Learning on the Job

A couple of weeks ago I was invited to a training course - a training course for families and carers of people who experience psychosis.  So far I have attended two sessions, and am finding it immensely rewarding.  It is, believe it or not, the first time that I have actually met other families affected by psychosis.  This is despite Julie spending a year in hospital; her hospital ward discouraged contact between families, both as a matter of deliberate policy but also sometimes quite unintentionally as a result of the way they were organized.

This training course is run by the local early intervention team for psychosis.  It is an excellent service, and wins awards, but this is our first formal contact with it.  Julie cannot access this service, despite suffering from psychosis for the past eighteen months, because they only have funding for those aged 17 and above.  She is, ironically, too early for the early intervention service.  By the time she becomes eligible it will no longer strictly be an early intervention.  This is a pity because the quality of this service is obvious the minute you walk through their doors and receive an immediate and warm welcome.  The staff work well together as a team, nurses and doctors work together without elaborate hierarchical struggles, and the focus is not on safety but on getting people back into health.

The contrast with her current treatment is stark.  Her psychiatrist Dr Clyde is excellent, but he cannot meet her regularly - we do not even have a scheduled appointment with him.  Our only regular contact with CAMHS is with Martha, one of the community psychiatric nurses, who is the first to admit that she knows very little about psychosis.  At times she is performing little more than a monitoring service (and an expensive one for us since we are forced to send Julie into the clinic by taxi each week to see her).  If Julie pitches up at the clinic with psychotic symptoms very evident, Martha has no interventions she can try.  She has no alternative but to call in the duty psychiatrist, who can take hours to arrive, and who will usually be meeting Julie for the first time.  Security is the main priority of this service, and it is not at all clear that it is really Julie's safety that matters so much as safeguarding themselves from potential prosecution.  The only option on offer is a return to hospital - without an outreach or crisis team they are not equipped to support Julie at home.  If she manages to stay out of hospital (as she did two weeks ago) the only extra support she will get must come from her family.

Which is why I was so keen to take up the offer of the training course.  The situation at the moment is that Julie is fairly stable, but she is not living a normal life, by any stretch of the imagination.  Following the advice of her psychiatrist, I take her to the school every day or so, but she rarely goes to classes and stays only an hour or two before returning home.  She might see one of the counselling team who has taken her under her wing, or she might spend time in the support centre.  Until recently she spent most of her time at home watching TV while I worked, occasionally chivvied out for a walk with me.  Someone has to be in the house with her every minute of the day, and often she needs someone to sit with her or distract her.  She can do nothing independently.

It was clear at the planning meeting a couple of weeks ago that no one had any idea how to improve this situation.  In fact no one seemed to be particularly concerned about this situation.  Julie was stable, and not in hospital; there was a lot of talk about keeping down stress levels.  It was all I could do to bite my lip and not complain that my own stress levels were through the roof, trying to care for her.

And I could see how bored Julie was - it seems to me that boredom can be a stress all of its own.  She has had six weeks of limbo, and with every week passing by without a plan, the prospect of returning to school only recedes further.   By the time she feels ready to engage in classes again, she will have problems catching up with the work.  She is bright and interested pupil, ambitious to do well.  That is why this week, against the advice of her psychiatrist, I encouraged Julie to spend some time each day studying.  We came up with a plan to break down her work into small 10-15 minute tasks that she could tackle independently; she has difficulty concentrating for longer periods of time.  This also breaks down big projects into manageable pieces, which keeps her anxiety in check.  The rule of thumb is about 5 tasks a day, with less on 'bad' days.  (Realistically, I think this may be more work than many pupils achieve in an average school day.)  This week it has gone very well and Julie seems to be coping.  It remains to be seen how she feels about it as the weeks go by, but we can be as flexible as we need to be.

From next week we will have extra support in the form of home tuition.  Despite the chorus of disapproval at the planning meeting when I raised the very idea of home tuition, I decided to follow my instincts.  I pursued my other contacts at school, and with the help of a fantastic member of staff, I was put in touch with a whole network of teachers at Julie's school, all prepared to come out to our house after the end of their teaching day, to give Julie one-to-one teaching in their individual subjects.  The rule will be that there is to be no pressure on her - it is an opportunity she can take up, as far as she is able to.  When she is unwell, when the voices are too loud, I will ask them to stay away.  If all she can manage is a chat over a cup of tea, then that is all they will offer.  I have been quite overwhelmed by the offers of support I have had from these individual members of school staff in the last week, many of whom have never met Julie but who are willing to give up their own time to teach her.