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?

[Posted by mentalhealthcop ⋅ December 31, 2013]

"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]

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'.  

Introduction: 

"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."

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

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."

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.

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.

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. 

Lomond Ward, Stratheden Hospital - my internal redesign plan suggestion Oct12 for safer female accommodation

[on Stratheden Hospital blog]

Here is the plan I devised for redesigning the inside of Lomond Ward, Stratheden, so that female patients could be separate from male patients in their sleeping areas, and keep some degree of privacy.

I also proposed more activity rooms for patients and areas for psychological therapies, WRAP, Peer Support and groupwork.

I sent the plan off to senior NHS Fife managers on 17 October 2012, here is the Email:

"I have attached a rough plan of proposed changes to Lomond Ward that will improve the female patient experience and make the ward safer for them.  And thereby have a positive impact on all patients.  I believe that if the female patients are looked after well then everyone will be better off.  I say this as a former Lomond patient, feeling very unsafe in the end dormitory overlooked by males in single rooms.  I also speak from the experience of a carer who has visited the ward on many occasions over a 17yr period, since 1995, when my oldest son was an inpatient.

I have also proposed changing other rooms, to make more space for patients and staff to interact with each other, building relationships and promoting recovery.  As a member of the new Fife patient safety group I wanted to make a positive, initial contribution.

Here are the main points:

• that the female sleeping area be completely separate from the male bay - one of the single rooms here could be used for 'observation' of females
• that the observation rooms could be male single rooms, the sitting room into another 2 male single rooms
• that the staff room, used to be quiet room, should go back to being a patient area, quiet room, with books, magazines, crafts, computer, OT activities
• that staff use the original rooms across from what were the observation rooms, these could be made into one room, where staff could ensure the privacy of female patients
• the ECT rooms be made into one large sitting room/TV/music room
• the group therapy room/meeting room for patient use rather than clinical meetings - for group work - WRAP, peer support, strengths/confidence building, psychological therapies
• a meeting room could be in the OT kitchen which looks a similar size

The aim would be to make Lomond a more patient-centred ward and this could be done with the minimum of upheaval or cost.  Rather than the focus being on clinical meetings.  Making more space for patient interaction and group work.  A more safe sleeping environment for female patients.  All of this will encourage recovery and a return to wellbeing and to the community.  It's what I would have preferred when an inpatient in Lomond."  

I got no response.

Menopausal Madness: Altered Mind States at the Change of Life

Looking back, I suppose it was inevitable that, having experienced two episodes of postnatal "hormone imbalance" (what the psychiatrists called it back in the 1970's) or puerperal psychoses after the birth of my second and third sons, I should have another out of body experience at the menopause.  But nobody had warned me or said anything and when I hit my 50th year in 2002, working full-time in a manager post with a voluntary organisation in my home town of Perth, the change of life came in with a whoosh or a bang.

I'm not a person who experiences things by halves, it's all or nothing.  The same goes for mind and body stuff.  I remember not liking puberty and trying to resist it, at between 13 and 14 years of age.  I preferred remaining a child, being one of the boys, climbing trees and running around.  Becoming a woman felt like everything was getting out of control.  Body changes meant I couldn't always go swimming and had to wear restrictive underclothes.  Sleeping on my front was uncomfortable.  Boys began to look at me differently.  I stayed about the house more, went about with girlfriends, until I got used to it.  It took me at least 3 years to feel comfortable.

the Monkees

It just meant doing different things like listening to pop music, it was the 1960's, and we joined the Monkees fan club, knitting the woolly hat, buying the LPs.  Following fashion and pirate radio stations.  Watching TV series like 'Man in a Suitcase' and 'The Avengers'.  Playing sports at school, joining the hockey and netball teams.  Going to youth clubs and new films at one of the many cinemas in town.  The "swinging sixties" had passed me by and before too long it my 18th birthday was approaching and I was preparing for leaving home and going to university in Aberdeen, a city to the north of Scotland and some distance away.

I knew that when women approached the menopause they seemed to get a bit absent-minded and experienced hot flushes.  I'd worked with many women who were going through the change of life and disorientation was a common occurrence.  They spoke about going out in the car to drive somewhere then forgetting where they were going.  We all used to laugh about it.  Some of them were on HRT, others may have been on prescription drugs to get through.  I was younger at the time so didn't ask more about it and didn't think it would happen to me.

It didn't happen to me.  On the contrary, I became extra sensitive to the world around me, as if tuned in to the universe.  Sounds became louder.  Thoughts became deeper.  Smells became almost unbearable.  I felt the pain of a crying world.  All in the space of a week or two.  I remember swimming in the local pool after work, as I was in the habit of doing, and reflecting deeply.  It wasn't unpleasant and I didn't feel that things were going out of control.  However my sons were concerned.  I was losing grasp of other, ordinary, everyday things.  I wasn't myself.

So I agreed or was persuaded to go voluntarily in to my local psychiatric hospital, up the road, where I would never have gone in my usual state of mind.  Whenever I walked in the ward I knew that I didn't want to be there.  But the decision was made.  I was detained for 72 hours and made to take the risperidone.  I didn't want to and knew it would depress me.  And so it did.  Within a short space to time I had come back down to earth with a bump.  Reigned in and subdued.  I got out of the acute psychiatric ward after about a week or so.  It took me more than 2 years to get off the drugs and out of the system.  I had to do it myself.

During the 2 years of psychiatric drugging I was also going through menopausal changes which were more severe because of the chemicals I was having to ingest.  Hot flushes became complete body sweats.  I remember doing voluntary work in a charity shop and having to take a change of clothes.  I got anxiety and panic attacks when on the risperidone, venlafaxine and lithium, and had to take lorazepam at times.  But I resisted taking them on a regular basis as I didn't want to become addicted.  In the early days I attended a day hospital where activities happened.  It was difficult to get up the morning and then to be motivated.  The drugs slowed me down at the beginning of the day.  Of course this was their purpose.

After having a suicidal impulse and taking an overdose of venlafaxine tablets I was put on a maximum dose of the drug.  I had to be careful after that, not to act on impulse.  At the psychiatrist's appointment, every 6 weeks, I asked to have a change of anti-depressant but he refused my request.  Instead he put me on lithium, to "augment" the anti-depressant.  I had also asked for psychological therapies but was denied this for the first year or so.  When I eventually did get a clinical psychology appointment I was on a cocktail of psych drugs and the meetings were of no use to me.  My concentration was impaired because of the drugs.  I knew this but felt powerless to do anything about it.

The menopausal effects were beginning to subside as I became more active in voluntary work.  My motivation increased with doing physical activities.  The day hospital had a walking group and I joined this.  It was organised by the Occupational Therapy department who also had a course that linked day patients up with the local further education college which I signed up to.  We did badminton, golf practice and circuit training.  This was before I fractured my fibula so I benefited from learning how to play golf and walking for miles in the countryside.  It helped with my recovery.  Unfortunately the OT activities are not now happening in the day hospital locally.

I always saw my menopausal madness or psychosis for what it was.  My psychiatrist labelled it as schizoaffective disorder.  I chose not to accept the label or the lifelong mental illness prognosis and did what I could to recover when the opportunity arose.  It wasn't easy.  I was fortunate to have a supportive family and to be naturally resilient.  I also was determined not to remain in the psychiatric system because of what had happened to other family members who had engaged with it.  However that was my decision and it's up to each of us to do what we can to survive.

FOI request response received today - Stratheden Hospital redesign programme

I received a letter today, from Roseanne Fearon, Head of Adults and Older People's Services, Social Work, Fife Council, in response to my FOI (freedom of information) request for information about the moving out of medium and long stay psychiatric patients from Stratheden Hospital, Fife.

A Fife Health and Social Care Partnership agenda, on 19 November 2010, entitled "Discharge Programme at Stratheden Hospital (Mental Health Service)" mentions a sum of £1,403,929 to be transferred to Fife Council to "successfully progress discharge from hospital to community based services based on person centred planning and community centred planning".

Here is another agenda from the Partnership meeting on 24 November 2011 entitled "Stratheden Hospital: Rehabilitation Service Redesign", where it says "If individuals are not discharged there is a risk that Fife Council Social Work Service and NHS Fife will not meet statutory duties in relation to NHS and Community Care Act 1990 and Mental Health (Care and Treatment) (Scotland) Act 2003, and individuals ready for discharge will remain delayed in hospital." and that "To date, two people have been discharged as part of this service redesign programme.".

It's now 2 years later and I continue to hear from long-stay patients at Stratheden that their needs are not being met in terms of their discharge preferences, in addition to the ongoing issues at the Circles Network managed Fife advocacy project.  Here is a copy of my questions and the council's response:

creating a new blog - Circles Network

[update 15 December 2013, all the Circles Network blog posts are now on the other blog]

I've decided to create a new blog - Circles Network and Advocacy in Fife - to contain all the information I've posted and will be posting about my engagement with Circles Network, Warwickshire, England, since 2009 and first hearing about them.  When I attended the demonstration at Scottish Parliament against the advocacy tendering in Fife.

18 May 2009 in solidarity

It was on 18 May 2009 that I ended up speaking, off the top of my head, to a group of fellow activists, about the council's tendering of advocacy services in Fife.  See video link.

I remember calling Circles Network the Circles project, because at that time I didn't know anything about them and had only turned up at the parliament to support the TODAY Group and fellow protestors.  

It was the beginning of my campaigning and a very enjoyable experience.

From the video write up:
"The TODAY group (Together Overcoming Discrimination Against you and me) is a mental health advocacy group based in Cupar which serves the whole of Fife. It supports the rights, views and opinions of over 300 members and 12 member groups in Fife. The popular and much-needed group has been relied on by people with mental health issues and their carers for 16 years. However, Fife Council & Social Care Committee decided to put mental health advocacy out to tender and has awarded the contract to an English-based group which will deprive people of local based services, and take away local jobs and volunteering opportunities. It may also lead to the loss of a 5-year Big Lottery grant.

TODAY have been campaigning against Fife City Councils decision. On 14th May they went to Holyrood, Edinburgh to lobby the Scottish Parliament to try and win support for their cause. Many of the campaigners demonstrated outside the parliamentary building where they found themselves side by side with Save Our Schools campaigners from Glasgow who were also lobbying parliamentary MSPs in a quest to get Glasgow City Council to overturn its decision to close 22 schools and its plans to close a further 34. This shows how council cuts are affecting people throughout Scotland. The TODAY and SOS campaigners gave each other some support and solidarity."

Notes And Other Fairy Tales In The Land Of Make Believe

[blog post from August 2012]

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?

critical voices not allowed

A brief post about speaking out and having a voice in Fife.

It's a very risky business if you live in Fife, have to use psychiatric services and express concerns or raise a complaint.  I speak from personal experience.  

Your name will be slandered in psychiatric notes, you'll be threatened with legal action by statutory funded agencies, bullied by staff and it will seem that they keep on getting away with it.

But I am still hopeful that justice will prevail.  Maybe it's because I'm an optimist.  Or just plain stubborn.  Whatever.  I am not prepared to put up with anything less.  

justice

on being perceived as a pawn, by others

One definition of a pawn is "A person or an entity used to further the purposes of another".  

Someone a while back said to me that "we are all pawns".  In response to a collective task for a cause.  I'm not sure if he felt himself to be a pawn or wanted me to act like a pawn.  A bit of both I think.  The tasks he gave me were physically difficult, for my age and fitness.  I did offer to do other tasks more suited to my abilities but my offer wasn't taken up.  In fact it was ignored.

It put me off doing any more tasks for him although I have persevered with involvement in other groups.  These have varied in terms of suitability and satisfaction.  I'm not easily put off nowadays by exclusive behaviour or rudeness, having encountered a lot of it in the mental health world.  However I am getting a bit fed up by some of the shenanigans. 

I'm wondering why there is an expectation that people would put up with this treatment and say nothing.  I think it demonstrates ignorance and discrimination.  It definitely wouldn't encourage outsiders to join or new insiders to stay.  I assume it's cultural and has been going on for a while.  The disregard for people's limitations or abilities.

I'll be sticking around to see if anything changes or improves.  It'll be interesting to observe what if anything changes for the better.  Watch this space ....

Divide and Conquer: the Abuse of Psychiatric Power and Resisting the Pressure

I have a bone to pick about the dichotomy of surviving schizoaffective disorder, lifelong mental illness and psychiatric treatment, contrasted with the labels in my youngest son’s psychiatric notes, saying “family history of”, “mother’s mother had schizophrenia”, “oldest brother has paranoid schizophrenia”.   And about the efforts of psychiatry to separate my family, one from another, as they have forced treatment on us.  Because all of us have been through the psychiatric system in some ways there has been strength in numbers.  In other ways it has meant the labels have stuck to us, thick and fast, even when recovered.   They joined up the dots after I moved my mother to where I live, in Fife, Scotland, in the 1990′s, so that she could spend her last few years under my watchful eye.  Her 3 weekly depixol injection gave the game away.

In Scotland the new mental health strategy talks about “common mental health problems”, to differentiate from “severe and enduring mental illness (SEMI)”, folk like me and mine who experience psychosis or altered mind states.  We’ve been segregated into the cul-de-sac of SEMI where if you want to recover you have to do it on your own.  Some of us got off all the psych drugs by taking charge of our own mental health and defying the diagnoses.  Others of us stayed in the system and lived with the resulting physical health issues and limitations due to drug side effects and iatrogenesis.  Walking with a stick.  Tardive dyskenisia.  Sleep problems.  Anxiety.  Restlessness.  Etc.

I had to resist the psychiatric system, its labelling and drugging.  It’s always been a matter of principle.  I cannot accept what was done to my family in the name of psychiatry.  From the 1950′s onwards and the introduction of chlorpromazine, the heyday of ECT and the demise of the asylums, my family have been in and out of the system in every decade.  In 1978 the patients were lining up for ECT and I managed to avoid it.  By 1984 and my next psychiatric inpatient stay there seemed to be far less of it going on.  Then in 2002, my third personal engagement, the mental health act was used to detain me and force me onto risperidone.  Which led to psych drug cocktails and “lifelong mental illness” prognosis because they’d put me on lithium and given me a schizoaffective disorder label.  I’d resisted the bipolar one.

When I speak now to psychiatrists about my complete recovery and getting off lithium they tend to say that either I’m in “remission” or that I shouldn’t have been on lithium in the first place.  The psychiatrist who gave me the schizo diagnosis says it’s now in “perpetuity”.  What does it all mean?  To me it means that they got it wrong.  And if they got it wrong with me then they could have got it/be getting it wrong with other folk too.  It stands to reason.  I recovered because I didn’t believe or accept the diagnosis or label.  It meant I had to resist psychiatric opinion and get well on my own.  I’d done it before so knew I could do it again.

I speak to other carers and they don’t all see things as I do, that there’s no such thing as mental illness, that psychiatric diagnoses/labels are subjective opinions, that it’s OK for their family member to resist the label and treatment.  I can understand why.  It’s far easier for a person in the system if they accept the psych drugs and the labels, even temporarily until they get back out into the community.  When they have a better chance of taking back control.  However the CTO (community treatment order) ties people in and the CPN (community psychiatric nurse) can be like a watchdog for the system.  Especially the SEMI CPNs who can be completely indoctrinated into the lifelong mental illness mantra and exist to keep people medicated.

The psych system really doesn’t like it when carers and mothers side with the family member.  Especially when the carer and mother has been psychiatrically labelled herself.  The troops gather, the pen gets sharpened, the psychiatric notes are full of condemnation.  “difficult and demanding mother”  “mother caused psychological harm (even when son was being locked in seclusion room of locked ward with no toilet or water to drink)”.   Ironically I raised the initial concerns to statutory agencies and then was targeted in an adult protection investigation report.  A psychiatrist and CPN were questioned about my character and behaviour.  Fortunately I was deemed to be reasonable in their eyes.  Sanity reigned in an otherwise mad situation.

But I’m still very unhappy at being badmouthed, bullied and scapegoated for a failed psychiatric system.  Treatment resistant means useless treatment.  Without capacity means the right to force treatment on an unwilling patient.  Independent advocacy is powerless when it comes to the might of psychiatry.  And the mental health act is like a chocolate teapot and gives even more power to the professionals in their subduing of the mentally ill under their “care”.  The forensic consultant psychiatrist (RMO – registered medical officer) in the locked ward said to me that patients without capacity don’t require advocacy.  Wrong.  On two accounts.  The patient in question did have capacity and he was entitled to advocacy, knew his rights.  Therefore on every occasion that the RMO tried to speak to my son without an advocate present, my son told him to go away and eventually in much stronger terms.

I think that psychiatric staff expect carers and mothers to side with them in the “care” of their family member.  As in “daddy knows best”.  The pressure to conform is immense.  Going against the experts with letters after their name is not an easy option.  Added to which the family member and patient could be isolating themselves because of emotional crisis or mental distress.  I remember back in 1999 when one of my sons was in a locked psychiatric ward and in great distress.  The female psychiatrist seemed a genuine person when she met with me.  However recently I found out that she had labelled my son with “hebephrenic schizophrenia”.  A millstone round his neck over the years although it didn’t stop him from working full-time and having a full life.  However it did mean that when he had to engage again with the system that the label kicked in, along with the psych drugs.  A double whammy.  I’m really not happy about it and wrote to her to complain.

“Sticks and stones may break your bones but words will never hurt you.”  Yes they can in the psychiatric system where words are everything.  And nowadays they don’t just remain in psychiatric notes.  I had an eye clinic appointment a few years after recovering from “mental illness” and psychiatric treatment, in around 2006.  The clinic nurse said to me “I see you’re schizophrenic” or words to that effect.  I said “WHAT?” and hotfooted it to my GP to ask what this was about.  She said that there wasn’t a box on the database for schizoaffective disorder.  I said that was a wrong diagnosis anyway as I had recovered completely, got off all the drugs, got back on with my life.  She recommended I see the psychiatrist who had written it.  Which I did and he said he’d write a letter to the GP.

However, in 2012, written in the notes of my youngest son who was dehumanisingly treated by the psychiatric system “family history of schizoaffective disorder”.  As in … me.  Words that stick like glue even when wrong.  I phoned the psychiatrist from the office of another psychiatrist who was witnessing my reading of the notes, asking why this was in my son’s notes and a justification for forcing treatment on him and the badmouthing of me.  He said he would sort it out.  Huh.  I knew then that they weren’t going to sort anything out and it would be up to me to rewrite the notes.  And so I am now speaking out at any and every opportunity, telling the real story, whether orally or written down, in blogs and Emails.  On the street, at meetings, in presentations.  There is always an opportunity, in my experience, to tell it how it is.  To set the record straight.  To take back the power and to have a voice.

there is no excuse for human rights abuse in psychiatric settings

It's now more than 18 months since my son was detained in the locked ward/ward 4/IPCU at Stratheden Hospital, Fife.  When he was forcibly treated and denied basic human rights as an inpatient, and I was forcibly treated and slandered in psychiatric notes, for standing with and advocating for my son.

It started in the early morning of Wednesday 1 February 2012 when my son was walking through the grounds of Stratheden.  Having tried for over a month to access crisis support in Fife, he couldn't sleep.  Although he had a CPN and was known to mental health services, neither he nor I could get any help for him.  We had nowhere to turn.

At 1.45am my son waved in the window to Lomond Ward staff who he knew from previous inpatient stays.  A female staff nurse phoned the police, saying that ex-patient ......... from ...... was walking about in the hospital grounds.  Naming my son and where he came from.  My son was put in handcuffs, taken to a police cell, stripped, had to put in a blue suicide suit, tested for drugs and alcohol (none) and taken back to Lomond Ward.  My son didn't resist and described it as "adventure".  He wasn't well.

[This same female staff nurse when on back shift used to smoke in a room at the back of Lomond, along with colleagues, when on duty.  Patients were well aware of this.  We whistleblowed on this nurse and another.  Not sure what the outcome was.  I also reported other staff who I saw smoking within the hospital grounds.]

Throughout 1st February an assessment on my son was not completed and he wasn't admitted as an inpatient.  My son had phoned me in the early hours of the morning to come and advocate for him at a meeting with the doctor, so I entered the ward at about 6.00am and was there the whole day until 5.00pm, apart from the 45mins at lunchtime.  Some of the time I had to wait outside in the car park.

I went into the ward at 6.00am and the door was locked behind me.  Shortly afterwards, a nursing assistant unlocked the door and let my son out into the darkness, with his suicidal thoughts.  I stayed in the ward to question the nurse in charge as to what was going on.  Meanwhile the police were sent for, again.  

I phoned down to my house, a policeman answered the phone, saying they were bringing my son back to Lomond.  It was now about 7.30am and the police upon entering the ward with my son, for a second time, told me to "keep an eye on him".  I tried my best to do so all that day.  

But the ward was in chaos.  Joinery work being done on the front door.  Cleaners washing carpets.  Nursing staff nowhere to be seen.  Distressed patients.  No consultant psychiatrists available, only junior doctors.  I was told later that it was a "changeover" day.  Still not sure what that means.

I left the ward at lunchtime to complain about the male nurse who had put his arm around me inappropriately earlier that morning, in front of my son.  This was the nurse who later that day, when I was out of the ward, assaulted my son and authorised the face-down restraint on him.  This was the nurse who was in the habit of speaking to female patients and nurses inappropriately.  

At 4pm my son was forcibly taken out of Lomond Ward in only his underpants and bare feet, escorted by 2 porters, into a minibus and up to Ward 4/IPCU.  He had a broken hand but I wasn't told about this until 2 days later.  I was told, in a phone call earlier, by the Mental Welfare Commission's Fife worker, that the Stratheden IPCU had no negative feedback.  Therefore I thought my son would be safe and well looked after.  I was wrong.

After my son was taken up to the IPCU, having been forcibly injected with Midazolam, he was locked in the seclusion room, given another injection of this benzo and left there for hours.  The  light switch was outside the room and flicked on and off at will by patients/nurses.  My son didn't know what time it was.  He was mentally distressed and locked in a room with no toilet or water to drink.  And left there.

I thought he was being well looked after.  The IPCU senior charge nurse said to me on the phone the next day that in her ward it was all about "relationships".  I believed her.  Until I saw my son 3 days later, with bruises and broken hand, and had to organise a doctor in the ward to check him out and for an X-ray to be arranged.

I had to insist on seeing my son that Saturday evening.  Five nurses had denied me access on the Saturday afternoon and said I couldn't photograph his injuries.  At that point my son was lying in the ward corridor covered in urine.  He told me later about this.  He didn't know I was visiting as the nurses hadn't told him.

My son was locked in the seclusion room 3 or 4 times through the night that first week, no observation sheets in response to an FOI (freedom of information) request that I made.  On the 4th time he needed the toilet, no-one came, he had to defecate on the floor and still they didn't come to his aid.  Patients shouted "slops out".

When the night nurses found out what he had done they were very unhappy and my son was treated even more harshly.  A face-down restraint by 3 nurses in the seclusion room while they forcibly cleaned him up.  Rubbing his nose in it.  A bank nurse stood by in corridor.  A young woman, recently qualified, she described the seclusion room as a "naughty step" and soon after got a nursing post in the south of England.

They cleaned up the seclusion room, put my son back in it and forcibly injected him with haloperidol, until he would take the drug voluntarily in pill form.  My son lost balance, fell over, the nurses said he was being silly.  I said it was side effects and to give him procyclidine.  

My son caught an infection, swollen glands, was put on antibiotics.  He also had a spate of verrucas on his feet, requiring months of treatment by the podiatrist, in the hospital and out in the community.

I only found out the full story about my son's treatment and human rights abuse in the IPCU when he was discharged from Stratheden Hospital in early April.  For months after he had flashbacks of the dehumanising treatment and talked it through with me.  

We had no other support apart from occasional meetings with the psychiatrist as my son reduced the haloperidol by small amounts every 3 weeks, coming completely off psychiatric drugs within 5 months.  The priority for me was to support my son in his recovery.  However I also started complaints against NHS Fife from 1 February 2012 onwards.

A few months later I started complaints against Fife Council and then against the NE Fife police who were involved in my son's treatment and adult protection investigation.  Throughout 2012 I was involved in these complaints processes .  This continued into 2013. 

I will speak more about what happened in the Fife IPCU and Lomond Ward, the complaints and the outcomes in future blog posts.