Sunday, 31 May 2015

avoiding ECT when hospitalised in 1978 after first postpartum psychosis; then Krypton Factor 1980

Hartwoodhill Hospital, North Lanarkshire
[first published 4 November 2012]

Remembering my first psychiatric hospitalisation, 13 weeks after the birth of my second son.  A painful experience, induced with chemicals to bring about the birth when the day staff were on duty.  Little pain relief, it was a cottage hospital, and like 'bite on a bullet' time.  I was living with in-laws and this brought its own pressures.  And ended up going voluntarily into Hartwoodhill Hospital, Lanarkshire, with my first puerperal (postpartum) psychosis.  It was September 1978, I was 25 with a birthday at the end of the month. 

The psychiatric acute ward environment wasn't what I'd expected and the regime required taking psychiatric drugs which I didn't want to do.  But I had no choice and these were forcibly given until taken orally with no resistance.  I'd been breastfeeding and had to be bound, to stop the milk coming.  This was very painful, more so mentally than physically, for I enjoyed feeding my son and didn't want to stop doing it.  But I had no choice for my baby was back home and I was hospitalised.  Also the drugs meant I couldn't have fed him myself anyway.

A song playing in the ward at that time was 'You abandoned me Love don't live here anymore" by Rose Royce.  It described perfectly how I felt, abandoned by God, separated from my babies, my sons 13wks and 2yrs old, the love of my life, being a mother.  


 
The first thing that happened on being admitted was that my clothes were locked away and pyjamas had to be worn, I think so as to deter escape, for the ward was an open one with doors only locked at night.  However patients did run away and we used to see them heading off in their night clothes down the drive, when sitting in the cafe at visiting time.  I thought the pyjama rule was very silly and was more about keeping us all under control.  I had known this anyway about the psychiatric system since a 17yr old.

Once I conformed to the drug taking there was an added pressure brought to bear on me, to consent to receiving ECT, electroconvulsive or shock treatment.  Nurses called me into their office and spoke about the benefits of ECT.  I'd seen patients queuing up to get the treatment so knew that it was the 'done' thing.  I also knew that I didn't want it, because my mother had got many courses of shock treatment in the 50's and 60's, against her will, and I thought it barbaric.  So for me being forewarned was being forearmed.

The nurses tried to get me to sign the ECT form, I remember this clearly, through the fog of Chlorpromazine, but I wouldn't do it.  And that evening, when my husband came in at visiting time, we made our escape, me in my pyjamas, out to the car and back home.  But the sudden withdrawal of psychiatric drugs caused problems physically and severe muscle spasms, my neck going back, and I had to return to the ward.  Very scary as I thought the ECT would be forced on to me like the drugs had been.  I was at their mercy.

By this time however I wasn't psychotic any more, and I was a voluntary patient, so the ECT couldn't be justifiably forced on me.  But the nurses did keep saying to me that if I'd taken the shock treatment I would have recovered quicker like the other patients.  I didn't believe them and thought this was bullying behaviour.  And anyway I didn't want to have my memories zapped, preferring to remember everything.  Any psychosis I've had has been a positive experience, it's the treatment that's been the negative and traumatic thing.

I was only a few weeks in Hartwoodhill when I was eventually allowed to leave.  This was achieved by playing the game of appearing to accept what the psychiatrist saidWaiting hours to meet with him, and it was always male doctors back then.  Trying not to show the inevitable restlessness of being on the anti-psychotic for it might have been held against me as a sign of mental illness.  We knew the rules of the game, the patients and peers, and that we had to look as if we were compliant even if inside we were fiercely rebelling. We weren't going to let the b****** grind us down.

Getting home was a relief, to see my boys again, and so began the challenge of trying to withstand the depressive effects of the Chlorpromazine.  It was a long winter and I remember the water freezing up in the pipes on the farm.  Brief moments of joy, like sledging in the snow, as gradually I recovered from the psychiatric treatment.  Within the year I'd tapered the drugs and came off them, recovering completely.  And the whole experience had made me a stronger and more confident person, like a transformation.

Krypton Factor assault course heat 1980
We had a small flock of sheep, I did the lambing, sold them at Lanark Market, transported them there in my mini vanIn 1980 I got on to the Krypton Factor, described as a 'shepherdess', from 10,000 applying, interviews at STV Glasgow, to the final 32 on screen.  It was an enjoyable experience although the assault course and death slide confirmed my fear of heights.  

At the same time I started to do community development work, focusing on children's activities, and this was mostly voluntary.  Eg mother & toddler groups, playgroups, play courses, activities that tied in with my own sons' requirements.  As they got older, moving on to playschemes and after-school clubs, driving the community minibus, school involvement and church work.

I see psychotic episodes as opportunities to become more fully human and to expand potential.  The psychiatric treatment for me was always the challenging element of the experience.  Trying to retain some control and resisting what I could when in a psychiatric setting that was oppressive.  Governed by people who didn't know me when well and were more about treating the symptoms and behaviour rather than the person inside.  It was a battle for me to retain a sense of self while others tried to take it away.  I am glad to have survived the battle.
 
me in 1980 with oldest son, Isle of Gigha
Krypton Factor helicopter 1980 at assault course heats Yorkshire moors
some of our sheep, photo from 1976


memories of peer support in the psychiatric system circa 1984

[first published 3 November 2012]

Looking back to my psychiatric hospitalisations in 1978, 1984 and 2002 it was peer support that got me through the traumatic experience of forced treatment and disempowerment.  And continued on after discharge, helping me on the recovery journey and back to real life.  The experiences of fellow travellers, mostly women, who knew what it felt like to be incarcerated and to be limited by the psychiatric drugs or mental illness label.
Hartwoodhill Hospital, North Lanarkshire

I remember in particular the 1984 episode, only one day out of the maternity hospital, after the birth of my third son, and being in another place mentally.  It wasn't a negative experience for me, on the contrary, but for others it was alarming as I wasn't myself.  The fact that I'd had a previous puerperal psychosis would have alerted the doctors and no doubt they were looking out for it.  So, in very quick time, I found myself a voluntary mental patient in Hartwoodhill Hospital, Lanarkshire. Separated from my baby who I'd been breastfeeding. 

I was in an acute psychiatric ward, female sleeping accommodation and mixed gender dining/living spaces.  My clothes locked away in a cupboard and having to wear pyjamas, a few layers of them, for it was late November, winter time, 'Do they know it's Christmas?' by Band Aid on the radio.  Strangers wanting to give me drugs, which I refused then being grabbed and jagged with them. Then when they thought me compliant gave me liquid Largactyl, found out later it was Chlorpromazine, and finally pills when I could be trusted.





In the ward was a larger than life female patient, a Christian like me, who carried her bible around with her, and who became my peer supporter.  She'd been an inpatient in various psychiatric wards, sometimes for years, as a result of childhood trauma, and I heard her story later on in our friendship.  I attached myself to Mary (not her real name) and went around and about with her, at mealtimes and in the female areaHer strength and experience gave me confidence and protection.  

Because Christmas was coming I managed to get discharged after only a 3wk stay, glad to get out of the mental hospital.  Back to my baby and my two older sons, drugged up with Chlorpromazine and like a zombie, as I used to call it.  Facing the challenge of recovering from the psychiatric treatment and getting off the drugs.  Which I managed to do within the year, with the support of family and friends.  At the same time I kept up with Mary who was also out of hospital and back home.

Mary lived on her own in a small flat and I became her friend out in the real world, an opportunity for me to return the peer support, by helping in different ways.  It was still a mutual thing, of giving and receiving, for this is the beauty of peer support.  As experiences are shared, of mental health struggles and withstanding them, even recovering from them, then it is a win-win situation for both people in the peer support relationship.  I've seen nothing else like it in the real world.

Postscript

I was forcibly internally examined one week after my youngest son was born, 25Nov84, when a voluntary inpatient of Hartwoodhill psychiatric hospital, held down by 3 nurses while a black doctor (possibly locum) put gloves on and invaded my body.  My husband witnessed this.  I resisted because the birth of my son had been normal, no complications, therefore no need for an examination by a doctor in a psychiatric ward who wasn't a specialist in gynaecology, and may have damaged me.  Then they forcibly injected me with Chlorpromazine.

A few months after discharge my husband got a vasectomy, I signed the form when on Chlorpromazine, aged 32.  No more babies.  My husband didn't want to risk it again. 



Saturday, 30 May 2015

two FOI request responses @scotgov about Geoff Huggins' role as a dementia ambassador (it's still a mystery)


 
Here is the blog post from 30 March 2015, setting the scene: FOI request to Paul Gray CEO of NHS Scotland about Geoff Huggins' role as a dementia ambassador [updated]

I got a response from Colin Brown, Deputy Director, Office of the Director-General Health & Social Care and Chief Executive NHSScotland, on 28 April 2015.  To which I replied, asking for more information.  

Yesterday, 29 May 2015, I got a second response from Richard Dimelow, Policy Manager, Healthcare Quality & Strategy Directorate, Scottish Government.

Here is my reply today to Richard Dimelow, copied in to various others in Scottish Government, including civil servants and MSPs:

Strapline: Re: FoI/15/00528 - Review - Geoff Huggins dementia ambassador role - qualifications, job description, person spec

"Dear Richard

Thank you for making a second response to my FOI request, regarding the reasoning behind civil servant Geoff Huggins' actions as a global dementia ambassador for Scotland.

Although you agree that the initial response by Colin Brown did not "fully answer" all by questions, and that it did not "give any reason" for not doing so, you also are not able to answer my questions in full.  Stating that "under section 17(1) of FOISA the Scottish Government does not have the information" which I have requested. 

However you have given me some more information, in respect of "Mr Huggins' objectives for 2014-15" and a "generic job description and person specification" for a Director post.  For which I am grateful.

I've had a look through the information provided and will study again in detail, putting the FOI responses in a blog post for others to view, if they so wish.  What strikes me about the information you impart about the expected behaviour and practice of a person in a senior civil servant role such as Mr Huggins are the phrases:

  • support new ways of working
  • to be a role model
  • leadership - delivering results
  • forming effective relationships with a range of stakeholders
  • operating ... with integrity, honesty, objectivity and impartiality
  • inclusive and empowering approach
  • leads a way through complex issues and conflicting perspectives
  • works collaboratively in the wider system
  • underpin sound decisions
  • empower, value, recognise, inspire and motivate people

In my dealings with Mr Huggins I have not been aware of these attributes, skills, behaviours or outcomes in the way that he works with the "experts by experience".  Obviously I don't know Mr Huggins as well as other people do and he may demonstrate these qualities with his Scottish Government equals and seniors, and with the government ministers for whom he writes documents and letters.


Furthermore I did not see anything in the person spec about bullying and undermining an unwaged carer, mother, writer, activist and campaigner in mental health matters.  And getting away with it.  [see blog post link below]

Regards, Chrys"


link to Alzheimer Scotland webpage

--------------------------------

Blog post 31 October 2014: Email from Geoff Huggins on 24 June 2014 that caused me pain, wounding me with its underlying blaming and shaming

Comment from another mother on this post:

"Chrys, I have just read carefully the email above. It seems to me that Geoff Huggins tries hard to intimidate you: he speaks about himself and colleagues as 'PEOPLE'. 'People', 'we and others' - a huge crowd indeed against one brave mother.

I can't make sense of the email:
How can it be that speaking about your experience and that of your family 'excludes or devalues the experience of others'?
How can it be that it 'prevents other voices from being heard'?
How can it be that people are frightened to hear about your experience and that of your family ( GF admits that you focus on your own experience - how can it prevent other people from telling their stories?)
What kind of special treatment they used to give you in the past 'to the detriment of other service users and carers'?

I don't know if the email is 'direct and robust' but it is a good example of bullying, that's for sure.
"



Friday, 29 May 2015

#RightsForLife: a corporate affair; who will dare to speak out about psychiatric abuse?

An Email just sent to the Rights for Life conference leaders:


Rights for Life programme

and others who are speaking plus the funders:

Strapline: Re: Rights for Life (2-3 June 2015): a corporate affair; who will dare to speak out about psychiatric abuse? 

"Dear Rights for Life Leaders, Speakers and Civil Servants

I am wondering if any of you will be speaking out about the human rights of psychiatric patients and their carers.  In particular those of us who have been subject to psychiatric abuse?  Forced drug treatment and a denial of our basic human rights. 

The right to prohibiton of torture: No one shall be subjected to torture or to inhuman or degrading  treatment or punishment.  The right to freedom of expression.  The right to an effective remedy.  The right to prohibition of discrimination.

http://www.echr.coe.int/Documents/Convention_ENG.pdf

Or will the #rightsforlife event be another giant public relations exercise with the aim of telling the world that all is well in Scotland's mental health world.  A rhetorical question.  Because I really don't think that any of you will dare to risk your positions and gongs for the sake of justice and truth in psychiatric settings.

I haven't seen any evidence of it so far in over 7 years of trying to be "meaningfully involved" in mental health matters.

Yours sincerely"
------------------------

Storifying when first hearing of this event:

24 March 2015: last night grumblings in response to Email from IIMHL about SRN/Penumbra and "claiming rights"


18 March 2015: a wee rant on twitter after hearing about the SRN/SeeMe "Rights for Life" extravaganza (grr....)

------------------------

Thursday 21 May 2015 on the way into a meeting with Prof Alan Miller: snapshots at the Scottish Human Rights Commission offices in Edinburgh



strong arm tactics disguised as "respect"

At an event recently I was approached where I sat at a table with others, by a person in charge.  She spoke down to me, saying she had something to say and did I want to come out of the room.  I said no that she could say it there.  Where others were around, listening and watching.

I felt intimidated.  As if I was going to get a row for something.  It reminded me of school and being singled out for "special treatment".  Getting sent of the room for misbehaving.  Even worse, having to hold my hand out for the belt.  Corporal punishment.  Which I remember being subject to in Primary 3 at the Caley School in Perth. 

The woman then said something about my tweets.  Speaking down to me.  It was bullying.  There was no doubt about it.  The last time I experienced something similar was in Stratheden Hospital on 4 February 2012 when 5 psychiatric nurses surrounded me where I sat in the IPCU dining room.  Four of them standing, one sitting.  It is etched in my mind.

Well the woman at the event mentioned the hashtag which she had created.  As if she had control of it.  I remember laughing at her.  Incredulous.  She sat down.  I asked her what age she was and other stuff.  By this time I was getting into my stride.  But she had rattled me.  I hadn't expected to be confronted in this way at an event which I had attended voluntarily.

The woman said that she respected me.  I thought that she didn't know what the word "respect" meant.  It definitely doesn't mean using strong arm tactics on an unwaged carer.  That is out of order.  It demonstrates an ineffective management style and bullying behaviour which is very detrimental in a workplace. [see blog post: culture, management and leadership; the issue of bullying and how to tackle it]

She put her hand on my arm.  I told her to remove it.  I really didn't appreciate her invading my space to that extent.  Even the psychiatric nurses knew that was out of order with a carer.  I asked the woman if she had considered other posts.  It was my opinion by that point that she wasn't up to the job.  Not if you have to resort to bullying so as to manage a situation.

Eventually I moved off to have a sandwich because it was lunchtime and I didn't want to miss the food.  I left her sitting there at the table.  She had lost control of the situation.  Meanwhile I still had the afternoon to hear what others were saying and to speak out myself, in tweets and at the table discussions.  Eventually getting the microphone at the end of the day to give feedback from our table. 

I really don't appreciate strong arm tactics disguised as "respect".  It is nothing less than bullying behaviour.  I recommend that this woman undergoes extensive training in how to work with "difficult" (the word used by a senior social worker to me at the event) people and how to behave in challenging situations.  How to de-escalate a situation rather than making things worse.





Tuesday, 26 May 2015

‘If I Had A Hammer’ Peter Paul and Mary - justice, freedom, love

There is much talk of "tools" in Scotland's healthcare improvement and it made me think of how I can use a hammer in an amateurish way to knock in some nails, take others out, but it doesn't make me a joiner or carpenter or in any way an expert with this tool.





"(Pete Seeger/Lee Hays)

If I had a hammer I'd hammer in the morning
I'd hammer in the evening all over this land
I'd hammer out danger, I'd hammer out warning
I'd hammer out love between my brothers and my sisters
All over this land

If I had a bell I'd ring it in the morning
I'd ring it in the evening all over this land
I'd ring our danger, I'd ring out warning
I'd ring out love between my brothers and my sisters
All over this land

If I had a song I'd sing it in the morning
I'd sing it in the evening all over this land
I'd sing out danger, I'd sing out warning
I'd sing out love between my sisters and my brothers
All over this land

When I've got a hammer, and I've got a bell
And I've got a song to sing all over this land
It's a hammer of justice, it's a bell of freedom
It's a song about love between my brothers and my sisters
All over this land

(as sung by Peter Paul & Mary)"  from My Songbook

If I had a hammer on Wikipedia


Monday, 25 May 2015

NES Training Director Psychology Services response re EbE involvement: nothing to report; I'm looking for ACTION

Email response received from Judy Thomson, Director of Training for Psychology Services NHS Education for Scotland, on 21 May 2015

[Email reminder sent 18 May: 'Letter to NES Director of Training for Psychology Services: what's happening re EbE involvement in DClinPsy training Scotland?']

"Dear Chrys, 

Some helpful initial discussions about this have been held by the EBE and governance groups linked to the programmes. I aim to have a plan for the review agreed over the Summer to take forward in the Autumn. I think this is likely to involve seeing what we can learn from others across the UK and internationally as well as considering how to build on the good work that is already being done locally.

I want the process to enable a range of views, opinions and suggestions to be gathered but there are no details about this yet. Thanks for your continuing interest.

Best wishes

Judy
"



NES website link

And my letter in response sent early morning 22 May 2015:

Strapline: Action - Results - Input of money and expertise - get the EbE onboard, properly, meaningfully 

"Dear Judy 

I do hope that you and NES are going to ACT and not just write a report.  As in, do something, put resources in, get results, to demonstrate the meaningful involvement of experts by experience.  Enable EbE to lead and set agendas.  To encourage all voices at the table.  To do this will require an input of money and expertise.  With something to show for it at the end of the process.  Not just gathering views for the sake of it.

I speak from the lived experience of being a community development worker since 1980, having set up many projects, from scratch, at the grassroots.  Recruiting, training and supporting volunteers.  Setting up systems and empowering people, myself included.  Mutual benefits.  Lifelong learning.

Here are a few examples of what I used to do in various communities of interest: 

  • raising funds to set up a toy library in Lanark, for playgroups in the local area, and travelling around these groups co-ordinating activities, delivering training with SPPA 1980-83, mostly voluntarily;
  • setting up playschemes, youth groups and after-school clubs in Rigside, Lanark, 1980-90, including raising funds for a community minibus of which I was one of the drivers.  At the same time bringing up my 3 boys.  The community development was for my sons' benefit as well as other families;
  • taking on the position of PT warden at Age Concern, Cupar, 1991, only 10-15 members attending, building up the work, cooking home made meals, involving elderly members in the kitchen, bus holiday to Morecambe, bringing in hairdresser, library etc, by the time I left, 18 months later, there were 45-50 having lunch twice a week and they employed two wardens.  My sons would come in and help.  At the same time I worked PT at the YMCA in Cupar, set up summer playscheme, after-school club;
  • volunteer manager in Perth, paid FT post, again recruiting, training etc, based in The Gateway, working with carers at the PRTC, driving a minibus bringing elderly in to a respite centre.  Advocacy work with a range of people including a woman with Friedreich's Ataxia, a man with Down's Syndrome and early onset dementia, a young man in a forensic ward at Murray Royal who eventually became a volunteer in The Gateway;
    workshop I organised at Levenmouth campus
  • setting up a student mentoring scheme at Fife/Adam Smith College 2006-8, from scratch, training, supporting supervising one-to-one and group mentoring.  While also finding work placements for students with disabilities and barriers to employment.  Students got jobs out of this eg a placement with Aberlour Childcare Trust, a residential home, HNC social care student, relief work then permanent post; a welding placement for mature man who got offered a job;

This is the sort of thing I'm looking for when I use the word ACTION.  Since getting "meaningfully involved" in Scotland's mental health world in 2008 there has been a lot of talk and very little action.  Scottish Government documents that are all rhetoric and not much substance.  Community work was all about the doing of it, having something to show for it, having the end goal in sight during the process.  Working towards it.  

Civil servants are throwing money at the likes of SRN and See Me with very little to show for it, in terms of real improvements.  People attend their events for a free lunch then often leave right after.  I saw this at the big Murrayfield SRN event in 2013, a mass exodus after lunch.  Where Geoff Huggins had a spot along with Nigel Henderson, before lunch.  The real voices of experience were in the audience.  As usual.  The people who had something important to say were relegated to a few minutes at the microphone or in a workshop where their voices couldn't be heard.

You finish by saying to me "Thanks for your continuing interest".  Well that's not good enough.  I deserve a better response than this.  Which, to be honest, is patronising and insulting.  When you consider that the HEAT target for psychological therapies is a nonsense and that people cannot access talking therapies when they are in mental distress.  

I will put your Email and my response in a blog post.  So that others can read them, if they so wish.  I do wonder if NES and other HIS quango organisations are only going through the motions.  While it's us on the ground, the real experts, who are doing the work at great cost.


Yours frustratedly,

Chrys"


plans for £4.4million new-build IPCU Stratheden Hospital to be completed Spring 2016

----------------------

Further reading: "NHS Fife finds it difficult to engage with you" (but I will continue to actively engage with them) 

"I am encouraged to hear that NHS Fife is committed to improving mental health services and to see the quality of the new build IPCU, at a cost of £4.4million from Scottish Government, which has been planned in great detail with a range of resources to provide therapeutic care to patients who require the service.  

I am very proud of my son for exposing the "unreasonable treatment" and the use of the locked seclusion room to manage patients in the old IPCU that was declared "unfit for purpose".  It has cost us both to speak out about the psychiatric abuse which he was subject to.  And it is still costing us.  The new IPCU has my son's name on it.

----------------------
 
June 2011 PS Fife News Byte which I wrote and edited


wrong tools for the job (from Jan13)

[first published 7 January 2013]

I've often thought of psychiatry as being about tackling a skelf (splinter of wood) in the finger with a sledgehammer.  The wrong tools for the job. 

Mental ill health, stress and breakdown, for me was to do with mind and body, not brain.  So giving me psychiatric drugs that affected my brain chemicals didn't deal with the root cause which was the disruption to my wellbeing, peace of mind and feeling at home in my body.  In fact it added to my stress and caused me depression, lack of confidence and alienation.  To self and others.

I can only speak for myself in this.  Maybe others find the psychiatric drug regime helpful, the controlling measures of benefit, the abdication of personal responsibility a useful procedure.  Although I wanted an escape from pressure and stress, I didn't want another person taking charge, in loco parentis.  And this seems to be the only deal when you enter the gates of psychiatric institutions, the land of make believe.

Of course the biomedical model of mental illness is the reason for it.  They think it's a brain thing and act accordingly.  And so we have brain altering chemicals, shock treatment to the brain and neurosurgery for mental disorder (NMD) or brain surgery for mental illness.  Wrong tools for the job.

I never believed psychiatry and the brain thing, so managed, eventually, to take charge of my own mental health and recover.  Despite the psychiatric labels that still linger in my medical notes.  Indelibly written, subjectively given.  A work of fiction to my mind.  Lacking substance or power.

It helps if you're non-conformist and free thinking, although you won't be popular.  At least not openly.  It means walking your own path, doing your own thing and being prepared to stand firm when necessary.  The sledgehammer can do a bit of damage in its quest to remove the skelf.  Which often works its way out, either by itself or with help from a friend.

I'm looking forward to a new paradigm where mind and body are the focus, when a person is known to be the expert of their own experience and the right tools for the job are in the hands of a caring profession.


Saturday, 23 May 2015

recovery, healing, forgiveness; remembering my mother; #RightsForLife

my mother (South Inch Perth c1980's)
Recovery from psychosis, psychiatric treatment and "mental illness" has always been a reality for me, regardless of what the system said in the way of diagnoses, labels and lifelong prognoses.  I've been fortunate.  To benefit from what my mother went through.  Seeing at first hand her resistance to the treatment and her dignity in living with a label of schizophrenia that she didn't deserve.

She would have times in her life when the pain of living became too intense and her distress resulted in an altered mind state which psychiatry calls psychosis.  It led to a few months at a time locked away, in Murray Royal Hospital, Perth, being subject to forced ECT and other abuses.  As a child and young person I didn't know what she had to put up with in the name of psychiatry, from the 1950's onwards.  She didn't speak of it when she was well and just got on with her life as usual.  Taking care of me and my two younger sisters.  Being a good wife and mother.

I can't speak too highly enough of my mother.  The fact that she was subject to a Depixol injection for many of her later years up to her death at age 68 in 1998 makes me sad and causes me pain.  Yet she didn't complain and accepted the constraints that were put upon her by the system.   But she deserved far better treatment than what she got.  It wasn't good enough for my mother.

Hartwoodhill Hospital, North Lanarkshire
And it was after I became a mother myself that I experienced my first psychosis, following the painful, chemically-induced birth of my second son in 1978, and ended up, voluntarily, in Hartwoodhill psychiatric ward, being forcibly injected with Chlorpromazine until swallowing the 4x100mgs orally.  Coerced, separated from my baby and young son.  I was 26yrs old and finally understood something of what my mother had been through although I was able to avoid the ECT despite being put under pressure to have it.  Escaping from the ward in my pyjamas, aided and abetted by my husband.  Having to come back in again because of drug withdrawal side effects. 

I remember my mother came to stay after my discharge from the psychiatric ward in 1978, to give me support.  It was always in my mind to get off the drugs and to recover.  That was a given.  A year and no more.  In the Spring of 1979 I began to see light at the end of the tunnel and was able to get off the, by that time, 100mgs daily Chlorpromazine, within the year.  Told the psychiatrist who wasn't pleased but I wasn't bothered because I had recovered my strength and positive attitude.  They had no power over me when I was well.

The same thing happened following a painful, induced childbirth with my 3rd son in 1984.  A day or so after being discharged from the maternity hospital I was taken in an ambulance to Hartwoodhill and injected with Chlorpromazine, given an internal examination by a doctor, held down by 3 nurses, my husband present.  I resisted all the way.  Again it took a year to get off the drugs and recover.  No more babies for me, said my husband, because I would have wanted a fourth child.

Here are extracts from an Email I sent this morning to a fellow campaigner in mental health matters, remembering my mother:

Strapline: .... my mother - the mental illness mantra - healing and forgiveness - anger - Rights for Life

"I was thinking how my mother did not fight physical ill health.  Rather she accepted it and died early at 68.  Death is not everything and she believed this, as I do.  And she did not have, or did not seem to have, much pain before dying.  Wasn't on many painkillers.  Maybe it was easier to accept the lung cancer and die gracefully.  Which she did and for which I'm thankful.  Although I miss her.  She was one in a million."

"My mother wasn't overweight with the Depixol but it did affect her walking from her 50's and she used a stick that had a seat on it so she could rest, it was fashionably red, and she always wore comfortable Echo shoes (bought a new pair every year, different colours, I gave boxes of them away to charity shops after her death).  But maybe the smoking also had an effect on this.  Hardening of the arteries.  Not sure.  She had a tremor but it didn't affect her drinking tea/coffee.  I do know other older women on antipsychotics who use a straw to drink liquids.  This has to be a witness to the medical profession as to the disabling effects of psychotropic drugs."

"However as long as the mental illness mantra is chanted then the disabling effects of drugs will be seen as a necessary evil.  I think.  I didn't believe it and got off the drugs, escaped with a broken fibula and have the scars to show for it.  Plus the cramp, the occasional pain, but on the whole I am very fortunate and I know this.  Because of what my mother went through.  Her treatment benefitted me.  In terms of resisting the drugs, the labels and the scapegoating.  It means I have been able to help family members by leading the way, to recovery.  Setting an example.  (I may be glamorising my role and it's more about my pigheaded stubborness, bloodymindedness and non-conformist attitude)"

"...... And that's where healing and forgiveness come in.

I will be of no use to anyone else if I do let healing occur in my own psyche, letting go of the negative stuff so as to have a positive affect.  That's what talking therapies should be doing I contend.  Helping people to remember the past while not letting it bring us down.  A balancing act.  Not mindfulness which I think wants us to forget the past, forget the future, and only concentrate on the here and now.  Which may be OK in terms of short term survival but in the longer term won't help us deal with the unfairness and injustice which has to be faced.
"

"It's where the anger comes in.  ...... and I spoke of anger.  I have it.  He has it.  You have it.  Others have it.  Inside.  We control it.  It drives us to work for justice and fairness, in human rights and in mental health matters.

And finally forgiveness.  I have to practice it on a daily basis so as to not let the anger consume me.  Eight of us in my family (through 3 generations) who have experienced mental distress, externalised it, and then had to engage with psychiatry, be subject to forced treatment, against our will, our agency taken away.  Psychiatric abuse.  Causing unnecessary damage.  I am so glad to have my Christian faith which helps me to cope with the injustice and the unfairness.  Without it I don't know how I would have survived psychiatry.  Or the pain of life. 

Yet I am very fortunate and I know this.  Others have had it far worse.  Abused in society, in their families, as children, their agency taken away.  In war zones.  In poverty.  Suffering on a daily basis.  For many people the psychiatric treatment and patriarchy are welcome interventions.  A salvation of sorts.  And these are the people who will be speaking out on the panel, and stage, at the Rights for Life event.  .....  I understand this but I don't approve.  Because it's not balanced.  The dissenting voices are in the gallery or out in the cold.  Unwelcome at the feast. .....
"


Friday, 22 May 2015

a culture of kindness - what will it take?

I happened to come upon a facebook post just now about an event in Lochgelly last Tuesday run by NHS Fife which I hadn't heard of, called 'Culture of Kindness':




Reading the post from a facebook "friend" caused me pain.  Because my family have not experienced good practice or a culture of compassionate care in Stratheden Hospital, Fife.  In fact members of my family have been subject to psychiatric abuse in this institution since 1995.  Twenty years.

More recently I raised concerns about the issues in Lomond Ward in 2010, the risks to female patients, the inappropriate behaviour of male nurses.  Then in 2012 I had to raise complaints about the IPCU, a building declared unfit for purpose by the Mental Welfare Commission for Scotland.

Eventually my complaint against the Fife health board was upheld in September 2014, in respect of the "unreasonable treatment" of my son, amounting to a denial of his basic human rights.  Psychiatric abuse.

What will it take to bring about a culture of kindness in NHS Fife psychiatric settings?  In my opinion it will require effective management of resources and close monitoring of staff practices, keeping a close eye on patient safety and human rights.  Positive action. 


Thursday, 21 May 2015

snapshots at the Scottish Human Rights Commission offices in Edinburgh

Taken today outside the offices of the SHRC, before going in to a meeting with the Chair, Prof Alan Miller:


The SHRC shares offices with the Scottish Public Services Ombudsman (SPSO) in Melville Street, Edinburgh.

SPSO and SHRC offices

Approaching the building I noticed St Mary's Cathedral in the distance where my youngest sister was first female head chorister when a boarder at St Mary's Music School.

on Melville Street


Tuesday, 19 May 2015

the ladder of citizen participation: Sherry R Arnstein - from non-participation to tokenism to citizen power

From A Ladder of Citizen Participation - Sherry R Arnstein  

[thanks to Peter Bates for sending the link


Eight rungs on the ladder of citizen participation
Eight rungs on the ladder of citizen participation

The bottom rungs of the ladder are (1) Manipulation and (2) Therapy. These two rungs describe levels of "non-participation" that have been contrived by some to substitute for genuine participation. Their real objective is not to enable people to participate in planning or conducting programs, but to enable powerholders to "educate" or "cure" the participants. 

Rungs 3 and 4 progress to levels of "tokenism" that allow the have-nots to hear and to have a voice: (3) Informing and (4) Consultation. When they are proffered by powerholders as the total extent of participation, citizens may indeed hear and be heard. But under these conditions they lack the power to insure that their views will be heeded by the powerful. When participation is restricted to these levels, there is no follow-through, no "muscle," hence no assurance of changing the status quo. Rung (5) Placation is simply a higher level tokenism because the ground rules allow have-nots to advise, but retain for the powerholders the continued right to decide.

Further up the ladder are levels of citizen power with increasing degrees of decision-making clout. Citizens can enter into a (6) Partnership that enables them to negotiate and engage in trade-offs with traditional power holders. At the topmost rungs, (7) Delegated Power and (8) Citizen Control, have-not citizens obtain the majority of decision-making seats, or full managerial power.

Obviously, the eight-rung ladder is a simplification, but it helps to illustrate the
point that so many have missed - that there are significant gradations of citizen participation. Knowing these gradations makes it possible to cut through the hyperbole to understand the increasingly strident demands for participation from the have-nots as well as the gamut of confusing responses from the powerholders.

Though the typology uses examples from federal programs such as urban renewal, anti-poverty, and Model Cities, it could just as easily be illustrated in the church, currently facing demands for power from priests and laymen who seek to change its mission; colleges and universities which in some cases have become literal battlegrounds over the issue of student power; or public schools, city halls, and police departments (or big business which is likely to be next on the expanding list of targets). 

The underlying issues are essentially the same - "nobodies" in several arenas are trying to become "somebodies" with enough power to make the target institutions responsive to their views, aspirations, and needs.

---------------------------

And here's an approximation of Scotland's ladder of mental health involvement from the perspective of a disillusioned carer and campaigner:


A Relationship with Resilience - and the benefits of hardiness, resistance and non-conformity

'A Relationship with Resilience' by Grant King on TaysideHealth blog, 19 May 2015, and my comment on the post: 

"Speaking as a resilient grandmother and a woman who identifies as a psychiatric survivor I disagree with this statement:

“What differentiates resilience for me is the positive adaption following adversity whereas hardiness seems to focus on the concept of adversity survival.”

I believe that resilience and hardiness go hand in hand, are equally important for any person who finds themselves in a state of emotional crisis or mental distress and having to access psychiatric treatment. Where they may be subject to forced medication and be judged as being “without capacity”. I speak from experience. And from the position of caring for many other family members in the same situation. Over 40 years of caring.

I would add resistance and non-conformity to the mix in terms of retaining and regaining positive mental health. It has worked for me and for many others. Resisting negative prognoses and self blame, not complying with rules and behaviours which are detrimental to human beings or disregard their rights. Standing up for human rights and standing with the oppressed, whatever the situation. Regardless of the cost. That is a demonstration of strength and resilience, in my opinion.

As a child I was resilient and hardy, recovering after arm and leg breaks when out playing rigorously and adventurously in the school holidays, aged 6 and 7 respectively. Like my granddaughter I ran before I could walk. Nothing much has changed now I’m 62 years young. Being a survivor means I can bounce back, pick myself up again after adversity and ill-health, physical or mental. It also means I can empathise with others who are struggling and get alongside side them, mutually, until they are back on their feet again. Doing it under their own steam.

As a community education and development worker since 1980 it was always about empowerment and lifelong learning. Level playing fields and making straight paths. Being tough, resilient and hardy does not automatically translate into a lack of compassion and a disregard for the pain of “others”. I wanted to give voice to my thoughts and hope they are of use."

walking up a close in Kirkcaldy, Fife


Monday, 18 May 2015

Letter to NES Director of Training for Psychology Services: what's happening re EbE involvement in DClinPsy training Scotland?


NES fast facts
 
Letter just sent by Email, 18 May 2015, to Judy Thomson, Director of Training for Psychology Services, NHS Education for Scotland (NES), following a letter I first sent in February 2015 (link below):

Strapline: Re: NES "independent review of EBE involvement in DClinPsy training in Scotland" - what's happening? I haven't heard, it's been 3 months ...

"Dear Judy

I am writing to find out what's happening regarding your "independent review of EBE involvement in DClinPsy training in Scotland"?  It's been 3 months and I've heard nothing.  Have you got results yet (I'm not just meaning a written report)?

To remind you.  I spent more than 3 years trying to be meaningfully involved at the DClinPsy groups for people who are Experts by Experience.  It felt a bit like going round in circles and getting nowhere.  I have to be honest.  

Have you therefore taken any of my suggestions on board?  As in Email attached. 

  • money/resources in (£444million underspend by Scottish Government at the end of 2014 report)
  • creation of development/co-ordinator posts, employing psychiatric survivors, EbE (a decent salary for the user/carer/EBE person, not peanuts)
  • moving quickly so as to keep the momentum going (two people in post within 6 months)
  • A place at the table for a range of voices - questioning voices, survivors of psychiatry, service users, carers, family members, sceptics, fully signed up conscripts etc
  • meaningful involvement which can be measured in outcomes, not just talk with no action (I've had a lot of that when engaging with civil/uncivil servants at Scottish Government who write documents that are not implemented)

Unfortunately, as you will be aware, the HEAT target for access times re psychological therapies is not being met across the health boards in Scotland.  In Fife it is at 58% and the target is 90%.  Fail. 

[But some good news in Fife is that we have a Music Therapist in Stratheden Hospital and a new build IPCU, costing £4.4million, underway, which has my son's name on it, metaphorically speaking since he whistleblowed about the locked seclusion room and psychiatric abuse.]

I look forward to hearing from you.  This Email will go into a blog post, for the sake of transparency and sharing of information.

Regards, Chrys"




-------------------------

"I was a founding member of both the CUSP and APEX groups": DClinPsy dialogue with NES Director - blog post with original letter I sent on 20 February 2015 to Judy Thomson and responses