They never imposed a diagnosis on me, though they could have

“You’re basically good,” said Magrat. “The good are innocent and create justice. The bad are guilty, which is why they invent mercy.”

Witches Abroad by Terry Pratchett

One of the good things about Twitter is that you can have conversations which make you think. I’m not an expert on the debates around diagnosis, although I am well informed. Certainly a blog post cannot do it justice. Try following Drop the Disorder on Facebook or Twitter (@dropthedisorder) to inform yourself even more. You don’t have to agree, just entertain alternative ideas about how NHS and mainstream services make sense of distress. Just to be clear, if you believe in your personal diagnosis and it helps you, I am just happy that you find it useful.

A reason a Tweep gave for trusting the service she was engaged with was something like, ‘They never imposed another diagnosis on me, even though I am sure they could have.’ This is a good thing and a one very valid reason why she has every right to trust and value her care team. There is evidence is that services do add diagnosic labels- and that when services do start piling on a lot of labels they may have lost any understanding of that person’s needs. This leads the service to fail to provide help.

My view is that the labels I have received have been meaningless and useless […] Calling it autism or ASD, ADHD, schizoid personality disorder, dysthymia or anything else has not led to any clinical utility, quite the reverse […] Each person I have seen has adhered to their little hobby horse; my interests, needs and preferences have been ignored. In each instance no one has done a follow-up and no one seemed interested in how I got on. Brian McCabe

Furthermore, psychological research backs up these views, suggesting that psychiatric diagnosis in and of itself can be a distraction from interventions that might help.

The findings in these two research studies show that medical labels can be an obstacle not only to the treatment process and outcome, but can also be problematic to how the individual being labelled perceives him or herself as a person. The label is “sticky” and stigmatising, hard to remove and is unlikely to be helpful to the individual’s understanding of {their} mental health problem.” BT UK News online 18-08-2015

Though of course, the easy story for the service in that sitution seems to be that the person is so complex and impossible to understand that it is their own fault that there are bad outcomes- though, given the evidence that diagnosis itself can cause complexities, that would be an unscientific (and an unethical, blaming and professionally abusive) conclusion.

The picture is of course nuanced and some diagnosis seem to be more easily understood as a straightforward description of a difficulty – eating disorders for example and perhaps depression or anxiety. Other labels seem to imply a greater sense of pathology within the person such as ‘personality disorder’ or ‘schizophrenia’. Someone messaged me to say that for personality disorder the problem with the label is profound, ‘it is exactly the core of the person, the very essence of who they are, that is labelled as disordered. It is devastating to people who have often survived what many have not. It not only negates their resilience and survival, but marks them out for an often shocking degree of abuse and dehumanisation within an already paternalistic system‘. All diagnosis are not created equal. Diagnosis can be seen as a ‘sorting hat’, primarily about moral and social judgements- bad? sad? mad?. After all, if there was a disease process there would be an objective test for it- like in other well-established and understood diseases, syndromes or illnesses.

Importantly, this means that some labels seem to kill hope as soon as they are applied. These labels do harm in and of themselves. Someone messaged me that as soon as diagnosis of personality disorder is given, ‘the damage has already been done as it relates to someone’s core identity and sense of self‘. As diagnosis is claimed to be helpful, that level of harm seems deeply unethical. In medical ethics the very process of labelling someone could therefore be considered to violate the principle of Nonmaleficence – that the practitioner must not cause any unnecessary harm to the patient. There are other ethical principles in medicine, such as Beneficence and Justice which diagnosis seems to violate too. I would be interested in having conversations about these ideas to extend and inform my thinking. I have noticed that these underpinning values and principles are not often discussed by Doctors- they seem to rely on guidance which tends to be more technical and procedural, which focusses on particular situations. Interestingly is it easier to find information on Dentists talking about these underlying values and principles than Doctors… and I have found nothing by Psychiatrists. There is a good argument that if practitioners continually return to and discuss these underpining principles it helps them to avoid behaving in professionally abusive ways. I think that might be another blog post too. I think I will call it ‘Society urgently needs to talk about Psychiatric ethics‘.

They never imposed a diagnosis on me, although they could have‘ highlighted where I have entirely different standards to many people. In my view ;

– diagnosis is subjective;

– diagnosis is as way to re-story someone’s way of making sense of themselves;

– diagnosis removes the link between life events, the person’s experience and their distress/ sense of self-in-the-world;

-there is no evidence for an underlying disease process (but biomedically orientated people still have a lot of hope for one);

– diagnosis is voted into existence by (mainly) rich, white, men;

-diagnosis upholds a capitalist, western view of the world often at the expense of people who are not white and European;

-diagnosis does not lead to either medication or therapeutic interventions that work in a specific way for that difficulty;

-diagnosis overestimates the impact of the biological level and underestimates the impact of social and psychological factors;

-diagnosis is limited and contested; and

-diagnosis can do harm in and of itself.

For me, this can only mean that although some people find it helpful at times, there can be no ethical way for professionals to use psychiatric diagnostic categories.

However, there seem to be lots of practical or social reasons for diagnosis. Nevertheless, alternatives, such as formulation or straightforward problem descriptions could provide more acceptable alternatives which do not do the same harm and which have fewer of the problems associated with diagnosis. These approaches could meet the need for people to be able to access benefits. They also provide frameworks for people to negotiate the complex tension between blame and support which often surrounds mental distress or altered states. I think these approaches do have problems though, but that is (yet) another blog post.

However, currently diagnosis it is the dominant way of looking at the world. It is so popular at the moment that is is impossible to avoid if you are involved with services. Even if Mental Health Services don’t tell you that you have a diagnosistic label (or labels) by the way, staff have told me that you will have one. The computer system requires it. Some people find out later that they have been labelled in ways they didn’t know about and were surprised by. This might be general or it might only be in one NHS Trust. I don’t know. I did note the strange passive voice when the worker was talking, as though a small diagnosis fairy creeps in against everyone’s will, and by waving its diagnosis wand imposes the label irrefutabley and mysteriously. When we use language to refuse to acknowledge that people take actions which result in outcomes, alarm bells ring for me. The passive voice hides a multitude of sins. I don’t believe in the mysterious case of ‘The Computer says -yes?’. It also strikes me that when there is such a lack of transparency (which is arguably against the principles of patient autonomy, non-maleficience, justice & beneficience, by the way), it might be incredibly hard for a patient/client to be sure that their service has not imposed a diagnosis on them. The system has the power to define the person through diagnosis and as there is no way to opt out of this process the person loses the right to define themselves. Silence, or compliance, or attempts to please this system will not protect you. However, the system might be merciful. It might define you in a way you agree with…or not tell you how it sees you.

The Tweep felt safe and that she was getting a ‘good enough’ service that she valued. That is a good thing. However, the fundamental difference between me and that Tweep is that she was satisfied with mercy. I am only interested in a Mental Health System that relates to the people it serves- which is potentially all of us- with justice.

References

A Prescription for Psychiatry: Why we need a Whole new Approach to Mental Health and Wellbeing by Peter Kinderman

A Straight Talking Introduction to Psychiatric Diagnosis by Lucy Johnstone

Author: Valid Consent

Promoting trauma informed care

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