Paramedics and trainee paramedics rotate through our Department of Anaesthesia to learn to manage airways safely. A few weeks ago, I had a young man in his mid-thirties, a trainee paramedic with me, learning about airway management. Out of curiosity I asked him, “What is the most annoying part of your job?” He was straight-up, “When people inflict injuries on themselves, I think it’s such a waste of time. It takes away from others with real problems, who really need our attention.” I just smiled. I wasn’t surprised. I know full well that paramedics do a great job of looking after all kinds of people in all kinds of trouble. But attitudes can only be changed through education.
A professor of Psychiatry tweeted today “Twice in the last week I’ve been told of cruel comments by health staff to people who had self-harmed. I really believe this is unusual now but it shows there is something deep-rooted that we have to eradicate.” A classic example of ignorance within medicine of attitudes within medicine.
No training of first responders is complete till someone
with lived experience of a mental illness has spoken with them, be it a police
academy, social workers, fire fighters, nursing or medical students or
ambulance crew. Lived
experience includes suicide attempt survivors, others who have experienced a
suicidal crisis and those who have lost a loved one to suicide. Sharing by
these individuals can be a powerful agent for challenging prejudice and
generating hope for people at risk. It enriches the participant’s understanding
of how people with these serious disorders cope with their symptoms, recover
and lead productive lives with hope, meaning and dignity. The program also
empowers those who are faced with mental illness and provides living proof that
recovery is an ongoing reality. Presenters gain confidence and self-esteem
while serving as role models for the community.
focus on research and clinical expertise too frequently fails to see the person
at the centre of a crisis as well as their loved ones who ride the wave of
terror of suicidal behaviour. This needs to change and with urgency.
Lived Experience is an underutilised and underappreciated resource in the UK.
Roses in the ocean, a charity in Australia is an excellent example of harnessing this invaluable resource and making a huge difference.
You are 28.
Married 4 years.
No babies yet?
Your mum’s bursting with unspoken questions.
The answer arrives finally.
A perfectly miraculous baby.
Born to you, so ordinary.
He’s way beyond your dreams.
Your life’s now embellished.
He’s much loved and cherished.
First grandson on both sides.
That smile! Those cackles!
Those big bright brown eyes!
He can’t wait to grow up.
As if in a big hurry,
He rushes into walking, talking.
Loving mangoes and chicken curry.
You work hard for your family.
That’s the way you’ve learnt to be.
From the life of your Papa and Mummy.
So many new houses, schools and friends.
So many new towns, cities and trends.
He takes all of them in his stride.
Builds up a repertoire of languages
from far and wide.
He learns to play the drums
Lovely unfamiliar melodies he hums.
Spinning red cricket balls on summer afternoons.
Reveling at night to heavy rock tunes.
You split your sides
with his impressions of accents
and caricatures of the brown, the black,
the yellow and the white.
Paul Choudhary and Russell Peter.
He loves their comedy.
Their lines he recites to perfection
At every opportunity.
Two things delight him most – friends and food.
Stars at GCSEs and A levels come easy.
He’s quiet the dude.
Uni takes him away to Durham.
You miss his laugh, his wit and his hum.
You find it painful to cook for one.
And long for his cocktail –
The old-fashioned rum.
Two years go by.
You think you are learning to comply.
The holidays come by.
Each and every moment you enjoy.
One day his closest friend, Hugo calls to say,
“The guy I’ve known most of my life?
Saagar is not that guy.”
The summer soon turns scary.
You find yourselves in A&E.
His laughter replaced with
Anger and paranoia.
The Liason Psychiatrist calls it ‘hypomania’.
He starts him on ‘Olanzepine’.
Puts him under the Home Treatment Team.
They keep you well out of the scheme.
They know what’s best for him.
Two weeks pass.
He responds well to the pill.
He’s told he has Bipolar Disorder.
You’re told nothing. Nil.
As his mood returns to somewhat normal,
He wants to return to University.
He is discharged to your GP.
The GP receives a discharge letter.
With no diagnosis.
No mention of signs of getting worse
No list of warning signs.
No safety plans or designs.
He’s just another number to quote.
A delivery note. Completed in rote.
He went back to Uni but just for 2 days.
His mood slumped.
He is too quiet. You are stumped.
At the next visit to the GP
You describe his sadness.
You are weepy.
Then you hear the wise doc say
Take more pills, Citalopram and go away.
In 3 or 4 weeks
They will start to play.
Rome was not built in one day.
“Would you please refer him back to the psychiatrists? You plead.
“They will do exactly what I am doing.” Says he.
“This is not the first time I’m treating someone like this.”
Take this slip please.
You remember the look on his face.
It’s now clear
As if in front of you right here.
The lines you thought were concern,
As advised, you go for walks and have a routine.
Weekly CBT, daily gym, nice food and TV.
Multiple episodes of ‘Office’ and ‘Friends’
Didn’t bring about any upward trends.
He is but a hollow shell.
You don’t know what to do.
Who to tell?
This is your NHS.
It’s honest and good.
You know it.
May be waiting is the best thing to do.
If they say he’ll get better
It must be true.
One Thursday afternoon you return from work.
An A4 sheet lies flat on the fourth step from the door
“Sorry. I can’t take this any more.”
The hand writing unmistakable.
The implications unthinkable.
A dash upstairs. Screaming his name.
A call to 999.
He’s only a child. A sweet child.
And he’s not well.
Surely they’ll find him.
All will be swell.
Standing bare feet
in the middle of the street
A festival of autumn all around me
Red, orange, ochre and green.
A car pulls up in front of our house.
Two uniformed men with his
Keys and wallet … talk about
Brown skin …
Grey hoody with a penguin …
No one said anything about death or suicide
What was there to hide?
10 weeks from the first hospital visit.
2 days from the last GP visit.
Later you find out they knew.
But they didn’t tell you.
And they didn’t know what to do.
They sent him home with you.
They call it ‘Care in the community’.
Do we know the difference between
Treatment and care?
If this is your community,
What a pity!
These are your colleagues.
You trust them implicitly.
With your baby.
Like they would have trusted me.
I grieve for his guilt,
His shame, his self-blame.
Him. All alone. Forlorn.
His quiet desperation.
His terror. His fright.
Night after night.
Behind a hood.
No one should have to suffer so.
“To be or not to be”
That comes up for me.
Time goes round and round pointlessly
Never too far from complete insanity.
Oh! The finality.
I wonder if this is a movie or reality?
The official investigation says
everything was 'thorough and reasonable'
despite all the missing bits and
complete lack of clarity.
The doctor stands up in Coroner’s court
and announces boldly
“Suicides are not predictable or preventable.”
I shudder in disbelief. Here stands a lay person.
The only one who could have helped.
I marvel at Saagar for staying alive
for as long as he did.
The Coroner sees the gaping holes
that swallowed him alive.
Same old themes.
Listening to understand.
Closing the loop.
Meaningful sharing of information.
She asked the Service Improvement manager of the distinguished Mental hospital what he would do to make things better.
He said he would discuss it at the next Business meeting and then spewed such jargon that I could have puked all over the floor of that spotless court room.
I meet with other parents of deep loss.
Story upon story of utter tragedy.
Avoidable, preventable travesty.
Immense outrage and consternation.
Let’s start afresh with compassion.
They say when something good happens, learn.
When something bad happens, learn.
At a random conference, over coffee,
I shared Saagar’s story
with a seasoned doctor of Psychiatry.
He said plainly
”This has been happening as far back as my memory ... ”
I read somewhere:
The opposite of love in not hate.
The opposite of art is not ugliness.
The opposite of faith is not heresy.
The opposite of life is not death.
I questioned everything about me.
Every decision, every word spoken, unspoken.
Every move. Every choice.
I even questioned our love.
But I learnt.
I learnt to write. To speak.
I learnt that there is no ‘they’ or ‘thee’
No ‘you’ and ‘me’.
There is no other.
It’s just ‘us’ and ‘we’.
Saagar was our future. Our own. Our community.
Despite everything, I’m learning to love me.
Did the others learn anything?
Did my son, your son die of nothing. For nothing?
No. There is a Saagar shaped hole in my heart.
There is an Ed shaped hole in the NHS.
There is a James shaped hole in A&E.
At least seven thousand and fifty
more holes in the world since Saagar.
There are too many holes in this net.
In fact, there is no net.
So, one and all, Mind the Gaps.
And let’s please begin
To close them in.
[ Please support this film: https://igg.me/at/1000days ]
The first time I saw Jeanette, she was acting in a play called ‘Hearing Things’ being staged at South London and Maudsley (SLaM) Hospital, where Saagar received (inadequate) treatment. The play was inspired by events and conversations from real ward rounds of patients with serious mental illnesses. It was written by the playwright often described by critics as the ‘English Chekhov’- Philip Osment, well known for giving a voice to those at the margins of society.
The play highlighted harsh facts through a story sensitively told. Just three actors illuminated the wide swathes of blurred lines between sanity and insanity, between the healer and the ill, between strength and fragility. I learnt a lot from it. It was a powerful blast that left me thinking about my roles as an ordinary member of society, a doctor, a mother, a patient. It gave me an insight into how and why the system does and does not work. I thought it gave me a little peek into Saagar’s mind. It certainly made me feel utterly close to him in an unearthly compassionate way.
A few weeks later I arranged to meet with Jeanette. I trusted her even before I knew her. She listened. We talked for a long time. She read the blog. I suggested a documentary. I spoke with some of Saagar’s friends and they wanted to participate. So was Si. We all had something to say. Ron and Jeanette filmed it last year.
This year we aim to complete it and release it. We have a name – ‘1000 days’. We have found a suitable and brilliant editor. We need to find some platforms to showcase it and we will. We are working on a crowd-funding campaign which will be launched within the next 10 days. The intention is to make this world a kinder and more understanding place. Watch this space.
She was 29. She had suffered with severe anxiety and depression since the age of 12. She was diagnosed with Borderline Personality Disorder and other things. “I have never been happy – I don’t know the concept of happiness”, said she. Aurelia had spent a couple of years in a Psychiatric unit and a couple in a prison. She wanted to be freed from her body. Doctors in the Netherlands agreed to assist her to end her life. On the 26th of Jan 2018, she drank the poisonous mix of drugs (supplied by medics), cosy in her bed, in the presence of her pals and 2 doctors, clutching her soft, pink, toy dinosaur and peacefully slipped away.
This is the beginning of the death of hope. I have full sympathy with Aurelia’s suffering. The question is:
Had every other option been fully explored and found useless?
Had she read Buddhist teachings or volunteered to help conserve a local park or anything else?
Had she tried travelling to a different country with a different vibe?
Had she tried Homeopathy, Ayurveda or Chinese traditional medicine?
Reflexology, Aromatherapy or Kinesiology? Music, theatre or art therapy?
The range of options explored are limited by the limitations of the imagination of ‘the system’. A purely medical approach is useless without attention to social factors. Many social issues cannot be fixed but they can be understood and imaginative alternatives offered.
Her death wish was most likely a symptom of her illness. No?
Does this euthanasia make it easier for many others to give up?
Can we be a 100% sure that she had considered all her options?
Had she received appropriate bereavement support when her mother had passed away?
My deepest condolences to her friends and her Dad.
RIP Aurelia. I am sorry you couldn’t find a reason to live.
“The past is never dead. It’s not even past.”
– William Falkner. Requiem for a Nun.
The echoes of past traumas get subconsciously played out by us in our everyday lives. Sigmund Freud called it ‘repetition compulsion’ – an attempt of the unconscious mind to replay the unresolved so that we can ‘get it right’. This mechanism drives its way through generations. Jung also noted that whatever is too difficult to process does not fade away. It gets stored in our unconscious and finds expression in other ways. He says,” When an inner situation is not made conscious, it happens outside as fate.”
Here’s an example: Jake was 19. He hadn’t slept a full night’s sleep in more than a year. He had developed dark circles around his eyes and a blank stare in them. He looked at least 10 years older. He had been a star student and a great athlete but the insomnia had left him lifeless. This thing had no explanation and none of his doctors or psychologists or naturopaths could figure it out.
It had started with Jake waking up shivering one night at 3.30 am, frightened to death. No amount of woollen clothing warmed him up. Soon, insomnia became a daily ordeal. Despite knowing that his fear was irrational, Jake was helpless and could not relax. The ‘freezing’ feeling associated with the first episode was quite peculiar.
On exploration of Jake’s family history, this story came out: His mum’s brother, Uncle Colin, whom he had never met had frozen to death at the age of 19. He was checking power lines in a storm in the Northwest of Canada. He struggled to hang on but eventually fell face down in a blizzard, lost consciousness and died of hypothermia. The family never spoke his name again.
Now, thirty years later, Jake was unable to slip into sleep at the same age as his Uncle. For Colin, letting go meant death. For Jake, falling asleep must have felt the same. Once Jake could see this link, he was able to free himself of it with the help of healing techniques taught by Dr Mark Wolynn, a neuroscientist with an expertise in breaking inherited family patterns. His book “It didn’t start with you”, describes some of these practical tools.
Scientists are now able to identify bio-markers as evidence of traumas passed down from one generation to the next. Studies on Holocaust survivors and their children have revolutionised the understanding and treatment of PTSD all over the world. Be it fear, guilt, low self-esteem or anxiety, the roots of these issues may reside in the traumas of our parents, grand-parents and even great-grandparents.
During his holidays, Saagar and his friends would be subjected to Woman’s hour on BBC Radio 4 second hand, as their mothers listened. They would later have amusing/interesting discussions about breast feeding, female education and employment challenges. This station was pre-set on the car-radio and at home. It was designated as the ‘old people’s’ radio-station by him. Invariably, ‘Gardener’s question time’ would come on while we were in the car together, travelling over the weekend. It was quaint by its sheer irrelevance to us as we could barely keep our 4 nameless indoor plants alive. Our urban pre-occupations meant we didn’t have a gardening vocabulary.
‘Just a minute’ was our all-time favourite – a panel of funny people asked to speak for one whole minute on a given topic without repetition, hesitation or deviation. The seemingly innocent topics often held great potential for hilarity, for example, billiards, the best thing about cats, how I spread a little happiness, keeping a straight face, my love of the absurd, garages and such. The correct and incorrect challenges posed by the panellists generated tremendous amount of laughter. Our attempts at giving each other topics resulted in great amusement.
On Thursday evening I was asked if I’d like to be a guest on Woman’s hour to talk about Saagar. It was unbelievable. It made me smile and cry at the same time. What a paradox! Of course I’d love to be on Woman’s hour. Under these circumstances? Meeting Jenni Murray was an honour. She was down to earth and professional, looking just as I imagined, in her trademark glasses sitting just above the tip of her nose.I told her she had my dream job. She said Joan Baez had been in the studio the day before, sitting at the same chair as me. How cool! Oops! Saagar prohibited me from saying ‘cool’ as he thought it sounded all wrong coming from me. I wonder how he would feel about this interview if he knew. Maybe he does.
Despite making notes and preparing as well as I could, I was a bit flummoxed by some of the questions. I didn’t say everything I wanted to. I hope there will be other opportunities. This conversation must grow until everyone is a part of it in a meaningful and constructive way. In a way that saves lives.
A recording of the interview with brilliant and committed Mr Ged Flynn, the CEO of PAPYRUS and I:
A few decades ago, cigarettes were everywhere. It was normal for men and women to smoke. Physicians were known to recommend smoking. The advertising machinery glorified it.
Today, Electro-Magnetic Fields (EMFs) are everywhere. They wrap us all in multiple layers of invisible weaves of radiations arising from cell-phones, baby monitors, cordless phones, bluetooths, wi-fi routers, smart meters and microwave ovens. There is very little information out there about the effect these gadgets have on our bodies and minds.
According to Dr Mercola’s research these EMFs cause a significant oxidative stress on our cells leading to the release of free radicals which in turn cause serious mitochondrial damage. Mitochondria are “powerhouses” of each cell, breaking down fuel molecules and creating the energy the cells need to perform their functions. Children are at greater risk of such damage than adults. Damaged mitochondria have been held responsible for anxiety, depression, autism, Alzhiemer’s disease, rhythm disorders of the heart and infertility. Dr Mercola also gives practical suggestions on how to minimise the damage.
In 2008, a Danish study involving more than 13,000 mothers revealed some sobering potential effects. Children born of mothers who used cell-phones during pregnancy as compared with children born of mothers who did not, experienced a :
49 % increase in behavioral problems
35 % increase in hyperactivity
34 % increase in peer-related problems
25 % increase in emotional issues
These findings indicate a huge impact on public health and need for further research. Mobile phones are now essential to our lives. Our days begin and end with them. Some people have it right beside them even when they sleep. Lack of one is considered odd. Not being able to locate one’s phone can induce a state of panic. ‘Low battery’ is a highly undesirable state. There is an official term for fear of being without a phone, NoMoPhobia (No Mobile Phobia). I think our generation was the last one to have reached adulthood without cell-phones. Now, they are everywhere.
Jo is a dear friend and mother to a 9 year old who is on the Autistic spectrum. Here she shares what it’s like to advocate for her son and how hard it is to ensure that he receives appropriate care. Thanks Jo.
PS: Incidentally all antipsychotic medications are known to cause severe mitochondrial damage too.