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

[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 said.  Waiting 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

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 van.  In 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

Krypton Factor helicopter 1980 at assault course heats Yorkshire moors

some of our sheep, photo from 1976

some of our sheep, photo from 1976

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‘Mental health patients treated like ‘animals in a zoo’ at Ablett Unit in North Wales, report finds’ ITV News 28 May 2015

A sign for unit at Ysbyty Glan Clwyd hospital in Rhyl. Credit: PA

A sign for unit at Ysbyty Glan Clwyd hospital in Rhyl. Credit: PA

ITV News: ‘Mental health patients treated like ‘animals in a zoo’ at Ablett Unit in North Wales, report finds‘ 28 May 2015

“Patients were kept “like animals in a zoo” at a mental health unit in Wales, families have said.

An investigation into the Ablett psychiatric unit in Rhyl, North Wales has found a series of alarming allegations to be true.

These included:

  • Patients being sworn at by staff
  • Patients left unsupervised for hours at a time
  • Patients nursed on the floor in corridors and rooms
  • Patients being left in urine-soaked beds
  • One patient left lying in their own excrement
  • Furniture used to restrain patients

The unit was closed down in 2013 after “serious concerns” were raised by medical staff and families.

North Wales Police launched an investigation and several members of staff were also suspended.

The Health Board also ordered an external independent review, which has now been published.

Executive Medical Director Dr Matthew Makin said the failures were down to a lack of robust checks in place and poor communication with the families.”

“The family of one patient described what they saw as “like when you go in a zoo and see animals that have been captured there for a long time and that’s all they’ve got to do is walk around and around.”

Ablett Unit report: Five key recommendations

The report also details one occasion when a patient was complaining of discomfort in their arm.

The report says the response from staff was: ‘Oh [the patient] did complain of a painful arm, but we didn’t take much notice really.’

After being taken to an Accident & Emergency department, the patient was diagnosed with a broken wrist, the investigation found.

The chief executive of the Betsi Cadwaladr University health board has apologised.

“I am extremely sorry that we let our our vulnerable patients and their families down so badly.

We have prioritised a range of work to prevent anything like this from happening again.”

– Trevor Purt ITV

News reporter Ben Chapman on film:

“...but perhaps the most shocking of all is that when patients’ relatives raised concerns about what was happening here they were ignored.  And worse, staff turned the blame on them, accusing them of being unreasonable …

……………………………………..

I’m speaking out about my son’s dehumanising treatment in Stratheden Hospital, near Cupar, in respect of my complaint against NHS Fife health board being upheld by the Scottish Public Services Ombudsman.

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 people and how to behave in challenging situations.  How to de-escalate a situation rather than making things worse.

peanuts infighting

‘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

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

mum50

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 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

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. …..

A Relationship with Resilience by Grant King on TaysideHealth and my response

My comment: “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.”

TaysideHealth

#selfcare provokes #goodcaregrant

I believe that it was the above tweet that instigated a conversation leading to this blog post.   As part of a twit-chat looking at self-care in nursing, I noted the relationship between nurses’ self-care and the quality of healthcare they provide.   Around the same time I was teaching and writing about the concept of resilience in a healthcare context.   I came to reflect on the role of resilience in both the lives of those who provide healthcare and of those that may require it.

“The human capacity for burden is like bamboo- far more flexible than you’d ever  believe at first glance.” ― Jodi Picoult

Resilience is the ability to cope with, and then positively adapt, following a period of adversity (Haddadi and Besharat 2010).   There are a number of factors that act as risks to our resilience.  These include dysfunctional relationships, trauma and social disadvantage (Chesterton…

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Medical education and economies of influence: Hole Ousia reblog

Hole Ousia

This reply to Dr McCartney’s recent editorial “Forever indebted to pharma – doctors must take control of our own education” was published yesterday in the BMJ rapid-responses. I felt it worth re-posting here on Hole Ousia. The author is Mark H Wilson, Bio-ethicist, Ontario, Canada:

Medical education and economies of influence

If anybody is inclined to think that this is “all in the past” it is worth looking at this up-to-date collection of invitations to pharma-sponsored medical education in the UK.

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