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:

Every day my love is new.

All those years ago, when we were kids, we attended medical school together. The Batch of 1983 had its 3rd re-union at Cochin, the capital of Kerala in South India over the last 3 days. I travelled from snow-bound Wiltshire to lush green tropics. Many of my classmates came together from all over the globe. Some brought their families. Others brought videos of their kids doing this and that. I brought memories. We shared stories of our teachers and colleagues from our time as adolescents and young doctors at our alma mater. We felt close to each other, reminiscing our naivety, vulnerability and innocence. Nostalgia of our ‘good old days’ of simplicity, like silk threads knitted us close.

We went sari shopping. My friend chose a pale blue sari with a gold border. Her 15 year old daughter commented, “it’s as bland as playing tennis without a net.” It was exactly the kind of thing Saagar would say. He would also take great pleasure in imitating the way I say, “So pretty. No?”. Aaaaaaaaargh!!!

Looking back:

2014: Saagar went.
2015: Longing
2016: Longing
2017: Longing

If I told my plight to a river, it would stop flowing. If I told it to a tree it would shed all its leaves. I burn in this fire of longing, again and again, every day. I have become a boat of compassion filled with the gold of nothing, riding the waves in search of my beloved. I weather the tides of sorrow and happiness while my longing lives in me. I find my beloved in my longing. There is no destination no more.

An ancient parable goes like this: Once a forest caught fire and all the birds and animals of that forest started to leave. There was a bright little parrot who decided to stay. The tree that housed it said, ”You have wings. Go. Fly away.”
“I ate your fruit, I soiled your leaves, I played from branch to branch. You burn and I fly away? You love but once.”
The utterly foolish parrot goes and plunges herself in a nearby lake, comes back and flaps her wings over the blazing forest fire. Two drops of water fall. She goes back into the lake and come back with another couple of drops of water and sprinkles them over the humungous fire. The other fleeing birds and animals start scoffing and laughing at her.
“What do you think you are doing?”, they say.
The parrot turns around and says “I am doing what I can.”
Just then the Gods pass by and see this bird. They take the form of an eagle and watch her closely. They are incredible moved to see her do what needed to be done, be in the here and now and her passionate endeavours to quench the fire in and around her. The Gods wept and the clouds burst into a heavy down pour of milk.

Everyday my love is new.
I wish you the same.

“Whatever happens in your life, no matter how troubling things might seem, do not enter the neighbourhood of despair. Even when all doors remain closed, God will open-up a new path only for you. Be thankful when all is well. A Sufi is thankful not only for what he has been given but also for all that has been denied.” – From ‘Forty rules of love’ by Elif Shafak.

Kisa Gautami

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In ancient India, there lived a woman. She was happily married to a rich merchant and was the proud mother of a bubbly one year old. After a brief illness, her only son died. Her grief was unbearable. Wailing and weeping, she took her child’s lifeless remains from door to door pleading with the townspeople to bring her beautiful child back to life. No one could help her. She was destroyed.

Someone suggested she take her infant to the Buddha. She did. Through her tears and sobs she narrated her tragic story and begged Him to infuse life back into her bundle of joy. The Buddha listened with compassion and said, “Kisa Gautami, there is only one way. Bring me 5 mustard seeds from a household where no deaths have occurred.”

Her eyes lit up with hope. She hurriedly gathered up her bundle and once again, went knocking on each and every door in town. To her utter disappointment, every family had experienced death in one form or another. She realised the lesson that the Buddha had wanted her to learn. Suffering is a part of life and death is inevitable. Kisa Gautami’s eyes were now open. In the light of this knowledge, she could handle her grief. She went on to become an ardent follower of the teachings of Buddha.

Like Kisa Gautami, I have found myself at the feet of the Buddha. His teachings have brought light and lightness to my being. Along the way other divine souls have helped in unique ways.

This is the festive season for most people. Planning meals, choosing stocking fillers, selecting wrapping paper, posting greeting cards and preparing to welcome the New Year. Yay! It’s all happening. But a Saagar-shaped piece is missing. I feel for all the families who will have that vacant chair at their table this year. I hold them close to my heart. As time goes by, it does not get easier. This excerpt on the subject of ‘Pain’ from ‘The Prophet’ speaks to me. I hope it helps you too. I wish you as peaceful a time as possible.

“And a woman spoke, saying, “Tell us of Pain.”
And he said: Your pain is the breaking of the shell that encloses your understanding.
Even as the stone of the fruit must break, that its heart may stand in the sun, so must you know pain.
And could you keep your heart in wonder at the daily miracles of your life, your pain would not seem less wondrous than your joy;
And you would accept the seasons of your heart, even as you have always accepted the seasons that pass over your fields.
And you would watch with serenity through the winters of your grief.
Much of your pain is self-chosen.
It is the bitter potion by which the physician within you heals your sick self.
Therefore trust the physician, and drink his remedy in silence and tranquillity:
For his hand, though heavy and hard, is guided by the tender hand of the Unseen,
And the cup he brings, though it burn your lips, has been fashioned of the clay which the
Potter has moistened with His own sacred tears.”
― Kahlil GibranThe Prophet

 

Confidentiality versus Life

Three years back I joined a club no one wants to be a member of. I became a parent who lost their beautiful child to suicide. He was 20. I didn’t think it was possible. I trusted his doctors to take good care of him. I trusted they would tell me if there was a real risk of him dying, given I am his mother and was his prime carer. I thought they had the expertise to identify and address ‘crisis’ when they saw it. Suicide was not in the script. It was not supposed to happen. I turn the fact of his sudden traumatic death over and over in my head and it makes no sense.

There are hundreds of distraught and bewildered members of this club. Common themes emerge from their stories. The commonest one is:

“They knew our child wanted to end his/her life but they didn’t tell us anything about it.”

Who are they?
Decision makers – Medics. Universities.

Why?
Because he/she is over 18, hence, technically an adult.
Their ‘confidentiality’ is paramount.

Is it?
Is it more important than helping them stay alive?

The Hippocratic oath states:
“I will follow that system of regimen which, according to my ability and judgment, I consider for the benefit of my patients, and abstain from whatever is deleterious and mischievous.”

According to experts[1], these are the essential components of an effective suicide prevention safety plan:

  1. Discussing the reasons for living
  2. Safe environment
  3. Identify distress triggers
  4. Removing ways to harm yourself
  5. Activities to calm/lift mood or distract
  6. Contacts for general support
  7. Specific suicide prevention support
  8. Professional support
  9. Emergency contact details
  10. Personal commitment to follow safety plan

Most of the above cannot be implemented without the help of carers and families if the person in question is seriously unwell. This has been recognised by the Department of Health, Royal Colleges of Psychiatrists, GPs and Nursing along with The British Association of Social Workers and The British Psychological Society. Together they published a consensus statement entitled[2] “Information Sharing and Suicide Prevention” in 2014, the same year that my son, Saagar Naresh[3] passed away. It clearly states that practitioners should disclose information to an appropriate person or authority if this is necessary to protect a child or young person from risk of death or serious harm.

“If the purpose of the disclosure is to prevent a person who lacks capacity from serious harm, there is an expectation that practitioners will disclose relevant confidential information, if it is considered to be in the person’s best interest to do so.”

This is still not being practised. The world of medicine is a conservative and defensive one. Until the regulatory bodies, NHS Trusts and the Government come forward to reassure practitioners that their decision to share information appropriately will be supported by them, nothing will change.

While the world carries on, innocent youngsters die from lack of support and understanding from the very people who are best placed to help them. PAPYRUS, a UK charity dedicated to prevention of young suicides[4] demands that information be appropriately shared with carers and families by all who take care of vulnerable young people at risk of suicide.

Confidentiality versus Life. It’s a no-brainer.

References:

[1] https://www.healthcareconferencesuk.co.uk/news/newsfiles/alys-cole-king_1219.pdf

[2] https://www.bl.uk/britishlibrary/~/media/bl/global/social-welfare/pdfs/non-secure/i/n/f/information-sharing-and-suicide-prevention-consensus-statement.pdf

[3] www.kidsaregifts.org

[4] PAPYRUS (https://www.papyrus-uk.org/)

Treatment versus Care

In her entry to this year’s BMA News Writing Competition, a consultant psychiatrist relates the experience of her postpartum psychosis and explains that, although grateful for her treatment, something was missing from the care she received.

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The Human Factor

I am a consultant psychiatrist. Two years ago, I had a taste of my own medicine.

Three sleepless nights after the birth of my daughter, I became acutely ill. I slowly realised I couldn’t sleep — something strange was happening. Within six hours, I was experiencing a kaleidoscope of symptoms — elation, fear, heightened senses, delusions. I wanted to kill myself and my daughter.

Postpartum psychosis is a medical emergency and a consultant perinatal psychiatrist was at my house within the hour. I literally ran to her ward in my socks, my mum running behind, having forgotten her shoes too.

My first night was terrifying, but the staff were fantastic. As I rode an emotional rollercoaster, they reassured me, calmed me, gave me the sedation I desperately needed. Soon, I settled into a mild mania. Though at times it was very scary, I was fascinated. I noted with curiosity how my brain behaved. I felt great love for my daughter, and beneficence for my fellow man. I enjoyed all the activities the ward had to offer.

Five weeks later I was happily home. But what goes up, must come down. Gradually, I became unsettled, filled with self-doubt. I became convinced my baby was autistic. The anxiety became intense, and I considered suicide. My consultant coaxed me into hospital again. ‘It will only be two weeks,’ she promised. ‘I think you need to start lithium.’

You cannot breastfeed on lithium. One day I was connected with my baby, the next she fed from a bottle. My heart broke as my breasts filled to burst. It was a symbolic change, from wonderful to awful. She smelled wrong, artificial. I began a tiresome regimen of sterilising, preparing and cooling bottles, when all the while my baby yelled, to my great shame. As if in protest, she vomited spectacularly after every feed.

This time, the ward seemed an unfriendly place; swelteringly hot, noisy, tedious, excessively rule-bound. The other patients seemed uninteresting and depressing. My eldest son was bewildered: he wasn’t allowed on the ward. Why wasn’t mummy coming home? He became rejecting and oppositional. My heart broke some more.

I begged for leave but developed extreme insomnia and could not get well. I remember one night getting up, sitting down, and getting up again for seven hours, unable to decide whether to wake my baby for a change. A burly nurse was recruited to force me unceremoniously to move to a room near the nurses. I was told I would be sectioned if I tried to leave. An informal patient, I was allowed out for only half an hour each day.

I told my consultant I wasn’t depressed, her ward was the problem. ‘You’re depressed’ she repeated, implacably, and brought in a second-opinion doctor. I was desperate to leave as soon as I arrived, yet those two weeks became two months.

Having a mental illness is one of the most disturbing and frightening experiences one can ever have. The rug is truly pulled out from under your feet. Suddenly you are somehow lesser, rendered powerless. I was one of the lucky ones. I knew what was happening, and was more able than most to speak up for myself. I got treated very quickly. Many don’t.

My consultant was a former colleague of mine, a peer. She was kind but paternalistic, and my care became a battle of wills. She believed her plan was faultless and that her ward was entirely beneficial. She conducted her ward rounds like job interviews and treated me like an adolescent. I watched helplessly as she pathologised my normal behaviour and denied promises to get me to comply.

We were fragile mothers, but were often shamed like naughty children for not ‘doing the right thing’, sometimes berated across the ward for all to hear by opinionated nursery nurses with little sensitivity to our mental state. Mothering a screaming baby during an intense crisis of confidence was a tortuous task, yet it was rarely considered that our babies were exacerbating the problem. Scared and disturbed women were managed by intimidating rapid response teams.

I lost trust in them, I hid symptoms. One night I nearly killed myself but never told.

I now can understand how my patients feel when they say they no longer want to go back to ‘that place’. How lack of insight guides them away from reminders of restraint, coercion, scrutiny and endless questions. How it is difficult to trust people who don’t treat you as fully human.

Despite all the positives and the expertise in my care, an important element was missing. Care needs to be more than medication, therapies and keeping people safe. Now I’ve had a taste of my own medicine, I always ask: ‘What is this like for you, what do you really need to help you get well?’

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Yes. It’s different.

A few days before the wedding Si asked me how I felt about getting married. Smiling, I said “Well, it’s a good way to finally get to know you.” When two people get married after an 8 years long relationship, they hope like hell things stay the same. Do I feel any different after the wedding?

Yes.
It’s like becoming an important part of something much bigger than me. I feel entrusted with a higher level of responsibility and I feel confident that I can live up to it as I feel deeply connected and resourceful. I feel closer to Si than before if that’s possible. I feel stronger and well supported by many. It feels a million times healthier than being the ‘lone wolf’ I have been for a long time.

Our loose 10 day itinerary explores the godly province of Himachal Pradesh in North India. Today we are at ‘The Mirage’ in a tiny village, Andretta.

Andretta is a traditional hub for painters, actors, potters, ceramic and other artists. Norah Richards, an Irish play-write established this focal point in 1924 through her passion for local art and culture.

The artistic heritage of Andretta is evident from the presence of a fascinating pottery museum and a quaint art gallery within half a kilometre, on the village “High Dirt-track”. Being here is tranquil and uplifting. People here are warm, kind and eclectic. They smile generously and look content. Their simplicity is exquisite. Si and I dream of spending more of our time around here.

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I am not my diagnosis.

While I continue to struggle to figure out Twitter, forget how to update my website, get confused while recording podcasts, consistently get my innumerable passwords mixed up, stay oblivious about Instagram and Snapchat, the digital world gallops ahead.

Digital Interventions in mental health Conference 2017 was recently held in London. It explored topics across psychiatry, technology and culture to identify innovative ways of addressing mental health needs.

Dr Becky Inkster is a Neuroscientist, passionate about digital interventions in mental health, social media data analysis, genomics, molecular biology, and neuroimaging. She co-founded Hip-Hop Psych as she is passionate about working with hard-to-reach, disadvantaged groups and youth culture.

‘Views from the street’, ‘Prison transition tools’, ‘Beyond the bullets’ and ‘The Digital Psychiatrist’ are some of the workshops that were conducted at the above conference. The range of topics was rather fantastic. It was aimed at improving our understanding of how social media is helping to create and facilitate new spaces for mental health practices and support, exploring the benefits of social media and social networking to improve a sense of identity, self-expression, community building and emotional support through examining a few popular international examples. Participants and facilitators engaged in interactive sessions to understand how new tools for self-expression via pictures, videos, captions and short personal narratives can help break down the stigma surrounding mental health and perhaps even lead to more people seeking help. They explored how to empower young people to use social networks in a way that promotes their mental health and wellbeing, how to harness the power of social media to nurture mental health innovations that the future holds.

Impressive stuff. I carry on doing what I do. I write another article for the Huffington post – Darkness to light. I talk about my darling Saagar and emphasise the importance of us, the people, educating and empowering ourselves so that we can help ourselves and each other through the light of knowledge and empathy. I continue to speak with ordinary people living extra-ordinary lives. Here is a conversation with Sara Muzira, mother of the beautiful Simba. Both, mum and son are artists. She talks about the state of inpatient mental health services in her experience and things that can be made better for patients and their families. Thank you Sara.