Sunday, 27 May 2012

27 May 2012 - Picking Up The Pieces After Traumatic Treatment In Psychiatric 'Care'

The epidemic of psychiatric drug prescribing and mental illness diagnoses makes it particularly difficult for those of us who have the misfortune to experience mental distress and require hospitalisation.  It's nigh impossible to escape a label or being forcibly treated.  There is no time or effort taken to implement a person centred approach.  The psychiatric fraternity would say it's about minimising risk and keeping the patient safe.  In reality it's very risky and unsafe.  A Russian roulette of what is euphemistically called care.

My son and I know all about this for he was recently detained in a psychiatric hospital, a stone’s throw from our house.  Now home he is trying to recover from the mental distress which caused his hospitalisation.  But the bigger challenge for us both is getting over the trauma of his treatment.  The dehumanising experience of being locked in, restrained, secluded and forcibly jagged.  Resulting in injury, lack of confidence and flashbacks.  Added to this he is coping with side effects, tapering the drugs, experiencing withdrawal effects and low mood.  Although we are focused on recovery it often seems like we are on our own, battling against the system.  Fighting to be heard and to be helped.  Dogged by the mantra of severe and enduring mental illness.  Psychiatric drugs as ever the main tool in the toolbox.

As my son’s carer I provide advocacy and peer support, standing with him as a witness and bulwark (defense or safeguard).  My lived experience, of surviving mental ill health and the psychiatric system, is very useful in the caring role.  I like the term survivor, it suits me well.  And think we need more of the survivor focus in Scotland.  I’ve heard of others, I’m not the only one.  People like me who have fought to get out of the system by taking charge of our own mental health.  We have stories to tell and deserve to be heard, and I recommend the book 'This is Survivor Research' edited by Angela Sweeney, Peter Beresford, Alison Faulkner, Mary Nettle and Diana Rose.

"Survivor research is developing a new foundation ... such as mental health policy, practice, education and anti-discrimination ... cracking the bedrock of the most fundamental beliefs traditional mental health systems rest upon", from the foreword by Mary O'Hagan.  From Chapter 3, So What is Survivor Research?, Angela Sweeney writes about the "strong relationship" between user research and the user movement.  With five underpinning values and principles (Turner & Beresford, 2005):

  • empowerment
  • emancipation
  • participation
  • equality
  • anti-discrimination
Being a carer in the mental health world feels like being at the bottom of the pile.  Disempowered and isolated it requires all our inner resources to retain hope.  In the UK we receive £58/week for providing over 35 hours of care.  In reality this can amount to a 24/7 responsibility.  Being discharged from psychiatric inpatient care there is little ongoing support available in my area for a person returning to the family home to be cared for.  For example I completed a Carer Assessment Form and nothing has come of it.  I think that statutory agencies are like watchdogs with no teeth.  Guarding when they should be enabling.  More about enforcing than encouraging.

Scottish Recovery Network writes about a Scotland where mental health recovery is a reality for all.  The reality in my neck of the woods is that we are on our own in terms of recovery.   Our experience is of maintenance and a continuation of the severe and enduring label.  A dead end road for those of us with more than one episode of mental distress requiring hospitalisation.  We have to fight against discrimination, resist the negative prognosis and somehow recover despite the odds being against us.
The book 'Recovery: An Alien Concept?' is an exploration of the concept of recovery by Ron Coleman, including how he gave up being a “chronic schizophrenic” and went back to being Ron.  With his wife Karen Taylor they run Working to Recovery Ltd, including Respite and Recovery in Habost, the Port of Ness on the Isle of Lewis, Western Isles, Scotland.  Breaks for individuals wishing to engage with their emotional, spiritual and mental health issues in a positive way

Is recovery only for people in the community where most of the resources are?  Yet even in the community accessing psychological therapies requires patience and persistence.  Pills often being the first port of call.  'More than one in 10 Scots on anti-depressants' was the headline to a BBC news article in September 2011, estimating that 11.3% of Scots over 15yrs old took the drugs on a daily basis.

In psychiatric wards it is more like 10 out of 10 patients who are on psychiatric drugs, many on cocktails of neuroleptics.  Anti-psychotics, anti-depressants, mood stabilisers and benzodiazepines.  The mentally distressed in acute psychiatric wards with only nurses to hand.  Armed with drugs and notes they strive to keep order and chaos at bay.  Theoretically.  In reality it’s like a free for all where dominant patients rule and those with addictions are in clover, drugs on demand.  Some get special treatment, the returners or revolving door patients, whose ways are well known to the nurses.  These fortunates know the system and can work it to their advantage.  Although they are caught up in the system just like everyone else.  And there is no advantage to anyone.

NHS Education for Scotland has developed the Matrix- A Guide to Delivering Evidence-based Psychological Therapies in Scotland.  Produced to help NHS Boards reduce waiting times for psychological therapies and to provide a greater range and quality.  It should improve the situation and reduce the psychiatric drug prescribing.  The ideal would be the availability of talking therapies for people in crisis and in acute psychiatric wards, rather than drugs or nothing.  As mentioned in my last blog post the Tidal Model in nursing practice, helping people at their most distressed, offers ways to build relationships and of listening to their stories.

Wednesday, 2 May 2012

2 May 2012 - Severe And Enduring Mental Illness - A Self Fulfilling Prophecy

I've always thought that the label of 'severe and enduring' coupled with 'mental illness' should be laid to rest.  Put in the grave alongside schizophrenia.  Another double whammy in the life of a mental patient, adding insult to injury.  And all because we have experienced mental distress, a normal reaction to a mad world.  Refused to accept the treatment and resisted the diagnosis.  They say we lack insight, these psychiatrists in loco parentis, and we might think the same of them.  A stand off.  Their weapons of restraint, seclusion and forced treatment a threat to our sanity.  Compliance is like surrender, our independence subsumed into a drugged uniformity of indecision and flatness.

The severe and enduring label ensures our maintenance or continued compliance and the teams of nurses, occupational therapists and clinical psychologists assigned to our continuing care.  But there is a balance to be achieved (I am being ironic), in terms of not having too many mentally ill people on incapacity benefits or too many acute psychiatric inpatients at a cost of around £2500/week.  In 2006 it was reported that “The proportion of people claiming such benefits due to mental illness has risen from 16% in 1988 to almost 40%.”.  Hence the hijacking of the recovery agenda by the government, in my opinion.  A proliferation of employability projects.  And external agencies brought in to get people off benefits and back into work, a system described by MPs and campaigners as "chaotic" and "not fit for purpose".

Surviving the psychiatric system and recovering from mental ill health is a real achievement in the face of these lifetime labels and neuroleptic numbing.   I remember putting my recovery story on the Scottish Recovery Network website in 2005 then updating in March 2008.  Looking back at my words and final paragraph I notice the optimism and hope "At this time it feels like the doors are all opening and I'm running through".  I believed the peer support movement was coming to Scotland and I was going to be a part of a grassroots user survivor led community development initiative.  But it wasn't long before the doors started to close and with it came the realisation that this wasn't to be a bottom up movement but a top down strategy.  Not peer led but government controlled.

Meanwhile the severe and enduring mental illness mantra goes on.  Stigmatising and limiting.  Are only some of us allowed to recover while the rest of us are consigned to a long-term existence on psychiatric drugs?  Under a mental health act that describes us as having a mental disorder, that allows and therefore supports involuntary/forced treatment.  Prescribed by psychiatrists and carried out by nurses.  The elephant in the recovery room written about by Mary O'Hagan: "Legal coercion, through mental health legislation, empowers selected mental health professionals with support from the police and the judiciary to detain people in hospital, treat them without their consent, place them in solitary confinement (seclusion), and in many jurisdictions to compel people to take treatment in the community. Legal coercion erodes all the cornerstones of the recovery philosophy, yet it remains a core response in our mental health systems.".

I want to see clinical psychology get off the fence, the moral high ground of evidence based research and quick fix techniques, and get intimate with madness like psychoanalysts, psychotherapists and family members who live with the reality.  The day in day out reality of relationship that can lead to real recovery, empowerment and transformed lives.  Where I live it's difficult to get psychological treatment, especially with a label of severe and enduring mental illness.  We have to fight to get an appointment and then fight to get person centred treatment.  This is where peer led peer support should be available, "services run by and for mad people".  At the sharp edge and at the bottom of the pile.  With the stigmatised and marginalised, in solidarity.

I want to see the Tidal Model - "The first mental health recovery model developed conjointly by mental health nurses and people who have used mental health services" - embedded in nursing practice here in Scotland.  Professor Phil Barker and Poppy Buchanan-Barker are the architects of Tidal, they live in Fife just up the road from me.  First launched in England in the mid-90's, over 100 projects have been established in the UK, Ireland, Australia, New Zealand, Japan and Canada.  "In practice, the Tidal Model emphasises storytelling – through both individual and group work.".  

Cuapr Tidal Crew
Poppy and Phil skippered a Tidal workshop for users, survivors and carers in Cupar, Fife, last year (see our newsletter write up page 3).  A great time was had by all on our voyage of discovery, telling stories on the way.  The realisation dawned on us that, although we were travellers together, it was up to each of us to carry our own load, to be strengthened for the journey and to encourage others to do the same.

Let's support our home grown innovators and specialists rather than keeping warm the old chestnut of "a prophet is not respected in his (her) own country".  Governments and the psychiatric system take heed.  Psychiatry is responsible for the increasing numbers of people on benefits due to mental illness.  Telling people they have to stay on psychiatric drugs, have a lifelong condition, can't work and need to be maintained.  Government has to properly equip the experts by experience to do the job of peer support and peer led change.  Put your money where your mouth is.