Meeting with researchers at Kings College London

I recently met with researchers Lucy Stephenson and Tania Gergel at Kings College London as part of my commission for the Mental Health and Justice project. They have been developing a new tool for advance decision making for people with bipolar, a PACT (Preferences and Advance decisions for Crisis and Treatment).

We discussed some of the issues surrounding insight in bipolar - at what point can someone be said to have lost insight into their illness? Is it a single point in time or a continuum? Some people are able to pinpoint the time when they lose capacity, but for me, it is a much more gradual process, and I can only identify signs of it retrospectively.

How do clinicians make the judgement that someone has lost their capacity to make decisions about their own treatment? Their assessments need to give a yes / no answer, so that a decision can be made about whether to treat a person in hospital against their will (sectioning). The criteria are: can you understand and remember information about your care, can you weigh the pros and cons of a decision and can you explain it to other people. There are complex power dynamics here, with the doctor having the power to detain you against your will - being on the receiving end of this is of course, highly disempowering. An advance directive is intended to go some way to redressing this balance.

Advance directives are uniquely difficult to write, as you are saying 'no matter what I say in the future when I am ill, do not listen to me' and treat me in the way I set out in this document which I have written when I have capacity. In a sense, it simultaneously asks clinicians to listen to my voice now, but ignore it in the future. This is called precedent autonomy. 

I went to training which Lucy ran to support people with bipolar to write their own PACT. It was very powerful to be in the room with other people who face the challenges of living with bipolar as an illness at the same time as navigating the difficult system of inpatient and community care.

To read more about King College's research into advance directives for bipolar, click here.