Wednesday, 12 March 2014

reflections on the reframing distress seminar yesterday and the separation of the sheep and the goats

Here's a piece I wrote last night and sent to Scottish Government high heid yins after their seminar yesterday on 'Reframing our approach to supporting/responding to people in distress' at the Royal Scots Club in Edinburgh:

"Why I am dead against the two tier recovery system in Scotland with its separation of sheep and goats, the folk with “common mental health problems” from the folk with “severe and enduring mental illness”


We are all sheep.  Mental health difficulties, emotional distress and crisis situations are common to all.  Altered mind states, paranoia, spiritual beliefs, hearing voices and other phenomena may be experienced by many people in life, due to a range of reasons, traumatic or painful, creative or self inflicted.  It’s normal to feel things deeply when a person is sensitive to pain, has been traumatised or subject to abuse.

Some of us when in mental distress or altered mind states have had no other option but to engage with psychiatry.  We were forced into it or persuaded to be a voluntary patient and then were coerced.  We may not have wanted to swallow psychiatric drugs but our wishes didn’t come into it. 

Some of us may have resigned ourselves to taking them, needing them, accepting that we have a mental disorder and require lifelong treatment.  Some may welcome the diagnosis, like to be under the authority of a psychiatrist, trust in their judgement, and believe that psychiatric drugs are necessary. 

Others of us do not accept the label, reject the prognosis, taper the psych drugs (against the advice of psychiatry) and recover.  Most will disappear back into “normal” life and this is what I did back in 1978 and 1984 after brushes with psychiatry, and did the same in 2004 but then was drawn back into Scotland’s mental health world after sharing my recovery story on SRN, in 2005.  To begin with, on the periphery, while working full-time in an FE college and gaining another postgraduate qualification.  But the peer support movement drew me in, the promise of meaningful involvement, empowerment and recovery.  Just what I had experienced personally after mental health issues in 1978, 1984 and 2002.  I knew it was possible and believed in the power of peers.  So in 2008 I committed myself to promoting PS and to being part of Scotland’s recovery movement.

But I soon found out that Scotland didn’t want me to be part of the team unless I conformed, fell into line and did what I was told.  I remember in 2008, after the WRAP Facilitator training, saying to a national organisation leader that I didn’t recover from mental ill health just to be put in a straitjacket by them.   And so the restraining began.  I’d been a community development worker since 1980, setting up many projects in different areas with all ages of people, a professional with qualifications to show for it.  Yet it all counted for nothing in the alternative universe of mental health world shenanigans.  Where the stigma of mental illness is a marker of disrespect and advancement only happens if you are a crony or are not a boat rocker.

Six years later and I am a psychiatric survivor activist and human rights campaigner in mental health matters.  Blame it on the recovery movement and on the human rights abuse of a loved one in a psychiatric setting.  What use recovery if it’s only for the sheep?  No use if you’re a goat and having to suffer for it.

I expect Scottish Government to make straight paths and level playing fields so that people in distress are neither sheep nor goats, and more than that, for SG to have an influence on psychiatry so that goats can become sheep, in the short term, and in the long term that it will only be people in distress and real person-centred care for anyone and everyone.

We need more psychiatric survivors at the table and in the conversations, people who have made a complete recovery from mental illness and got off the psychiatric drugs, with or without the support of psychiatrists.  Having survivor voices will bring balance to the proceedings and bring psychiatrists back down to earth where they belong.  Alongside the rest of us, Jock Tamsin’s bairns.

I’m still not sure why the survivor voices have been silenced in Scotland’s mental health world when they are alive and well in other UK countries.  England has NSUN and user/survivor researchers in university positions.  Recently I heard that Diana Rose has become a Professor in User-Led Research at the Institute of Psychiatry, King’s College, London.  Dr Rose has written articles on ECT from the user perspective.  Meanwhile, at Scotland’s universities, it seems that we are not even on the first rung of the meaningful involvement ladder.  Except for clinical psychology that is making an effort.

I was asked today by a manager if I was despairing.  I said no.  But I don’t have much hope that change is coming anytime soon in Scotland to bring about the meaningful involvement of the experts by experience in mental health service design and delivery.  You can write about it in government documents and speak about it at government events but until I actually see it happening then I just won’t believe it.  The emperor is naked.  I have to say it. 

I know what empowerment and meaningful involvement is, having worked in communities and with people for over 30 years.  I also know what psychiatric treatment and mental health recovery is about, having engaged with the system for over 40 years as a patient, carer, advocate and peer supporter.  I’ve been there, done that, got the T-shirt.  A mother and grandmother who has seen 3 generations of her family taken in hand by psychiatry.  It’s not been a positive experience. 

And now Scotland seems to be spearheading the brain surgery for mental illness or NMD for short.  Fiddling with neural pathways while transgenic mice are being sacrificed in the search for biomarkers.  Clutching at straws to justify the schizophrenia label and lifelong prognosis when the drugs don’t cure and bipolar disorder is the proof. 

Yes there are no magic bullets but why does it have to be a quick fix and a heat target?  How about slowing things down and taking time to think it through?  Process rather than outcome.  Stories rather than evidence.  Quality not just quantity.  Holistic, empathic, relational care where listening is a priority and risks are factored in.  Yes, being human, there’s the challenge.  Over to you."


2 comments:

  1. ''Clutching at straws to justify the schizophrenia label and lifelong prognosis when the drugs don’t cure''

    I see the terryfying results of that belief in Poland, even among diagnosed people. They think sometimes that their lives are damaged irreparably and there is no hope.
    Only experts by experience can bring hope - if they were able to survive and enjoy a complete recovery surely there is hope for others?
    The survivors have a duty to share their experiences and I am so proud of all your efforts, Chrys.
    When my daughter speaks about her experiences of psychosis and the complete recovery against psychiatrists' advice she is sometimes told to suffer from symptoms! A young university teacher, happy and cheerful, going on her own to conferences abroad, delivering papers, teaching big groups of students, taking care of herself... but because she doesn't accept meekly the mental health professionals'
    judgments she can't be healthy, can she?

    Regards from Zofia



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    1. Thanks again for your comment and encouragement Zofia.

      And well done to you and your daughter for being strong and independent women.

      All the best, Chrys


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