Sunday, 29 January 2012

29 January 2012 - Navigating the System

Through my childhood and youth in the 50’s and 60’s in Perth, Scotland, I remember my mother having nervous breakdowns and stays in the local mental hospital.  These episodes didn’t affect the happy memories of my upbringing as grandparents were there to support and protect. My father was a science fiction writer for the Daily Express and travelled up and down to London from Perth. However in 1970, aged 17, with my father now living permanently in London, I was the one having to support my mother who became unwell.  We lived on the fourth floor of a block of flats and she took to going out at all hours.  I had two younger sisters in the house.  Hospital was the only option and I visited her in the locked ward where she stayed with other women, one of whom had killed her child which upset my mother.   I often came away from visiting in tears.

I’ve always been resilient and non-conformist, a natural leader and a ‘what you see is what you get’ type of a person, so didn't expect to have mental health problems myself.  Then, 13 weeks after the birth of my second son in 1978, a traumatic experience with ineffective pain relief, I had a postpartum psychosis, voluntarily going into the local mental hospital in Lanarkshire.  Separated from my baby, it was a difficult time, and I didn’t want to take the ‘medication’ so was held down and jagged in the rear with chlorpromazine.   I soon started taking the drugs in liquid form, it seemed easier, then when obedient got it in pill form.  

It was a time in psychiatric care when the patients got their clothes locked away and had to wear pyjamas, many layers of them in my case.  But when the nurses tried to persuade me to sign a form for getting ECT, I resisted.  My mother had received many courses of ECT so I knew what it was and that she didn’t like it.  I managed to avoid the ECT being a voluntary patient and was discharged after a few weeks, back to my husband, baby and 2 year old son in a sedated state.  After about a year I was off the drug and getting back on with my life, having gradually reduced it, against the advice of psychiatrists.

In 1984 after the induced painful birth of my third son, while still in the maternity hospital, I had another psychosis -an escape from the trauma.  Within days I was voluntarily admitted to the same acute ward, where I buddied up with a fellow female patient, for I found the ward a scary place.  Chlorpromazine again, administered involuntarily by injection at first, and discharged after a few weeks, sedated and zombie-like, to try and care for 3 children.  Friends rallied round, coming in each day to help.  I gradually started to feel better, reduced the drugs and was off them all within a year, fully recovered.  A community psychiatrist supported my coming off meds, the only time I have known this to happen.

For the next 18 years I was in good mental health and supported other family members in their recovery and navigating of the psychiatric system, for psychoses seems to run in our family.  (we are all high achievers, creative, musical, imaginative and like to take risks)  I gained some qualifications and worked in the voluntary sector, in youth work and managing volunteers.  It was while working full-time in my home town, in 2002 and aged 50 that I had another psychosis.  I’d started the menopause and suddenly, within the space of a week or two, had entered another universe or as I call it ‘went off the head’.  My sons were concerned and I went voluntarily into the local Fife psychiatric acute ward.  

It was a mixed ward which I was familiar with, having supported others as patients.  I saw the dormitory accommodation, overlooked by male patients in single rooms, and decided to leave.  I was immediately detained for 72 hours under the mental health act and told that I had to take the drugs.  After 40 years experience of the psychiatric system, although psychotic I knew that I had to do what I was told or I would be ‘grabbed and jagged’.  So I took the anti-psychotic, risperidone, and was eventually discharged after a week.

As usual the anti-psychotic depressed me but, with the cocktail of psychiatric drugs now available, I was put on an anti-depressant, venlafaxine, which made me even more depressed and flat.  I took an overdose, something I had never done before, then was put on maximum amounts of the same anti-D.  The psychiatrist took me off risperidone then prescribed lithium to ‘augment’ the anti-D.  I was more zombie-like than ever, couldn’t concentrate or make decisions or feel happy or sad.  At meetings with the psychiatrist I was told firstly that I was bipolar then when I challenged this that I had schizo-affective disorder.  I didn’t believe any of it even though in a sedated state.

It was time for me to take charge of my own mental health so I started doing some volunteering – as a befriender on a mental health project, in a charity shop, at a support group for people with mental health problems.  To begin with it was very difficult as I didn’t often feel like getting up in the morning or doing tasks.  The drugs slowed me down and mornings were particularly hard.  But I soon began to feel a bit better with the activities and meeting people.  I started to reduce the venlafaxine and soon was off it which left the lithium.  The psychiatrist said that I needed to be on it for life.  I didn’t believe him and started to reduce it by 200mgs a month, I was on 800mgs.  This was in early 2004 and within a few months I was off all psychiatric drugs and feeling fine, getting back to myself.

Recovering from this last episode was much harder than in the 70’s and 80’s, I think because of the cocktail of psychiatric drugs now used and because of my past record of mental ill health.  When I had recovered the psychiatrist called it ‘remission’.  As if my periods of mental ill health - 6 weeks in psychoses, 4 years on psychiatric drugs – defined my life, rather than the 55 years spent in good mental health.  I call it a ‘piece of nonsense’ and now find myself an activist and campaigner in the Scottish mental health world.  There are areas of improvement in mental health services which is good but it’s time for a transformation of the psychiatric system, so that there are alternatives for people in distress, with no recourse to involuntary or forced treatment.