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?’

We have further information on doctors’ well-being and our doctors for doctors services

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.

khalilgibran1

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.

 

 

 

 

 

 

 

 

 

 

Day 989

Accidental findings

The_ACE_Pyramid

In the mid 80s, Dr Vincent Felitti ran an Obesity clinic in America. Many people enrolled and hundreds of pounds were shed by them. But he found that the drop-out rate from his programme was as high as 50% despite good results. He did not understand this and went back to look closely at patient notes.

“I had assumed that people who were 400, 500, 600 pounds would be getting heavier and heavier year after year. In two thousand people, I did not see it once. When they gained weight, it was abrupt and then they stabilized. If they lost weight, they regained all of it or more over a very short time.”

The turning point in Felitti’s quest came by accident. He was running through yet another series of questions with yet another obesity program. How much did you weigh when you were born…when you were in first grade…when you were in high school…when you first became sexually active…

One female patient replied – “Forty pounds” and broke down in floods of tears, “I was four years old.” He found similar common themes emerging from various stories and went on researching this subject for the next 25 years.

The obese people that Felitti was interviewing were 100, 200, 300, 400 overweight, but they didn’t see their weight as a problem. To them, eating was a fix, a solution like IV drug user calls a dose a “fix”.

Eating made them feel better. Eating soothed their anxiety, fear, anger or depression – it worked like alcohol or tobacco or methamphetamines. Not eating increased their anxiety, depression, and fear to levels that were intolerable. For many people, just being obese solved a problem. In the case of the woman who’d been raped, she felt as if she were invisible to men.

Felitti went on to further explore the  impact of childhood trauma on people and coined the term – ACE, Adverse Chilhood Experience. He found a strong co-relation between the number of ACEs and early death.

aceslist

acedepression

Film: https://www.youtube.com/watch?v=v3A_HexLxDY