If the high point of a consultation is when patient and doctor achieve a truly shared understanding, then we usually have to overcome the barrier of medical language in order to reach this point. In The GP Consultation Reimagined I describe such language as being located in The High Tech Room, an intimidatingly technical space where the doctor usually holds a marked power advantage, being familiar with the concepts, language and rules that underpin medical science, while the patient may hold little currency in this room. How the doctor uses this language, and the jargon that is rife within it, is crucial to achieving a shared understanding. The objective for good consulting must always be to transfer power from the doctor to the patient, so that any jargon is handled in such a way that it empowers the patient rather than leaving them disengaged from its meaning.
I am always curious as to how this interaction works, and how to improve it, and it was pointed out to me that an added layer of challenge is when the jargon itself is problematic. The conversation turned to medical labels in psychiatry, and Personality Disorders in particular. I have always felt uneasy with the idea that we should label someone as having a disordered personality, and so helping someone to understand this label had the added difficulty of my own unease that we should be using it in the first place. I wanted to know what patients felt about this, and so last weekend I sent a tweet asking people given a diagnosis of personality disorder what they thought about the label. I expected half a dozen responses; I received over a hundred! The depth of experience and strength of feeling expressed was quite overwhelming and I lost track of all the conversations at times, but some key themes emerged. It felt right to pull some of these themes together in an attempt to honour all this lived experience and try to learn from it. Most of the replies related to people who had been given a diagnosis of Borderline Personality Disorder (BPD), or Emotionally Unstable Personality Disorder (EUPD). Here are some of the things I learnt:
There were some positives
1. For some people there was benefit in being given a diagnosis. It meant they could understand their experience and read up about it; they could benefit from some peer support and, because of these positives, they often said that they ‘didn’t mind’ the label. I’m not sure anyone said that they positively liked the term personality disorder though.
2. Some people had received good therapeutic support, and in particular some had found Dialectical Behavioural Therapy (DBT) to be helpful.
Mostly, though, the reaction to the term was negative
For the majority, the term was problematic, and there were very strong feelings that it was positively harmful and quite destructive. There were a range of problems:
1. That being told your personality was disordered left people feeling hopeless and judged that it was all their fault. Personality is so aligned with personhood that it felt like an attack on their very being; that it couldn’t be changed, and so the message was that there was no point trying.
2. That the diagnosis did not lead to treatment, quite the opposite, that it often closed down treatments. People found that it blocked their access to in-patient admission even when they were scared at the depths of their suicidal feelings, that follow up with mental health services was often lacking and that because their problems did not fit in to the ‘recovery model’ predominant in psychiatry nowadays that the focus was always on handling a crisis and discharge.
3. That the diagnosis led to a huge amount of stigma, especially from mental health workers. People felt labelled as ‘difficult’, ‘evil’, ‘manipulative’ and ‘shitty’ and that the attitudes of mental health workers often changed once they heard the diagnostic label of a personality disorder. Many described this stigma as traumatic and adding to the abuse that they had often already experienced in their lives. Some people described stigma from others outside healthcare, for example an ex-partner who weaponised the diagnosis in order to add further abuse to what had already been an abusive relationship.
4. The manner in which the diagnosis was made and explained was often key to how people felt about the label. Some described how they only learnt about the diagnosis when they received a clinic letter and saw it in the letter, or how they were given the diagnosis, felt devastated and were then immediately discharged.
5. Many felt the diagnosis was wrong in their case (in many cases they had been given alternative diagnoses later in life), but that the damage was done and the diagnosis was hard to shake off or get removed from their notes. The most common alternative diagnosis that had not been considered was Autistic Spectrum Condition (ASC), which is often overlooked in women; since most people with a diagnosis of BPD are women, this is not surprising. ASC appeared to be a much easier diagnosis to live with.
6. Some had been re-diagnosed as Complex Post-Traumatic Stress Disorder (C-PTSD) and this was often greatly preferred, since it acknowledged the abuse that is frequently behind the problems associated with BPD. One person was wary of implying that trauma had to be part of the diagnosis, though, since this raises how much trauma should be present in order to make the diagnosis valid – was my trauma ‘bad enough’ to be allowed this label becomes an issue, and will I feel inadequate because others have had ‘worse’ trauma than me?
7. Challenging the diagnosis, or challenging the level of care received, is exceptionally difficult for people with a BPD label, since it just confirms in the eyes of others that they are being difficult, and hence ‘proved’ that they really did have a personality disorder. It was felt by many to be impossible to challenge.
It was very hard to read all these tweets and, whatever you might think of the responses, it is clear that there is a great deal of unhappiness and distress in relation to the diagnosis of PDs, and BPD in particular, and a great deal of anger at how they are treated by society as a whole and by the medical profession in particular. It would be easy to dismiss this – aren’t people with BPD unhappy and distressed anyway and so what do you expect? I think that would be too simplistic, unfair and unkind. Every person with a BPD diagnosis has their own story to tell, often with a great deal of disadvantage in the form of trauma and abuse. Most are women, and have often been abused by men; there are echoes of women being labelled as ‘hysterical’ earlier in the 20th century and it is not invalid to think that there is an element of misogyny here – whether it is intended or not. Life has often been unkind to people who have ended up with a diagnosis of BPD and medicine needs to be kinder towards them. I have a few thoughts of where we might be going wrong.
The break-up of psychiatric teams
The first of the Two Houses in The GP Consultation Reimagined is the House of Discovery where the doctor is invited into the patient’s metaphorical house which is their story; it centres around the problem they have brought to the doctor in the context of their life story, including hidden points of shame and embarrassment. For many simple problems we spend only a short while in this house, but as GPs we build up a picture over years as we get to know our patients. When someone takes a psychiatric history, however, they go through every aspect of the house in a systematic way, exploring each room in turn (forensic history, schooling, premorbid personality); checking the basement (alcohol, drugs, thoughts of self-harm) and the bedroom (sexual history). This is necessary, but it is invasive. When someone has BPD they may end up in hospital after an episode of self-harm, and this invasive examination is conducted by someone from liaison psychiatry, usually someone they have never met before. Trust is difficult for people with BPD and yet they are asked to trust someone they have never met with a series of very personal questions. This may be fine the first time, but what if it happens again, and again? You would learn what questions were coming next, and what if you knew what the outcome would be every time? That you will be discharged, maybe to the Home Treatment Team for a while, but with no positive outlook of something that will make a material change. Another crisis managed by the team, another bruising episode for the patient.
Is there any wonder that this leads to resentment? To a feeling of not being listened to? And then there are separate teams; the liaison psychiatry team is different to the Home Treatment Team, which is different to the regular team or the crisis team or the Safe Haven team. For someone who struggles with trust, finds it hard to form therapeutic relationships and dreads rejection at every turn, this constant cycling between teams often leads to anger and mistrust. This can then lead to very negative reactions in the patient, pushing the whole team away and, at times, being unkind to the staff in turn, which can’t help staff morale and increases the stigma towards BPD patients as being ‘difficult’. Could psychiatry find a way of getting people in crisis with BPD to their familiar care worker more quickly and more painlessly?
The Recovery Model doesn’t fit
In the last 10 years, the standard model of care has become the Recovery Model, which focuses on recovery and planning for discharge rather than on-going care. There are many merits, and it is a vast improvement on the institutionalisation of people with mental health problems in the past. However, it is a model that does not fit everyone who ends up with a diagnosis of a personality disorder. Full recovery is much more difficult, rejection and discharge from support can be devastating and for some people there has to be a role for on-going support. It is important to always look for improvement and recovery of course, and to be mindful that we need to support independence and not cause dependence. The problem is that the recovery model has been used more as a way of coping with inadequate resources rather than because it is best for BPD.
Moreover, BPD patients are often left unable to access primary care mental health support, such as counselling, since they are deemed to be too complex and are under secondary care, but secondary care does not offer talking therapy unless you fulfil the right criteria, leaving such patients in a therapeutic limbo. Do patients with BPD need an entirely different model to fit their needs?
The inefficiency of the Multidisciplinary Team (MDT) meeting
There is a value in teams talking to each other, but I am increasingly concerned about the ubiquitous and healthcare-professional-centred role of the MDT meeting. Firstly because having so many professionals in a room at once is a precious resource and, quite frankly, I wonder how many more patients the team could be seeing and supporting if they spent less time in meetings. Secondly, however, it seems (at least from my point of view) that individual practitioners within mental health are less able to make decisions than they used to, because they gather the data from the patient and then have to take it to the team to decide on the diagnosis and treatment plan. The patient often then has to wait to be informed of the outcome (either by a phone call, or sometimes just by letter – I suspect this is how one person who replied came to know about their diagnosis only when they read the clinic letter). How can this be patient-centred? A group of professionals discusses everything about you, but you cannot contribute to the discussion. When you are informed, it is difficult for you to have a say in the plan since the individual practitioner does not have the power to override the MDT meeting. We need to ask if such meetings are allowing the patient to be involved in their own care, or if they have developed a tyranny of their own.
Patients need to be involved in disease classification
Psychiatry diagnoses are made by committee, either the DCM-5 or the ICD-11, depending on which side of the Atlantic you are on. Since the only point of medicine is to help the patient, one of the key tests of any diagnostic label is how much it does exactly that – does it help, or harm the patient? The best people to evaluate this are patients themselves and so shouldn’t patient representatives be present on such committees? Maybe they already are, but I doubt it somehow.
This post is more of a reflection than a standard blog (it is far too long for a blog post for a start) so if you have read this far then thank you for your interest. If you work in mental health and feel that I am being unfair on your specialty then I am acknowledge that I may well be, but there may still be merit in listening to how the mental health service comes across to one outside it, even if I have my own biases. If you have a diagnosis of a personality disorder and you have read this post then I hope you have found it helpful. You do deserve kind, compassionate care. Please also remember that the mental health services are woefully underfunded and try to be kind in return; it is with kindness and through listening to one another that we might be able to help things to improve.