Advance Statements and Taking Back the Power. A service users account.
Advance Statements and Taking Back the Power
As a sometimes conscript of the psychiatric system I have reflected on ways of staying in control at times of mental distress and have come to believe that an advance statement or directive has the potential to take back control. Especially if it is linked to a self management tool like the Wellness Recovery Action Plan (WRAP) and the Peer Support of people with lived experience. I think it makes sense for everyone who has experienced mental distress to consider this action, for as Dr Martin Luther King Jr said “there is power in numbers and there is power in unity”.
When I first heard of the advance statement my initial response was a sceptical one, that it would have no influence on what happened to me if I became mentally distressed and had to be hospitalised. My experience of voluntarily entering psychiatric wards (1978, 1984, 2002), in mental distress or diagnosed psychotic, has generally been of forced treatment and psychiatric drugs. In the most recent episode the old mental health act came into play, a 72 hour detention in a psychiatric hospital, a mixed gender acute ward where I felt very unsafe and didn’t want to stay. Force, in my experience, can be the threat of physical restraint and the restriction of freedom.
Therefore, for those of us who have been used to losing our personal power when mentally distressed, or having it taken away by compulsion or threat of force, it can be difficult to trust in any personal statement that may be overturned by psychiatrists, and which has no legal standing. The challenge then, as I see it, is in the writing of an advance statement that has power to take back control and to do this alongside a psychiatrist. Negotiating a plan of action that will ensure a preferred course of action and minimise the threat of compulsion or force.
In Scotland the Mental Welfare Commission has to be informed when advance statements are overridden, and can make enquiries as to whether it is a “genuine override” and if so how did it happen (see MWC annual monitoring report p 49,50). In 2011-12 there were 19 recorded cases of “actual overrides”, although the MWC doesn’t have a record of how many advance statements exist in Scotland. Of these 19 overrides only 2 cases were followed up by the MWC, the others were sorted out in meetings with a DMP (designated medical practitioner) or at a Mental Health Tribunal. I would be interested in any patient feedback but there seems to be no record of this. And my own experience, as a carer attending two MH Tribunals, was of the psychiatrist having the most power or voice, followed by the mental health officer, then the carer and the patient last of all. The tribunal members at these meetings I attended were from professional backgrounds, such as psychiatry, legal, social work.
A WRAP crisis plan can be useful in creating or inserting into an advance statement. I first heard about WRAP through attending a Scottish Recovery Network seminar in April 2006, Edinburgh, facilitated by Stephen Pocklington of the Copeland Center. Then in June 2008 I completed the WRAP Facilitator training, also delivered by Stephen, and proceeded to lead WRAP workshops in different Scottish areas, with another colleague co-facilitating. Our first event was in Fife, ‘An Introduction to WRAP‘ attended by 28 participants travelling from all over the country. I went on to deliver 2 day and 6 week courses.
Early 2008 I also discovered online the Pathways to Recovery strengths self help workbook from the University of Kansas, and ordered 20 copies, then the Pathways team sent another 20 free which I distributed to colleagues nationally. It was the beginning of a much appreciated supportive relationship and they posted WRAP materials, keeping in touch by Email [many thanks to Joanna from KU, a pen pal and a listening ear]. I used the strengths exercises in WRAP and PS training, and now in lecturing work with mental health nurses, from the survivor perspective, another great resource in reclaiming our stories and recovering our lives.
And so I have started to construct my own advance statement, it’s a work in progress that will take time to complete. I met with a psychiatrist after drawing up a draft copy, using a template from Alzheimer Scotland, and adapting it to suit my preferences. We had an interesting discussion around anti-psychotics, neuroleptics, compulsory treatment, having a single room, being treated with respect, home support rather than hospitalisation. We didn’t agree on everything and I hadn’t expected that we would. But it was a start to the job of creating a workable advance statement that will enable me, if in mental distress and finding myself in the psychiatric system, to take back the power.
Advance Statements are an essential part of helping service users and professionals understand each other especially when in time of crisis. Simply having one can often be a great comfort in reducing fear and anxiety.
If you dont have one already then do ask your care coordinator or psychiatrist. There will be help sessions available soon to help people fill them in so will keep you posted on here.