BPD – Recovery in the Bin

Neorecovery, Neoliberalism and Enforced ‘Positive’ Risk Taking

This is the first in a series of blogs we are publishing about ‘positive risk taking’ in mental health. The Department of Health published its guidance, Best Practice in Managing Risk, in 2007 as part of the National Mental Health Risk Management Programme. It describes positive risk management as a collaborative process with the service user and their carers, which emphasises the importance of building on the service user’s strengths, while recognising the responsibility of individual clinicians and organisations as a whole. Positive risk taking is meant to be about collaboratively weighing up potential benefits and harms, with the aim of taking a risk for a positive outcome. As you will read in the blog below, this couldn’t be further from how it is being used in practice.

At a time of continued austerity, and neoliberal and neorecovery agendas, I see a worrying trend. NHS mental health services are covertly enforcing positive risk taking as a way to justify neglect, lack of care and exclusion. As long as services can defend their actions it seems they can avoid blame. I can’t help thinking that it’s something else; decisions are made due to diagnostic discrimination, financial reasons and lack of resources – not of clinical need. But there is no honesty or transparency when it comes to discussing risk with me.

“Positive risk taking needs a person-centred approach, where staff take a positive, recovery- oriented view of the service user and investigate what is important to keep them and others safe as they move towards better health and more independence. Positive risk taking is based on finding creative solutions rather than simply ruling out options for recovery based on fears and worries of what might go wrong”

from ‘Therapeutic Positive Risk Taking’ by Greater Manchester West Mental Health NHS Foundation Trust

I was forced to wear the Bullshit label of Borderline Personality Disorder and remain unrecovered for many reasons, despite being under the so called care of secondary mental health services for almost three decades. I have already written about this here.

Having the BPD label is not conducive to a therapeutic and trauma informed relationship with professionals. Clinical judgement is biased and I have mainly been treated like shit on a shoe. Written throughout my clinical notes and said verbally so many times is; attention seeking, manipulative, complex, demanding and difficult. This has never changed. I’m sure I’m seen as someone who is taking up valuable resources. My severe distress seems to provoke negative reactions and less empathy from most professionals although it is not fake!

I have often found the mental health system to be coercive and controlling. In the past there have been times when I don’t think I needed to be detained under the Mental Health Act. Yet other times, I have no doubt that being locked up saved my life. I have recently tried to take back some control regarding risk, and whilst there aren’t as many threats of Mental Health Act Assessments and police involvement, there seems to be no action taken when I take responsibility and ask for help in an emergency situation.

Whilst I know that risk assessments are not that helpful in predicting suicide, I see the push towards positive risk taking from mental health services also comes alongside aims of zero suicide and suicide prevention, ‘ask for help if suicidal’ narratives, and Time to Talk. There seems to be an increased focus on those with milder mental health difficulties, yet those with long term need and severe and enduring difficulties are not having their needs met. I’m acutely aware that many people don’t have a Crisis Plan or a Care Coordinator despite being under the care of secondary mental health services. Some can’t access secondary mental health services at all, despite their need.

Over the years I have seen support for people like myself decimated. Crisis services are failing. I used to have some hope that services could keep me safe if I asked for help. I remember in years gone by there was more care in the community and effective and collaborative crisis planning. I could access the day hospital and extra appointments with my CPN or visits from the Home Crisis Resolution Team. I was offered short voluntary respite breaks in hospital as detailed in my Care Plan. Stays (even detained ones) in hospital were more therapeutic than they are now; nurses had more time to chat, there was not as much rush to be discharged and there was better follow up upon release.

Then came austerity, neoliberalism, minimisation of the State, the selling off of the NHS, social inequality and insecurity, and the move to a neorecovery based approach. This accelerated the emergence of individual responsibility and self-management, dependency and loss of productivity, all whilst ignoring the social detriments of health. Mental health services are now in crisis themselves and often struggle to provide even basic care. There is a lack of inpatient beds and more out of area beds. Emergency departments are under increased pressure. Community mental health teams are underfunded, under staffed and under pressure to discharge people who fail to recover. Staff seem to have become demotivated and detached and many of the better ones have left the NHS. Dual diagnosis services have been scrapped. There are long waits for therapy, which are often short term. Day centres closed and turned into recovery colleges, social care and welfare benefits cuts, peer workers are now often called recovery workers and bear no resemblance to grassroots peers. Police are taking up the slack for those in a crisis and some patients are even being prosecuted for trying to take their lives.

It’s difficult to get taken seriously when I’m desperate for help. Fears about my safety from my family aren’t taken into account and they no longer accept the responsibility forced on them by services to keep me safe when psychotic. There seems little point in having a crisis plan (now called a crisis recovery plan). Although I have had some input into my plan, it is very much led by professionals, with much less support on offer in a crisis situation than years ago. In any case the plan is no longer followed in acute crisis situations, despite it stating in capital letters at the top that if I do contact someone it will be an emergency. Professionals tell me that I have capacity to suicide but rarely provide any support. I feel like they just hope I don’t, and that if I do then I was actually telling the truth!

When I am detained under the Mental Health Act it’s often because of police involvement. Psychiatric wards are now hostile environments which I try to avoid at all costs. A recent CQC inspection of my Trust saw the safety of services had deteriorated and required improvement, and that acute inpatients wards were inadequate. Suddenly, it appears that only very short admissions to keep me safe are advised for people with my label and NICE guidelines for self harm are not being followed. Yet, the link between self harm and suicide is well known, with estimates of one out of 10 people with the BPD label taking their lives. Even coroners are issuing Prevention of Future Deaths notices after being alarmed at the lack of care that emerges during inquests.

For many years according to my clinical notes I was “at high risk of suicide.” This has now changed to “at high risk of accidental death.” In the last few years I have been left in high risk situations, because of the misuse of enforced positive risk taking. After a “near miss” serious incident a few years ago, whilst psychotic, three separate NHS mental health crisis services failed in their duty of care. Despite an internal investigation, which resulted in “lessons learned”, similar incidents have happened since (I will spare you the details). CPN stated that if I had died “the Trust wouldn’t have had a leg to stand on at a Coroner’s Court.” I am lucky to be alive! Others have sadly not been as lucky when asking for help and some simply gave up asking.

Neoliberal discourses attempt to position me as a responsible and active participant in my own care but also as blameworthy. I already feel like a failure, undeserving, worthless and ashamed. Am I not trying hard enough to be resilient, to be responsible and to recover? Am I too dependent? Have I not empowered myself enough? As a person with a severe and enduring mental health disability I realise I need to take some responsibility for reasonable risks in my daily life, but there are times that I simply can’t be responsible for my own safety. In these situations there is no joint decision making between myself and professionals. Being told it’s my choice to suicide when desperately asking for help in a life threatening situation as per my crisis plan is totally inappropriate and not one bit therapeutic. It seems to be shorthand for “We don’t give a fuck.”

Surely, services should not withhold support and care when I’m at serious risk of harm under the guise of it being in my best interests, to teach my badly behaved personality a lesson, as a way of tapering care to somehow facilitate resilience, or in a way to avoid blame. You’re actually gambling with my life. It’s scary! Positive risk taking – positive for who? It’s no good promoting recovery if I’m dead!

Written by G

The politics of an unstable sense of self: on being a slightly mad queer

By Hattie Porter

Some days I don’t recognise myself in the mirror. The longer I look, the more I see a stranger staring back at me with an expression I can’t understand. Some days I don’t recognise any part of me, even my mind, like I’m a tourist in my own skin and I feel homesick.

I was diagnosed with borderline personality disorder at the age of eighteen; which was around the same time I came out as gay, to myself at least. Both of these experiences involved a lot of questioning and uncertainty about who I was and who I may become. I hadn’t yet found a language that made sense to me. I was afraid and I thought I was broken.

One of the core diagnostic criteria for borderline personality disorder, and my personal least favourite, is “a markedly and persistently unstable self-image or sense of self” (DSM-5). Or as the ICD-10 describes “the patient’s own self-image, aims, and internal preferences are often unclear or disturbed”. These words feel sharp. The language that taught me I was disturbed for being who I was, echoes to tell me I am now disturbed for not knowing who I am.

Is it that I don’t know who I am, or is it that I’m not who they want me to be?

Research around sexual orientation and borderline personality disorder identifies a far greater prevalence of lesbian, gay and bisexual people given this diagnosis. Unfortunately, this research is not only extremely limited but highly offensive through convoluted attempts to depict this correlation as further evidence of our unstable personalities; both pathologising homosexuality and neglecting to consider the impact homophobia has on people. That speaks volumes in itself.

I want to know how you develop a stable sense of self. What a stable identity would look like? Can anyone’s sense of self be truly stable when our identities move at the same pace we do? These questions are too big to have answers that fit on paper. But what I do know, is that we can never begin to understand the experience of self, stable or otherwise, without considering the politics of identity.

Our identities carry weight. They are shaped by our experiences of stigma and discrimination, and the ways we have to survive that. They are shaped by the way we’ve been moulded to be. But we don’t all fit into that mould; we carry the pain of trying. We carry the pain of living in a climate where our identities are often socially sanctioned, denied and weaponised. And that is instability.

As a child, the only resources I had to learn about queernesswere the heavy words carved into the toilet doors and the language of playground bullying. That’s how I learnt being gay was synonymous with being flawed. That’s how I learntto hide this part of me in complex folds of origami, bury it deep inside and seal it with my shame. That’s how I learnt tosurvive. And it came with a price.

My unstable sense of self is this unravelling. It is me unpicking the stitches of the clothes I never grew into, working out what parts are me, and what parts are the costumeI created to protect myself. This is me relearning the language I was taught as a child, and it is hard work. Some days this is messy. Some days everything is a lie. But I am finally learning how to let myself be myself and to love myself for whoever that may be, even if I don’t really know yet.

I am proud to be queer, but it is not always easy. People are not always kind. I am always ‘other’, and this demands that I navigate the process of coming out and ‘admitting’ to being who I am. This is in itself instability. This is an experience of having to declare to the world that my identity is incongruent with their default assumptions. This is a continuous process of opening yourself up again and again to everyone you meet, allowing yourself to be vulnerable, never sure how you’ll be perceived. And that is instability.

It is not just my own sense of self that is unstable, it is the world’s sense of me.

Borderline personality disorder is a diagnosis which carries its own weight of stigma and judgement. For a long time, I thought this meant my personality was disordered; that I am fundamentally broken, beyond any hope of repair. And I thought it was my fault.

But I am learning that this diagnostic label is part of something much bigger. It cannot be separated from the systems which hurt us and then pathologise us for the wounds it caused. This is not our fault. We are not broken.

This is not an illness. It is an injury.

–

References

American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: American Psychiatric Association.

Gold, N., & Kyratsous, M. (2017). Self and identity in borderline personality disorder: Agency and mental time travel. Journal of evaluation in clinical practice, 23(5), 1020–1028.

Reich, D. B., & Zanarini, M. C. (2008). Sexual orientation and relationship choice in borderline personality disorder over ten years of prospective follow-up. Journal of personality disorders, 22(6), 564-572.

Reuter, T., & Sharp, C. & Kalpakci, A., & Choi, H., & Temple, J. (2015). Sexual Orientation and Borderline Personality Disorder Features in a Community Sample of Adolescents. Journal of personality disorders, 30, 1-14.

World Health Organization. (1992). The ICD-10 classification of mental and behavioural disorders: Clinical descriptions and diagnostic guidelines. Geneva: World Health Organization.

More Evidence Of Service’s Suicidal Neglect

Thanks to Suicide Crisis and their founder Joy Hibbins for this excerpt, the full report can be downloaded HERE > Research Into Deaths By Suicide In Gloucestershire, Report of First Six Months (June to December 2017) Headline Findings

Patients with Emotionally Unstable Personality Disorder expected to “take responsibility” for their safety.

It appeared that a level of responsibility was being given to patients with Emotionally Unstable Personality Disorder (Borderline Personality Disorder) to keep themselves safe, even when they were detained under the Mental Health Act or “sectioned” in psychiatric hospital. “Keeping safe” was used in the sense of refraining from self-harm or suicidal acts.

However, it was not apparent what preparation or help they had been given to enable them to “take responsibility” for their safety.

Having spoken to family members, there are indications that there will be more evidence of this being repeated in other cases, in inquests to be heard in 2018.

In terms of the inquests already attended:-

AF was detained under the Mental Health Act in psychiatric hospital. AF had been given a diagnosis of Emotionally Unstable Personality Disorder/Borderline Personality Disorder.

The psychiatric staff giving evidence spoke repeatedly about the need for AF to “take more responsibility” for maintaining her own safety. The coroner asked if she had “the tools” to do this.

AF had not been provided with therapies such as those referred to in the NICE guidelines for Borderline Personality Disorder e.g. Dialectical Behaviour Therapy (DBT). NICE refers to DBT as “an intensive psychological treatment that focuses on enhancing a person’s skills in regulating their emotions and behaviour. The therapy can help a person gain control of behaviours such as self-harm and substance abuse”. Psychiatric staff gave no indication of what they had done to prepare and support AF to be able to “take more responsibility” for her safety.

Therapies are particularly important as there is no specific medication. Indeed the NICE guidance (Clinical Guideline 78) states: “You should not usually be offered medication specifically to treat Borderline Personality Disorder or for any related symptoms or behaviour (such as self-harm, unstable moods and risky behaviour).”

SH had been given a diagnosis of Mixed Personality Disorder (Borderline Personality Disorder and Antisocial Personality Disorder). His family told us that they felt he had been given too much responsibility for maintaining his own safety and refraining from suicidal acts. SH was not provided with mental health care and support (such as the Crisis Team) after suicide attempts or self-harm incidents during the last few months of his life.

There was no indication at inquest that SH had been provided with therapies referred to in the NICE guidelines for Borderline Personality Disorder, including DBT which NICE states can help a person “gain control” of self-harm. There was also no indication that he had been given the recommended treatment for Antisocial Personality Disorder.

The NICE guideline on Antisocial Personality Disorder recommends psychological therapies for managing and treating the symptoms and behaviours associated with Antisocial Personality Disorder. “Group‑based cognitive and behavioural therapies help to address problems such as impulsivity, interpersonal difficulties and can help to reduce offending”.

Recovery In The Bin (RITB) is covered by a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) License

UPDATE: RITB Position Statement On Personality Disorders (or their euphemisms including Complex Emotional Needs)

HysteriaBPD

RITB are neutral on diagnosis – we support people to self define in the way they choose that best enables them to live. However we consider Personality Disorders (PD) or their euphemisms including Complex Emotional Needs (CEN), a special case and object to anyone’s personality being diagnosed as disordered.

We respect that some people find the diagnosis useful and would not want to see people not getting good support, but our position is that we do oppose PD/CEN diagnoses.

We view the PD/CEN diagnoses as a special case because of the specific and politicised uses such as;
•a diagnosis of reprisal in response to a complaint or a failure to ‘recover’ or to respond to medication,
•a misogynistic diagnosis given to women, transgender and non binary people mostly due to its links with childhood trauma, childhood sexual abuse or to the sole action of self-harm.
•a diagnostic reclassification to expedite discharge for financial and ideological reasons.

We view it as the worst diagnoses in terms of professional stigma and hateful attitudes and believe it is different to all other diagnoses in its utility so we prefer it was never used unless a service user requested it.

We object to psychological formulation enacting PD/CEN diagnoses in its description but without using the diagnostic words, as this is no different. We also oppose diagnosis creep of Personality Disorder encompassing more and more service users.

We also acknowledge that a diagnosis & deficit based description is still required for in-work and out of work benefits PIP, ESA, & Universal Credit regardless of whatever models are in vogue or preferred.

Update 24.01.24 Recovery In The Bin (RITB) is covered by a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) License