Monday, 31 December 2012

For Auld Lang Syne, Here's To A Guid New Year

[Mad in America blog post 31 December 2012]

It's the last day of 2012 and I for one am glad it's passing.  It's been a challenge and at the same time interesting.  Being at the end of my tether on many an occasion.  Thinking things could get no worse and they did.  And yet, surviving the experience, I remember with gratitude the acquaintances as described in Auld Lang Syne by Rabbie Burns.  While trying to make sense of the meaningless and the reason as to why force has to be used on the mentally distressed.

Here's to all of us who are working together to bring about change in the psychiatric system, even transformation, a different paradigm.  "And there's a hand, my trusty fiere!  And gie's a hand o' thine!"  What an encouragement to think that we're not alone in the battle or on the journey.  The Mad in America community and website bridging the "seas between us".

It feels like "we've wander'd mony a weary foot" on our roads and byways.  And yet "we'll tak a cup o' kindness" for the sake of days gone by and the once upon a time of our lives.  Stories and testimonies that matter.  That make sense of where we find ourselves, rooted and strengthened.  Resistant and standing firm.

I'm looking forward to a good new year and more of the same, in terms of writing, activism and campaigning about mental health matters.  I want to continue speaking out about the use of force in psychiatry that happens because of compulsory treatment.  It seems obvious to me that if the system is allowed to coerce then it will.  Alternative ways of working with people in mental distress has to be the answer.

I want to see the abolishing of forced ECT/electroshock.  In Scotland two thirds of women to one third men get ECT (71%/29%), according to the Scottish ECT Accreditation Network (SEAN) annual report for 2012, and of these one third get it against their will.  And half of women over 60yrs old getting ECT, are given it involuntarily.  They are deemed to be without capacity by professionals.

Then there is the NMD, neurosurgery for mental disorder, or brain surgery for mental illness.  The Dundee Advanced Interventions Service perform these operations in Scotland.  The mental health charity Mind says "people who have the surgery are likely to need continued psychiatric support afterwards, even if the surgery is considered to be successful.  The procedure cannot be reversed.".  The criteria for NMD includes having had two courses of ECT and being treatment resistant, or useless treatment in my opinion.

I am not happy about the psychiatric drugging of women and children, in particular pregnant women.  I had puerperal psychosis in 1978 and 1984 which I managed to recover from.  If it was nowadays I think it would be a lot more difficult with the 'perinatal psychiatry' focus.  Where the trauma of childbirth and pregnancy is pathologised, potentially tying a woman into a psychiatric history and stigmatising labels.  This is another area of concern.

Therefore I am still pressing on and looking ahead with hope to a guid new year.  Remembering the struggles and overcoming in the auld year, the helping hands along the way.  When the doing of it was the making of it.  Let's raise a glass and toast each other for the work we've done and the work we're going to do, in 2013, ringing in the changes.  Cheers!

the postcode lottery of mental health care in Scotland

I've had cause recently to consider again the postcode lottery of mental health care in Scotland.  Where some areas seem to have a variety of choices for people in mental distress and requiring psychiatric treatment.  And others of us are at the bottom of the barrel.  Very little choice, lack of resources and mental health services that struggle to be either person-centred or recovery focused.

Edinburgh, for example, has a crisis centre for service users and carers who can self refer and stay for up to a week in a calm environment.  Lothian also has IHTT, intensive home treatment teams where a person can be supported through a mental health crisis at home.  A few other Scottish areas also have this.  Fife doesn't and isn't planning to.  

Glasgow has the Esteem service "a dedicated service for people aged 16 to 35 years old who are experiencing a first episode of psychosis. The team offers advice, support, treatment and various interventions. The team is multi-disciplinary, comprising consultant psychiatrists, psychologists, occupational therapists, nurses, support workers and administration staff.".  

The only other similar service is in Edinburgh, for young people, the "NHS Lothian Early Psychosis Support Service (EPSS) is a unique CAMHS based early intervention service for psychosis".  However both of these services, I believe, are based on a biopsychosocial model of mental health.  And it's the 'bio' bit that gives me cause for concern.  For I have never believed that mental distress was bio anything and is about life's traumas and problems.  

The bio bit opens the door to ECT/shock treatment and brain surgery for mental illness.  It also can mean lifelong mental illness and psychiatric drugs, being consigned to the severe and enduring mental illness label and cul de sac.  Where recovery is not mentioned and maintenance is the name of the game.  That's not to say that some people might require maintenance and support through life.  However hounding folk off welfare benefits is not the answer.

It seems to be that Scotland's mental health services in different areas are autonomous.  They get to 'do their own thing'.  Which means a postcode lottery for those of us at the receiving end.  And survival of the fittest.  We can't all move to the capital so as to be best served, mental health wise.  Neither should we have to.  So what is the government going to do about these inequalities in mental health care?

Taking away the user voice isn't the answer, as in doing away with independent advocacy and user led groups.  Neither is trying to silence the critical voices in psychiatry.  These are what bring about balance and expose human rights issues and abuses.  There has to be room for dissenting voices in a free and democratic country.  In my opinion.  Otherwise we will all be constrained, restrained and forced to conform.

Friday, 28 December 2012

complaints processes in psychiatric situations? meaningless

Looking back on 2012 it has been a year, for me, of raising complaints against psychiatric and mental health services in Fife.  At this point in time it seems to have been a meaningless exercise.  Errors and incompetence explained away as learning points and not the system's fault.  Blame laid at the feet of 'mental illness', an all-encompassing term to justify poor/bad practice and an unwillingness to provide true person-centred care.

Seclusion, restraint and forced treatment the 'norm', aligned with the bullying and intimidation of carers who dare to challenge the status quo.  Institutional treatment extending to anyone who doesn't agree with the system and refuses to go along with it.  In other settings this would be unacceptable.  But in psychiatry it's OK and the odd ones out are the non-conformists and human rights activists.

Of course I'm painting a picture of an extreme situation which for me and mine was what happened.  For others it may be less restrictive and more acceptable.  It depends I think on the circumstances and the setting.  But the availability of forced treatment means it can be used and is a choice, for psychiatric staff who are under pressure, or are getting away with it.

Which comes down to intention and reasons for oppression.  They may be in the habit of doing it and prefer to dominate rather than to negotiate.  Less skill required, less effort and the system will collude to provide an escape or excuse for it.  A cover up and a whitewash.  Psychiatric notes used to justify actions rather than reflect truth.  A work of fiction by any other name.

Psychiatric labels that stigmatise and marginalise, reasons for ignoring opinions and reinforcing control.  Mental health act safeguards that aren't always safe and principles that aren't always adhered to.  And a Mental Welfare Commission that should be protecting the rights of people with mental illness and promoting their welfare.

So what does the new year hold?  More of the same?  Well I'm looking for changes and improvements to the psychiatric system and its neighbouring mental health services, in my locality and further afield.  Where the voices of services users, survivors and carers are valued and respected.  Where critical voices are listened to and not excluded from the conversation.  Equality and diversity, of opinion and stance.

A strong, independent user/survivor voice that isn't afraid to say it how it is.  Freedom to demonstrate and protest about human rights issues and abuses in psychiatric and mental health care and treatment.  For otherwise we can't call it care and it isn't person-centred.  An end to oppression and forced treatment, is my new year wish and aim.  Nothing less will do, in my opinion.

Saturday, 22 December 2012

getting into the holiday mood and Scottish verse

A bit of light entertainment and laugh out loud, daft, poetry from The Wee King o the Midden - manky, mingin rhymes in Scots.  I'd got it as a Christmas gift for my grandson but think he may be a bit young, at 7yrs old, to appreciate some of the verses.  So I'm keeping it for myself as a wee present.  

Furry Hat

There wis an auld wifie
Wha bade in a flat
Wi a one-leggit parrot
An a flechy broon cat.

She fed them on micro chips,
Liver and ingan,

The pair o them thocht
That their diet was mingin.

Syne the parrot gaed doitit
The cat drapped doon deid,
An the cat's noo a hat
On the auld wifie's heid."

                 Lydia Robb

Humpty Dumpty sat on a waw.  
Of course he should niver hae been there at aw!
If he'd heeded his mither, cam doon when she wanted, 
He widna hae gotten his heid sair dunted.
                                            Margaret Tollick (p11)

And a little ditty of my own:

There wis a wee trooper fae Fife 
Who liked tae tell tales fu o life.
She started off sma,
Saying nuthin much at a’,
Made a difference from being a hoosewife. 

Friday, 21 December 2012

sorting out the bad boys

My mother used to tell this story about when I was a wee girl and learnt from my father how to sort out the bad boys in the neighbourhood.  She was very proud of this story and the fact that I could stand up for myself, as she was a gentle person who people sometimes tried to 'take a len of' (Scottish for imposing upon someone's good nature).  I always kept an eye out for my mother and brought her to live in Cupar, near me, a few years before her death in 1998.

The story was about when I was 5yrs old or even less as I don't remember it myself, although I do remember playing out in the street, in the scheme where we lived, in Letham, Perth, Scotland.  A council housing scheme where as bairns (children) we all played up and down the road, in the 1950's.  There wasn't much traffic then, most folk didn't have cars.  We had old prams for our dolls, used them also for racing each other.  This I remember.

I was the oldest of 3 girls, my next sister wasn't born until I was 9 so I was an only child in the 50's.  My mother said that I used to keep coming into the house greetin' (crying) because the Dobie brothers were picking on me.  Two 'bad' boys who lived across the road from us and often ganged up on me and others in the neighbourhood.  

The story goes that my father taught me how to box, to stand up and defend myself from the bullying brothers.  After that the mother of the bad boys would come to my mother's door to complain that I was picking on her boys.  And my father's teaching stood me in good stead throughout my childhood as I remember many times being challenged to fight and the opponents backing down when confronted. 

I've always had a sense of adventure and resilience, bouncing back from adversity, although I am a home bird and prefer sleeping in my own bed.  I do think you have to be true to yourself and know what your strengths are, equally being aware of what doesn't suit.  I really don't like bullying behaviour and the ganging up of 'bad boys'.  It's something I will always resist and stand up against.

Thursday, 20 December 2012

free speech? not in Scotland's mental health world

Yesterday I received an abusive Email from a VoX board member while other board members stood by and watched.  It's happened before.  This time the man, egged on by another man, spoke about my "ineptitude", said my involvement was "out and out hatred and open warfare", my arguments "unfair, unfounded and are injuring other service users", spoke about my "sad lonely utterances" and that I was doing "the devils work".

Finally he called me a bully and advised me to "SHUT UP! Go to bed".  

I refuted these allegations and forwarded the Email to people in government, to demonstrate what the outcome is for anyone with a critical voice in the mental health world here, in Scotland.  And what their funding is supporting.  Where the oppressed have become the oppressors and it's Animal Farm all over again.

I'm going to unpack this situation and try to make sense of it.  I think it's important, not least because there is a move afoot in Scotland to become independent, politically, and this is concerning for anyone in the mental health world or psychiatric system here.  If we're not free now to speak out then what will it be like in the future?  The threat to democracy and free speech, masquerading as independence.

I've seen a deterioration in the quality of psychiatric services over the last 15yrs, as resources have been transferred into the community.  At the same time the support on discharge is practically non existent, apart from clinical meetings to determine psychiatric drugging levels and control mechanisms.  Therapeutic input is minimal and I'm told it's because the services are focused on GP practises and community treatment.

Therefore the people in mental distress requiring intensive support or respite are at the top of the pyramid where there is less choice and more compulsion.  Take the drugs or else.  Conform or be detained.  In fact just like the way I am being treated by the VoX brethren.  An arm of the government. And it's just not good enough.  For we need critical voices to bring balance and reason to the table.  So that human rights abuses can be voiced and injustices heard.  Otherwise we will be in a totalitarian state of being.

So I say to the VoX brethren, it's time for you to listen to and respect the critical voices among you.  Don't be an arm of the government.  It's not worth it and you can do better than this.  Make room for those of us who are not afraid to speak out and challenge the abuses in the psychiatric system.  Give us our place at the table.  Support us in our fight against the use of force in mental health treatment.  He Ain't Heavy, He's My Brother.

Wednesday, 19 December 2012

from VoX to FoG, a focus group for gathering user views

I have come to the conclusion that in the Scottish mental health world there is some confusion regarding the meaning of 'user led'.  Which should mean led by service users, obviously, as in they make the decisions, they lead the agenda, they speak out on behalf of the membership.  Who have a voice and can raise issues from their localities, where they live and use mental health/psychiatric services.

Otherwise it's not user-led.  And an example of this is VoX which claims to be "a National Mental Health Service User Led organisation" but isn't interested in the local situation, according to one of their founding management group.  Who lives in the same Scottish area as the board Chair, a paid worker with government organisation Healthcare Improvement Scotland.  Keeping it in the family sort of a thing.

The irony is that VOX only allows full membership from 'user-led groups'.  And yet they are government led, or at the very least a focus group for gathering user views for the government.  Which is fine, as long as they are not trying to mislead the membership by saying that VoX is user-led.  It clearly isn't.  For critical user voices are unwelcome and membership seems to be of the 'pick and mix' variety.  The board picks who can join the mix.

Hierarchical shenanigans and a bit of an embarrassment, speaking as an activist and campaigner in mental health matters.  And as a community development worker of over 30yrs, I do know what being 'user-led' means.  It's a grassroots movement, from the bottom up, where people with things/issues in common get together to improve the situation for everyone.  It's definitely not a top-down affair, working hand-in-glove with government. 

Therefore I suggest that VoX change their name to FoG - Focus Group, or even, if you like, Government FoG.  (we've got one like this in Fife, led by social workers)  A focus group for gathering views of mental health service users, by government, to improve services.  Picking and choosing who should go to events, who should represent the user voice on committees and groups.  It's what they are doing anyway so it makes sense to have the name change.

Monday, 17 December 2012

getting away with it

As an activist and campaigner I really do get annoyed when, despite mounting evidence and the voices of people raising complaints, statutory agencies and their workers keep getting away with it.  Practice and behaviour continues on in the same old way.  Staff centred services with patients and their carers at the bottom of the pile.  Human rights issues in psychiatric treatment.  Compulsion resulting in force. 

Despite the safeguards, which aren't as safe as they should be, and mental health act principles, which aren't always (or even often?) put into practice.  And a surplus of meetings that we can attend.  With managers, organisations, government, groups.  Resulting in nothing much, except talk and no action.  Or so it seems.

confidentiality cartoon
Of course there may be some action and we aren't getting to know about it.  For it's confidential and only for those in the know, the so-called professionals, on some/lots of money and with apparently many responsibilities.  Public servants, sometimes civil, sometimes not.  It depends, on who's listening.

However some of us are in this for the long haul.  We're going to keep on keeping on, until there is accountability and person centred psychiatric care.  Until psychiatric staff put the principles into practice.  Until the mental health act safeguards are safe.  Even better if and when force is unacceptable in psychiatric treatment.  And when there is no more getting away with it.

Saturday, 15 December 2012

critical voices, survivors, speaking out and taking back the power

In Scotland it seems that there is no place for critical voices in mental health, in terms of speaking out and taking back the power.  Not sure why this is.  For in other areas, like community development and socialism, there is room for this and in fact it is expected, in a free and democratic society.  It's what I've always done as a community worker in setting up grassroots projects that bring about empowerment and learning opportunities.  

So for me the mental health activism and engagement is no different from any other area of life.  Except of course that I'm a survivor, of mental ill health and the psychiatric system.  To do this I had to resist the labelling, drugging and lifelong mental illness prognosis.  Which wasn't difficult because I never did believe in any of it, since being a youngster.  I thought it a sham then and my opinion hasn't changed.  I couldn't be true to myself by saying anything different.

Other countries in the UK and Ireland have critical voices in mental health so I'm wondering why it's so frowned upon or not accepted here in my home country?  It's concerning.  That's not to say there aren't critical voices here but I think they keep under the radar, for fear of reprisal or that it may affect their livelihood.  I know what that's like, the backstabbing, badmouthing and attempts to exclude.  It's been interesting, that's for sure.  But I won't be letting it divert me.

I have to speak out because it's what I've always done, and I'm too old to change my ways now.  And I find myself up to my neck in mental health matters with over 40yrs experience of psychiatric system engagement.  Experience that comes in useful, in terms of taking back the power, personally.  It can also help others, as in peer support and demonstrating what is possible when a person has a voice.  By example.

A colleague the other day at a meeting spoke about 'emotional intelligence'.  It's not a phrase I was familiar with so I googled it and came up with this list of attributes, described by Daniel Goleman in 'What makes a leader' (Harvard Business Review, January 2004):
  • self awareness
  • self-regulation
  • motivation
  • empathy
  • social skills
Just the sort of skills and characteristics I think that all of us need who are engaged in critical dialogue with government and the mental health world, speaking out about human rights issues and injustice, with the aim of shifting the balance of power in the psychiatric system.

Thursday, 13 December 2012

reciprocity in principle and Millan report user voices from 2001

The 4th principle in the Scottish Mental Health Act - "Reciprocity - Where society imposes an obligation on an individual to comply with a programme of treatment of care, it should impose a parallel obligation on the health and social care authorities to provide safe and appropriate services, including ongoing care following discharge from compulsion.".

Yet another principle that was non-existent in recent experiences of Fife psychiatric inpatient treatment. Where parallel obligations obviously carry no weight, unlike the compulsion which is all-consuming.  A mental health act on paper but not in practice.  So much for NHS Fife 'experts' in the theory of the Act which doesn't play out in the wards.  Any dissenting voices are silenced by intimidation or drugs.

A colleague had reminded me today of this principle, one of ten borne out of the Millan report.  In the  summary of the user consultation on Millan report, from 2001, it is like time has stood still.  The concerns about force used, like "legalised torture".  No change there then.  "better access to non-drug treatments"  That hasn't happened.  "independent assessor to monitor the quality of advocacy services"  Nothing happening there either.  "separate advocacy for carers"  Not as far as I'm aware.

And to top it all the final sentence says "it has also paved the way for more meaningful involvement of service users and carers in the future.".  Not in my experience, which continues to be a tokenistic exercise, ticking a box to say that we were consulted.  Critical voices aren't welcome at the table and this is demonstrated in a variety of ways.  Being left out of the notes, being excluded from meetings, being patronised and various attempts made to separate out from the crowd.

I've seen it happen to others in the short time that I've been 'involved'.  Funny thing is, for me the resistance strengthens my resolve, to be included and heard, and to be part of the mix, in my own way.  I really don't like to see people picked off or picked on.  For these are usually the voices of reason and should be listened to.  Otherwise another decade will pass without any change or principles being put into practice.

past the sell-by date, time to climb down

I've been reflecting on these folk who head up organisations and have done so for a while, and it's time for them to move on but they won't.  You know the sort of thing.  They're enjoying the power too much, the conflicts of interest can't be ignored, there are those more capable in the wings waiting.  But they are determined to hold on to their position and influence.

And there are others who would also lose out if they stood down.  Co-conspirators or favoured ones.  Who prefer the current regime to any proposed future configuration where they might not be so well placed.  Especially if the hierarchy was demolished and a real democratic process established.  Where every voice could be heard and weighted equally.

It's a kind of arrogance where the person in power thinks that no-one else could do the job as well as they could.  No-one else has the contacts they have, and the years of experience.  When in fact a fresh pair of eyes and a flexible attitude could be the catalyst for real positive change in the organisation.  Giving birth to new ideas and opportunities to challenge the status quo.  

I think that in mental health user led organisations there has to be continual leadership change so that human rights issues in psychiatric care can be raised and challenged.  So that user led groups don't become government lackeys.  So that members are listened to and are involved.  Not just a token participation and tick box exercise.  But a force for good, so that fairness and justice prevail.

Wednesday, 12 December 2012

Shifting the Balance of Power in the Psychiatric System

[on Mad in America 12 December 2012]

2013 is going to be a year of protest, for me, demonstrating against the psychiatric system.  In particular, speaking out about the psychiatric drugging of women and children, forced treatment, ECT/electroshock and brain surgery for mental illness.  'Bringing in the heavies at the perinatal psychiatry conference' is a recent blog post about participating in the Speak Out Against Psychiatry demo in London, speaking out against the psychiatric drugging and shocking of women and children.  Joining with fellow women in solidarity and being encouraged in the process.  Society at large does need to become more aware of what's happening in the mental health world.  It affects all of us.

I've had a go at joining local and national groups from the user/survivor/carer perspective but no matter how hard I try it seems like I am only a token participant, ticking a box and there to make up the numbers.  For it isn't about being equal, the playing field isn't level, rather it's an ongoing battle to be heard and to be respected.  It would be different if I agreed with the regime and fell into line.  Which of course is what psychiatry prefers us to do.  Especially if we have been through the system and out the other side, under our own steam (or power).

However I had to taste it and see, testing the waters of user involvement and participation, to see if there was room for manoeuvre, opportunities to influence and shift perceptions.  Instead it has seemed that the more I try to be myself, the more I am silenced.  And matters came to a head in a recent meeting where notes were taken, ironically by a psychiatric nurse practitioner, and my voice was completely ignored.  As if the words I spoke at the meeting weren't heard because I wasn't a 'professional'.  Overlooked and undervalued.

So for me, looking back on 2012, it has been an interesting year.  Engaging again, face to face, with the psychiatric system and its power, as a survivor, carer, advocate and peer supporter.  At the same time engaging cerebrally with psychiatric workers at meetings and events. Challenging the lack of independent advocacy, the use of restraint and seclusion, the label of severe and enduring mental illness, and the issues around mental health acts and protecting rights.  When safeguards aren't safe and carers aren't respected.

I am more convinced than ever of the need for alternative ways of working with people in psychosis or mental distress.  Something other than psychiatric drugs and forced treatment.  Where clinical psychology can come off the fence and join with psychodynamic approaches.  Where peer support has power and isn't a political tool.  Where advocacy is independent and free to stand with the person.  And recovery means what it says, is free from government control and is a passport to a better life.

However, a word of caution, regarding the challenge to the epidemic of psychiatric drug prescribing and gatekeeping of general practitioners.  We don't want ECT and brain surgery to be on the increase as less drugs are prescribed.  The neuroscientists waiting in the wings to practise their experimental surgery, or Neurosurgery for Mental Disorder (NMD), not lobotomies but anterior cingulotomies, anterior capsulotomies and subcaudate tractotomies (see Mind website on NMD).  In Scotland it is called the Advanced Interventions Service, based at Ninewells Hospital, Dundee, and claims to be one of over 70 national services in Scotland like, for example, breast screening or liver transplantation.

Don't let us underestimate the various strategies required to bring about a shift in the balance of power, psychiatric system wise.  For some of us it will mean working from within, others a rearguard action, and maybe even doing both at the same time.  A few of us are meeting the challenges face on in a variety of ways, seizing opportunities as they arise.  The snakes and ladders of activism and engagement, or the games people play.  When the doing of it can be as rewarding as the outcome or end result.  But we are in it to see change and this is why we are speaking out about it, in words and in actions.

Tuesday, 11 December 2012

from mental illness to the biomedical model and irreversible brain surgery

I am very concerned about the NMD - neurosurgery for mental disorder - going on at Ninewells Hospital, Dundee, at the Advanced Interventions Service.  Or brain surgery for mental illness, where a patient is put under a general anaesthetic, a hole drilled into their brain, a probe inserted and an electric current destroys brain tissue.  Regardless of whether it's a small hole and a very small area of brain tissue, why is this happening to vulnerable people?  Experimental brain surgery taking us back to the lobotomies of old.

All the techniques for NMD are carried out on the frontal lobes of the brain.  Mind says "This area contains the limbic system, which is concerned with your emotional responses such as rage, fear and joy, and ‘unconscious’ physical responses, such as changes in heart rate and blood pressure.".  The surgery takes about an hour and a half, because of scans monitoring the probe.  Mind also says "There is no international agreement on the best target site for the probe, and different techniques are used at different treatment centres.".

I had to go to the Mind website to get the full facts about NMD as I couldn't find it all on the Dundee AIS website.  Which looked more technical and medical, therefore not as accessible for the ordinary person on the street.  When you look at their 'Home' page it seems that they are just one of over 70 national services in Scotland, no different from say breast screening or cochlear implants or bone marrow transplants.

But this is misleading and the fact is that mental disorder or mental illness hasn't been scientifically proved.  There is no absolute proof that mental illness is biological or can be identified with brain scans.  This is pure conjecture and speculation.  Many people have not accepted the biomedical model of mental illness and have completely recovered from mental ill health, psychiatric labelling, hospitalisation and psychiatric drugging.  I can testify to this, and know many others who have done the same.

I am convinced of the need to move away from the biomedical model of mental illness, even more so now when I hear of people resorting to brain surgery and doctors thinking they are helping.  As if taking away feelings and brain tissue will somehow make life less painful.  The psychiatric drugs aren't working although they may/do give relief to some/many but for heaven's sake leave off the brain surgery.   It's irreversible and experimental.  We don't want to be going backwards in time, to lobotomies and 'one flew over the cuckoo's nest'.

Thursday, 6 December 2012

without capacity? in whose opinion

I have a major concern about the phrase 'without capacity', in terms of reasons/excuses given for enforcing treatment on the non-compliant or nonconformist patient.  I say this, having been a nonconformist person for over 60 years.  As someone who knows my own mind and likes to be listened to.  Which I think can or should be said about every human being.  Whether labelled or not by a psychiatrist.

I really didn't like being forced to take psychiatric drugs then forced to stay on them.  The drugs took away my decision making abilities, made me flat in mood and lacking in motivation.  Life wasn't enjoyable and seemed to be different shades of grey.  I prefer the vivid colours or autumn shades, depending on the time of year or day.  But grey just doesn't do it for me.

Recently I was supporting someone who was a patient in a locked ward.  They were resisting the regime, refusing the psychiatric drugs and labels.  And I was standing with them, in their resistance.  At a meeting with the consultant (forensic) psychiatrist he tried to tell me that the patient I was supporting was without capacity.  Also that people without capacity didn't require independent advocacy.  Wrong on both counts. The person had me to advocate, has now recovered, got off all the psychiatric drugs within 6 months, and got back on with their lives.

Therefore I am very concerned to hear that half of the women over 60 in Scotland getting ECT or shock treatment, are deemed to be 'without capacity' and get it involuntarily or against their will.  What is this all about?  The SEAN (Scottish ECT Accreditation Network) 2012 report states, in Summary and Key Findings page viii, that 71% women, 29% men get ECT, and of these 34% get it involuntarily or because they are 'without capacity'.  What's going on?

I want to know why women are being targeted for electroconvulsive therapy or electroshock as it's described elsewhere.  Shocks to the brain, anaesthetic and repeated treatments of it, sometimes over many years, I suspect.  I think it's a scandal, that women, and many of them old women, are having this done to them.  My mother had many courses of ECT in the 50's and 60's, against her will, in Murray Royal Hospital.  And so she took a depixol injection in the hip for the rest of her life, under compulsion.  It's just not good enough, for mothers and grandmothers.

Tuesday, 4 December 2012

making membership easy

A fast sequel to the Hamlet blog post.  

I really do think that national user led groups should make it easy for folk to become members.  Otherwise they are doing themselves and the user movement in mental health a big disfavour.  If you make it difficult then it becomes an exclusive club where only certain members are welcome.  This is not what it's supposed to be about.  

The members don't all have to agree, in fact it's much more healthy if there is disagreement or debate, in my opinion.  Then a true consensus can be arrived at.  Or at least a majority view.  After a bit of discussion and an airing of facts, opinions and experiences.

So let's make it easy to join up, for people to come back in again, an open door policy, and then we can become a strong user/survivor movementBringing about real change and improvements to psychiatric/mental health services.  It's definitely needed and not before time.

Monday, 3 December 2012

all talk and no action

Just had another meeting with NHS Fife clinical management folk, two of them, male, at Stratheden Hospital.  Topic of mental health quality improvement.  I've got to say it, can't help it, but a right waste of time for me.  A political exercise as in ticking a box.

We weren't on the same wavelength, they didn't really listen to what I was saying, lots of game playing and prevaricating.  Should have known.  And when I got into the meeting, the first thing the guy in charge says to me is "we've only got 45mins".  A real wind up and control manoeuvre.

I think that they will get nowhere with psychiatric service improvements until they really listen to users, survivors and carers, and set aside real time to do so.  Changing the name of it doesn't change the practice, in my experience.  That will require a complete change of attitude by NHS staff who should be public servants but who appear to only serve themselves.

Meanwhile it's us who are having to pick up the pieces after traumatic treatment.

Navigating the System, the Power of a Story

[Published on Mad in America 3 December 2012]

Throughout my childhood and youth in Perth, Scotland, I remember my mother having nervous breakdowns and stays in the local mental hospital, from mid 1950's to late 1960's.  These episodes didn’t affect the happy memories of my upbringing as grandparents were there to support and protect.  My father,
William Patterson, was a science fiction (Jeff Hawke) 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, I had a puerperal, now called postpartum, psychosis, voluntarily going into the local mental hospital in Lanarkshire.  Which meant not being able to breastfeed or to experience the full joys of motherhood and a new baby, who was back home.  Childbirth back then, in my experience, was all about chemical induction, bringing my baby into the world on the day shift, when more nurses were on duty.  Staff centred care, just like in the psychiatric system.  Separated from my baby it was a very challenging 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.  For I needed to get back to my family.

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, against her will, 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 my three sons.  Church friends and family 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 personally known this to happen.

Pomarium flats Perth 2014 (my home 1960's)
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.  I don’t see it as genetic or biological but that 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 of Perth, 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, one of my own making.  My sons were concerned and I went voluntarily into the local Fife psychiatric acute ward.

It was a mixed gender 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 on impulse, 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 altogether, 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 1978 and 1984, I think because of the cocktail of psychiatric drugs now used and because of my past record of mental ill health, and what was written in the notes.  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.