Chasing Out Fear

In my last post I wrote about my fear that Julie would not be allowed out of hospital this weekend, given the way she looked.  I was wrong to be so afraid, and the doctors did stick to the promise they had made me at admission.  I have never been so glad to be proved wrong!  She was granted "home leave" for both Saturday and Sunday.  She spent this afternoon with me, catching up on TV she had missed, making pizza and contacting friends on Facebook.  It was obvious that the medication changes of the last week have had an impact - she was pretty wobbly and miserable - but the main thing was that she was at home.

After my last post I gave a good deal of thought to why I had become so afraid and distrustful of the hospital.  There are plenty of people in this world who can only dream of the kind of health care my family take for granted.  We have a dedicated team for adolescent mental health, we have inpatient care within a half hour drive of our home, we have the best drugs that can be found for the condition, and it all comes at no extra cost to the family.  For a family struggling to come to terms with an illness so severe, and so prolonged, we have a great deal to be thankful for.  Quite frankly, without the NHS, our savings, my livelihood, our house and quite possibly our marriage would all have been lost by now.

And yet, I cannot pretend that the year Julie spent inside hospital was a happy one, for any of us.  We may feel grateful to the system, but we were also afraid of it.  How did this happen?  We were relieved when she first went in, and keen to work with the staff.  But little by little, our frustrations and resentments grew as the months ground past with no prospect of release.  At the lowest point, last summer, I found myself begging a staff nurse to release my daughter for a planned day out - only to be threatened with the police when I proposed discharging her myself (she was then under-16).

Some of our problems last year were caused by the hospital staff exercising too much control.  Last year, it often felt more like visiting a prison, with the emphasis on locks and searches, on rules, and staff supervision.  Mental health units of all sorts are bedeviled with the problems of control - it is fundamentally unhealthy to have one set of human beings in so much control of another, even when it is necessary.  In mental health, the control is peculiarly insidious, both because the staff are required to pry inside the interior world of the patients and because they can wield enormous power through their drugs.  Despite all our complaints, for example, Julie was regularly sedated when the staff felt her behaviour was uncontrollable.  It is easy to convince yourself that you are acting in a patient's best interests when they are suffering an illness that leaves them so helpless, and which carries such a strong social stigma.  It is a fine line between support and tyranny, and I suspect many mental hospitals struggle with this in secret, especially in the awkward area of under-16s.  Last year, the excessive control leached out into our family, until every meeting with hospital staff became a source of dread.

But the hospital does seem to have changed for the better, leaving only these unhappy memories, and my knee-jerk responses.  Allowing families onto the ward, a more proactive approach on "home leave" and the stated intention of keeping stays on the ward as short as possible, are all good steps.  Stays in hospital at this age are bound to be disruptive for families - keeping connections to home as strong as possible helps combat this.  Sending Julie home even when she needs the highest level of supervision, is a strong statement of their confidence in us and her - a signal that we all need to hear more often.  If they can focus on changing her medication successfully and send her home as soon as possible I will finally be convinced that I have nothing more to fear.