Tuesday, 31 December 2013

Happy Hogmanay and a Guid New Year to Ane an' A'!

It's the last day of the year, Hogmanay for Scottish folks, and as usual I am glad to see it going.  Looking forward to a better one in 2014, more battles to fight and bullies to resist, in the movement towards a paradigm shift in psychiatric system thinking. It's as much about the process as the outcome, the journey and the small gains.  Being optimistic is useful, resilience another strength, and most of all having a sense of humour that can laugh in the face of anosognosia that seems common among psychiatric "professionals" and mental health workers.

Here's a top ten list of my New Year hopes, for Scotland's mental health world, in no particular order, some of which are achievable, others of which will no doubt take longer:

  • human rights focus in psychiatric treatment
  • mental health act safeguards that are safe
  • alternative ways of working with people in psychoses
  • peer run crisis houses
  • meaningful user, survivor and carer involvement, participation and leadership
  • critical voices allowed, listened to and acted upon
  • schizophrenia label laid to rest
  • a range of talking therapies on offer and not just psychiatric drugs 
  • no more stigma and discrimination of the so-called "mentally ill"
  • an end to forced psychiatric treatment

My side of the bargain is that I will continue to keep up the pressure as an activist and campaigner by writing wherever an opportunity arises or a thought occurs, to the people in positions of power and sharing with people of like minds.  I will not be downhearted at locked doors because in my experience there are always other open doors to be found, and if not then windows.  

Being an older person and a grandmother is an advantage in the war of words and internet action.  Been there, done that, seen it all.  And then something happens to shift and widen perspectives.  I pull some more knives out of my back, the scars soon heal, a few choice swear words help.  It gets easier with time and experience to stand up and speak out.  Here's tae us, wha's like us, damn few an' they're a' deid!

A guid new year to ane an' a'
An' mony may ye see,
An' during a' the years to come,
O happy may ye be.
An' may ye ne'er hae cause to mourn,
To sigh or shed a tear;
To ane an'a baith great an' sma'
A hearty guid New year. 

What The Hell Is Actually Going On? @MentalHealthCop end of year blog post

Today's end of the year great blog post from Mental Health Cop: What The Hell Is Actually Going On?

"I didn’t take very long of being more than superficially absorbed in this area of interest before people started recommending I read various mental health related books.  Some of them were very general texts like the Willan Handbook of Forensic Mental Health and actually, for me, this became something of a substitute to being able to go on a training course of any relevance at all.  There is nothing out there to help you chart your way through murky waters of mental health and policing so this volume with its multitude of chapters by a variety of people from disparate academic backgrounds, including psychiatrists, psychologists and mental health nurses and as well as lawyers was well worth having.

But what you learn when you start piling into this stuff head first is that there are a large number of unresolved significant debates that often appear to become spats between the professions within mental health – and often between particular professionals.  As you realise the extent of these spats, the power dynamics going on between the different professions and the evidence upon which many rely for their claims, you realise what a precarious house of cards the whole thing is.  But it’s a house of cards into which we can currently compel people with a multitude of vulnerabilities, shut the door and treat them against their will.  So inevitably, to an outsider, this can become quite fascinating and I admit I have become quite absorbed by the history of it all.

How on earth did we reach a position where we can force treatment upon people, when even the profession of psychiatry itself cannot agree what is going on?  Expand beyond psychiatry to other mental health related professions and we just see the problems growing wider.  There is a corpus of people selling books and doing conferences who are basically suggesting that the last fifty years of psychiatry and a drug-oriented model of care, with an acknowledged subordinate role for talking therapy and other psycho-social support, is flawed.  Actually, it is claimed to be doing more harm than good.

So I’m genuinely interested: is this correct on any level that is relevant and important to what we’re doing in our society and the role we expect our police to play in delivering that through the use of force? ....."

Read complete blog post.

And here's my comment published:

"Another pertinent and honest blog post, thanks Michael. You ask a number of valid questions regarding the use of force in psychiatric settings and the long term effects of psychiatric drugs.

I now call myself a survivor, of mental illness and psychiatric treatment, at age 61, although for many years I was just a mother and community development worker who had recovered from 3 episodes of psychoses and got off the psych drugs. However as a carer whose 3 sons have all been through the psychiatric system and now a grandmother it seems fitting that I identify as a survivor and speak out as an activist and campaigner. I want to see system change for the sake of my future family who shouldn’t have to go through what I and other family members have.

I really didn’t like being forced to take psych drugs, they didn’t agree with me, made me depressed, caused more problems than the initial psychoses, following childbirth and at the menopause. Life transitions. The problems with mental health treatment is it can be a “one size fits all” scenario. Where subjective opinions become gospel truth, written indelibly in psychiatric notes, justifying coercive treatment and lifelong mental illness prognoses. I didn’t believe it and recovered. But the schizoaffective disorder still sits in my notes and rears its head now and then.

Like you I have wondered what on earth is going on? It doesn’t make sense to look at behaviours and call them symptoms then forcibly treat even unto death. Which has happened to some of my family members, women. My mother in particular who was kept on a depixol injection for life. Why? Because they had labelled her with schizophrenia. But she didn’t hear voices and her mental ill health was due to life stresses or trauma. These eventually passed but the label and drugs continued.

I want to see a paradigm shift so that people with mental ill health are treated as people first, as individuals not as symptoms or behaviours. I want to see relationship building and level playing fields. First do no harm.

A guid new year to you and yours, Chrys"

[Posted by Chrys Muirhead (@ChrysMuirhead) | December 31, 2013, 10:40 am]

Thursday, 26 December 2013

unfit for purpose

The Mental Welfare Commission for Scotland had declared the IPCU/Ward 4 at Stratheden Hospital, Fife, "unfit for purpose" way before my son was forcibly detained there in February 2012.  An old building with different levels, dormitories, a locked seclusion room with a light switch on the outside used as a "naughty step", a front door and a back door (which I was sent to) and staff who were in the habit of rolling their own cigarettes when on duty, in front of the patients.

If the building was unfit for purpose does this mean to say that the staff were unfit to practise?  Was it and is it possible for psychiatric staff working in a building that is unfit for purpose to, nevertheless, behave in a fitting way and with humanity?  Can the limitations of the building be blamed or responsible for dehumanising treatment?

I say no. 

There is no excuse for denying the basic human rights of locked-in psychiatric patients.  We live in a democratic and developed country where even prisoners have their rights protected.  The Mental Health Act for Scotland has a number of safeguards in place that are meant to protect the rights of people with a mental disorder under the Act.  The Mental Welfare Commission is a safeguard.

And yet, despite knowing what our rights were, my son and I fought to be heard and to be treated with respect, by the psychiatric nurses in the Stratheden IPCU.  I had to advocate for my son at meetings and was told by the RMO (registered medical officer, a consultant forensic psychiatrist) that people without capacity don't require advocacy.  This RMO kept trying to speak with my son without an advocate being present. 

My son was locked in the seclusion room, overnight for hours at a time, with no toilet or water to drink, the light switch flicked on and off at random.  He was forcibly injected in this same room with haloperidol which caused him to lose balance whereupon he was castigated.  I had to remind staff of procyclidine for side effects.  I was both his carer and named person, and for neither was I given the due respect of the roles.

The Mental Health Officer aligned herself with the psychiatric professionals and even offloaded her own personal story of a family member in a psychiatric locked ward for over a year, to my son and I at a meeting in the community after he was discharged.  Which caused a lot of upset for my son.  A complaint I made to Fife Council Social Work got the response that it was a "learning point" for the MHO. 

Fife Council Adult Protection team investigated my complaint about my son's treatment in Stratheden and tried to blame me for causing "psychological harm" when my son was having his basic human rights denied in the IPCU.  No toilet, no water to drink and no pen to write with.  My character was investigated and the lead investigator, a Fife Council social worker and MHO, along with my son's MHO, questioned a psychiatrist and CPN about me.

Trying to blame a mother for system failure, a building unfit for purpose and staff unfit to practise.  

Then last week at a mental health focus group meeting I had to sit there while a Fife Council Adult Protection worker handed round various promotional materials - fridge magnet, spectacle cloth, notepads, pens, mirror, keyring - which had the adult protection logo on it.  Many of the service users at this group will have been subject to forced treatment in psychiatric settings where adult protection investigations are on the side of the oppressors.

Rubbing our noses in it. 

Such is the state of affairs in Fife where "meaningful involvement" in mental health matters is nothing of the kind.  It continues to be a tick-box, tokenistic and tedious undertaking.  The powers that be have no intention of letting go the reigns or of letting folk with lived experience in to the decision-making agendas.  It's still a cosmetic exercise and we still have no independent advocacy in Fife.  In my opinion.

It will require a paradigm shift, an about turn.

Tina Minkowitz on MIA 'The Story of Legal Capacity: Specificity and Intersections'

Tina Minkowitz
The latest blog post from Tina Minkowitz [Social Science Research Network papers] on Mad in America: 'The Story of Legal Capacity: Specificity and Intersections'.  


"In this article I explore legal capacity as it has impacted my life, through the lens of a negative experience and a positive one.  As many of you know, legal capacity is an important right guaranteed in the Convention on the Rights of Persons with Disabilities (CRPD).  It is also guaranteed in the Convention on the Elimination of all forms of Discrimination Against Women (CEDAW), and in a broader sense is incorporated in the Universal Declaration of Human Rights (UDHR) and the International Covenant on Civil and Political Rights (ICCPR).   

My aim is to encourage people to be aware that legal capacity is a social construct, it is not an inevitable fact of life and can be changed – indeed we are seeing it change before our eyes with respect to the particular act of marriage.  Legal capacity is being similarly reshaped from a disability standpoint, in a much more comprehensive way.  Please see CRPD Article 12, the draft General Comment on Article 12 by the Committee on the Rights of Persons with Disabilities, the IDA CRPD Forum Principles for Implementation of CRPD Article 12, and my article Norms and Implementation of CRPD Article 12, for more information."

Tuesday, 24 December 2013

mental health "cinderella" service - who will be Prince Charming?

A Christmas letter to Michael Matheson, MSP, Minister for Public Health, Scottish Government:

Dear Mr Matheson

I attended the fringe event on mental health at the SNP conference in October, held in the George Hotel, Perth, my home town, where you spoke about mental health being the "cinderella" service.  At the same top table were SAMH and Mental Health Foundation managers who spoke of £1.5 million pounds a year now being devoted to challenging mental health stigma and discrimination, through their joint work with See Me.

At the same conference I heard the figure of around £4500 per week for the cost of one acute inpatient bed in general hospitals.  I have made FOI requests to both NHS Tayside and NHS Fife boards, regarding the cost of an acute psychiatric inpatient bed per week.  Which is £3000/week for Tayside and around £2000-2500/week for Fife.  Therefore about 50% more is spent in general acute inpatient services compared to the psychiatric equivalent.

At this festive time of year when goodwill and hope abounds I am wondering who will be Prince Charming and rescue the "cinderella" service of mental health?  Who will bring psychiatric services up to the level of general health services in monetary terms?  So that those of us finding ourselves in the fairy tale land of make believe, or psychiatric setting, won't have to wish upon a lucky star but will be supported by a well resourced service.

I am looking forward to a Guid New Year which is better than the one we're leaving behind.  Where mental health difficulties are seen as no respecter of persons.  Where people are people whether in psychiatric settings or in general hospitals.  Where psychiatric labels lose their power and psychiatric patients gain more rights.  To speak out, to be heard and to be taken seriously.  A range of voices.  

A toast:  Here's tae us, wha's like us, damn few an' they're a' deid!

Yours sincerely,

Chrys Muirhead

mother, grandmother, writer, activist, campaigner

Friday, 20 December 2013

BMJ article on anti-depressant prescribing 'Don’t keep taking the tablets' and my response

[update: my response did get published on the BMJ website]

A colleague alerted me to a BMJ article  on anti-depressant prescribing 'Don’t keep taking the tablets' by Fiona Godlee, editor, BMJ, and the "rapid response" of Prof Ian Reid, Cornhill Hospital, Aberdeen: 'It’s enough to get you down in the dumps.'.

Fiona Godlee writes "A diagnosis of depression may not be necessary. Instead they recommend a focus on shared decision making, watchful waiting, and support and information that helps patients to help themselves." while Prof Reid challenges the statistics re increased anti-depressant prescribing saying "The problem with raw prescription rates is that they do not tell us how many are receiving them, or why.".

This spurred me on to submit a response from my own experience which has no chance of being published in the BMJ because it's "anecdotal".  However here it is, "published" on my own blog:

"I live in Fife, Scotland, and would like to respond to this article from the perspective of lived experience, personally in recovery from mental illness and psychiatric treatment, and as a carer of many family members who have engaged with psychiatric services for over a 40 period.  I now participate in a number of national mental health groups, working with others to influence positive change.  In 1978 and 1984 I experienced puerperal psychoses, altered mind states, sensitivity to sounds, smells, situations, after the birth of my 2nd and 3rd sons.  Both births had been induced with chemicals and there was insufficient pain relief in the cottage hospital.  The treatment for psychosis, then as now, was hospitalisation and chlorpromazine injections then pills which brought me out of the psychosis quickly while also depressing me.  Within the year after each episode I managed to taper the anti-psychotic, come off it completely and return to my normal, busy life as a mother and community worker.  There were no anti-depressants on offer back then and I came out of the depression gradually and naturally as the trauma of childbirth and psychiatric treatment receded.

After 18 years of good mental health I reached the age of 50 in 2002 and experienced a menopausal psychosis similar to the postnatal episodes, and had to enter a psychiatric ward, under pressure, and was given risperidone.  As usual the anti-psychotic took me out of the psychosis quickly, coming back down to earth with a bump and depression followed.  I'm usually an upbeat person, don't get low moods, am very resilient and like taking risks.  However this time around when in a low mood I was given venlafaxine which depressed me more and I had a suicidal impulse, took an overdose and was rushed into A&E.  I was put on a maximum dose of venlafaxine and remained flat in mood, lacking a sense of humour and unmotivated, whereupon I was prescribed lithium, to “augment” the anti-depressant, and diagnosed with schizoaffective disorder.

I realised that I would have to take charge of my own mental health to recover and in 2003 began volunteering in different settings, gradually increasing my motivation and firstly came off the risperidone then tapered and ceased the venlafaxine, supported by the psychiatrist.  This left the lithium, 800mgs a day, which I decided to reduce by 200mg a month and informed my psychiatrist who said I had a lifelong mental illness and had to remain on the mood stabiliser.  I wasn’t convinced of this and didn’t see myself as mentally ill so I tapered the drug, successfully, no difference in mood, and got back on with my life, eventually working full-time in an FE College and gaining another postgraduate qualification, in lecturing.

The point of my story and personal experiences is to highlight how much harder it was for me to get over the trauma of a psychosis and psychiatric treatment by being prescribed an anti-depressant.  It delayed my recovery while also causing suicidal impulse.  I’ve since read that this can be a side effect of venlafaxine but I wasn’t warned of this at the time of being prescribed it.  It also causes bone loss in maximum prescribed doses and about a year after ceasing venlafaxine, in March 2005, I fractured my fibula in 3 places when walking down stairs.  Fortunately I didn’t test positive for osteoporosis although it has caused arthritis.

I believe that it would make sense to gather qualitative feedback from a range of patients on the effects of anti-depressant prescribing and use.  Independent surveys and action research with no conflicts of interest or personal agenda, involving people with lived experience.  Although Scottish Government has a target to increase psychological therapies and reduce waiting times to 18 weeks, if a person is depressed or mentally distressed then having to wait months to talk things through can only increase the likelihood of them being prescribed an anti-depressant.  As a writer and activist I’m interested in people’s stories, which means that I keep hearing them.  A Glasgow taxi driver told me that he knew five of his colleagues who were on anti-depressants.  At a conference, not mental health, I heard from a woman who had been on venlafaxine for over 10 years, due to pain caused by stress when her husband had a life-threatening condition over a 2 year period.  These are anecdotal accounts yet there has to be a place for the personal narratives alongside the medical science statistics, in my opinion.  To give a fuller picture and make sense of it all."

Thursday, 19 December 2013

why the strong arm tactics?

I think there are "strong arm tactics" in psychiatric settings and mental health services where I live for a number of reasons:

  • lack of meaningful involvement of service users and survivors in mental health service design and delivery eg not paying out-of-pocket expenses, top-down agenda making, focus groups rather than participation and leadership groups (see feedback report from Mary O'Hagan presentation March 2011, event funded by NHS Fife and Fife Council)
  • lack of shared decision-making, partnership working and clear communication eg users/carers not given all the information, only involved in some/few areas, patronising behaviour from staff
  • lack of real recovery-focused services, more about maintenance and risk
  • lack of resource, the "cinderella service" eg psychiatric wards with no therapeutic input, voluntary sector organisations unsure of funding and having to compete with each other to survive
  • hierarchical relationships between paid workers and service users - protecting, patronising, punishing rather than enabling, empowering, employing exit strategies so people can leave services and get back on with their lives recovered
  • a lack of trust and even fear about people with "mental illness", that they are a risk to society and need to be controlled so as not to harm themselves or others

These are not exhaustive and the issues are no doubt more complex and to do with history, culture and systems:  "we've always done it that way"

However I have a son using mental health services in another health board area and it has been a far more positive experience.  More resource in hospital and community, therapeutic input in psychiatric wards, respect for carers, partnership working between user and worker, more recovery focus in the services.  

Because I now have this comparison between health board areas it has clarified in my mind what the gaps are and why our experiences where we have lived for over 23 years, and used mental health services for 18 of these years, have been so negative.

Next blog on suggestions for improvement.

Wednesday, 18 December 2013

strong arm tactics

In the mental health world locally where I live the response to critical voices or negative feedback, in my experience, results in strong arm tactics.

This can take the form, in psychiatric settings, of coercion and control, forced compliance and human rights abuse.  In the community at large it is more insidious in nature and can result in services where paid workers run "user-led" management committees, drop-in services have a "big brother is watching you" feel to them and locked door facilities claim to be protecting the service users.

As I have morphed into a survivor activist and human rights campaigner I seem to be more at the receiving end of this type of thing.  As if to warn me to keep quiet and sit still.  Just like school.  In the old days it could end with the belt as a deterrent.  I just made sure after the first time that I didn't get caught.

I had more of the same recently at local meetings which I find very difficult to thole.  The lack of insight is stifling.  It's impossible for me to take it lying down or with a straight face.  Like the jesters of old I employ a range of party tricks to raise awareness and deflate egos.  It doesn't go down well and that makes me feel better.

They seem to have no concept of "meaningful involvement" and think that we don't need any out-of-pocket expenses.  Yet they are on good money and in addition get their expenses covered.  They expect us to participate out of "goodwill".  I kid you not.  They've sat by and watched us being coerced and disabled by psychiatric treatment and we're meant to be grateful?

Welcome to my world.

Sunday, 15 December 2013

the great divide

Scotland's new mental health strategy continues its bed-sharing with psychiatry in separating the sheep from the goats, the common mental health problems from severe and enduring mental illness (SEMI).  And consigns those of us who experience psychosis to the scrap heap of psychiatric drugging and lifelong disability.

Let's not kid ourselves that we've tackled stigma and discrimination in anything like the way it should be challenged.  At the root of the problem which is psychiatric labelling and disabling.  The silencing of critical voices will not serve anyone nor ensure that the human rights of mentally ill people are protected.

I should know.  They've been trying to exclude my voice from the table since getting involved in 2008.  They want to do it "their way".  Cronyism, back slapping and not rocking the boat.  Huh.  I say rock the boat whenever possible.  The waters aren't calm for those of us labelled SEMI, sequestered in the cul-de-sac where might is right and capacity is only in the eyes of the beholder.

Well I refused to stay in the SEMI and have become detached.  I've crossed the great divide and had to do it myself.  I'm not popular with the "in crowd" but couldn't give a monkey's.  Let them kowtow and suck up.  It's just a load of hierarchical nonsense which I won't be entertaining.

I'd rather be a survivor than a sucker, any day.  So there.

psychiatric abuse

I'm now 61 years old and looking back over the years of my life I can honestly say that the most invasive and abusive treatment I have ever experienced has been in psychiatric settings.  I say this as fact and without emotion.

In 1978 and 1984 I was forcibly injected with chlorpromazine in Hartwoodhill Hospital, Lanarkshire, after voluntarily going into the acute psychiatric ward after childbirth and what the psychiatrists called "puerperal psychosis".  To me it was being extra sensitive to the world around me, the sounds, smells, situations.  My baby was 13wks old, my second son.

I thought that going into hospital would result in respite and sympathetic treatment but soon found out in 1978 that it meant coercion and control.  If I'd been 100% mentally well I would have remembered that psychiatric treatment wasn't a positive experience because I knew this from what my mother had to go through.  But fortunately my psychosis meant I was somewhat removed from reality.

In 1984 I knew what I would be facing and was more fearful.  But I knew also that I had no option and would have to enter the psychiatric ward, and did so unwillingly although not dragging my feet.  My baby was 3 days old, my third son.  Forced injections followed and I was discharged again with numb hip muscles from the injections.  A mother again who had been forcibly drugged.

On both occasions I recovered by taking charge of my own mental health, tapering the chlorpromazine and getting back on with my busy life as a mother and community development worker in different settings.  I'd become a Christian in 1981 so was involved in church work also.

Then in 2002, working full-time in community development, I experienced a menopausal psychosis and knew that I'd have to go again into a psychiatric ward and face forced drug treatment, coercion and control.  I had no option and knew it so went into Lomond Ward, Stratheden Hospital, voluntarily.

I did consider leaving as I remembered what my oldest son had gone through in Lomond Ward in 1995/6, his head injury, his forced drug treatment and forced ECT that resulted in a critical incident.  But as I considered this I was told that I had been detained for 72hrs and had to take the "medication".  The game was up, I swallowed the risperidone under coercion.

I'd moved my mother to the Cupar area in 1993 and she had continued to get her depot injection of depixol every 3wks, although in my opinion she didn't require this treatment or level of control.  But she chose to accept it voluntarily and lived with the consequences, dying in 1998 at age 68yrs, before her time.  My mother had also experienced psychiatric abuse from the 1950's onwards but didn't speak of it.

In 2012 I advocated for my youngest son who was subject to psychiatric abuse in Stratheden Hospital.  And for taking this stand I was coerced and bullied by psychiatric staff.  Badmouthed in psychiatric notes.  Slandered and accused by a range of "professionals".  The label "family history of schizoaffective disorder" was written in my son's notes to justify their behaviour.  Blaming a mother for system failure.

At the end of 2012 and into 2013 I stood with and advocated for my middle son as he found himself a psychiatric inpatient, not in Fife.  The same forced treatment with cocktails of psychiatric drugs although my son was a willing conscript except for the forced injections which I complained about. 

But I wasn't coerced or bullied in this hospital where I hadn't been a psychiatric inpatient and where they had no record of my psychiatric labels.