Bedtime stories

All those decades ago when I was at school, bullies were visible. Their names were known. They were often big built and their demeanour, unpleasant. Girls could be bitchy, forming little clubs ousting this one or that one depending on how jealous they were of them. The playground was the scene for most unplayful activities. Lunch time was about much more than just lunch.

The only respite was that I knew when I left school I could leave it all behind and come home feeling safe. I wouldn’t have to deal with all that unpleasantness that went on at school.

Now, bullying happens over the electromagnetic waves all times of day and night, incessantly with no breaks. It can reach toilets and bedrooms. The instigators don’t have to have names or forms. They can be cowardly as hell and yet have the mean pleasure of bullying vulnerable people. The abusive messages are often un-erasable, making it possible for the victim to visit them repeatedly and being humiliated and traumatised over and over again. It is inescapable.

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In Arabic, ‘Sarahah’ means ‘honesty’. It is also a highly trending app for anonymous messaging, invented by Mr Towfiq (above) from Egypt. He says it was designed so people could have honest feedback on their strengths and weaknesses from their colleagues at work. But in the west it is the perfect platform for anonymous nastiness.

Here is some honest feedback on the App:

“The site is a breeding ground for hate.”

“I don’t recommend going on here unless you wish to be bullied.”

“Parents, don’t allow your kids to get this app,”

“This is an app breeding suicides.”

This powerful film entitled Bedtime stories by PAPYRUS emphasises the importance of keeping our children safe from online bullies.

Let’s play Politics!

National Confidential Inquiry into suicide and homicide in people with mental illnesses 2016:

In-patient suicides:

Suicide by mental health in-patients continues to fall, most clearly in England where the decrease has been around 60% during 2004-14. This fall began with the removal of ligature points to prevent deaths by hanging but has been seen in suicides on and off the ward and by all methods. Despite this success, there were 76 suicides by in-patients in the UK in 2014, including 62 in England.

Suicides after discharge:

The first three months after hospital discharge continue to be a period of high suicide risk. In England the number of deaths rose to 200 in 2014 after a fall in the previous year. Risk is highest in the first two weeks post-discharge: in a previous study we have shown that these deaths are associated with preceding admissions lasting less than 7 days and lack of care planning. There has been a fall in post-discharge deaths occurring before first service contact, suggesting recognition of the need for early follow-up. In all there were around 460 patient suicides in acute care settings – in-patient and post-discharge care and crisis teams – in the UK in 2014.

First of all I want to say that every suicide is a huge tragedy and must be prevented at all costs. Behind each of these numbers are precious lives and beautiful people. I don’t allow myself to forget that even when I am angry. This blog is a mere observation on how I have seen politics being played in front of my eyes in the last week. In light of the above findings, in consultation with his expert advisors and in all his wisdom, Mr Jeremy Hunt has decided to focus his attention on in-patient deaths – a group that is manned by the most highly trained professionals in a very controlled environment, a group that is on the list of ‘never-events’, a group that has already shown a decrease by 60%, a group where even a small reduction in numbers will amount to a big percentage and will make him look good.

With all good intentions, he has converted a healthy aspiration of Zero-suicide in the community to an unhealthy target for in-patients creating huge anxieties. Last week at the NSPA conference I heard Mr Hunt speak in the most self-congratulatory of tones about how wonderful it is that UK is the first country to legislate for ‘Parity of Esteem’. I am sorry Sir, that means nothing on the ground. The workforce coming in contact with the majority of suicidal people in the UK is largely untrained. They don’t even know how to talk with them, let alone ‘look-after’ them. The massive funding cuts focus on mental health which in turn results in poor training of junior doctors. When questioned directly about ‘parity of training’, he masterfully slips and slides away.

In my eyes you don’t look good Mr Hunt.

 

 

 

Bad doctor!!!

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Despite check-lists, protocols and guidelines, mistakes happen. As long as human beings carry out jobs, mistakes will happen. To err is human. Safety is an outcome of a person’s attitudes and actions within a given environment. Both, the person and the environment have a strong impact on each other and the outcomes. The bad mood of one person affects the whole team. Similarly, a stressful milieu for any reason such as lack of time and resources has a direct impact on the performance of each person in it.

In my 19 years in the NHS, the working conditions and morale amongst the staff have gradually worsened.  When things go wrong, clinicians, being visible on the frontline are expected and often willing to take responsibility. Holes in the system and staff morale are hidden. Only on a closer look are they clearly seen.

I sit in a unique position where I work for the same organisation that is at least partly, if not fully responsible for the fact that my son is not in this world any more. Yet, I know and see many doctors and nurses work way beyond their call of duty. However, our very own GMC took the case of a paediatric registrar, Dr Bawa-Garba to the High Court, supposedly in the best interest of the public. She had looked after 6 year old Jack Adcock before he tragically died of severe sepsis under her care. Her Counsel summerised:

“The events leading to [Dr Barwa-Garba’s] conviction did not take place in isolation, but rather in combination with failings of other staff, including the nurses and consultants working in the CAU that day, and in the context of multiple systemic failures which were identified in a Trust investigation.”

Yet, the high court convicted her of ‘manslaughter by gross negligence’.

A blog by concerned UK paediatric consultants stated that:

“On this day: Dr Bawa-Garba did the work or three doctors including her own duties all day and in the afternoon the work of four doctors.
On this day: Neither Dr Bawa-Garba (due to crash bleep) nor the consultant (due to rosta) were able to attend morning handover, familiarise themselves with departmental patient load and plan the day’s work.
On this day: Dr Bawa-Garba, a trainee paediatrician, who had not undergone Trust induction, was looking after six wards, spanning  4 floors, undertaking paediatric input to surgical wards 10 and 11, giving advice to midwives and taking GP calls.
On this day: Even when the computer system was back on line, the results alerting system did not flag up abnormal results.
On this day: A patient who had shown a degree of clinical and metabolic recovery due to Dr Bawa-Garba’s entirely appropriate treatment of oxygen, fluids and antibiotics was given a dangerous blood pressure lowering medication (enalapril) which may have  precipitated an arrest.”

The case has now been put to the Court of Appeal.

So, whose fault is it? No handover, no induction, no senior support, temporary nursing staff, poor IT services, shortage of doctors … whose fault is it? Obviously the doctor’s. Why this huge disparity in the way in which hospital doctors are treated as opposed to the others? It’s not ok for the sickest of patients to die in a hospital whereas fit and healthy young men and women are allowed to die in the community with not an eye-brow raised.

Parity of esteem? Bollocks!

 

The Change

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It’s January. It’s cold, damp and dark. I feel tired all the time. All I want to do is hibernate – sleep, read, potter around the kitchen drinking endless cups of tea, listen to the radio and watch films. Is this normal? Are other people feeling the same way? Most people I talk to say they do. Those who routinely exercise, like Si, are the ones that look happy and buoyant. They strongly recommend exercise. I promise I am thinking about it.

Could it be an under-active thyroid? Am I anaemic or is this natural for this time of year? 51 is the average age for levels of oestrogen in women to drop. Could this be incipient hormonal chaos? No personal weather system yet. That must be good news.

However, the symptoms of menopause can start up to 4 years before and carry on for many years after. Just as puberty is a difficult time of change, so is menopause. Feelings of irritability, fatigue, anxiety and depression are common. Juggling a demanding job, ageing parents, teenage kids and a full- fledged household can be stressful. Collectively or individually, they can all bring on tiredness, worry, insomnia and low mood. It’s easy to overlook menopause as a cause.

Many women struggle around this time as they may be confused by their symptoms. The problem is often compounded by the fact that they are poorly understood by their partners, kids, employers and colleagues. Many are wrongly started on antidepressants without addressing the cause of the problem or the side effects of the medication.

Hormone Replacement therapy (HRT) helps with most symptoms but is associated with a higher incidence of Breast Cancer. It is the recommended remedy but is controversial. It’s best to read about it and consult a gynaecologist. The joys of womanhood!

Books:
“Is it me or is it hot in here?” by Jenni Murray
“How hard can it be?” by Allison Pearson

 

 

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.

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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