Mind the Gap

 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. 
  
 He thrives. 
 Multiple moves
 He survives. 
 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 
 Or better. 
 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.
 Wait.
 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,
 Were fear.
  
 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. 
 It’s you. 
 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
 Black hair…
 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.
 Separation.
 His terror. His fright.
 Night after night.
 Misunderstood.
 Behind a hood. 
 No one should have to suffer so.
 Nobody.  
  
 “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.
 Communication. 
 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.
 It’s indifference.
 The opposite of art is not ugliness.
 It’s indifference.
 The opposite of faith is not heresy.
 It’s indifference.
 The opposite of life is not death.
 It’s indifference. 
  
 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. 
 And rising.
 There are too many holes in this net. 
 In fact, there is no net.
 Just gaps.
 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 ]

Me and Thee

Ron and Jeanette

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.

Many thanks in advance.

Pink Dinosaur

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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.

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Youtube clip: https://www.youtube.com/watch?v=ySVKF5_6gfM

 

Inheritance of fear

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.

 

Old people’s radio station

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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:

It’s everywhere.

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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.

Day 962

A letter of recommendations addressed to SLaM, drawn up along with another mother, who lost her son, Simba, to suicide:

“The laws that govern the relationship between professionals and patients namely:  the Data Protection Act (1998), the common law duty of confidentiality, and the Human Rights Act (1998) are all silent about the nature of the  relationship between  professionals and carers. This is because these laws regard each citizen as an autonomous agent capable of making decisions with regard to their own rights.

The Common Law Duty of Confidentiality in particular has been derived from the millennials-old Socratic oath taken by doctors, which is absolutist in its injunction stipulating that there is no condition under which doctor-patient confidentiality may be broken.  The 21st century has witnessed a significant shift in the doctor –patient relationships as well as, increasingly, in the doctor-patient-carer relationships. The increasing need to care for patients outside of hospitals and within communities or in their homes, has necessitated a requirement for greater collaboration between professionals and carers.

Given the pivotal roles of carers in the management of service users, the professional’s duty to share information with carers is covered by the 7th Caldicott principle: the duty to share information can be as important as the duty to protect patient confidentiality.

As carers who have had first-hand experience of caring for loved ones, we set out below some recommendations which we believe will help professionals and carers in working more effectively together for the well-being of service users and carers.

Carer’s Recommendations

  1. Patients should be actively encouraged to nominate someone they trust in their care, right from the beginning. This practice should be so well engrained that the nominated person becomes an integral part of the process of care and recovery. It is also recognised that a patient may nominate a trusted person who is a friend to attend meetings instead of a family member, as the presence of the relative may inhibit frank and honest disclosures with professionals. For example, in CAMHS a young person may trust a friend to advocate for them more than they trust their parents. If this is the case, the right of the carer or next of kin to be kept informed of the care plan should also be respected, so that they are not left out of planning and can continue to care effectively.

This recommendation is particularly relevant if the service user lives with the carer.

2. At the time of diagnosis, accurate information about the nature of the illness and the choice of treatments should be given to the carers, in written and verbal form or on- line if such facility exists. They should be made aware of their rights as carers and encouraged to partner with health professionals in the care of the patient. They should also be given realistic information about the natural course and mortality of the illness. This may mean spending more time with patients and carers at consultations, and the need for additional support services.

3. Carers should be provided with the following:
– Diagnosis or working diagnosis of the psychiatric condition
– List of symptoms to look out for.
– A management plan.
– Choices of treatment.
– Possible side-effects of any medication.
– Possible roles for the carer in managing symptoms.
– Sources of support for the carer, for example pamphlets or online resources.

  1. Professionals must remember the following when working with carers:

– To be more transparent in their communication with carers.
– To anticipate the carers need for information, providing necessary information about the nature of illness and available services even if the carer does not directly ask for this.
– To have empathy and willingness to engage carers and build a trusting relationship.
– To consider that carers may need practical support in order to be effective carers.

  1. The carers must be educated and empowered with knowledge about the psychiatric condition. They should be made to feel involved in the process of care, especially if the patients are being cared for in the community. Crisis teams and early intervention teams should engage members of the family in the care package.
  1. It needs to be understood that carers are a valuable resource, and must be listened to, as they spend more time with the patient than professionals do, and therefore will know them well. Even when service users instruct teams not to see their families, professionals should always meet with the families for collateral history, and especially if the family requests to be seen by a professional. Carers and friends know their relatives well enough to see early warning signs, and should be encouraged to share such information if necessary, in confidence with professionals especially if the service user is too ill to give consent because they are lacking in insight.
  1. Carers’ perspectives should be part of the training curriculum for junior doctors and medical students wherever possible.
  1. Patients should not be discharged from one team to another or from specialist care to primary care without arranging an early follow-up date. Given the risk of patients falling through cracks in the service following discharge, carers should be given adequate information about service structures and not merely told to go to the GP or the local AE in crisis situations.
  1. Decision making around the timing of discharge should be properly scrutinised, as premature discharge could have disastrous consequences.
  1. Discharge plans should include information for carers about the following:

-What are the warning signs to watch out for?
-What service number to call?
-How quickly one can expect help to arrive.
-Where to go in day/night time in a crisis.

  1. GPs must also understand the importance of engaging with carers, listening to them, and sharing important information.
  1. Community teams should engage patients and families in discharge planning. Where necessary, designing a crisis plan should be a joint enterprise between teams and patient and family. Carers should be involved in the design of the plan, and be given a copy of the finished document. Professionals must anticipate any problems with the patient and share them with carers at the time of discharge.
  1. Organisational structures should be redesigned to address the problems brought on by the strict compartmentalisation of services. This can be a hindrance to the provision of safe and efficient patient care.
  1. Mishaps and suicides should be investigated within a week, with the intention of learning lessons and preventing future serious incidences due to the same causes. Carers should be involved in this process, in order to hear the story from their point of view and arrive at real answers. Defensive investigations do not add to learning or patient safety. Contact with families must be at the earliest possible time following death or serious incidents. This is the time when families are most vulnerable and require information about their loved ones from those who were present. Legal considerations of blameworthiness should not prevent staff from empathetic consideration and communication with the bereaved families. Likewise, protracted legal processes should not be allowed to stop the trust from reaching out to bereaved families. Carers understand that staff may feel vulnerable following serious incidents but it should be understood that carers feel equally vulnerable and unlike professionals, may have no access to support networks at such times.
  1. At Coroner’s inquests, the trust should send representatives who have a deep knowledge of the case and who will not hide behind jargon.