Sunday, 6 October 2013

The Challenge of Being a Mother, Carer and Survivor, of Mental Illness and Psychiatric Treatment

Alex Salmond FM at Carers Parliament 2013
This week past, on 1 October 2013, I attended the second Carers Parliament in Edinburgh, Scotland, in my role as an unpaid carer of two adult sons with mental disorder diagnoses, also as an activist and campaigner in mental health matters.  It was held in the Hub on Castlehill, "constructed between 1842 and 1845 as the Victoria Hall to house the General Assembly of the Church of Scotland".   A few hundred carers, about 80% women, some joining us from other parts of Europe, and the Programme theme 'Your Rights'.

The First Minister Alex Salmond made a surprise appearance and keynote address, announcing the launch that day of a 'Statement of Intent' for Carers and Young Carers, with a commitment that Scottish Government, subject to a consultation outcome, "intends to bring forward legislation to support carers and young carers with a view to securing parliamentary approval before the end of the parliamentary session."

I am an unpaid carer and receive £59 per week Carers Allowance.  In return I care for my two sons as required 24/7, to advise and guide, advocate and give peer support, and stand with them.  The younger lives with me, the other nearby.  I do what I can.  It's not easy.  It helps that I am a survivor, of mental illness and psychiatric treatment.  However this weekend my patience and resilience have been sorely tested.  Because of a patient safety video on the Scottish Patient Safety Programme for Mental Health website, made by psychiatric staff who work in my local hospital, labelled "fun stuff", a comedy piece that didn't make me laugh.  What's funny about rapid tranquilisation (forced injections), restraint and seclusion if you're on the receiving end?  Or as a mother and carer picking up the pieces after traumatic psychiatric treatment.

I've always known that psychiatric wards were risky places because of what happened to my mother when I was young.  I have an early memory, foggy in detail, of being about 8 years old, 1961, at my grandparents' house, other family members present, discussing my mother who was becoming unwell.  The song Wooden Heart by Elvis was playing.  My uncle, a sailor who travelled abroad and brought back dolls in national costume for my granny, taking me out on his new scooter, hanging on tight as we went round corners, taking my mind off whatever was happening back at the house.  My mother would disappear for a while and I would stay with my granny.  In 1970 aged 17 I saw my mother in the locked ward for the first time.

In 1978 after a painful childbirth, losing grip on reality, I found myself going voluntarily into a psychiatric hospital.  I then knew something of what my mother had to go through, although she had it worse, being given many shock treatments against her will.  I managed to avoid the ECT and only got the forced injections.  Escaping the mental illness label by not believing a word of it.  My two younger sisters went through similar psychiatric treatment around the same time, late 70's, early 80's.  Middle sister unfortunately in same hospital as my mother, got forced ECT.  She doesn't speak of it.

Psychiatry likes to keep patients in a state of suspended infantilization where the trivial becomes commonplace to supersede, I suppose, the realities of living.  Whereas as a mother I want to see my children grow up, leave childhood behind and become responsible adults.  I don't see the point in psychiatric treatment which takes away personal responsibility and at the same time tries to lay the blame for 'mental illness' at the mother's door.  Blaming the mothers.  Biological psychiatry.  The biomedical model of mental illness.  "Family history of ..." written in psychiatric notes.  Patriarchal systems that keep women in their place and treat psychiatric patients as women.

Dr Bonnie Burstow, academic and feminist psychotherapist, writes in 'Understanding and Ending ECT: a feminist imperative' 2006: "Raising awareness of the special jeopardy of women who are older, women giving birth, and women otherwise violated (including previous psychiatric violation) is crucial.  By the same token, while it is important to press for psychiatry-free services generally, such advocacy is especially critical for these women.  Elderly women place a particular demand upon us, for they almost never step into a public arena to give testimony, and so their voices are never heard."

Next week there is a patient safety meeting at my local psychiatric hospital which I will be attending, chaired by one the managers involved in the "fun" video.  The driver or purpose of the meeting comes from the NICE (National Institute for Health and Care Excellence) guidance 'Service user experience in adult mental health': "Any attempt to judge the quality of health services would be incomplete without considering the experiences of people who use them. By finding out what service users think, valuable information can be obtained about problems with the way that services are delivered and used to assess the impact of efforts to improve the quality of healthcare provided."

However I believe that service user and survivor experiences should go much further than just being a "consideration".  Our experiences should underpin the mental health service improvement process.  Because we can't vote with our feet doesn't mean we wouldn't be leaving if we had the chance. I'd recently asked for the "fun stuff" video to be taken down from the local information, and it was.  Today though it popped up in another place on the SPSP-MH website where I wasn't expecting to see it.  I got a shock, it caused me more pain.  So I wrote a blog post on the SPSP site where I have the only blog so far and can have a voice: 'is patient safety a fun topic?".

I now take part in a number of Scottish mental health groups and meetings from the survivor and carer perspective, in a variety of disciplines, with the aim of speaking out and influencing system change and service improvement.  I feel at times like a warrior and resistance fighter with scars to show for it.  At other times I'm a mother and carer in nurturing mode.  Sometimes I get to be a grandmother and enjoy the childhood play.  These roles are all wrapped up in the one bundle and make me the person that I am.  It's a challenge.  So be it.


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