Treatment versus Care

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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

Silk resembles love.

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Rose petals

Couple of years before he died, Saagar thought I needed to see a therapist. He didn’t explain why. At the time I couldn’t figure out what he meant. I guess he could see that I did not know how to access the sweetness of life. I allowed preoccupations of work and practicalities of life to fill my time, leaving little room for love.

Painfully delicate and surprisingly strong, silk resembles love. The silkworms destroy the silk they produce as they emerge from their cocoons. That is why farmers have to make a choice between silk and silkworms. Often they kill the silkworm while it is inside the cocoon so as to pull the silk out intact. It takes the lives of hundreds of silkworms to make as scarf. But for the silk to survive, the silkworm has to die.*

At a small and sweet ceremony, in the middle of nowhere, in the presence of twenty people, holding the holy fire as witness, Si and I tied the knot yesterday. It was a joyous day, a celebration of love.

On the previous night the moon was full. Saagar was with us.

“Sorrow prepares you for joy. It violently sweeps everything out of your house, so that new joy can find space to enter. It shakes the yellow leaves from the bough of your heart, so that fresh, green leaves can grow in their place. It pulls up the rotten roots, so that new roots hidden beneath have room to grow. Whatever sorrow shakes from your heart, far better things will take their place.” – Rumi

*Ref: ‘Forty rules of love’ by Elif Shafak.

If all the world’s a stage…it has props.

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download In the background stands a majestic Palladian structure in brick red. It’s nearly 400 years old. The artistic roof displays beautiful finials, turrets and cupolas. It’s easy to imagine the large atria and sweeping staircases on the inside. It appears as if this building emerges from an expansive lush green sea.

The cricket nets are placed to the right of this building. Many hours have been spent here, laughing, picnicking, practising, talking, spectating and playing. Multiple recordings of his bowling action have been made here, each scrutinised to the nth degree by him. Each one distinct to his discerning eyes but all identical, to my lay ones.

In the fore-ground sits a TV screen with ‘Friends’ playing. He likes Rachel. I think she plays the role of who she is in real life. Not much acting ability required for that. He doesn’t understand that. He thinks I don’t like her. I like Phoebe. We both love ‘Smelly cat’. He watches it when he is down. I see why. However feeble, it always brings a smile to his face as it does to mine now. However predictable, it doesn’t fail to amuse, to lighten the heart. The impression of a head is clearly formed on the red velvet cushion resting at the corner of a black leather sofa.

At centre-stage, a pink and silver drum-kit sits atop a hand woven black and white Moroccan rug. 2 goblet drums wait in the wings – a Djembe and a Darbuka. A set of initialled drum-sticks read ‘SN’. Big round black bags lean against the wall. They weigh half a tonne. They encase special cymbals – presently silent but given half a chance, fully capable to raising the roof of not just our house but also that of the neighbours.

A fake snake coils on the study table with its tail realistically hanging off the edge. It has been used successfully to blow the living day-lights out of people of all ages, shapes and forms, on many occasions. It took me 2 years to immunise myself against it.

An unwieldy ragged cricket bag with wheels at one end lazes against the wall. One entire shelf in the cup-board is dedicated to cricket gloves, balls and other paraphernalia.

The sun streams in from 2 big sky-lights and the space is lit like a sanctuary. A silver Apple Mac laptop lies gaping on the study table with funny cat-videos playing. It’s connected to the dome of Harman Kardon speakers which hide under the table. An assortment of coins, head-phones and keys splash across the dark wood table top. A few coffee mugs are scattered around the room with various shades and degrees of dry brown coffee lining the insides.

Behind the door is an overflowing willow laundry basket. A pair of union-jack boxer shorts shine through. The space smells of an unkempt temple with a male caretaker – hints of incense, musk and testosterone. From the door hook hangs a towelled maroon dressing gown.

All the props are here, tell-tale signs of a life. Where’s the main man? At a subtle level, his absence is only physical. His essence is present.

It’s in all the props, in the air around them, in the luminosity of the room, in everyone he touched, made jokes with, played music with, was kind to and loved. In the glow in my eyes, the light in my heart. In me.

His essence is here. I only need to close my eyes. This must be immortality.

“Do you not know that a man is not dead while his name is still spoken?” – Terry Pratchett

(Ref: A fully referenced, peer reviewed article published in an educational, medical journal for GPs; a case study of a young man called SN to demonstrate the importance of Suicide prevention training and the role of human factors in patient safety: http://journals.sagepub.com/doi/full/10.1177/1755738017724183.)

Day 977

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Rebecca

Rose Polge. Rebecca Ovenden. Lauren Phillips.
All junior doctors. All deaths by suicide, in just over one year.
The only three publicly known. Total number not known.

Polge’s mother linked her suicide directly to conditions at work – exhaustion because of long hours, work related anxiety, despair at her future in medicine and the news of the imposition of a new contract on junior doctors.

This problem is not limited to the UK. Earlier this year, 4 deaths within 5 months in Australia propelled the launch of an urgent investigation into the problem. No such investigation in the UK. Indeed, the law here explicitly excludes suicide from the requirements to report work-related deaths. A GMC report in 2016 stated that the low morale amongst junior doctors was putting patients at risk. Signals of distress and a dangerous level of alienation are an indication that the system cannot simply go on as before.

At the 2017 BMA junior doctors’ conference, delegates gave the union a mandate to lobby for all suicides to be investigated formally by their employer, jointly with the GMC, Health Education England and the BMA.

In France, workplace suicides are a well-recognised entity.
Yes. Suicides are complex. There can be many contributory factors. But when there is clear evidence of a link to work pressures, that should be given appropriate attention.

Ref: BMJ Article: Suicides among junior doctors in the NHS followed by an interesting discussion.

Day 963

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Wysa

A young couple, committed to making a difference used their love and intellect to create Touchkin, Artificial Intelligence for proactive care, integrating behavioural health into medical practice.

Tom Insel, a psychiatrist from National Institute of Mental Health (NIMH), the world’s largest mental-health research institution, spoke frankly about how MH services and research were failing to help the mentally ill. He openly dismissed the DSM (Diagnostic and Statistical Manual of Mental Disorders). At any given moment, roughly one in seven of the world’s 7.5 billion people is struggling with mental illness. “We’re not going to reach all those people by hiring more psychiatrists,” says Insel. But we might reach them with smartphones.

In one of his talks, Insel was sharing the intricacies of the delicate workings of the brain. Someone interrupted him and said, “You don’t get it. The house is on fire, and you are discussing the chemistry of the paint”

Jo Aggarwal, one of the developers of Touchkin says:

“This line from the article resonated deeply with me. It’s a familiar sentiment – one many of us in development have had in conferences on employment, education, conflict. They are all at some level connected to the base fire that engulfs our world today – that of mental health. Until this fire is brought under control, we don’t have a hope for any of the rest of it.

His dramatic move lends credibility behind the idea that phones may be the answer. Identifying issues using smartphone behavior is powerful, though it can feel creepy. But detection is not enough. In our trials at Touchkin, phone sensors were able to predict depression in people with diabetes to a 90% accuracy, and went a long way in getting the physicians convinced to integrate mental health into their regimen. But only 1 in 30 people diagnosed went on to take treatment for the depression.

It said to us – “The house is on fire, the fire brigade is missing, and here we are saying how accurate our fire alarms are”

Wysa the emotionally intelligent penguin willed itself into existence somewhere along the way. It was a side feature created between ‘formal’ projects to improve accuracy. Taken by how people reacted to the prototype, we all kept working on making it better… in three months it crossed a threshold. It started changing lives. Last month, 3 people wrote in to say it saved their life, it is what is keeping them from suicide. Over 50,000 people talked to it anonymously, and thousands of them wrote in to us to say how much it meant to them.

Unlike the Stanford psychologists creating Woebot- we have no hypotheses around Wysa. It is evolving entirely based on what works for its users. It has evidence-based techniques, but everytime we add more tools or advice or tips we get users telling us to just let them talk to Wysa, and not to underestimate how much of a difference that makes.

“The fire in the house, is in our brains. The fuel is the language of the conversations we have inside our head. “

We started out, like Insel, trying to detect the fires… Wysa is leading us to try and put a fire extinguisher in everyone’s pocket. Any pretence of our own hypothesis went out of the window when the first person wrote in to say it saved their life. Now we are following it to see where it goes.

Like us, like Tim, there are many unwitting recruits to this fight.

Rick Little started fighting it as soon as he graduated college. So many of my friends… Sangeeta Mahajan who lost her son to suicide and has dedicated her life to preventing it for others. Anjana Ajay who is changing others lives after healing her own Stage 4 cancer by focusing on healing her mind. Bhavana Issar who is doing amazing work at Caregiver Saathi.Pooja Goyal who is creating resilience in pre-school children and their parents, bravely facing all the storms that come her way. Archana Aggarwal Sarda has made emotional support a way to get intl level diabetes outcomes in rural children, long before she realised that she was doing it.

None of them are psychologists. They each have options of more comfortable, lucrative ways to spend their time. They are all powerless to not do this. “The house is on fire. Once you see it, and you realise that you can stop it spreading, it is hard to do anything else.”

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Day 962

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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 21^st 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

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.

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.

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.

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.

Carers’ perspectives should be part of the training curriculum for junior doctors and medical students wherever possible.

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.

Decision making around the timing of discharge should be properly scrutinised, as premature discharge could have disastrous consequences.

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.

GPs must also understand the importance of engaging with carers, listening to them, and sharing important information.

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.

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.

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.

At Coroner’s inquests, the trust should send representatives who have a deep knowledge of the case and who will not hide behind jargon.

Day 956

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Death seems to be all around me. It has seeped into my bones. My thoughts are filled by it. And my feelings. Yet, I don’t understand it. It is so many things in one – intrigue, loss, finality. While it is an essential part of life, why has it flooded my being? Standing under an old oak tree, my back against its barrel trunk covered in rough bark, eyes closed, I beg for a shred of the silent ancient wisdom it holds. Its roots connect me to grieving mothers everywhere. I see their shattered hearts, vanished futures and hollowed rib cages mirror mine. The globe is covered in a blue fishnet of grief.

Helen Dunmore, a poetess, writes about death, staring it in the face with calm and courage as cancer takes home in her body. She wrote this poem 12 days ago, 12 days before Death took her in her arms.

Hold out your arms

Death, hold out your arms for me
Embrace me
Give me your motherly caress,
Through all this suffering
You have not forgotten me.

You are the bearded iris that bakes its rhizomes
Beside the wall,
Your scent flushes with loveliness,
Sherbet, pure iris
Lovely and intricate.

I am the child who stands by the wall
Not much taller than the iris.
The sun covers me
The day waits for me
In my funny dress.

Death, you heap into my arms
A basket of unripe damsons
Red crisscross straps that button behind me.
I don’t know about school,
My knowledge is for papery bud covers
Tall stems and brown
Bees touching here and there, delicately
Before a swerve to the sun.

Death stoops over me
Her long skirts slide,
She knows I am shy.
Even the puffed sleeves on my white blouse
Embarrass me,
She will pick me up and hold me
So no one can see me,
I will scrub my hair into hers.

There, the iris increases
Note by note
As the wall gives back heat.
Death, there’s no need to ask:
A mother will always lift a child
As a rhizome
Must lift up a flower
So you settle me
My arms twining,
Thighs gripping your hips
Where the swell of you is.

As you push back my hair
– Which could do with a comb
But never mind –
You murmur
‘We’re nearly there.’

Day 953

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Discrimination at all levels

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All anaesthetic drugs work in mysterious ways. They mainly work on the brain. One of them is Ketamine. I have used it many times as an anaesthetic and to treat resistant pain. It’s relatively safe even in hands with limited experience. It’s used in all age groups. It’s known to cause ‘Dissociative’ anaesthesia and pain relief. It works through blocking NMDA (Glutamate N-methyl D-aspartate) receptors. Unfortunately, it is known to cause tolerance and dependence. It is also used recreationally.

Recent studies have shown that Ketamine has a significant beneficial effect on patients with treatment-resistant Major Depressive Disorder(MDD). The improvement is often seen within 4 hours of administration. This is the subject of many recent research papers but much more needs to be done.

It is estimated that about 3% of the UK population, nearly 2 million people suffer from depression. A small proportion of them, about 158,000 have depression that resists treatment. Currently, only 101 people are able to access ketamine in Oxford. About 40% showed sustained improvement after taking it.

It is potentially life-changing treatment for those suicidally depressed. Michael Bloomfield from UCL says “Unfortunately, medical research spending for mental illnesses is extremely low compared to other medical conditions. Clearly this needs to change if we are to improve treatments in the future.”

Day 952

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A surgeon’s wife writes

The Dark side of Doctoring is an insightful blog written by a surgeon.
The common themes that push doctors into dark despair are:

1.Loss of control.
2. Loss of support. 6am. Repeat.
3. Loss of meaning.

One would think that those who look after other people would know how to look after themselves and their colleagues. Not so at all.

Thank you Dr Eric Levi.

Day 944

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The Great Master

All I manage to read these days are short stories. Partly due to my abbreviated attention span and partly because the time has come when I ‘should’ start wearing reading glasses but I don’t. I get by, by increasing the font size and by reading for short periods of time. Also by squinting a lot.

‘The First Forty nine stories’ is a collection by the Nobel prize winner, Earnest Hemingway. In the preface he says, “In going where you have to go and doing what you have to do and seeing what you have to see, you dull and blunt the instrument you write with. But I would rather have it bent and dull and know I had put it on the grindstone again and hammer it into shape and out a whetstone to it, and know that I had something to write about, than to have it bright and shining and nothing to say, or smooth and well-oiled in the closet, but unused.”

After devouring the collection, I read up about him and was saddened to find that he suffered with depression and died of suicide. Here’s an example of the sensitivity and vulnerability of his characters and the simplicity of his story telling style. It’s called ‘Cat in the rain’.

https://soundcloud.com/user-474898075/new-recording-2