Sunday, 23 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.

Saturday, 22 September 2012

the snakes and ladders of activism and engagement

[a more light hearted post about games that people play]

I've always liked the game of snakes and ladders. Even nowadays when I sometimes play it with my grandchildren.  Who when they were younger didn't like the going down a snake bit and sometimes tried to avoid it.  You might call it cheating.  By going a few more squares than what the dice said.  To avoid the slippage.  

But as they got a wee bit older and wiser they got used to the snake bit and losing some of the time.  For I didn't always let them win just because they were small.  Although I did let them away with it some of the time until they could handle it.

I think the game of activism and engagement in mental health matters is something like a game of snakes and ladders.  When the dice is with you then it's all about climbing up the ladders as fast as you can.  You can't quite believe your luck and it seems like you're headed for the top.  Then before you know it the snake has appeared and you're slipping back down.  Much faster than you went up.

The thing is to enjoy the ride.  Going up or down.  And get used to it.  Just like my grandchildren did .  As I did at their age and still do.  Avoiding the snakes isn't always possible.  I think it's better not to cheat if you can manage.  It makes the ladder climbing all the more enjoyable.  And the snakes begin to lose their power.

Thursday, 20 September 2012

paying people what they're worth to be involved

I attend a number of mental health national groups and events as a survivor of mental ill health and the psychiatric system.  I also have input as a carer.  And do this voluntarily, as a way of helping, with others, to bring about improvements to mental health services and the psychiatric system in particular.

Living rurally I drive a car which is a necessity for me, both for access and health reasons.  With the increase in fuel costs and other inflationary considerations it is a continual challenge to be involved in mental health matters.  But I think it is important to have a voice and to be able to participate.  Therefore the travel expenses offered for attendance can make all the difference when on a small budget.  As it will to others like me.

Therefore I think that travel expenses for attendance at mental health meetings, groups and events should be the same for paid and unpaid workers.  And that's just for starters.  Even better if people with lived experience who participate in events were given appropriate remuneration.  Either an attendance amount or an hourly rate.  In recognition of their input being not just tokenistic or an add-on but an important part of the proceedings. 

I'll soon be 60 so it's not really about me.  It is however about paying a person what they are worth in terms of their participation, involvement and leadership.  I've been looking through the internet for a phrase that sums this up, hoping for something other than the 'if you pay peanuts you get monkeys' one.  

And came up with this cartoon.  (disclaimer - don't look if you're a CEO and easily offended).  It's not really on point but I just couldn't resist.

a comment about employment and being gainfully employed

Here's a comment I've just made on a blog post :

"Although I don’t like the term ‘mental illness’ or the fact that governments have hijacked ‘recovery’, I would be concerned about a move to force people off benefits and into paid work. This is happening where I live at present. Under the guise of benefits assessments and employment initiatives. 

For years and years psychiatry has been telling people that they have a lifelong mental illness that requires lifelong medication and that they won’t be able to do paid work. Now that we’re in a recession the economic pressures mean that the mantra is changing. The topsy turvy world of mental health.

Those of us who are able to do paid work shouldn’t be putting pressure on others who are not able to do paid work. People can be gainfully employed without being organisationally employed. Voluntary/charity work is beneficial. Helping in our communities, helping our neighbour. It might not mean getting a pay check but it can be making a difference to many lives.

Excuse the rant but I do get fed up with the idea that if we’re not earning money then we’re not doing anything useful with our lives. I have always worked voluntarily, I’m nearly 60 now. And now I mostly do voluntary work, many hours a week writing and campaigning, going to meetings, trying to bring about improvements to mental health/psychiatric services and hopefully even a transformation.

Let’s not go on about people on benefits/social security. Rather let us go on about the psychiatric system, about government and about injustice for the marginalised."

And then in an Email accompanying the comment:

"I really do hope that we're not going to join with governments in hounding people off benefits/social security and into 'work'.  Some of us are working tirelessly to change the system, without getting paid to do it.  I know of many others in Scotland who might be on 'benefits' but who are doing their bit for society and to improve mental health matters."

Rant over. 

Tuesday, 18 September 2012

the problem with complaints processes in psychiatric circumstances

I'm beginning to realise that complaints processes are not the best use of one's time, if they are to do with psychiatric or mental health services.  In my experience the voices of the professionals are believed while the testimonies of the mentally ill are disbelieved.  On the whole.  And their carers and family members marginalised.  Where truth is according to what's written in the medical notes.  Which can be doctored to suit the situation.  

I wouldn't recommend trying to get justice or fairness by making a complaint.  It can be like opening a can of worms.  Your reputation may be at stake.  Your intentions misrepresented.  The psychiatric system seems to be unassailable and not answerable for what it does to the people who enter within, as mentally ill or mentally disordered.  The problem is compounded when there is no independent advocacy or user led mental health groups to stand with the oppressed.  

The social work service should be a balance to what is going on in the psychiatric system.  Not aligning themselves with the system, against the service user, carer and family member.  This would be like adding insult to injury.  Adult protection investigations that favour the system are just not good enough in my opinion.  They're meant to be about protecting the rights of vulnerable people.  The system isn't vulnerable.  The people in the system are.

I'd started to write an Email this morning, to statutory agencies, cancelling all the complaints I've made.  Because I am so very fed up with having to read through reports of psychiatric circumstances that are like a work of fiction.  The write up of events where I was present and which are inaccurate and subjective.  I'm speaking as a reflective practitioner and as someone who has learnt how to write accurate notes.  Therefore I can spot the difference.

Well, I've deleted the Email and will keep on trying to get justice.  Even if it means I have to rewrite some/many of the notes myself.  Which is likely to happen.  I've always enjoyed a good piece of fiction and escapism.  But not in the real life situation of psychiatric institutions where, in my opinion, there has to be transparency and accountability.  Otherwise there will be miscarriages of justice and human rights abuses.

(I use italics for words that I don't particularly like or agree with but are in common use)

Wednesday, 12 September 2012

conflicts of interest, user survivor involvement and human rights in mental health

I am very clear that conflicts of interest in user survivor mental health involvement need to be kept to a minimum.  So that the voices of people in the psychiatric system are heard and their human rights protected.  Otherwise the blurring of boundaries and roles may result in an abuse of power and a failure to stand up for people who are at risk of legal coercion and traumatic treatment.

Let me unpack this a bit.  I am not saying that people in positions of power, whether civil servants or otherwise, are deliberately denying the rights of the mentally ill.  Or that the user involvement groups are conspiring or colluding with the powers that be.  But that the potential for human rights abuse in psychiatric care means that the voices of experience should be as independent as possible.  To be free to speak up and speak out, to challenge the decision makers and the psychiatric establishment.

Powerful voices of lived experience can bring balance to a psychiatric system that is still forcibly medicating or drugging its patients.  Grabbing and jagging I call it.  Having been grabbed and jagged myself.  It's not pleasant but it has to be said.  Calling it rapid tranquilisation doesn't make it feel any better if you're on the receiving end of the needle.  Take my word for it.  And I still don't feel OK about it.

Of course I'm looking forward to a time when force in psychiatry is not required.  When there are real alternatives to psychiatric drugs for mental distress and a choice of therapeutic input.  We're not there yet and it seems a long way off, when the only option is a neuroleptic in a crisis that can be more trouble than it's worth, in the long term.  And psychiatric labels that stick like glue and come back to haunt you in the notes that others wrote about you.

(I use italics for words that I don't particularly like or agree with but are in common use)

why is independent advocacy not in the new mental health strategy?

I've been wondering why there is no mention of independent advocacy in the new mental health strategy.  Having done a word search and finding nothing.  I'm reading through the Scottish Independent Advocacy Alliance response to the strategy which, along with over 340 responses, was submitted by the end of January.  It gives a comprehensive underpinning of the importance of independent advocacy for safeguarding people's rights.  Collectively and individually.  Under the mental health act and in helping people generally to manage their own mental health.

Is it that the new strategy takes advocacy for granted?  In that we've got it, it's sorted and doesn't need to be mentioned?  Recent experiences of engagement with the psychiatric system disabuses me of that notion.  When independent advocacy was difficult if not impossible to access.  When I had to advocate for the person I care for.  Because the alternative was either unavailable or not independent.  A dire state of affairs for anyone in a locked ward where basic human rights are in danger of being ignored or worse.

Independent advocacy is one of the safeguards in the mental health act.  It should be in place to protect the rights of people with a mental disorder and under the act.  This is particularly important when a person/patient is at risk of being forcibly treated.  When their advance statement could be disregarded and overruled.  In February of this year I met with an RMO (responsible medical officer) of a locked ward who told me that people without capacity do not require advocacy.  I remember being incredulous at his statement and corrected him without delay.

Meanwhile in the locked ward the person I care for was asking for an independent advocate to be present, and not being able to access one when required.  And there were initial attempts to discourage me from advocating for him.  I was told to go away and come back another day, and leave the care up to them.  By 5 nurses who surrounded me in the visiting dining room, while I sat at a table.  Four of them standing, a very intimidating experience.  I came back that evening and managed to advocate for him.  To get a doctor in to look at his injuries and bruising.  But I wasn't allowed to photograph them.

So much for independent advocacy being a safeguard and available under the mental health act.  And what about advocacy for carers and family members?  Who is there for us when we are being told to go away and leave our family in the locked ward?  Out of sight and out of mind.  Fortunately for the person I care for I was not going to be intimidated.  I persisted in standing with him and helping him to have a voice.  But this is not good enough.  Independent advocacy can't be just an assumption for then it is in danger of being eroded and of disappearing altogether.  For some unfortunate people.

Saturday, 8 September 2012

is the new mental health strategy more than just a fine piece of rhetoric?

I want to explore the new mental health strategy for Scotland in terms of its power and impact on the psychiatric system and mental health services.  To investigate its relationship to the mental health act.  The implications for human rights in psychiatric institutions.  How the strategy can translate into an action plan.  Where the voices of lived experience are on this continuum.  If the gulf between theory and practice is in danger of becoming a chasm.

It will mean looking at what isn't in the strategy.  And why this might be.  What has been included and for what reason.  The philosophy of the whole and the reality of the expectations.  The commitments, their order and content.  How the localities will be resourced and equipped to carry out the strategic aims.  Is it realistic, achievable and measurable.  And if so who will decide.

Above all, I will consider these things in relation to my own personal experience and story.  Of being a service user, survivor and carer.  Over 40 years of engaging with the psychiatric system and mental health services.  Experiencing recovery when it was just a word among peers.  And peer support in the midst of psychiatric incarceration.  Solidarity with others in the system who knew what it felt like to be forcibly treated.  Long before there was a national initiative or a place at the table.

I'm looking forward to the challenge of finding out if the new mental health strategy is more than just a fine piece of rhetoric.  More than an aspirational document.  And more like a template for action with a real commitment to change.  To bring about a transformation to the psychiatric system and the resulting mental health services.  While recognising and respecting the ongoing stories of the survivors.

Friday, 7 September 2012

this blog is only my opinion

I've been asked to make it clear, by someone in a position of power in the mental health world, that this blog is only my opinion.  And the same can be said about every blog post I write.  Just so there is no misunderstanding.

Wednesday, 5 September 2012

standing up for your rights and facing the friendly fire

Being in the psychiatric system meant it was very difficult for me to have my rights heard or for me to stand up for them.  Looking at the personal bill of rights I can see very few that I had the power to articulate.  When locked in and forcibly drugged.  At risk of injury and abuse. [this is when the safeguards in the mental health act should come into play]

Therefore being out of the psychiatric system and in the free world it is important for me, and others, to be able to stand up for our rights.  At the top of the list is "I have the right to ask for what I want".  Of course I know that in life you can't always get what you want.  But I have the right to ask for it.  Especially from people who are public servants and accountable.  From people who govern organisations that I have membership of.  People like me who should know what it's like to be in the psychiatric system.

And I expect to get an answer to my questions, from people in power who are accountable.  Otherwise it is not a democracy (where all eligible citizens have an equal say in the decisions that affect their lives) but an oligarchy (where power effectively rests with a small number of people) and even totalitarianism (where the state recognizes no limits to its authority and strives to regulate every aspect of public and private life wherever feasible).  [From Tokenism To Totalitarianism – On Being A Psychiatric Survivor Activist]  

I don't expect the totalitarianism of the psychiatric system to start creeping in to the mental health user led organisations.  This is a cause for concern.  When fellow survivors in positions of power think that they have the right to tell me what to do, to give me a telling off and then to accuse me of bullying.  It's ironic and very annoying.  I didn't get out of the psychiatric system, completely recover from mental ill health and traumatic treatment, just to be straitjacketed by people who should be standing with me in the fight for human rights in mental health.

The powers that be won't have to bother with keeping us survivor activists in line.  They can just leave it to our fellow experts by experience who are doing the job for them.  It's time to wake up and smell the coffee.  To wisen up and see what's going on in the mental health world.  And stop the friendly fire.  It's very irritating having to keep pulling the knives out of my back.

personal bill of rights

Here is a Personal Bill of Rights which I first saw at the WRAP (wellness recovery action planning) Facilitator training I attended in June 2008 in Edinburgh, Scotland.  It was in the WRAP training manual.  (from the Anxiety and Phobia Workbook by Edmund J Bourne PhD)

1. I have the right to ask for what I want.
2. I have the right to say no to requests or demands I can't meet.
3. I have the right to express all my feelings, positive or negative.
4. I have the right to change my mind.
5. I have the right to make mistakes and not have to be perfect.
6. I have the right to follow my own valuesand standards.

7. I have the right to say no to anything when I feel I am not ready, it is unsafe, or it violates my values.
8. I have the right to determine my own priorities.
9. I have the right not to be responsible for others' behaviour, actions, feelings or problems.
10. I have the right to expect honesty from others.
11. I have the right to be angry at someone I love.
12. I have the right to be uniquely myself.
13. I have the right to say "I'm afraid"
14. I have the right to say "I don't know"
15. I have the right not to give excuses or reasons for my behaviour.
16. I have the right to make decisions based on my feelings.
17. I have the right to my own needs for personal space and time.
18. I have the right to be playful and frivolous.
19. I have the right to be healthier than those around me.
20. I have the right to be in a non abusive environment.
21. I have the right to make friends and be comfortable around people.
22. I have the right to change and grow.
23. I have the right to have my needs and wants respected by others.
24. I have the right to be treated with dignity and respect.
25. I have the right to be happy.

Saturday, 1 September 2012

when is the voice of service users not the voice for service users?

This is the conundrum.  And I think worthy of exploration and explanation.  The former I can attempt.  For the latter I will need more information.

I got wind last week of a national event, launching a patient safety programme in mental health.  Which had taken place earlier.  And heard it first through the tweeting of our national mental health service user led organisation VOX (Voices of eXperience).  To which I replied asking for more information.  No answer.  Interestingly, just checked their tweets and can't seem to find the original tweet or my question.  Did I imagine it?

Then on Thursday at a national crisis & acute care steering group I participate in, from the survivor perspective, I heard more about the patient safety launch event and the presence of service user voices.  Five places through VOX.  I wondered if I had missed an opportunity to put my name down, to be involved?  On the VOX website it says their aim is "to ensure that service users get every opportunity to contribute positively to changes in the services that serve them and wider society".  

So I Emailed the VOX chair about it.  Got a reply today.  But still none the wiser.  It seems that service users and carers were chosen to attend this patient safety launch through HIS, Healthcare Improvement Scotland.   What looks to be a government quango.  And of which the Scottish Patient Safety Programme is a member.  You might describe it as keeping it in the family.

The VOX chair works for HIS and says that invites went out in her work role through a "subgroup structure of vol orgs service users and carers".  Which brings me back to the question "when is the voice of service users not the voice for service users?".  The answer might be "when it is the voice of government" or "when it is the voice of only certain hand-picked service users".

I look forward to more exploration of what it means to have a voice as a service user or survivor.  And of hearing the full explanation to do with the service user and carer involvement at the launch of the patient safety programme.  I may be making mountains out of molehills.  Seeing conspiracies where there are none.  It's just that the topic of patient safety has been close to my heart since February this year.  When the person I care for was very unsafe and sustained injury as a psychiatric inpatient.