By Keir Harding, 18 November 2020
Editorial note: In a blog post about a Court of Protection hearing (here), Celia Kitzinger reported that the person at the centre of the case had been diagnosed as having an “emotionally unstable personality disorder” (also known as a “borderline” personality disorder) and that this constitutes “an impairment of, or a disturbance in, the functioning of the mind or brain” under s. 2(1)of the Mental Capacity Act 2005. The contested nature of the diagnosis was not mentioned or engaged with in the Court of Protection hearing (nor was it addressed by Celia in her commentary on the case) – and so we asked Keir Harding to write a piece about the diagnostic category and the way it is used by way of raising awareness, both in the legal field and more broadly in health and social care, of some of the issues involved.
“Borderline Personality Disorder” and “Emotionally Unstable Personality Disorder” are interchangeable terms for a mental health diagnosis typically given to someone who has difficulty managing their emotions, copes in ways that can cause problems for them, and has difficulties with relationships. In theory, it is a diagnosis given by a qualified mental health professional. It is classed as a mental disorder which means that a person with the diagnosis could be detained under the Mental Health Act (1983). There is a NHS webpage about it here, and a Mind page here.
For the diagnosis to be given appropriately according to the psychiatric criteria, people’s symptoms should meet the 3 Ps. Their difficulties should be:
- Persistent – Not waxing and waning, not relapsing and remitting but relatively constant.
- Pervasive – In every area of life. They shouldn’t function brilliantly in one area and not in another.
- Problematic – It has to cause distress to them.
All of the above is theory. But these diagnoses are in reality very contested, and in my experience and the experience of many people who have these diagnoses, the diagnosis can be arrived at after a very brief consultation and without a thorough assessment. I argue that this means, in respect of the Court of Protection, that in proceedings where P has one of these diagnoses, it is important to establish how the diagnosis has been arrived at – and to confirm that it is the result of a rigorous assessment, rather than the ‘gut feeling’ of a clinician. The Royal College of Psychiatrists recommends that “diagnosis should only be made by those qualified to make it and only following a thorough assessment”.
A Contested Diagnosis
There are 10 different types of personality disorder listed in the Diagnostic and Statistical Manual of Mental Disorders (the ‘DSM 5’) – which is published by the American Psychiatric Association, and used to diagnose mental disabilities in the United States and some other countries. These are: paranoid, schizoid, schizotypal, antisocial, borderline, narcissistic, histrionic, avoidant, obsessive-compulsive, and dependent. It’s also possible to be diagnosed with a “mixed personality disorder” or with a personality disorder that doesn’t quite meet the criteria for any of these diagnostic categories (“a personality disorder not otherwise specified”).
I’ve worked in a variety of mental health settings for the past 20 years and I have met fewer than 10 people with a personality disorder diagnosis that isn’t either “borderline” or “antisocial”. So, while in theory there are 10 types of personality disorder, only 2 of them seem to be regularly diagnosed.
In my experience, if you are a woman who self-harms, you will get a Borderline Personality Disorder (BPD) diagnosis regardless of whatever else is going on. Something in this system is definitely wrong.
Research suggests that if you can be diagnosed with one personality disorder, it’s highly likely you’ll meet the criteria for another two. So that’s 3 personality disorders in all. In a system that aims to put people into a neat tidy box so that we know a care pathway, it becomes messy because they’re actually in 3 boxes (and they probably display some traits from a few of the other diagnostic categories too).
Let’s take borderline personality disorder in the DSM 5 diagnostic manual as an example: To be given the diagnosis you need to match 5 of the 9 relevant criteria. Let’s say my friend Ian and I are on the same hospital ward. He meets criteria 1-5 and I meet criteria 5-9. So, we have the same diagnosis, the same treatment plan, and yet we share only one characteristic.
Borderline Personality Disorder could certainly be argued to be the most stigmatised diagnosis out there. As long ago as 1988, an article in the British Journal of Psychiatry (“Personality Disorder: The patients psychiatrists dislike”) reported research showing that psychiatrists treated patients with this diagnosis as more difficult and less deserving of care compared with other patients. The authors wrote:
“The PD cases [sic] were regarded as manipulative, attention-seeking, annoying, and in control of their suicidal urges and debts. PD therefore appears to be an enduring pejorative judgement rather than a clinical diagnosis. It is proposed that the concept be abandoned.”
A story of two mental health staff talking goes like this:
“I’m having problems with my patient with Personality Disorder”
“How do you know they have personality disorder?”
“Because I’m having problems with them.”
This is why I feel it’s very important that when the court accepts that someone has the diagnosis of BPD they ensure that this is based on a thorough psychiatric examination from an expert in the field, using a trusted rating scale and finding the person to have met the diagnostic criteria. A person does not “have BPD” simply because their care team find them challenging. I frequently meet people with this diagnosis who do not meet the criteria but have this label written all over their notes.
Even when people are shown to have met the criteria, the court should be aware of the subjective nature of assessment for this diagnosis. Those deciding that anger is “inappropriate” (Criterion 8) or that attempts to avoid abandonment are “frantic” (Criterion 1) may well have difficulty appreciating the unique set of circumstances those they assess are living through.
There is a language around people with this diagnosis that invites people to treat them badly or even cruelly. They are often described as attention seeking, manipulative and in many ways not truly deserving of care. They take up places in the healthcare system that could be used for people who are “really ill”. They are ascribed mythical powers to be able to tear apart previously high functioning teams and, despite a suicide rate of 1 in 10, are rarely taken seriously when describing being suicidal. It is very hard to be helpful to people when you label them as disordered and see them as holding all the characteristics above. This isn’t something I’d expect caring people to do.
Perhaps a more useful way of thinking about this is through the lens of trauma. Up to 80% of people who receive this diagnosis will have experienced some form of abuse. I’ve very rarely worked with anyone where the difficulties they have now don’t make sense in terms of previous experiences of neglect, abandonment and abuse. If we can remember what has happened to people, we tend to be empathic. When we label that person as disordered, we tend to locate the problems in them rather than the people or circumstances that hurt them, or the circumstances of their trauma. I would bet money that this label is disproportionately applied to the girls who survived the child sexual abuse scandal in Rotherham – but the people we sympathise with now will be the people who are blamed for their problems in the future.
Jay Watts writes of testimonial injustice once this label is applied. The words of those given the diagnosis are seen as meaningless because an expression of pain is viewed as just seeking attention, and a legitimate complaint is ‘typical PD’. “Inappropriate anger” is one of the criteria for BPD and what greater power imbalance can there be for someone whose reactions to injustice are labelled by others as “inappropriate”?
Many would argue the diagnosis can be useful and I sometimes find it helpful for those I work with, if only because it comes with ‘NICE’ (National Institute for Health and Care Excellence) guidelines (see here and here) that recommend specific ways of helping people with this diagnosis. I help a lot of people leave compulsory treatment because the care they are receiving bears no relation to what is recommended in the guidelines. In the face of risk, teams move from “being with” people and start “doing to” people. Collaboration ceases and as people respond badly to the restrictions (whose potential for harm is spelled out in the guidelines), this is only seen as evidence to restrict more. Recommended therapies are not provided or are provided by those who are untrained – and despite a recommendation not to prescribe medication for BPD, polypharmacy (the prescription of multiple medications to one person daily) is rife.
Another common theme I see in legal reports is for someone’s current presentation to be generalised to their entire life. It can be forgotten how an inpatient environment is often perceived as harmful and not recommended for people with this diagnosis, with the ‘NICE’ guidelines telling us admission should only be used during a crisis. When people are compelled to reside in a harmful environment, it would make sense that their behaviour changes substantially. With that in mind I would always want the court to think about whether behaviour used as evidence for anything in one environment can reliably be applied to different environments where often that behaviour has never occurred.
The Consensus Statement for People with Complex Mental Health Difficulties who are diagnosed with a Personality Disorder was published in 2018. In this statement many people with lived experience and some professional bodies including the British Psychological Society stated “We would like to abandon the term ‘personality disorder’ entirely” . That won’t happen any time soon though, and with the new edition of the diagnostic manual used in the UK (the World Health Organisation International Classification of Diseases – version 11) being published next year, it is possible that more people will qualify for a disordered personality with all the implications already outlined. This is a scary prospect and while seeing that someone has a diagnosis of BPD will tell you much about their relationship with those who should care about them, it will tell you nothing about the value of their personality.
I very much hope that the contested and controversial nature of personality disorder diagnoses that I’ve described here is understood and borne in mind by the Court of Protection whenever it makes decisions concerning people with one of these diagnoses.
Keir Harding is an Occupational Therapist and Dialectical Behavioural Therapist with 20 years’ experience in mental health and an MSc in ‘personality disorder’. He has been a lead therapist NHS services and is now Clinical Lead for Beam Consultancy. Keir works closely with people with lived experience to provide training, expertise and therapy to help avoid long term hospitalisation. He serves on the executive board of the British and Irish Group for the Study of Personality Disorder. He tweets @Keirwales