Saturday, 22 September 2012

22 September 2012 - Power and Force: Bedfellows in Psychiatry

It seems like I've always been aware of the power/force dynamic in the psychiatric system which is euphemistically called care and treatment.  Since the 1950's and 60's, memories of my mother having a nervous breakdown and not wanting to go in the local mental hospital/asylum  The family not wanting to put her in.  But no other option.  I assumed that everyone else was aware of it too.  Because it was obvious.  To the psychiatric patients and the psychiatric staff.  Their family members, the nearby community and society at large.  Stories of shock treatment, brain surgery and straitjackets, chemical or otherwise.  One Flew Over the Cuckoo's Nest and 'They're Coming to Take Me Away, Ha-Haaa!'

I didn't think it was a secret because many folk who had been in the asylum or hospital didn't usually want to go back in again.  And some folk who went in didn't come out again.  Maybe for years and maybe for a lifetime.  Things are different now in that people come out, may go back in for a while then come out again.  Although some may become the Left Behind.  But through it all the power and force continuum continues.  At least in the mind of the people playing the game.  And those of us who have no option but to enter the system.  And are conscripted as players.

The perceived power in the psychiatry system means that the threat of force is sometimes all that's required to ensure compliance and conformity.  Taking the medicine and agreeing with the diagnoses.  Keeping your opinions to yourself until free to disagree.  Hoping that you don't relapse or go mad again and the label becomes permanent.  Sticking like glue and popping up at random medical appointments, to cause irritation and annoyance.  A mental health manager told me recently that the label can't actually be removed.  It's apparently written with a permanent marker, like a tattoo but not self inflicted.  Even it was incorrect or temporary or an opinion or a point of view.

In general medical circles a diagnoses would be useful in future dialogue or interaction.  As a signpost or indicator of physical health issues and resulting treatment.  However in the psychiatric world a diagnosis or label can stigmatise and discriminate.  In my experience.  Spilling over into family medical histories so as to justify a course of treatment or behaviour, by professionals.  Upon a family member in mental distress.  Without having to consult with the person or their family.  Mental illness the mantra and reason for paternalistic control.  For taking charge and taking away the power from the patient.  Compulsory treatment.  Using force if necessary.

As a woman who's been forcibly treated in psychiatric wards I won't ever feel OK about it.  Sometimes it was men who held me down and forcibly examined and injected me.  This can never be OK.  In other settings it would be assault and rape.  An invasion of the body.  Nurses being trained in restraint procedures doesn't make it any better.  There has to be another way of working with women and men in distress.  That doesn't involve a re-traumatising and dehumanising experience.  And nurses who objectify as a way of coping and remaining sane.  In an insane environment.

As a woman who's been a psychiatric inpatient on 3 occasions (1978, 1984, 2002) my stays got progressively shorter.  Because I conformed and swallowed the drugs and got back out as quickly as possible.  Mixed sex wards are very risky places for women.  Especially the 2002 experience where the sleeping accommodation for women was overlooked by men in single rooms who were across the corridor.  Men who possibly had criminal records, drug and alcohol problems, offending behaviour, attitudinal issues.  And I was being forcibly medicated into an obedient state.  How scary is that?  Would you like it?

On discharge from psychiatric hospital the issues with power and force continue.  Especially for anyone on a CTO - compulsory treatment order - who isn't keen on taking the psychiatric drugs and the resulting incapacity in decision making and other thought processes.  It requires, I think, very good independent advocacy and peer support, to have your voice heard and your wishes carried out.  Even better if the advocate has lived experience of mental ill health and psychiatric treatment, and can get alongside and give peer support.  This is what I did recently for my son.  It helps the person to take back the power and to resist the compulsion.  To taper the psychiatric drugs and/or to negotiate an appropriate plan of action.

It's not easy.  Taking back the power and resisting the force.  It makes me think of teeth gritting determination and stubborn persistence.  You won't be popular with the psychiatric fraternity or the social work collaborators (I'm not talking about all social workers, there will no doubt be exceptions).  Who are co-conspirators in the quest to minimise risk and protect us from ourselves.  Which seems to be the complete opposite of the community development approach, the world in which I've spent most of my adult life.  Empowering and educating communities to be independent decision makers.  As a non-conformist it suited me down to the ground.

And as a mother and grandmother I just can't accept the continuation of the power/force continuum in psychiatric and mental health services.  There's got to be a shift.  Of the balance of power and the use of force.  On people who are in mental distress because of life's problems.  Which could happen to any of us at any time.  Being no respecter of persons.  So time to rethink the system and remake the bed.

Monday, 10 September 2012

10 September 2012 - Perceived Power in the Psychiatric System and Democratising Action

Since becoming an activist and campaigner in mental health matters and more specifically in the movement to transform the psychiatric system, I have had cause to consider the place of power.  In relationships, organisations, hierarchies and institutions.  And particularly in response to recent engagement on the front line of fire where compulsion and force synonymously exist.  To control and subdue.  The non-compliant offenders whose only crime is to want to be heard and to be treated with respect.  Not too much to ask for except within the locked wards where therapeutic can mean drugs and safety can mean drugs.  And where resistance can be futile.

[I am putting a qualifying paragraph in at this point because I have been informed by a person in a position of power in mental health in Scotland that some people think that when I write a blog post I speak on behalf of Scotland or Glasgow or somewhere else.  The fact is that I speak from my own experience and it's my opinion.  Which I am entitled to.  I live in Fife so recent experiences are from there.  However I have heard from people in other areas of Scotland who have had similar experiences to mine.  But I won't be naming them because they don't want to be identified.  They have said this to me and I respect their wishes.]

I've never seen power as absolute and think it can swiftly change, later if not sooner.  And have seen this happen.  In other settings.  Therefore I'm not going to be bullied or intimidated by people in positions of power in the mental health world.  Because I know that the situation can quickly be reversed.  Despite the best efforts of them or me.  The difference being that people in perceived powerful positions because of job titles or career paths or 'lived experience' are caged in by the constraints of their employer, duties and responsibilities. As in he who pays the piper calls the tune.  And public servants in statutory agencies are, or should be, accountable to folk like me and you.

It will be different for people under a dictatorship or flawed democracies, hybrid or authoritarian regimes, as described in the Democracy Index.  I'm speaking as a citizen of a democratic country.  Where there should be an equal say and freedom of speech.  And that means for everyone whether diagnosed with a 'mental illness' or not.  Whatever our status in life or background or upbringing or anything.  Because of this I have confidence in challenging the powers that be, in relation to human rights issues in the psychiatric system and legal or strategic documents that don't do what they say on the tin.

I believe that the voices of lived experience deserve to be listened to and respected.  Even when governments don't like what we're saying.  In fact if there is opposition to what we are saying then I think this is a good sign.  It means we are doing something right.  But I'm not prepared to accept bullying or intimidation or being told what I have to say or do.  This is going too far.  There's enough of that in the psychiatric system.  I don't expect it to continue into the mental health world where recovery has become the mantra.  Some would say hijacked.  I didn't recover just to be put in a straitjacket by people in power whose positions are temporal.

Of course the root of the problem is the continued use of force and compulsory treatment towards and against people in mental distress.  The elephant in the recovery room.  Behaviour that isn't tempered by mental health acts or mental health strategies.  When safeguards aren't safe and the finest words in the world make no difference to the person who is locked up and locked in.  Dehumanised and denied basic human rights because they are mentally ill.  Described as non-compliant and without capacity.  Their carers disrespected and labelled as difficult and demanding.  For it's written in the notes and must be true.

I want to see and expect to see democracy in the psychiatric system and mental health world.  Equal voices and freedom of speech.  Therefore I will continue to behave as if it is happening.  Until it happens.

Friday, 24 August 2012

24 August 2012 - Collusion and Control - The Reality of Mental Illness

The unholy trinity of restraint, seclusion and forced treatment in the psychiatric system can lead to collusion by agencies who should be protecting the rights of vulnerable people.  In an attempt to keep control, on the slippery slope of patriarchal power.  Where patients are treated like children and real family are sidelined, surplus to requirements.

Investigations into adult protection can be like shutting the gate after the horse has bolted.  Too late too little.  Diversionary tactics of blaming others.  Non system others.  Keeping up the appearances.  That force is justified if a person is mentally ill.  Does that mean they deserve it?

Families left to pick up the pieces.  Put their reputations back together again.  Shake off the disappointment but retain a modicum of distrust.  Learning from the experience that not everything does what it says on the tin.  Older and wiser and stronger.  Ready for the next round.

Where I live in Scotland the statutory agencies say that they are the guardians of welfare.  "Fife Council Social Work, NHS Fife and Fife Constabulary are working in partnership to keep people safe from harm."  According to the adult protection information on the Fife Council website.  I'm wondering how this translates into the psychiatric setting where restraint, seclusion and forced treatment are ways of working with vulnerable people?

Where locked wards and seclusion rooms within locked wards mean that vulnerable people/patients are out of sight and out of mind.  Where carers, family members and named persons are not allowed to go, except by permission and even then it could be by the back door.

What constitutes safety in the psychiatric ward?  Does it mean taking the pills and doing what you're told?  Being compliant and not questioning the decisions of professionals.  Accepting that they know best even if they don't know you.

Or should it mean person centred care, getting to know the patient and carer and family members?  Mutual partnerships and shared decision making.  Like it says in the new mental health strategy for Scotland.  But isn't happening where I live.

There are a number of safeguards in the Mental Health Act Scotland 2003, for people with a 'mental disorder' and under the Act, to "make sure your rights are protected".  The main ones are the Mental Health Tribunal, named person, advocacy, advance statement, Mental Welfare Commission.  In theory these pillars, along with the Principles of the Act, should ensure fair and just treatment for people in mental distress and under detention.  In practice it depends on the safeguards having the power and place they are meant to have, in my opinion.  (taken from recent blog post 'Mental Health Acts - Protecting Rights or Not?')

I have been concerned for some time about the gulf between the theory and practice, of safeguards keeping people safe, in the experiences of patients, carers and family members engaging with the psychiatric system.  Locked wards and the use of restraint, seclusion and compulsory/forced treatment are high risk places and procedures. Where basic human rights are in danger of being overlooked or ignored.  The right to adequate food, housing, water and sanitation; the right to freedom of expression.

As a 'named person' and carer I had limited rights of access to the psychiatric locked ward.  Advocacy was difficult to obtain and, in our opinion, not a voice for the locked-up patient.  The advance statement required more content to be taken seriously.  Another 'bulletproof' one has been written (we may be deluding ourselves).  The Mental Health Tribunal seemed to be on the side of the system and not the patient, having little impact on patient safety, staffed by ex-professionals.  As for the Mental Welfare Commission I want to believe it's a watchdog (with teeth) and a guide dog, helping shape policy, develop services and safeguard rights.  See MWC 'Influencing & Challenging'.

But in light of a report received this week, written by statutory agencies months ago, that attacks my character, motives and reputation, accusing me of "psychological harm", for daring to stand with the person I care for, I am left reeling from the shock.  A psychiatric system and its cohorts colluding to lay the blame at my door.  And I wasn't even there.

When the restraint, seclusion and forced treatment happened.  Resulting in injury and trauma.  The lock-ins for hours at a time in a seclusion room without toilet or water.  No recorded observations until they were caught out.  Freedom of expression denied.  Policies and procedures non-existent or made up as they go along "according to the patient population".  The forensic psychiatrist saying that people without capacity don't require advocacy.

This is the reality for people with mental illness in the psychiatric system when they dare to resist the treatment or challenge the status quo or criticise the practice.  I might have recovered, be a survivor, off all the psychiatric drugs, participate in national mental health groups, run events with international speakers, write blogs and websites that are read by many people.

But I am still the ex-mental patient (wrongly) diagnosed in 2002 with schizoaffective disorder or schizophrenia, depending on who's the scribe.  It's in the medical notes to this day so it must be true.  And no doubt helps to reinforce the stigma and discrimination when agencies are looking for somewhere to lay the blame, for system failure.

Sunday, 5 August 2012

5 August 2012 - Mental Health Acts - Protecting Rights Or Not?

I want to believe that the Mental Health (Care and Treatment) (Scotland) Act 2003 is there to protect the rights of people with mental ill health (mental disorder).  Who may find themselves taken into a psychiatric hospital against their will, given compulsory treatment and their freedom restricted.  The difficulty for me is that my own experience of involuntary psychiatric detention and forced treatment made me feel vulnerable, frightened and at risk.  And I know of others who have experienced the same, in the years since the new Act came into being.  There still seems to be a gulf between what should be happening and what is happening.

The Scottish MH Act has safeguards in place, to protect the rights of mental health service users, the main ones being the Mental Health Tribunal, named person, advocacy, advance statement, Mental Welfare Commission.   In theory these pillars, along with the Principles of the Act, should ensure fair and just treatment for people in mental distress and under detention.  In practice it depends on the safeguards having the power and place they are meant to have, in my opinion.  Independent advocacy that is free from conflict of interest and supports freedom of speech, which may mean challenging statutory agencies.  Advance statements that are recognised, and promoted, by psychiatric professionals.  Named persons given their place, informed and included.

I provided advocacy for a male patient in a forensic ward 10 years ago.  He had been transferred to the ward from prison and had narrowly missed being transferred to the State Hospital.  The advocacy he wanted was help in writing letters to hospital professionals about his treatment, so that he had a voice despite being locked in.  I believe the advocacy support helped him to be listened to, to be fairly treated and to eventually be discharged out into the community as an active citizen (he became a volunteer at the project I worked for).

Recent experience of trying to access advocacy for a relative in a locked ward was not so positive.  There was no continuity of advocacy relationship, difficulties in accessing an advocate when needed, and a reluctance on the part of the advocacy project to challenge statutory provision.  As a named person I was not kept informed or always included, by professionals.  The advance statement had some power but was no defence against forced treatment, the result being that a more bulletproof statement has since been created.  Time will tell if this has power.  Again I want to believe that it is possible to be empowered even when locked up and receiving compulsory treatment.   I use the word compulsory rather than forced.  Ever the optimist.

Some of us by nature or circumstance are non-conformist, non-compliant and questioning of the status quo.  I have found this to be a useful stance in normal society as it makes sense to have an inquiring and critical mind.  But in the psychiatric system this independence of mind and non-compliance can be perceived as a lack of insight (anosognosia), proof of mental illness and a reason for compulsory treatment.  In my experience.  Professionals who didn't know me when in good mental health made decisions about me when in mental distress.  Which resulted in detention, compulsion and paternalistic prognoses.  Making the road to recovery a longer and more challenging one, than it might have been if I'd been listened to.

There is a list of approaches and alternatives, much of them from American sources, in the Scottish Government's Review of Literature Relating to Mental Health Legislation, Ch 10, Least Restrictive Alternative, one of the underlying principles of the new Act  "... because of its relationship with two new provisions to the new Act that have generated considerable interest, namely, compulsory treatment in the community and advance statements.".   Food for thought.  Discussions about chemical and/or physical restraint, which is the least invasive, that willingness to take medication doesn't mean the patient isn't feeling coerced.  In the summary it states "There has been a tendency to assume that LRA means treatment out-with an institutional setting, but a different approach would suggest that it means treatment in accord with a patient's wishes.".  That's more like it.  Person-centred treatment for mental distress.  Preferably with alternatives that didn't involve compulsion or force.

There are proposed changes to the 2003 Mental Health Act Scotland, following the McManus Review Report and the government's response to the review.  Relating to advance statements, advocacy, named persons, medical matters and tribunals.  From reading the report and responses I can see attempts to increase the uptake of advance statements and the availability of advocacy.  Also for more clarity on the named person role.  I would like to see more power given to the patient/service user, requiring a releasing of power from the psychiatric professional/establishment.  Ron Coleman, in Recovery: An Alien Concept? says "“... it is not the professionals’ role to give power to clients.  Their role should be to renounce their power and influence over service users, and by doing so create the conditions in which service users can reclaim power for themselves." (p66).

In conclusion, mental health acts are laws under which people with mental disorders can be admitted, detained and treated against their will in hospital.  The first principle in the MH Act Scotland 2003 is "Non-discrimination – People with mental disorder should, wherever possible, retain the same rights and entitlements as those with other health needs.".  Therefore there is an expectation that people under compulsory treatment should have their rights respected.  This respect also stretches to carers under the Scottish Act.  The problems and tensions arise, in my opinion, when the expectations of the patients and their carers, regarding treatment, are not the same as the psychiatric professionals.  When the only choices are chemical or physical restraint, neuroleptics, forced treatment and seclusion.  Control rests with the system.  Human rights become secondary.  The mental health act safeguards seem powerless in the face of diagnoses, medication and detention (or labels, drugs and forced treatment).

Thursday, 2 August 2012

2 August 2012 - Notes And Other Fairy Tales In The Land Of Make Believe

Once upon a time there was a psychiatric establishment called 'The Land of Make Believe'.  Where some people wear uniforms (I'll call them the Uniform) and the others don't (I'll call them the Others).  The Uniform write notes (Notes) about the Others.  Sometimes at the time or sometimes after.  These Notes are very important to the Uniform.  They have undergone copious amounts of training on writing Notes, storing Notes, carrying Notes around.  And meet in a big room to have discussions about the Notes, the Others and The Land of Make Believe.

The Others are more interested in talking about themselves to others, both Uniform and Others.  However the Uniform seem to have little time available for talking, or listening or anything that isn't to do with the Notes.  Therefore the Others find themselves taking up smoking as an activity and sitting with Others in the smoking area.  Even the smoke resistant sit with the smokers, to have human contact.  Meanwhile the Uniform get on with their Notes.  Changing them if necessary.  To fit the story of the Uniform.

Labels are another important factor in the writing of Notes.  The Others can't just be distressed or anxious or worried.  They've got to be given a diagnosis or two that equates to a mental disorder.  Otherwise the Others shouldn't have come through the looking glass into the Land of Make Believe.  Where Notes are like the Jabberwocky to the uninitiated or non-Uniform.

"Beware the Jabberwock, my son!
The jaws that bite, the claws that catch!
Beware the Jubjub bird, and shun
The frumious Bandersnatch!

The Uniform write in the Notes when the Others are misbehaving (according to the Uniform) and this may result in a visit to the Land of Dame Slap, a school for bad pixies and fairies, at the top of The Faraway Tree.  Or forced treatment in Jabberwocky language.  Bad medicine or a necessary evil, according to whether you are the Others or the Uniform.  The Notes will justify the actions and the end will justify the means.  Which is another uniform, compliant, harmless, emotionless, humourless outpatient.

Of course this is only a fairy tale.  Isn't it?

Friday, 20 July 2012

20 July 2012 - Living In The Land That Time Forgot

I've often had the sense of living in the land that time forgot - "A series of adventures ... among various bands of near-human primitives".  Going to national events I hear about the advances in mental health, improvements in services and new build psychiatric wards.  Then I return to the lost world of the kingdom where I live.  A place where the user led mental health groups lost their voices and we our choices of independent mental health advocacy.  Where the main psychiatric hospital is slowly and inexorably becoming desolate and devoid of resource.  With no alternatives on the horizon.

This former asylum is punctuated by cigarette butts underfoot everywhere and are there to welcome you at the gate.  Smoking is encouraged and a way of passing the time.  Staff can be seen partaking, in stolen moments at hidden, and not so hidden, places.  It gets you through the days and nights of keeping patients quiet or locked away, in rooms without toilets or wards without joy.  You can tell the nurses by their uniforms, the patients by their demeanor, the visitors by their leaving.

If you're lucky the hospital shop will be open, where you can stock up on smokes, drinks and confectionery.  It's now run by a voluntary sector organisation and has a (bulletproof?) screen at the counter.  To protect the shop staff and volunteers from flying missiles, so I'm informed.  Visiting the shop allows time to engage with the left behind customers, the people that time forgot, for whom the institution is home and a very familiar place.  Nurses have told me these patients wouldn't manage in the community.  I wondered if it could be more about keeping themselves in a job.

A decision has been made for around 45 of these left behind patients to be discharged from hospital.  From a total bed number of 90.  (has someone told the nurses?)  I suspect it will mean more institutionalised living but at less cost.  These rehab patients will have been given the mantra of lifelong mental illness and lifelong psychiatric drugs with a bit of psychology on the side, for maintenance.  The recovery agenda has passed them by although they may have seen recovery posters on the ward walls.  Merging in.  Visible when lining up for pills.

In Scotland we have a new national mental health strategy imminent.  The consultation highlighted suicide prevention and crisis support as priorities.  In anticipation of the focus on people in mental distress I approached our local partnership coalition of statutory organisations around wellbeing, asking what funds would be available for this, and was told that there is around £1million to spend in 2012/3.  However it had all been allocated up until 2015.  After some further digging for information I found out there were funds for new initiatives.  And an FOI (Freedom of Information) request revealed even more detail.

Yesterday BBC News Scotland put out an article with a great strapline 'Banged up for being suicidal' and a TV programme Scotland's Silent Deaths.  Describing the many times that people who are suicidal end up being arrested and put in police cells overnight.  "The police do not want to arrest them. But sometimes they are left with no choice because there can be nowhere else for them to go."  SAMH (Scottish Association for Mental Health) Suicide Prevention National Programme Manager Kirsty Keay says that police cells can't be the best place for people "at the darkest point of their lives", and that there needs to be a different way of thinking about suicide.  A need to consider the large numbers of suicide attempts and those who slip through the net.

The Edinburgh Crisis Centre is a place where people can go if suicidal.  The only one of its kind in Scotland, the centre "is open 24 hours a day 365 days of the year and provides community based, emotional and practical support at times of crisis".  Carers can also access all the services.  Visitors have the opportunity of staying overnight and the centre has 4 rooms where people can stay for up to 7 nights at a time.

I want to see a crisis service like this where I live.  A service that people can access themselves if suicidal or in mental distress.  Staffed by people who know how to listen and have time to listen.  A place of respite and refuge.  Is this too much to ask for?