Wednesday, 31 October 2012

advance statements and taking back the power

(published on Mad in America 31 October 2012)

As a sometimes conscript of the psychiatric system I have reflected on ways of staying in control at times of mental distress and have come to believe that an advance statement or directive has the potential to take back control.  Especially if it is linked to a self management tool like the Wellness Recovery Action Plan (WRAP) and the Peer Support of people with lived experience.  I think it makes sense for everyone who has experienced mental distress to consider this action, for as Dr Martin Luther King Jnr said "there is power in numbers and there is power in unity".

When I first heard of the advance statement my initial response was a sceptical one, that it would have no influence on what happened to me if I became mentally distressed and had to be hospitalised.  My experience of voluntarily entering psychiatric wards (1978, 1984, 2002), in mental distress or diagnosed psychotic, has generally been of forced treatment and psychiatric drugs.  In the most recent episode the old mental health act came into play, a 72 hour detention in a psychiatric hospital, a mixed gender acute ward where I felt very unsafe and didn't want to stay.  Force, in my experience, can be the threat of physical restraint and the restriction of freedom.

Therefore, for those of us who have been used to losing our personal power when mentally distressed, or having it taken away by compulsion or threat of force, it can be difficult to trust in any personal statement that may be overturned by psychiatrists, and which has no legal standing.  The challenge then, as I see it, is in the writing of an advance statement that has power to take back control and to do this alongside a psychiatrist.  Negotiating a plan of action that will ensure a preferred course of action and minimise the threat of compulsion or force.  

In Scotland the Mental Welfare Commission has to be informed when advance statements are overridden, and can make enquiries as to whether it is a "genuine override" and if so how did it happen (see MWC annual monitoring report p 49,50).  In 2011-12 there were 19 recorded cases of "actual overrides", although the MWC doesn't have a record of how many advance statements exist in Scotland.  Of these 19 overrides only 2 cases were followed up by the MWC, the others were sorted out in meetings with a DMP (designated medical practitioner) or at a Mental Health Tribunal.  I would be interested in any patient feedback but there seems to be no record of this.  And my own experience, as a carer attending two MH Tribunals, was of the psychiatrist having the most power or voice, followed by the mental health officer, then the carer and the patient last of all.  The tribunal members at these meetings I attended were from professional backgrounds, such as psychiatry, legal, social work. 

A WRAP crisis plan can be useful in creating or inserting into an advance statement.  I first heard about WRAP through attending a Scottish Recovery Network seminar in April 2006, Edinburgh, facilitated by Stephen Pocklington of the Copeland Center.  Then in June 2008 I completed the WRAP Facilitator training, also delivered by Stephen, and proceeded to lead WRAP workshops in different Scottish areas, with another colleague co-facilitating.  Our first event was in Fife, 'An Introduction to WRAP' attended by 28 participants travelling from all over the country.  I went on to deliver 2 day and 6 week courses. 

In January 2008 I'd set up Peer Support Fife to promote the peer support model in Fife where I live and to keep informed about national and international developments.  And began to deliver introductory workshops on PS locally and further afield, while also going out and about with
from right: Shery, Chris, Karen Taylor, Ron Coleman, Jacquie Nicholson
WRAP.  I'd got a copy of the book WRAP and Peer Support by Shery Mead and Mary Ellen Copeland, prior to doing the WRAP facilitator training, and last year was pleased to welcome Shery and Chris Hansen to Fife, as keynote speakers at our peer led crisis alternatives event 'At the Sharp Edge'.  

Early 2008 I also discovered online the Pathways to Recovery strengths self help workbook from the University of Kansas, and ordered 20 copies, then the Pathways team sent another 20 free which I distributed to colleagues nationally.  It was the beginning of a much appreciated supportive relationship and they posted WRAP materials, keeping in touch by Email [many thanks to Joanna from KU, a pen pal and a listening ear].  I used the strengths exercises in WRAP and PS training, and now in lecturing work with mental health nurses, from the survivor perspective, another great resource in reclaiming our stories and recovering our lives.

And so I have started to construct my own advance statement, it's a work in progress that will take time to complete.  I met with a psychiatrist after drawing up a draft copy, using a template from Alzheimer Scotland, and adapting it to suit my preferences.  We had an interesting discussion around anti-psychotics, neuroleptics, compulsory treatment, having a single room, being treated with respect, home support rather than hospitalisation.  We didn't agree on everything and I hadn't expected that we would.  But it was a start to the job of creating a workable advance statement that will enable me, if in mental distress and finding myself in the psychiatric system, to take back the power.

Monday, 29 October 2012

women get ECT in Scotland twice as much as men

[updated information]

In Scotland the figures for ECT (electroconvulsive therapy) given to women is twice that of ECT given to men.  In the SEAN (Scottish ECT Accreditation Network) 2011 annual report, in the summary and key findings, page ix it states "More women than men received ECT (68% vs 32% of patients)" [update, 2012 report 71% women to 29% men] and says that it reflects the proportions of men and women being treated with depressive illness.  The median age is 57 for men, 59 for women.

I have concerns about the fact that twice as many women as men are given ECT in Scotland, many of them older women, regardless of whether there seems to be a correlation to treatment for depression.  For electroconvulsive therapy is still regarded by many as a controversial treatment which results in memory loss and brain damage.  [See article by Peter Breggin, testimony by electroshock survivor Leonard Roy Frank and article 'Electroshock as a form of violence against women' by Bonnie Burstow]

The SEAN report tells us that for 63% of patients getting ECT  this was as a result of "medication resistance to anti-depressants".  Which leaves 37% of people, two thirds of them women, getting ECT for other reasons.  The total number of 'episodes' in 2010 was 522 and total ECT treatments 4282, working out at around 8 shock treatments for every episode.  

Hope you're staying me regarding the statistics which can be mind boggling at the best of times and confusing when it's to do with something as controversial as brain shock treatment.  Which conjures up images, for me, of Dr Frankenstein and the film 'One flew over the cuckoo's nest'.  Add to this the fact that women in my family were given ECT involuntarily and you may have an idea as to where I'm coming from.

The SEAN report also mentions that 35% [2012 report 34%] of all patients were given ECT without being capable of giving consent (p7).  The report says this is an increase on the previous year's 27% rate of people incapable of consenting.  Therefore this means that in 2010 nearly a quarter of ECT treatments were given to women who weren't able to consent, around 1070 times.  If I've got my figures right.  And mostly they were administered twice weekly (p4).

It's good that the ECT figures in Scotland are available through SEAN and that the public can freely access them.  It means we can see what's happening with this treatment and try to make sense of the statistics.  It doesn't mean I'm any less concerned about twice as many women getting ECT.  And I would be even more concerned if the total numbers getting ECT were to increase.  

I am not keen on psychiatric drugs but I definitely don't want ECT given to me if I'm in mental distress.  We need alternatives to drug treatment and brain shocks.  I'm now 60 and more likely to be a candidate for ECT in my old age, being a woman, and with a label of schizoaffective disorder in my medical notes (an incorrect diagnosis that is written in indelible ink).  Will this influence my future treatment were I to become 'incapacitated' according to psychiatric 'professionals'?

[I'll be writing more about this subject in future blogs and also exploring the treatment of women in psychiatric hospitals, mixed gender wards, the use of compulsion/force and the paternalistic nature of psychiatry]

Thursday, 25 October 2012

social work service involvement - what are the risks?

[blog post started yesterday with pen and paper when on train to a meeting]

Recent experiences have forced me to assess the risk of social work services, in terms of their involvement with carers and families of people in the psychiatric system and under the mental health act.  And to consider the quality of the service offered and even thrust upon the unsuspecting care giver, who is trying to do their best for their child or family member, and becomes a target for system failure.

Strong words resulting from strong feelings, rising up from the depths of disempowerment.  Where motives were misconstrued, intentions misrepresented and reputations maligned.  For the sake of the system and in response to opinions from 'professionals'.

A mental health officer is "a specially trained social worker" according to Scottish Government's Guide to the role, and is there to protect the rights of the person under the Act, to support the carer and be an independent professional.  Another safeguard is independent advocacy, helping the person to have a voice and take back control.  Problems arise when the MHO and advocacy services, both funded by statutory, are not independent.  In my opinion.

Then there is the adult protection investigation, undertaken by teams of statutory colleagues, headed up by social work, where anything and everything, said or written in the notes by a professional seems to be taken as evidence.  While things said or done by a patient or carer or family member appear to need verification.  You may even be under investigation as a carer and unaware of it.  For daring to question the psychiatric treatment and human rights issues.

So much for independence.  More like collusion and control.  Or am I being cynical?

The government's new mental health strategy has 'working more effectively with families and carers' as its first key theme.  Has anyone told the social work teams?  I recommend training sessions for social workers, led by carers and family members, so that the paid professionals begin to grasp that family relationships are foundational to society.  We are the ones picking up the pieces after traumatic treatment and we're in it for the duration, not just for a pay check, a vocation or because it makes us feel good.

I remember way back in my childhood, in the 1950's when involving social work in family affairs was frowned upon and to be avoided at all cost.  People would say things like "over my dead body" at the mention of social work involvement.  I now understand where they were coming from.  The risks can be too high.

straitjackets appearing

Have you ever had the feeling that straitjackets are about to appear, as in people wanting to restrict and restrain you, for daring to state an opinion contrary to the majority?  It happens sometimes to me and yesterday was another one of those occasions.  

In my experience it tends to happen when the group is small in number and limited in perspective.  Easier therefore to gang up on the person (group member) who has a different or opposing point of view.  It's a form of bullying and a misuse of power, in my opinion.  I describe it like having straitjackets at the ready, as attempts are made to dominate and control.

Most folk will back down from the straitjacket threat and this is probably a wise thing to do.  But there's something in me that won't back down and I get very annoyed by straitjackets appearing.  And sort of make things worse, by being funny or doing more non-conformist things, like taking out my Blackberry and saying that I'm doing a Facebook post about it.  Which gets everyone reaching for their straitjackets.

And I find myself surrounded by agitated and indignant people whose cages I have rattled.  I then say something about bringing sticky tape to the next meeting so I can put over my mouth to stop anything controversial coming out.  Feelings are running high.  And I'm still writing on my Blackberry.  Other folks' phones go off.  But that's OK because their messages are a priority while mine aren't.

Hierarchical shenanigans.  And a piece of nonsense.  Time for a sharp exit from this group.  Until the next time when the straitjackets appear.

Saturday, 20 October 2012

looking at life's tapestry from the knotty side

[another lighthearted blog post]
flowers one of my favourites

I used to do a lot of cross stitch in my 40's before having to wear glasses.  And found it a very relaxing exercise, keeping the mind sharp while also creating items that gave me pleasure.  I started off small then tried harder projects as I got more confident and experienced.  And ending up doing gifts for friends and other folk.  (see photos of work I still have)

country cottages another favourite
One of the challenges for me was trying to make the wrong side of the cross stitch or tapestry look tidy and as much like the right side as possible.  I'd seen other tapestries where the wrong side, that isn't usually seen, had knots and looked uneven.  So I was careful to weave in the ends of threads to stitches already made.  But no matter how I tried the wrong side looked nothing like the right side.

a selection of cross stitch 
And I think that life can be like this, a tapestry where things are often viewed from the wrong side.  The knots and threads worked in.  A pattern that doesn't make sense most of the time.  And, despite the best of efforts, still looks like it's full of knots and joined-up threads. 

But very occasionally in life's rich tapestry I catch a glimpse of the right side, like the patterns of my cross stitch creations, and it all makes sense.  The colours look good, the threads are continuous and the overall picture has been worth the effort.

"My life has been a tapestry of rich and royal hue
An everlasting vision of the ever changing view
A wondrous woven magic in bits of blue and gold
A tapestry to feel and see, impossible to hold"

Carole King, Tapestry single & album 1971

Sunday, 14 October 2012

The Power of Notes in Psychiatric Settings

I want to explore the challenges of telling other people’s stories in the context of psychiatric treatment and mental health services, and the potential difficulties that can arise.  And to do this in as dispassionate a manner as possible.  I’m thinking primarily of the notes that are written about us when in psychiatric inpatient care.  Although it could also apply to any notes written by professionals about us, which are subjective rather than factual or scientific.  In psychiatric treatment professionals have the power to diagnose and prescribe treatment, under compulsion if deemed necessary.  And mental health acts are in place to ensure that the treatment goes ahead while the safeguards contained within the act are there to protect the rights of people who are under the act.

The compulsory nature of psychiatric treatment and the power of the notes mean that people prefer not to engage with psychiatry if at all possible, and would rather discuss their mental health needs with a GP (general practitioner).  Where they can be prescribed anti-depressants or benzodiazepines for low mood, anxiety, stress and anything other than a psychosis or nervous breakdown.  The latter often requiring admission to a psychiatric hospital where voluntary can become involuntary, and a fast track to diagnoses of a disorder.  Labels that stick like glue, are permanent and cannot be removed from medical notes.

I recently had a conversation with a senior clinical manager in psychiatric services about a situation that had arisen and which required clarification on my part.  It was an interesting and useful phone conversation, once the emotion got down to an acceptable level for both of us.  The subject of note-taking in psychiatric wards came up and the manager agreed that these were not well written by nurses, on the whole.  And that many attempts at training nurses in note-taking had been undertaken but there were still issues with notes that were more about opinions than situations, and behaviours rather than factual representations.  The psychiatrists’ notes are usually brief and to the point, with descriptions of presentations, diagnoses and medication requirements.

The psychiatric nurses work to these notes and are compelled to carry out the instructions to the letter.  It’s easier to be clinically detached if you are not in a close relationship with the person you may have to medicate under compulsion, or forcibly drug.  The psychiatrist who is scientifically trained has the authority to diagnose and prescribe.  And the diagnosis may be inaccurate or unscientific, because the psychiatrist doesn’t have all the facts, might not know the patient well, and has to decide on a course of action quickly so as to avert or contain further mental distress.  For no-one likes to see another person in distress, if it can be helped.

Therefore when a nurse has to give compulsory treatment to a patient who is unwilling there is likely to be all sorts of emotions going on, in both nurse and patient.  Especially when some of us do not want to take the psychiatric drugs and think this even when in our right minds.   It's not necessarily a matter of anosognosia (lack of insight) but knowledge of what the drugs can do, their side effects, how they make you feel, and the difficulties of tapering and getting off them completely.  In my experience, being mentally distressed didn't make me more conformist or willing to swallow the pills.  It might be different for others who like and feel safe within a psychiatric setting.  Who are happy to have their stories told by professionals and to abide by the decisions made, and actions taken.

The friction arises when there is a difference of opinion between patient and psychiatrist, a breach or chasm that the nurse has to bridge.  And it takes more than a spoonful of sugar to help the medicine go down.  When mental distress becomes mental illness or mental disorder and a reason for considering compulsion.  A quick fix solution in a busy mixed gender ward filled with acutely ill patients at various stages of distress and presenting differently.  In the mix there may be substance misuse issues and criminal (offending) history, victims of abuse and perpetrators, the depressed and manic, anxious and obsessive.  Each and every patient with notes that have one thing in common - a list of prescribed psychiatric drugs.  And nurses who have the task of administering them, by pill, potion or injection, and writing it up in the notes.

In Scotland there are a number of initiatives ongoing, to bring about cultural change and improvements to patient care.  This Case Study demonstrates a collaborative approach taken in a mental health setting - "In Angus Mental Health Services we worked with Releasing Time to Care (RTC) to make the links between Rights, Relationships & Recovery (RRR), Scottish Recovery Indicator (SRI), Patient Safety and Leading Better Care (LBC).".  And feedback from service users "91% of service users asked state the care we provide is excellent or very good, with 88% feeling that staff focus on their strengths and hopes when planning towards their recovery. 85% of service users feel they understand their medication and its effects. , previously this had only been 51%.".

I want to believe that improvement initiatives will not only bring about positive changes in  psychiatric inpatient care but will have an impact on the writing of notes.  So that a person entering the psychiatric system does not have to fear that their story will become subsumed by a lifelong label of mental illness, and psychiatric drug prescribing.  And that traumatic life events, common to us all, and displaying as mental distress, are not automatically pathologised in notes, at the stroke of a pen.

[posted on Mad in America 13 October 2012]

Thursday, 11 October 2012

tales of the unexpected - how many fish?

Yesterday I had an appointment with a psychiatrist to go over my advance statement and met with him in the local psychiatric day hospital, situated in the community.  The purpose being to discuss what I'd written and to make it clear that if I ever happened to have another nervous breakdown or be mentally incapacitated then I definitely didn't want to be forcibly treated or to be given anti-psychotic drugs.  

In addition I wanted to make another attempt at getting the schizoaffective disorder label removed from my medical notes.  Having been given it back in 2002 when I refused to accept the bipolar disorder one.  The lesson being that to disagree with a psychiatrist is a risky business and the results will show up in your medical notes.  And used against you in future psychiatric engagement.  

Now I'm not keen on psychiatric facilities in the community.  They're not and cannot be community resources, as I understand it.  And I've worked in community centres for over 30yrs and know the difference.  Community work is all about empowering communities, to speak up and take charge of the resources at hand, to improve their quality of life and to fulfill their individual and community potential.

On the other hand a psychiatric facility/day hospital in the community is a place where compulsory treatment is meted out, psychiatric drugs are dispensed and blood tests taken to measure toxicity from these drugs.  Care in the community, described by Thomas Szasz as coercion and control.  And In 2002 I attended this day hospital for these reasons and also to sit with other patients, attempt quizzes, do colouring-in and exercises in the garden.  Most of which I couldn't do very well, being in a medicated state.

So yesterday's appointment in the day hospital, masquerading as a community resource, wasn't likely to go smoothly.  But as always I live in hope.  And entered the building with a positive attitude.  Gave my name at reception and sat down to wait for the psychiatrist.  The place was quiet as there were no patients in on a Wednesday.  Then a horn peeped and a fish van appeared at the front door window.  Reception staff went away to tell their colleagues who subsequently went out and bought their fish.

It was the same fish van that had been on my street outside my home just before coming out for the appointment.  I wondered if next there would be a Tesco delivery or ice cream van (I'm being ironic).  So that staff could get stocked up on foodstuffs.  But there is a Co-op across the road so probably no need for these.  Although they don't have fresh fish there.

The psychiatrist eventually came downstairs to where I sat, tweeting about the fish van.  We went upstairs to his room, to discuss my *advance statement.  I was still going on about the fish van.  Trying to make sense of it.  As if the day hospital was a home from home, when in fact it is a psychiatric facility where people are prescribed drugs, diagnosed with mental illness and socially controlled.

[*more about the advance statement in another blog post, hopefully]

Tuesday, 9 October 2012

the paradox of power and attempts to hold back the tide

There's something happening where I live that seems to be about to erupt or break free.  Despite the best efforts of an agency to hold back the tide.  Of anger and injustice.  Which bullying and intimidation hasn't managed to suppress.  And there's an inevitability of the outcome that some of us have seen from the outset.  But somehow in the corridors of power there hasn't been the same enlightenment.  I wonder why?

It's as if folk in perceived power think they can do what they like, even when in positions of public service.  As if they are now beyond the reach of the ordinary person, who pays their wages and to whom they should be accountable.  I'm continually amazed at the shenanigans that go on in statutory organisations where 'a job for life' seems to mean workers getting away with unprofessional practice.  And one-sided complaints processes that lack transparency

This story started off with an unwise move, a trickle in the dike, that looks like it's now become a raging torrent.  I say this as a spectator, having little to do with what now appears to be developing.  It's interesting and we can only watch and wait, to see the final curtain. 

I think that public sector agencies should always listen to the public, their customers.  It makes sense when you consider the consequences.  Especially when the voices are those of the oppressed who have nothing to lose, in their fight for justice.  For when you have nothing to lose then you are in a strong position.  The paradox of power. 

Monday, 8 October 2012

how about maternalism rather than paternalism psychiatrically speaking?

A thought came to me this morning, when driving in to the garage to get my car fixed.  That maybe a maternalistic psychiatric system would be better than the paternalistic one we've had for so long?  Of course I also think that no system at all would be best but I've got to be realistic, living in a world full of systems and institutions, with mostly men at the top.  And want to come up with a better solution than the one we've got.

If women were in charge then it could mean a reduction in force and compulsory treatment.  Like the matrons of old in the general hospitals they might be able to bring some balance to a system that is unbalanced.  Keeping order without having to resort to grabbing and jagging.  Arranging for a wide variety of resources for patients in distress.  Psychological and occupational therapies.  Peer support and befrienders.  Wards with a homely disposition and yet not too comfortable that people don't want to leave.  And get back on with their lives.

I think that maybe the good asylums of old were like this, communities within a system that had a family life all of their own.  Therapeutic communities like the moral treatment that emerged in the 18th century during the enlightenment, in England led by the quaker William Tuke.  Scotland seems to have had a different foundation, more one of moral management with William AF Browne a leading psychiatrist in the 19th century, who in 1838 became the superintendent of the Crichton Royal Hospital, Dumfries.  And a focus on 'mental disorders' linked to brain chemistry while also critical of compulsion in psychiatric treatment.

"There is in this community no compulsion, no chains, no corporal chastisement, simply because these are proved to be less effectual means of carrying any point than persuasion, emulation, and the desire of earning gratification... such is a faithful picture of what may be seen in many institutions, and of what might be seen in all, were asylums conducted as they ought to be."

An interesting mix of comfy paternalism with an undercurrent of the biomedical model.  Which gave way to eventually overcrowded asylums, being places where everybody and anybody could end up.  And then to a campaign of de-institutionalisation or care in the community with the continuing coercion and control.  

Prof Thomas Szasz in 'The Case Against Psychiatric Coercion' writes about the "state sanctioned power" possessed by the psychiatrist (p486) and concludes with:

"As Orwell’s (1949) nightmarish vision of Nineteen Eighty-Four nears its climax, O’Brien explains the functional anatomy of power to Winston:

'No one seizes power with the intention of relinquishing it. Power is not a means; it is an end. One does not establish a dictatorship in order to safeguard a revolution; one makes the revolution in order to establish the dictatorship. The object of persecution is persecution. The object of torture is torture. The object of power is power. Now do you begin to understand me?'(266)

The empire of psychiatric power is more than three hundred years old and grows daily more all-encompassing. But we have not yet begun to acknowledge its existence, much less to understand its role in our society."

I mentioned my idea of a maternalistic psychiatry system today in an Email to an American male colleague and he wasn't in agreement with me.  I immediately thought to myself that he would say that, being a man.  And also because he and I, up to this point in our long distance relationship, haven't agreed on much if anything.  Our dialogue is a challenge but hey anything that isn't boring is always worth working at, in my opinion.  And I do like a challenge, being an activist and campaigner for psychiatric system transformation, and a mother.

Tuesday, 2 October 2012

first carers' parliament - initial thoughts

I'll just do a short blog post at this point on the first Carers' Parliament held yesterday, Monday 1 October 2012, in Scottish Parliament, Edinburgh.  Which overall I thought was a useful day.  Always the most important consideration since I'm now over 60 and really want to enjoy as many moments as possible.  I'd taken a lot of notes and will reflect on them hopefully at a later date and comment about them.

Firstly it was very encouraging to hear the wide range of carer views and feedback in the morning session before lunch.  This was the highlight for me.  Carers saying it how it is and being allowed to have their say.  Well done to Scottish Parliament for giving carers a voice in this way!  It can't have been easy to listen to.  I found it moving, challenging and heartening.  It gave me hope and I found that I was not alone in being a carer.  And I even got an opportunity to speak without a straitjacket around.  Great stuff.

Another plus was the sharing by MSPs of their own personal experience of the caring role, speaking about family members and the difficulties they had in accessing services.  An honest thing to do and again not easy sharing your story.  It gave a sense of solidarity to the proceedings.  Added to which were the individual presentations by two different carers, from a father/husband's viewpoint, and a young carer.  Both of these talks preceded the open carer feedback and were powerful as well as pointed.

I want to make this first blog post on the Carers' Parliament launch a positive one.  There will be time enough to constructively criticise.  For me as a carer it was great to be sitting with other carers and sharing with them over lunch.  Then getting on the train back to Cupar I came upon another carer and we enjoyed the journey north, talking about our families, our lives and our reflections on many different topics.  Getting to know one another, this is what it's all about.  A grand end to the day.