view of those who lose their liberty.
We work in a system that demands accurate risk assessment – a task that no one has been able to manage so far. Until our organisational and political systems recognise this, our workers will be filled with anxiety. Anxious workers dismiss people or restrict lives. The work isn’t easy, but we will serve people better if we can thoughtfully voice the thoughts in our heads rather than having to act them out. We will always be more helpful if we’re honest with people that we want to trust us.
Keir provides training, consultation and therapy around complex mental health problems through beamconsultancy.co.uk
* There was someone I only ever met on twitter. She was very kind to me and very supportive of a blog I wrote called Why Are People With Personality Disorder So Manipulative? We talked of a follow up around Why Are People With Personality Disorder So Attention Seeking? This isn’t that, but I think it touches on some of the issues that mean that accusation gets thrown around. I hope she would have approved of this.
* This was originally part of a co-produced workshop delivered at the BIGSPD conference in 2019. It was originally Published in Asylum Magazine Vol 26 Issue 3.
What do the proposed changes to the mental health act mean for "BPD/EUPD"?
There’s two things to get clear before I leap into this. The first is that while I’m not a fan of diagnosis I tend to work with people who use self harm as a way of coping, recurrently feel life is not worth living and who have had multiple experiences where people who are supposed to help have hurt them. Other people give them a diagnosis of BPD/EUPD but its not a way of understanding that I find useful.
Secondly….I had such high hopes for the changes to the mental health act. Why? Because in his review of the MHA, Sir Simon Wessely identified the fear that mental health staff experience and how that impacts on their use of restrictive practice. I wrote a paper with Rob Poole and Catherine Robinson a few years back talking about how putting people who self harmed and felt suicidal into private Out of Area units was a way of the NHS managing risk to itself. The risk would be outsourced to a private company and if anything happened to a patient then it was on someone else’s patch and the NHS remained blame free. You can read it here…
I want to expand it bit on what the review of the MHA identified. Under the title of Fear it states “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”
Under Risk aversion and its consequences we read:
“One of the things that I initially found baffling was how to explain the inexorable rise of detentions under the Mental Health Act, something that has been happening for many years…But there is another issue, difficult to pin down in statistics, but which has played a substantial role in this rise, and contributes to some of problems that we report in creating and sustaining a genuinely therapeutic atmosphere for those detained. It is the issue of risk and risk aversion”
With the he DSPD program “The initial optimism felt in some quarters has largely given way to disappointment as it became clear that most were just being detained for the protection of the public, and that better (and cheaper) alternatives were available. A similar but not identical argument is raised now, with justification, for the fact 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”
We move on to the topic of Fear and risk aversion
“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.
“a pressure developed affecting all levels of staff, managerial through to clinical, to 'manage risk', which was the intended consequence of this shift in policy. But this soon slipped into 'managing risk to themselves'”. And Szmukler continues, this is understandable, since the consequences of a faulty risk assessment were and continue to be “quite horrendous... protracted investigations and scrutiny of the case, blame, negative publicity, formal inquiries, and scores of recommendations requiring implementation”
It is easy to see how this would have been reflected in a steadily rising number of detentions, as professionals of all kinds became increasingly risk averse, and more likely to make coercive interventions that at least in the short term were likely to reduce the risk of an early dreadful outcome – such as serious or fatal harm to a patient or a member of the public.
Some of the consequences are obvious – namely the rising rate of detentions. Others are not so obvious, but can be seen in the myriad reports we have from service users of unnecessary restrictions imposed upon them, usually justified in the name of safety. We are not talking about appropriately mandatory measures such as ensuring the absence of ligature points, but others that seem at best exaggerated or disproportionate and at worst petty, accompanied by statements such as “you never know what might happen” and “we just can’t take the risk”.
But we cannot act on our own. If we are seriously to tackle the problem of risk aversion action must proceed across the board – there is little point in professionals deciding to accept more risk if the courts, regulators, media and others do the opposite. Intellectually everyone accepts that there is no such thing as zero risk – even if you detained every person with any mental disorder for prolonged periods of time, an absurd proposition, you would still not eliminate it. Any probability judgement must be wrong sometimes, and that should not automatically mean that this is a fault, let alone negligence. But the dynamics of the risk society seem to be running in the opposite direction, accelerated by legal judgements such as the one handed down by the Supreme Court in the tragic case of Melanie Rabone8. As the President of the Supreme Court remarked recently, this judgement “where the hospital was held liable for the death of an informal patient who killed herself whilst on weekend leave of absence is bound to make practitioners less inclined to use informal care”. In other words to increase, not decrease, the usage of the MHA.”
So after reading Sir Simon Wessley’s recognition of the existence and impact of fear in our mental health services I was looking forward to seeing how this fear would be acknowledged and tackled going forward. How could we support clinicians to think compassionately rather than having to look over their shoulder? How could people do the right thing rather than be seen to do the right thing? How could we move away from the appalling situation where patients lose their liberty to assuage the anxieties of frightened clinicians and organisations?
The proposed changes do not mention fear. This seems like a terrible missed opportunity. It might be politically unhealthy to challenge the stereotype of the caring and reflective mental health practitioner, but we don’t do anyone any favours when we ignore the huge numbers of unfilled posts, the increasing demands on services, rising incidences of self-harm and the human cost of seeing a number of fires burning and having to choose which fires to put out and which to leave.
With that rant over, lets have a look at some of the changes most relevant to those I work with and just as a reminder, they tend to be people who use self harm to cope, often feel suicidal and have understandable difficulties trusting others.
Grounds for detention
Here the old mantra of “risk of harm to self or others” moves to risk of “Serious harm”. Now there isn’t a definition of serious harm in the document but on another part of the government website it states:
“The risk of serious harm is the likelihood of a life-threatening and/or traumatic event. Recovery, whether physical or psychological, can be expected to be difficult or impossible.”
Now for those I work with, most of the ways that they use to cope would fall under that definition. This would mean that most of the people I’ve worked with in the community are liable for detention.
It adds something new to the thoughts about risk – “given the nature, degree and likelihood of the harm, and how soon it would occur, the patient ought to be so detained”
Here I find that when clinicians are frightened, they think “it’s happened once, it could happen again at any time”. I don’t see this as providing much protection for those I see detained.
For section 3 there are some extra bits
(b) serious harm may be caused to the health or safety of the patient or of another person unless the patient receives medical treatment,
(c) it is necessary, given the nature, degree and likelihood of the harm, and how soon it would occur, for the patient to receive medical treatment,
(d) the necessary treatment cannot be provided unless the patient is detained under this Act, and
(e) appropriate medical treatment is available for the patient.”
The difficulty here is that “medical treatment” is often a rather flowery euphemism for “stopping people hurting themselves”. It tends to involve people being watched, sedated and restrained. Where this brings about a period of respite and stability then we can all celebrate but too often I see it lead to a huge escalation in frequency and severity of risk. This new presentation in the face of restriction then becomes the justification for ongoing restriction. I don’t see these changes making a difference for the people I see stuck in “specialist” private units where a weekly DBT group run by an unqualified trainee is lauded as appropriate treatment
“Medical treatment” is something that
1. has a reasonable prospect of alleviating, or preventing the worsening of, the disorder or one or more of its symptoms or manifestations, and
(ii) is appropriate in the person’s case;
(b) references to medical treatment, in relation to mental disorder, are references to medical treatment the purpose of which is to alleviate, or prevent a worsening of, the disorder or one or more of its symptoms or manifestations.”;
I still think that “we’re stopping them killing themselves” will justify all the above, regardless of how dangerous people are to themselves now compared to when they were admitted.
In summary, I don’t think these changes will benefit those I work with. There are some things I do like. People are to be consulted more and advance directives given more weight. I still think there’s ways around this but there’s more hoops to jump through to establish consent. I like that the Nearest Relative is replaced by a nominated person and that they can apply for people to be discharged more often. I don’t see what will stop a hospital getting fed up of them any more than the NR but at least there’s more choice.
The obvious change for the better is that people can apply for their release more often. While I think all the above does nothing to tackle the risk aversion, at least people get to roll the dice more regularly.
I’ve worked with people who sometimes did dangerous things in the community and frequently lethal things in hospital. On occasion I’ve been unable to convince others that hospital won’t keep people safe and learned of the patient dying in a restrictive setting. Other than the more frequent review from the tribunal, I don’t think the draft changes will help them. The implication of the review of the mental health act (which had “Reducing Compulsion” in it’s title) was that restriction was being used too often. The outcome of almost every serious incident review and coroners enquiry I’m aware of is that restriction isn’t used enough. There is a clash between the right to life and the right to freedom and we’ll never be able to manage this clash while pretending risk assessment is accurate and that zero suicide can be achieved. The best thing that staff can do to protect themselves is use high amounts of restriction and until we recognise this this, we can do nothing to address it.
The proposed mental health bill does nothing to address the levels of fear in clinicians that the review identified as contributing to increased restriction. Staff will remain afraid. Exporting patients to under regulated private units at around £300k a year will continue to be a way to manage individual and organisation anxiety. The cost to the patients themselves will be much higher.
Keir is the Clinical Lead of Beam Consultancy, offering therapy, training and consultation to help avoid prolonged hospitalisation of those who recurrently self harm and feel suicidal.
Many thanks to Tony @asifamhp for reading through a draft for me. :-)
We have been busy...
It’s been a busy few months for us and we just wanted to collate some of the things that we have been involved in that highlight our concerns about private Out of Area Placements for those with recurrent suicidality and self harm. While it might seem a bit self indulgent, we do want to be the loudest voices arguing for and pragmatically working for the reduction of private hospital placements for those we are committed to working with. The links should take you to all the material.
Hollie had an article published in Mental Health Practice entitled Living With Borderline Personality Disorder. It describes the change in ‘care’ and staff attitudes once difficulties are understood as a disordered personality.
This report (where Keir was one of the authors) was put together by the British and Irish Group for the Study of Personality Disorder and it details a number of concerns about the use of "specialist" placements and their quality. In the forward Sir Norman Lamb states:
"The truth is that we are spending vast sums of public money on private institutions which have a clear incentive to keep the beds occupied. This amounts to an enduring and unacceptable breach of people’s human rights"
In the same week the report was released, the BBC released a news story and documentary that raised further concerns about how people are treated within units that describe themselves as specialist. Keir was featured in both. The items that we see most regularly in our work that were highlighted in the program included
patients whose risk of suicide escalated on admission being compelled to remain in the environments where they were most dangerous to themselves
staff talking about how they had no specialist training for working on a unit that claimed to be specialist.
Keir talked about the issues involved in "specialist" placements on the BBC here
Keir and Hollie contributed to this documentary about “BPD” alongside experts such as Dan Warrender and Peter Kinderman
Keir argued that inpatient treatment for those diagnosed with “personality disorder” has been privatised here
Keir and Hollie (along with Dan Warrender) published an article describing their concerns about the use of Clozapine for the people they work with in private units. It was written after they (we? I’m getting myself in a muddle here) wanted to quote something in the scientific literature describing the concerns around ‘clozapine for BPD’ and nothing existed. Something exists now.
Keir tried to highlight BPD awareness week and ended up commenting on the boost the Heard/Depp trial has given to the stigma around BPD here in the Independent.
If it gets annoying that we bang on about this all the time, we will be delighted when the voices calling for this change get louder and more diverse. We will be looking for people to help bring about change in one of our workshops at this years British and Irish Group for the Study of Personality Disorder Conference. We’re also doing sessions on the criminalisation of suicide and how to move on if we want to abandoned the construct of personality disorder.
Beam was founded after we couldn't see any more traumatised young (predominantly) women sent miles from home to receive care that seemed unrecognisable from what NICE recommend. While all the above resources may seem self serving, we are passionate about helping patients and staff feel more supported in their local communities. We estimate we save NHS services around £200,000 for each person we work with.
We'd love to talk to you more but if not, we hope you can consider the above resources either when thinking about a patient for who a "specialist" placement has been suggested or when reviewing people who are currently placed.
Closed Cultures and "Specialist" personality Disorder Units
The Care Quality Commission has recently published its annual State of Care report looking at how health and social care services are functioning. It’s interesting to see their concern about Closed Cultures – “a poor culture that can lead to harm, including human rights breaches such as abuse”
It begins by a quote from someone saying :
“It felt like all my experiences, past education, training and work counted for nothing because I was the one who was mentally ill and they were the ‘professionals”
highlighting how dissent can be pathologized in such cultures.
It goes on to highlight particular features
incidents of abuse and restrictive practice
issues with staff competence and training
cover-up culture
lack of leadership and management oversight
poor-quality care generally
poor-quality reporting.
It might not surprise anyone who has read anything I’ve ever written to hear that the above criteria are to be found in almost every private unit I have ever experienced that claims to specialise in working with Personality Disorder. Lets have a look through them…
Incidents of abuse and restrictive practice
The practice is rife. Whether it was someone who only self-harmed in a particular location being confined to that location due to a feared risk of self-harm or 3 person restraints for incidents that would have passed without comment in the community, restriction is what the “specialist” units provide in abundance. It’s harder to witness incidents of outright abuse on such units, but when reports and note entries refer to people as being manipulative, calculating or attention seeking, it gives an indication of the level of esteem people are held in and how they might be treated.
Issues with staff competence and training
In almost every tribunal and visit I do, a consistent theme is that the people delivering psychological interventions are generally not qualified to deliver them. There is much use of assistant and trainee psychologists with a clinical psychologist rarely to be seen. In the general staff team there never seems to be any specialist understanding of what they claim to specialise in, with the mantra “they do the dangerous things because they have a disordered personality” being the predominant way of interpreting everything.
Our recent experience of going to a new “specialist” unit, meeting a senior clinician and hearing “we’re glad you’re here, we don’t know anything about personality disorder” is unlikely to be beaten but is more notable for the level of candour rather than the situation being unusual.
Cover-up culture
I never see an admission that something has gone wrong and the patients fulfil vital roles here because they can be blamed for everything. An escalation in risk is due to them, never the inadequacy of the environment. An interpersonal difficulty is down to them rather than restrictive staff being people who might be hard to trust.
Poor-quality reporting
This probably means something different but the reports and case notes I see convey very little understanding of why people do what they do. Incidents are listed, the reasons why people do what they do are not.
Poor-quality care generally
This is the most frequent experience. The care on offer deviates, often quite markedly, from what NICE recommend. The reasoning behind this is often that the guidelines written for people who self-harm and are suicidal can be ditched when people self-harm and are suicidal. There is never any acknowledgement regarding how far care has moved from what is seen as quality provision, only that the person is still dangerous and needs to receive more of the compulsory poor quality care until they get better.
Something the CQC doesn’t comment on is the relationship these units have with relatives. My general experience is that if the relative thinks of the person they care for as being disordered and needing restriction then the relationship will be great. If the relative raises any questions regarding the issues above then they become pathologized themselves. Criticism of the system is seen as a manifestation of a disorder in itself. Quickly they are attributed all the blame for the problems that led to the person they care about being there. They will be slowly ostracised and if they become distressed as the person they care about sinks deeper into their environment of poor care…well that can be pathologized even more.
Now obviously I am very anti “specialist” private placement so you should take all the above with a huge bucket of salt. What really struck me reading this today was just how the concerns of the CQC dovetail with what I’ve witnessed on almost every ‘specialist’ private unit I’ve been party to. Much as I would like to be, I am not an RCT study and I haven’t seen every unit, but I wonder if there is something about a “specialist” personality disorder unit that makes it especially vulnerable to developing the closed cultures that worry the CQC. I’ve previously argued such units are simply places for dangerous people to be warehoused rather than there being any optimism. I’ve taken a bit of flack for suggesting these units are places who accept those that the NHS doesn’t want to work with. If we combine a client group that raise anxiety in staff with a system that places people out of sight, out of mind, there’s some pretty good ingredients there for things to go wrong (and when they go wrong, unless a journalist has sneaked in with a bodycam, then the patients can be blamed).
I’d really like the CQC to look at these “specialist” units more as even the ones I see with decent CQC ratings tick a lot of the boxes above. I’d certainly like the claims of specialism to be interrogated a bit more as at the moment, you’re a specialist unit just because you say you are.
At present inpatient treatment for those who receive a personality disorder diagnosis has been almost entirely privatised. We spend hundreds of millions of pounds on this inpatient care while claiming there isn’t enough money for decent community services that at least carry some evidence base for being effective and bear some relation to what NICE recommend (Could there possibly be a link???)
Everyone hates being invalidated. We owe people who have survived neglect, abandonment and abuse more than confining them to these closed cultures. We can do better than this.
You can decide if this is shameless profiteering or a plea from someone who wants to effect change – Last week we did some training about “specialist” placements and 100% of the attendees said they would be less likely to use them at the end. Let us help you avoid this.
Keir helps people work with complex mental health difficulties through beamconsultancy.co.uk
Why those with a "Personality Disorder" diagnosis always sabotage (or do they?)
“I can't stand it, I know you planned it”
Sabotage, The Beastie Boys
People with a diagnosis of personality disorder self-sabotage, This is a fact. How do I know it’s a fact? Because health care professionals regularly tell me this when I ask them about their associations with a “personality disorder” diagnosis. It is a very annoying thing when somebody makes a considered, deliberate attempt to undo anything good but it’s always worth wondering if that is the exact thing that is going on. Just imagine what it might be like to be told that everything that has just gone wrong is the result of your deliberate action? That the mess around you is what you intended. That regardless of how much you are inconvenienced or suffering, it is exactly what you wanted and strived to achieve. What might that do to your sense of self? What might you think about the person telling you this? Let’s have a think about the term sabotage and see if we can up with some other ways of understanding what people do.
Oxford Languages (googles first result) defines sabotage as to “deliberately destroy, damage, or obstruct (something), especially for political or military advantage”. The key word here for me is “deliberate”. Moby tell us that things fall apart, like they always do. What I tend to find is that if a personality disorder diagnosis is involved, the reason for things falling apart will be placed squarely on the shoulders of the person with that diagnosis. Sabotage will be talked of, and any other explanations with be thrown to the wind. Let’s have a thing about what, in the absence of a personality disorder diagnosis, some of those explanations might be.
Marsha Linehan, the creator of Dialectical Behaviour Therapy and someone who identified with the diagnosis of “BPD” herself asks us to work and think by the following principle
“All things being equal, we agree to search for non-pejorative or phenomenologically empathic interpretations of our patients', our own, and other members’ behaviour. We agree to assume we and our patients are trying our best, and want to improve. We agree to strive to see the world through our patients' eyes and through one another's eyes. We agree to practice a non-judgmental stance with our patients and one another”
Now I’m going to suggest that it is impossible to follow the above direction while saying that people self sabotage, that they “deliberately destroy, damage, or obstruct” their own wellbeing.
Lets have a scenario that lots of people will be familiar with. A young woman (it’s always a young woman) is on a hospital ward after being admitted due to escalating self harm and suicidality. Things have settled. The MDT think it’s time for discharge but they don’t tell her in case she “sabotages” the plan. She is told at lunchtime that she needs to be gone by teatime. She self harms in the toilet. She isn’t discharged that day. Everyone agrees that she has sabotaged her care and people are so confident about this hypothesis that the patient is told this is what they did. How do I know? I was there. This is a true story (stories – happened all the time).
Lets have a think about some other possible interpretations of what went on.
I’ve worked with some people who like fixed and concrete plans. A sudden change of plan is massively unsettling. A way to deal with massive upset is to self-harm. The behaviour might have stopped discharge, but that wasn’t the intent.
I’ve worked with others whose primary aim is to stay safe and their firm belief is that an inpatient ward is the place to do that. Some of those people know self-harm will keep you on a ward. If they disagree that discharge is best, it makes sense they will do what they can to stay safe. Is this then sabotage of care or an attempt to maintain care? If people have different goals to their MDT, is it sabotage for them to pursue their goals?
I’ve worked with people who hate themselves. “Discharge in 4 hours” sounds a lot like “We don’t like you, you can fuck off now” especially when delivered out of the blue. It would make sense that people validate their self-hatred by hurting themselves. Is this a deliberate attempt to destroy their care or is it nothing to with destruction, it just happens to have the effect of changing other peoples plans even though that wasn’t even considered.
I’ve worked with people who have had every aspect of control and autonomy in their lives taken away. The only thing they have in their lives that brings them into people’s thinking or influences what people do is the danger they place themselves in. When they are told X is happening and they don’t want it, Y is often the only way to push back. The only way to have any control. Is that a deliberate attempt to wreck their long term goals or again, does it change the plans of others?
Are you thinking that there might be some other reasons that I haven’t mentioned? You’re right. There are millions. The best answers will be the ones we elicit from the patients themselves but if not, “deliberate self sabotage” should be the last option on our list.
I’m going to give another example. We were working with Sarah (all my pseudonames are Sarah) who had a huge drug problem. We got really involved. We helped her move to a new area. We got grants and bought her some basics for the new flat. We celebrated her first night alone in her new place. We cursed her for sabotaging all our efforts when she sold her basics and bed linen to buy drugs. What I realise now is that whatever I wanted, Sarah’s priority in that moment was to be away from whatever was in her mind, as it had been for the months before. We hadn’t tackled the things that made Sarah want to be unconscious, we just helped her take those awful thoughts to a new place. Sarah didn’t sabotage anything. We lost sight of the fact that our goals and Sarah’s were different, we didn’t talk about that with her and when she went with her goals rather than ours we got annoyed with her rather than considering why our goals were more important than hers.
I’ve made a lot of impulsive decisions in my life, some of them have taken me away from my long term goals. Even at my most critical, self-eviscerating moments I would struggle to define those times as a deliberate attempt to rip my life apart. When we look people in the face and tell them that their actions are a deliberate attempt to tear down anything good in their lives we will almost certainly be re-enacting the part of somebody who has hurt them. ‘You asked for this’. ‘You’ve got what you wanted’. “It’s all your fault”. We, those who are supposed to care, will be telling them that they are the authors of their misery and that this is what they wanted all along. That the whole mess is of their creation and of their desire. If we are replicating the words of somebody’s abuser, we’ve probably stopped providing care. We will never be struck off for saying people sabotage, but the reasoning behind such a statement is surely outside all of our codes of practice.
So should we celebrate an event that brings plans crashing to the ground? Absolutely not. It’s incredibly frustrating but before looking to diagnosis to give us a stigmatising explanation, lets exhaust every possible empathic explanation first. We can still be annoyed, angry, frustrated and feel useless. As Linehan would again remind us, the result of behaviour is often not the deliberate intention. We can feel all these things without blaming the patient for deliberately eliciting them.
Before we end, I have worked with those who have told me that they wanted to tear things down. It was all they could do. In a world where they were nothing, they were only something in the minds of people when they validated their sense that they were beyond help. They inspired a great deal of sympathy from others, but also a lot of resentment and anger. The important thing to remember is to let go of the self-centredness and narcissism that we as a staff member can hold – much of what we take personally in work isn’t about us.
I don’t think the term sabotage has a place in the empathic, relational model of working most people agree is the foundation for helping people in their lives. It locates all problems in the one person who probably has the least influence over what is taking place. Let’s always strive to empathically understand why people do what they do and, if risks escalate at a time when we know things are more stressful, perhaps if we change the plan in response we are the ones who might be sabotaging something.
Keir helps people work with complex mental health difficulties through beamconsultancy.co.uk
Mental Health Act Tribunals and the Irrelevance of Occupational Therapy
In the UK, if you are detained under the mental health act against your will, you have the opportunity to appeal your detention. You’ll be appointed a solicitor and they will listen to your instructions and help you argue that you shouldn’t be detained because either your problems aren’t of a nature or degree that require compulsory treatment and/or that detention isn’t required to protect your health, your safety or the safety of others. Your solicitor might get some independent experts in if they can help with your case. An example might be bringing in another psychiatrist to say that your doctor has got your diagnosis all wrong and that the treatment you’re being offered looks nothing like what you’re supposed to get.
I’ve written in the past that I really enjoy doing tribunals. I think the reason I enjoy them is that they help me feel very effective in my work. So far, every person I’ve done a report for is someone who did risky things in the community, does near lethal things in a restrictive environment, has a care plan that looks nothing like what quality care is supposed to look like and is being kept in an environment where they have been the most dangerous to themselves ever. The plan is to keep them in this environment until they stop doing the things they only do in this environment. I’m very fortunate in that every tribunal panel I’ve presented this argument to has discharged the person appealing their detention. Now in some ways, this isn’t the typical role of an occupational therapist. In other ways you can argue that making sense of peoples actions and the way the environment influences their functioning is as OT as you can get.
I got into this because after bleating about the injustice of prolonged detention for those given a ‘personality disorder’ diagnosis, a relative of someone detained contacted me and asked if I could help. I think it would be fair to say that this relative was tenacious, driven, and exceedingly goal directed when pursing the best care for their offspring. They persuaded their daughter’s solicitor to talk to me and after that conversation I was instructed to do a report and come to a tribunal. The appeal was won and the barrister and solicitor involved were kind enough to say that my evidence was a significant factor.
I waited to be rushed off my feet with similar invitations but nothing came. After about six months I got a call from a different firm of solicitors. The barrister I’d worked with had recommended me and on that basis, I did some work for that firm and eventually another again, after being recommended by the barrister. I’ve done multiple reports for these firms now and because there are so many young women detained in private hospitals offered nothing like a specialist service, they keep being discharged from their sections.
In some ways I’ve been slightly frustrated that I don’t get to work outside of the 2 solicitors that use me regularly, but a part of me just assumed that this is how the tribunal system works, that different solicitors have experts that they use regularly and in some ways it’s luck whether or not you get ‘found’ by other companies.
This assumption was challenged this week. Once again I ended up talking to someone who had a relative detained in a private hospital. To make sure they don’t end up paying me anything out of their own pocket, I always advise them to talk to their relative’s solicitor and they can then instruct me under legal aid if it’s agreed I might be helpful. I had a chat with their solicitor and I outlined what I’ve done in the past and how my areas of knowledge might influence a decision to continue or cease someone’s detention. Once we’d agreed I might be helpful we came to the assumption rocking bit. We talked about how it was easy to apply for funding to get an independent medic, psychologist or social worker, but it was hard to work out how had solicitors justified getting funding for an OT report in the past. While I’d known my work in this area was relatively novel, I hadn’t realised the hoops solicitors had had to jump through to be able to get me involved. Those I’d previously worked for had either had a desperate parent or a Queens Council barrister pushing for me to be involved. It was only when speaking with someone outside of those influences that I realised that it wasn’t that having an OT involved was novel, it was like it couldn’t be contemplated. There seemed no obvious way to get a legal aid panel to possibly sanction the involvement of a profession so obviously distanced from the tribunal process.
It had never occurred to me before that my profession was ostensibly so irrelevant for establishing whether someone met the criteria for involuntary detention under the mental health act. I’ve nothing against the solicitor I was talking to here, they were just really helpfully reflecting the impact OTs have had on this process so far.
As you might have suspected, I’m going to suggest that we have a lot to add to this area. We help people with what they want and need to do, we look at the skills they have to do it and we look at how the environment supports or hinders them doing this.
““Nature” involves a longer-term view of the condition: it can involve a consideration of whether the patient, if discharged, would be likely to relapse in the near future. For “nature” you can consider issues such as insight into the need for treatment in the future”
We can have a view on this. We can consider not just the person but the physical and social environment around them. We can also consider whether the ‘nature’ of the difficulties might make detention inadvisable. A history of being made powerless and hurt by people who were supposed to care for you may mean that prolonged detention in a place where you are powerless and don’t trust those around you might not lead to life feeling jolly.
“Degree” refers to the severity of the condition at the time of the hearing
Again, we can have a view on this. Are things so bad that someone should be detained against their will? Can they function? If not, why not? A really useful thing for us to have a view on might be “have changes in the physical and social environment resulted in an increase in severity?”. I’m not seeing other professions answer these questions, but those professional’s views impact on whether our clients live lives behind locked doors or in their own homes. Surely we have relevant things to say about this?
Danger to health, self or others
Because we are talking about the actions people take I think again, we can put forward a view on this. We can differentiate between self harm with a clear rationale and actions aimed towards dying, we can explore what has led to violence in the past and whether the circumstances will be the same in the future. We can bring a clear understanding of why people do what they do that is more useful than “because they are ill”. A good read of anything by Rebecca Twinley will help a lot with this.
I almost wrote that if we don’t get vocal about occupations that result in harm, we make ourselves irrelevant in this area. Because of my experiences this week I need to write “we will continue to be seen as irrelevant in this area”. Then I start thinking about NICE not wanting OTs on the committee to review NICE guidelines and I start to feel despondent…
Anyway, if nothing else, being locked in a hospital has a pretty hefty impact on someone’s ability to function so if we are working with people who are detained, we need to be pretty certain that this restriction is in their best interests.
I’m pretty sure that once I post this, someone will comment that it’s awful we don’t get invited to submit reports for tribunals. It is awful, and we can’t wait to get invited.
If this sounds like something that might interest you, try to push against the idea that the intervention of detaining someone in hospital is the domain of other people. Express a view. When people involved in the tribunal are around, give them your opinion. Ask to sit in on a tribunal – they can be scary places but much of that is due to it being unfamiliar. Listen to how experts are questioned. Consider how you might answer these questions. Wonder if the perspective of your profession might add something to the debate. If you come to the conclusion that your profession has nothing to say that is relevant to these proceedings, have another think.
Let your patients know that you have something to say that might help. Encourage them to ask their solicitor to contact you (this has never worked for me). In the past I have contacted solicitors of patients and suggested they ask me to attend the tribunal. It’s generally not something that makes you popular with your colleagues, but if you think detention is harming someone, you don’t really have many other options.
The next step, getting solicitors to request your input as an independent expert, is a lot harder. At present I think many will think of us as irrelevant. We need to combine a stronger presence within this process with some assertive marketing around what we can do. No one will do this for us. If this is an area we should be involved in (and interested to hear from those who think we shouldn’t), then we need to get in there and show our worth.
As I’m writing this I’m waiting for a tribunal to start. I know that in an environment where guidelines exist describing good practice around medication, a psychiatrist is going to assert that as a non medic, I cannot have an opinion on practice that beaches that guidance. Lets see how that goes…
Many thanks to twitters @asifAMHP for looking over this for me. He is a MHA guru