Fine Spring Weather and Hospital Meetings

What a difference a fine spring day makes.  Julie and I went for a walk this afternoon in one of our favourite gardens - small enough to enjoy in one afternoon, but large enough to afford solitude.  It was by far the most enjoyable day we had spent together since she went into hospital.  Julie was chatty and quite energetic, almost her old self. It was as if the fog of depression had cleared for a while.

We went home and she stayed for dinner (I cooked her favourite, toad in the hole).  But she elected to return to the hospital for tonight - it had all been a bit too much for her last week.  How painful it was to let her go after such a happy afternoon!  How glad I was that she let me hug and kiss her goodbye, and that she returned the hug.  I retain the physical feel of her.

On Thursday we all endured the CPA meeting together - Julie, Joe and myself.  What does CPA stand for?  I learn it and then almost immediately forget it every time - there must be some symbolism in this.  I spent part of the meeting making up meanings for the acronym - Coloured Pencil Alternative, Crap Psychiatrists' Association. I tried this on Joe later and he came up with some of his own that I can't write down here - but which were extremely funny.

There were twelve people at the CPA, which made a total of nine professionals, including two consultant psychiatrists.  The combined staff salary bill for that one hour must be staggering.  The situation was put succinctly enough by the hospital consultant: "We don't know what is wrong with Julie and it is unclear what is the best treatment for her."   She has now had twenty-two months of treatment.  Later, her primary nurse summarized it for her: "Congratulations: you have Julie disease." she said.

In the family, none of us are particularly bothered by the lack of diagnosis.  None of the labels that could be attached are particularly attractive, especially at age 16.  Julie and I discussed this this afternoon, during our long walk down a beautiful tree-lined avenue.  We both agreed that we were happy for them to carry on treating the symptoms - psychosis and depression - wherever that led. 

At the moment this means that they are tinkering with both her anti-depressant and her anti-psychotic medication.  Since one of her more spectacular overdoses involved a box of sertraline, she has been put onto mirtazapine, which seems to be the in-thing.   It only reached a therapeutic doze last week, but perhaps we have it to thank for our sunny day out today.  Simultaneously they are reducing the olanzapine, which is a bit unexpected.  The reasoning seems to be "She's on a very high dose of this not very nice drug and she's still having a lot of symptoms, so maybe it's not really working."  I would like to see her on a lower dose, but it is hard to see how we will make any sense of the situation for some time if both drugs are changing.  If she feels dreadful again in two weeks' time will that mean the mirtazapine doesn't work for her, or that she needs that olanzapine top-up?  Or will it really be that it is raining, that she is feeling fed-up with her weight, or that she is worried about taking an exam?

The CPA system apparently replaced something worse.  The idea is that no decision should be made without the whole team, the patient and the family present.  In practice, it is hard to make any decision with that number of people in the room.  Even the discussion about medication was very abbreviated - it was just impossible to discuss it at length while so many other professionals were waiting to discuss her education, or her talking therapies.  It was obviously a decision that had been made by the psychiatrists earlier, and was not really open to discussion.  For Joe and I these sessions feel vaguely intimidating and exhausting.  For Julie they are hideous, since every conversation in the room is about her, but none of them ever involve her.  At no  point does anyone ask her (or her parents) what her opinion is, though Joe and I do speak up when we can.  But with so many professionals present, the harsh reality is that our voices frequently go unheard.  Julie's voice is almost silenced.  I am hugely grateful though to her primary nurse, who sat beside her for the whole meeting, checked she was coping, and offered to speak for her if needed.