I have just finished "The First Episode of Psychosis" by Michael Compton and Beth Broussard (Oxford University Press, 2009). It is aimed at families and patients, rather than mental health professionals. As far as I am aware there isn't anything else out there that covers exactly this ground: a lot of books and articles tend to come under the heading of 'schizophrenia' which is a bit restrictive. There are also very few books that address families.
It seemed quite a reasonable summary of the condition, certainly as far as it tallied with our own experiences. I was a bit worried at first that, written by Americans, it would be rather USA-specific, but it didn't feel that way. Most of their descriptions of assessments and treatments and even job titles seemed familiar enough. Even the names of the medications were given with both brand names and generics, which is quite important here in Britain where you are more likely to find drugs marketed under different brand names, or actually referred to by generic names. I was also pleased to see a chapter on the modern recovery movement, though it felt a little bit skimpy alongside the very lengthy chapters on diagnosis and medication! The graphics were rather disappointing: they made welcome decorative breaks from the text I suppose, but obviously families and patients can't be trusted to have real statistics and real values plotted on these charts.
Books like these can give you some insight into the condition, but probably the most important thing they give you, is an insight into how the medical world perceives the condition. Mental illness may seem odd enough in itself, but mental health institutions are truly odd places, with their own set of conventions. Just to take the issue of consent as an example: many patients stay in hospital voluntarily, but some are held there against their will. Even those who are voluntary patients soon find that there are finite limits to their powers of consent as soon as their symptoms are considered to be a risk to themselves or other people. All the patients and all the staff in the institution know this: no matter how much you talk about the patient being an equal partner in the treatment, at the end of the day, there are members of staff who can take away their liberty if they cross a line in what they say or do. It is a strange basis to any human relationship, and it is bizarre to have to live a sizeable chunk of your young life under these conditions.
I am still trying to digest what Fred the psychologist said to me a few weeks ago. He told me that he doesn't regard psychosis as an illness so much as a response to stress. It's not a view that fits very easily into most of Compton and Broussard's book, except perhaps that chapter on the recovery movement. It has made me think a lot harder about the assumptions built into the medical model, with its emphasis on illness and lifelong medication and control.
How Julie has suffered from control! Last night she got so angry about Genevieve trying to search her pockets that she ended up punching the wall. This is a fifteen year old girl who enjoys crocheting cuddly animals when she is feeling well enough to concentrate on anything at all. This is a girl who has to close her eyes during "scary" bits in a movie (usually anything that involves fighting or bloodshed). However, this is the third or fourth time she has punched the wall, so that her hand is looking a bit the worse for wear, though she has not managed to break any bones yet. I joked with her today on the phone that we should get her some boxing gloves, and at least this made her laugh.
My one good deed for the day? I phoned the hospital and explained that Julie wanted to have a new primary care worker. I was impressed with the response: they were very understanding, very helpful, and no awkward questions were asked. I felt worried having to ask because I genuinely like Genevieve but, as we agreed, if the chemistry isn't there, then the therapeutic relationship won't work. It is another example, though, of the strangeness of the relationship between patients, families and hospitals: I didn't even know if she had the right to have her primary care worker changed. The primary care worker is the person who, by virtue of their role, has to ask the most intimate and personal questions, and is supposed to summarize her feelings accurately in endless reports. Considering this is such an crucial role, it is strange that even as her mother, I wasn't sure how they would react if I pointed out that it wasn't working out very well with the person assigned to this role.
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