In all the many times that I have spent periods of my life in acute wards, it has always been my experience that people in extremis self document. They may do so in the form of pictures, or in the form of poetry, or once, in the case of a mathematician, in the form of mathematical theory. But they are always self documenting. And in those periods of my life I too have self documented. In my last episode, I started off my time in hospital by continuing the practice that I do daily, of writing a diary. Once I had been there just under a week, it seemed clear to me that diary writing wasn’t going to work, or be the form that would be most useful to me during my time there. In fact, it seemed to me that it might lead me further down a psychotic path, due to the nature of it being necessarily inward looking. I ended up tweeting – I’d set up a twitter account very recently. So some of my very first tweets come from that period. And it was interesting, if slightly painful, to look back on the tweets I wrote in hospital. They gave an insight into my mind.
It’s not an entirely reliable form of note taking, granted, in that it is very much led by the service user and its consistency is subject to their ability to maintain a consistent narrative. However, I find it interesting that the NHS insists, while its staff are drowning in paperwork and unable to find time for face to face encounters with patients, on medical staff completing the documentation on the service users. In the meantime, a service user writing their memoirs, or completing a poem, or filling in a diary, is likely to be dismissed as having ‘writing disorder’.
I would suggest that the writing disorder is in fact systemic and that the person whose story it is is the one who deserves to have the writing disorder – whose story is it anyway? If the God of psychiatry was to diagnose the system, who would He or She diagnose as having the writing disorder, the service user telling their story, or the staff sweating over laptops at the very end of their shift to complete mountains of paperwork, with no end in sight and no time to spend with their service users? And who are these notes for? For the psychiatrist and to fulfil legal requirements. Is it not possible that the service user can largely, if not completely, take their own notes? After all, even if someone thinks that they are Einstein, or their documentation is erratic and unreliable, that is going to say far more about their state of mind than how many hours they slept and whether they were compliant or not at the community meeting. Is it not possible to train psychiatrists so that they can interpret the maths of the mathematician or the poetry of the poet? It’s not that far off interpreting body language or facial expression. It is another form of literacy.
I know because I’ve looked at the kind of creative writing and documents that get produced in acute units, that they are highly symptomatic of a frame of mind. And that they can also be encouraged sympathetically down a particular path. The maths can be interspersed with words – the pattern can start to have meaning. Seeing documents over time, as well as individual notes, one starts to get a sense of a direction of travel.
It seems to me that it is entirely possible that the history of psychiatry is a demonstration of some kind of writing disorder. That it posits as its hypothesis the idea that someone, a stranger, can understand, diagnose and fully notate another individual, who they have never encountered in their everyday context, but only in extremis, seems to me bizarre. The concept behind the notations in the annals of psychiatry haven’t changed in over a hundred years. It seems patriarchal in the extreme.
So if the service user is to be empowered to use their writing disorder for their own benefit, and not for it to be dismissed and only held on scrappy disempowered and disregarded bits of paper, I would suggest that they should be contributing to their own health record. They could do this in diary form, in blog form, in photo or image form, or they could record video, which is perhaps the most accessible way for people in crisis. In 2003 when I contributed to a research study with the King’s Fund, we found that people found video a highly accessible way to feedback on services and record their state of mind – in comparison to paper based feedback. At the time, we – Mental Health Media and I – dreamed a dream that in the future, every ward up and down the country would have a video diary room. Then you would have needed a camera operator and editor. Now, iPads are being designed to go on the walls of acute bedrooms. All you need is an app. What I would suggest now, is to go one further. What you need is the NHS to subcontract at least some of the record taking to the service user, who can document their own story for their official records. And once we train up psychiatrists in interpreting their record, we can have a patient led story which glories and celebrates in the records that we make together – here’s to writing disorder, institutional and individual.