I hate my shoes.

(‘A pair of leather clogs’ by Vincent Van Gogh 1853-1890)

“I am wearing a pair of shoes.

They are ugly shoes.

Uncomfortable Shoes.

I hate my shoes.

Each day I wear them, and each day I wish I had another pair.

Some days my shoes hurt so bad that I do not think I can take another step.

Yet, I continue to wear them.

I get funny looks wearing these shoes.

They are looks of sympathy.

I can tell in others eyes that they are glad they are my shoes and not theirs.

They never talk about my shoes.

To learn how awful my shoes are might make them uncomfortable.

To truly understand these shoes you must walk in them.

But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes.

There are many pairs in the world.

Some women are like me and ache daily as they try and walk in them.

Some have learned how to walk in them so they don’t hurt quite as much.

Some have had to wear the shoes so long that days will go by before they think of how much they hurt.

No woman deserves to wear these shoes.

Yet, because of the shoes I am a stronger women.

These shoes have given me the strength to face anything.

They have made me who I am.

I will forever walk in the shoes of a woman who has lost a child.”

  • Author unknown.

One death by suicide is one too many. On World Suicide Prevention Day, today, let us start by

  1. believing that suicides are preventable.
  2. knowing that we all play a part, however small, by being aware, educated and resourceful.
  3. being kind and courageous enough to ask the ‘S’ question, listen and respond.

Same story

“Three weeks before that day he was at a bridge and he called his friend who called the police. They came out but just told him to call the GP. One week before that day he called another friend saying he had a panic attack. The friend picked him up. Four days before that day they told the GP what was happening. She gave him a prescription for anti-depressants and said it would take 3 weeks for a referral. 4 days later my brother was dead. At no point did anyone tell the family.”

That day was sixteen days ago.

I wonder if anyone sat down with him to listen to what was going on with him. Two friends, one GP and the Police – none of them could put him in touch with his life and keep him safe. Yes. Ultimately it is up to him but I wonder if he was told that it might be helpful to get in touch with his sister, his brother, his mother, his father – the people who had known him all his life. That he could choose someone who he had a deep connection with, someone he trusted, and let them know how fragile he was at present. Someone who truly cared.

I wonder if you’ve seen this recent advert from St John’s ambulance where a dad is desperately trying to save his son. It encourages lay people to learn First Aid, in case of a physical health crisis. It’s a good one.

Save the boy”

Let’s put this in the context of doctors not knowing how to give First Aid to someone in a Mental health crisis.

The police not knowing that this is life-threatening, that there are resources in addition to the GP, like A&E, Maytree, Papyrus, Samaritans, CALM, their community, their family.

The GP not knowing that this is life-threatening, that there are things in addition to antidepressants that help, like having a proper conversation, exploring the suicidal ideation, informing them that it would be in their best interest if they included a family member or a friend of their choice in their care, giving them details of helpful Charities, giving them compassion and hope, drawing up a Safety Plan, getting in touch with the local Mental Health Crisis Team and  being aware that antidepressants can make things worse for young people in the short term.

Over-medicalisation of suicidal thoughts and behaviours in a setting where most medics are uneducated and unsupported in managing these crises.

Save the boys and girls by insisting on education for all professionals in medicine, nursing, law-enforcement, prison service, youth services, social work, for schools universities, hair-dressers, cab-drivers, students, parents, teachers, managers and everyone else is the only way to get it right – A multi-agency approach to Suicide Prevention.

In the USA, ‘legislation’ was recognised as essential to Suicide Prevention(SP) in 2012. At present, 10 states have legally mandated training for all health care professionals.

ASIST Training (Applied Suicide Intervention Skills Training):

CHIME

132 billion pounds = money saved for the UK by unpaid carers.

6.5 million = number of carers in the UK.

6000 = number of people who become carers every day.

1 in 8 adults are unpaid carers for a family member or friend.

Carers UK call them ‘The Second NHS’.

Yet, do we or the Health Service truly value them? Listen to them? Include them? Give them a voice? Understand their concerns? Treat them as an ally? Respect their abilities and contributions? Answer their questions? Educate them? Empower them? Support them? Partner with them as well as we could? Sadly not.

In my experience and that of many other families of individuals with a mental illness, the power imbalance between the health care providers and the service users does not allow for an equitable relationship. Hence, denying the patient the best chances of recovery. There is national and local evidence that proves that carer engagement saves lives.

Triangulation of services is essential for best outcomes for patients and professionals. Risk averse practices may help reduce risk in the short term but may increase risk in the long term. A recovery approach to risk and development of a “life worth living” may have longer lasting benefits through rebuilding relationships, increasing service-users skills and confidence in collaboration with carers.

Norfolk and Suffolk Foundation Trust (NSFT) have developed a program called “Stepping Back Safely” up-skilling staff, carers and service-users. It is based on five main drivers of Recovery: CHIME

  • Connection
  • Hope
  • Identity
  • Meaning
  • Empowerment

NSFT are offering free training in Stepping back Safely in July 2021 on-line. Having heard many stories where a life could have been saved only if there was a meaningful and effective communication between the three parts of the Triangle of Care, I think this training is most relevant and essential. I shall be taking it as I am sure it will deepen my understanding of the subject. If you or anyone you know might like a point of contact, here it is: catherine.phillips@nsft.nhs.uk

Changing the Conversation.

First versus second.

Medical versus human.

Symptoms versus experiences.

Problem-based versus Trauma-informed.

Here is an example of language, describing the same thing in two different ways.

First:

“I was 15 when I started to suffer with mental illness. I went to see a psychiatrist who told me that I had something called Schizophrenia. For a couple of years my symptoms got really bad and people were afraid I was going to hurt myself so I was hospitalised. They stabilised me on meds and shock treatments and sent me home. For a long time, I didn’t get sick again.

Later, as an adult, I started to get symptomatic again. I got pretty psychotic and once again got put in hospital. They told me there that I was really sick and should go on disability. For a long time, I was pretty sick but then started to be able to manage my symptoms.”

Second:

“I was 15 when I started feeling different than others and really alone. For a couple of years after that, I would do things in pretty extreme ways. They made sense to me based on what I was thinking and feeling but I guess it was scary for others who didn’t really understand what I was thinking and feeling. I got put in a hospital. There I really lost hope and beliefs about being a ‘regular’ person. They put me on a lot of medication that made me sleepy all the time. After I left, I threw out all the meds and put my intensity into music.

Years later, coming out of a difficult marriage I started to have similar kinds of experiences as the ones I had as a kid. I had really strong feelings and felt pretty separate from others. I got put back in the hospital again. I was told I had a major mental illness and that I should go on disability. Though I did that for a while, I realised that I was just going along with their beliefs rather than looking at how I’d come to think in certain ways. Little by little, I figured out what to do with my intensity and I’ve been really growing ever since.”

Each one of us is simply at a different place in our growth and development. Using language that is personal and descriptive of our experiences enables shared understanding. It forces us to think of ourselves and others more broadly as human beings, free of labels and assumptions.

Reference:

Intentional Peer Support: https://www.intentionalpeersupport.org/?v=79cba1185463

Blue Rose

She was the colour of almonds. Her smile so bright, it made the sun shine. Her hair waist-length, wavy and a very dark brown, like a heavy veil down her back. Her petite frame, shy, smelt of sandalwood. She was only 19.

Her friends had rebellious red, pink and green highlights in their hair. Some had happy multi-coloured beads and braids woven in. Others had playful ribbons platted in, like flower-girls at hippie weddings. She sat on her aquamarine blue sofa with her laptop, peering through colour-charts. She wanted her hair dip-dyed. She hadn’t picked a colour yet.

It was going to cost a bit but her mum had agreed to pay for it. She often did.

When alone in her room, unable to sleep at 2 am, Rose had looked up Helium and what it does. She didn’t know why. It was an involuntary act. It was nonsensical. Her body and mind were no longer of her.

Her hair appointment was in a couple of hours. She had to decide now. It was important she got this right. It was an expensive decision. The staid Royal blue or the scintillating Moroccan Turquoise? Silky peacock blue or the majestic sapphire? She wanted a straight horizontal line to run right across the dark sheet of her hair. The bottom one-third of the length a startling shade of blue, like a designer curtain.

She played classical music on the violin. Her ears didn’t particularly savour the Blues. They jarred her. She didn’t have a taste for blueberries. She preferred the ‘rasp’ variety with big dollops of double cream. Her wardrobe was a smattering of whites, pinks and reds. No blues there either, except the denim jeans and shorts. She was a proper girlie-girl. Blue skies made her spirits soar. But they left blue stains on her heart. She hid them like children hide pretty pebbles in corners of drawers. Her smile kept feeding the sun through the blueness.

She hand-wrote letters to the people she shared the house with, in blue ink. To her mother she said how wonderful a mum she was and she should take better care of herself. To her sister she expressed her appreciation for her companionship, friendship and laughter. Her little brother never left her side. She never turned down his invitation to play any kind of silly game with him. The dogs were all hers. They didn’t know they weighed as much as her. She had to sit down when they clambered all over her saying ‘we love you’.

The blue stains on her heart were expanding like drops of ink drip-dripping on a white blotting paper. She knew it was happening but didn’t know what it was. It’s creepiness had no name. It made her want to escape. It compelled her thoughts to convince her that her deepest desire was to implode. She had no say in the matter. It made her hands look up Helium on the internet. It kept her eyes wide open at night. It made her tummy churn, her legs restless and her head hurt. She now had 2 hearts and she moved between them. One blue. The other not. One wanting out. The other wanting blue hair.

“I am finding this difficult Mum.”

‘We need to leave in about 20 minutes for the hair-dressers my darling.’

“Yes. I am thinking about it … looking up the options on the internet.”

‘Good idea. We can take your laptop with us. I am sure the hair-dressers will have some ideas for you. Don’t worry.’

“I have some ideas but haven’t decided yet.”

‘Take your time. No rush.’

Midnight blue was the final choice. She was happy.

Over the next year that wretched blue embedded deeper into her heart and from there, leached into every cell of her body. Then it burst out, released itself and merged back into the midnight, the sky, the ocean.

That was 5 years ago. Till this day, her mother’s mind twists into painful knots when she remembers that day. How could her lovely Rose have wanted to live with blue hair and at the same time, to not live at all? At nineteen! How?

No one knows. Sometimes it’s like that.

———————————–

A video for every parent: https://www.youtube.com/watch?v=3BByqa7bhto

Human rights issue – Families Matter

Hundreds of times, in waiting rooms outside Intensive Care Units I have looked into the eyes of sons and daughters, spouses and partners of patients, held their hands and said, “We did all we could. I am so sorry for your loss.”

When Saagar died, no one looked into my eyes and said that to me. They had not done all they could for him. The hospital carried out a sham investigation, a futile exercise in ‘being seen’ to be doing the right thing.

The GMC found everything to be hunky dory. The doctors ‘looking after’ Saagar had done their jobs to perfection. Just too bad the patient was dead. They did not deem Saagar’s case worthy of an investigation. GMC’s role in its own words:

We work to protect patient safety and support medical education and practice across the UK.”

The Coroner’s report shone some light on the holes in Saagar’s care. It clearly pointed out the things that South London and Maudsley (SLaM) Hospital got wrong.

  1. There was a general failure to identify the diagnosis on the discharge summary from the Home Treatment Team to the GP.
  2. There was a general failure to communicate thoroughly enough with the parents about the relapse symptoms, what to watch out for and where to go for help in the future.

Last June, I wrote to the CEO of SLaM, requesting an update on the changes that had been made in his organisation in response to the Coroner’s findings above. He said someone would get back to me and I heard nothing. This June, I sent him a reminder and again he said someone would get back to me and I am still waiting.

What are my rights as a parent? Is this too much to ask?

What were Saagar’s rights as a young man with a mental illness?

Are our lives not as important as anyone else’s? Black or white or brown? With Cancer or Diabetes? Or Bipolar Disorder?

Everyone deserves to be heard and seen. With respect.

It’s not charity. It’s a human rights issue.

Ref: Learning from deaths: Guidance for NHS trusts on working with bereaved families and carers

India – talking Mental Health.

Asian countries account for more than 60% of world suicides.

According to the WHO, in the year 2016, suicide was the most common cause of death in the 15-39 age bracket in India, the highest in the South-East Asian region. India’s own official statistics, which map the number and causes of suicides in the country, have not been made public for the last three years, hindering suicide prevention strategies and efforts to implement the WHO’s recommendations in this regard.

In 2014, the WHO released a report with a series of recommendations for successful suicide prevention. It proposed a public health model for suicide prevention, consisting of four steps:

  • Surveillance
  • Identification of risks and protective factors
  • Development & evaluation of interventions
  • Implementation

India has not progressed beyond the first step. Lack of political will, social stigma and inadequate mental health awareness in the general and medical communities contribute to the continuous rise in the death rate of young people by suicide in India.

A Junior Doctors World Congress was held at my alma mater, Christian Medical College Ludhiana in April 2019. Si and I ran a Mental Health Workshop that was attended by 75 medical students from India and the wider South and South East Asia region. 

Motivated by this event, some students have established community mental health support networks and mentorship programmes at their respective institutions.  I am impressed with their passion to make a difference.

Here is an example:

Early March I was back in Delhi and was honoured to be invited by Shruti Verma Singh, the founder of a Youtube channel, Zen-Brain.com. She is determined to increase the emotional awareness in India and does it gently, through a series of interviews. We met one afternoon to talk about Saagar. I hope her work will help wake up the government, break social stigma and drive understanding and compassion.

Nowhere to go.

On the 9th of March, I reached Melbourne for the second leg of the Churchill Fellowship. I had been looking forward to it for ages and just couldn’t wait to get started. I had the taken the whole month off. Despite the long journey I didn’t feel any fatigue. My AirBnB was homely and comfortable. After a good night’s sleep, I was ready for work.

The Beyond Blue Office was easy to find. After a brief introduction to the team, we all went out to get coffee together. I was already one of them and the coffee was great. The following days flew past with meetings, interviews, presentations and briefings. A trip to Headspace. Despite some background murmurings of a virus, I was having the best time, learning and exchanging thoughts and ideas. Then Australia closed its borders. Meetings and conferences started getting cancelled.

On the 16th, I took a return flight to London.  My trip shrank from 3 weeks down to one. I had to miss Sydney altogether. Now, I am back here with a blank diary for 2 weeks and I am loving it. I have volunteered myself to work and I am on standby.

I can now research and look up things I’ve been meaning to for a long time. I can clear out one cupboard every day and get rid of stuff I don’t need or use or get joy from. Unclutter and create space in my house and my head. I can go to bed without setting an alarm. That pile of unread books that’s been sitting atop my table, feeling ignored and giving me dirty looks, can now be tackled.

Part of me is rushing in to fill the time with a list of a hundred things to do but I am consciously slowing down. Having an easy routine. Fitting in things I love doing, like arranging flowers. Making time for friends. Cooking. Walking. Not getting hooked to the media but keeping an eye. Writing hand-written letters to loved ones. Sitting still. Enjoying our home. Truly appreciating the weirdness of our cat, Milkshake. Cherishing having breakfast, lunch and dinner with Si as he works from home.

Simplify. Make easy. Make plain.

The Way Back – supporting attempt survivors – an idea worth adopting.

Mental – I – zation

He was 15 when his Hungarian parents thought it would be best for him to come to live in the UK with another family. His parents were refugees in Paris and he in London. World War 2 had ended a few years prior. The times were turbulent and many people were having to make difficult decisions.

This boy did not speak English. He landed up amongst strangers, completely inhibited, unable to do well in school. He was teased and taunted by his contemporaries and no one understood him. At 16, he became seriously suicidal. He had a plan. One day a neighbour noticed that he didn’t look great and encouraged him to speak to someone at the Anna Freud National Centre for children and families.

 “The therapist who saw me could see beyond the struggles and see another person, see they had certain competencies and capacities, and that, if you removed some of the inhibitions, the self-defeating behaviours, and got access to my more positive side then I could do quite well,” he remembers.

Prof Peter Fonagy is now a leading contemporary psychoanalyst who has propounded and researched the theory and practise of ‘Mentalization Based Therapy’ (MBT). He is also Chief Executive of the Anna Freud Centre for Children and families. In simple words, mentalization is the effort an individual makes to understand someone else’s thoughts, feelings, hopes, beliefs, desires and behaviours. It is the ability to mind other minds, to understand misunderstandings, to see the impact of our behaviour on others, to see oneself from the outside and others from the inside. MBT is said to be especially helpful in the management of Borderline Personality Disorders.

The things that block mentalization are, firstly, the strong feelings of anger, shame and fear. And secondly, defensiveness, not wanting to know what’s going on in another person’s mind.

I can see how mentalization could make each and every relationship work. Not just the ones we have with others, but also the most important one, the one we have with ourselves.

Our own voices

Paramedics and trainee paramedics rotate through our Department of Anaesthesia to learn to manage airways safely. A few weeks ago, I had a young man in his mid-thirties, a trainee paramedic with me, learning about airway management. Out of curiosity I asked him, “What is the most annoying part of your job?” He was straight-up, “When people inflict injuries on themselves, I think it’s such a waste of time. It takes away from others with real problems, who really need our attention.” I just smiled. I wasn’t surprised. I know full well that paramedics do a great job of looking after all kinds of people in all kinds of trouble. But attitudes can only be changed through education.

A professor of Psychiatry tweeted today “Twice in the last week I’ve been told of cruel comments by health staff to people who had self-harmed. I really believe this is unusual now but it shows there is something deep-rooted that we have to eradicate.” A classic example of ignorance within medicine of attitudes within medicine.

No training of first responders is complete till someone with lived experience of a mental illness has spoken with them, be it a police academy, social workers, fire fighters, nursing or medical students or ambulance crew. Lived experience includes suicide attempt survivors, others who have experienced a suicidal crisis and those who have lost a loved one to suicide. Sharing by these individuals can be a powerful agent for challenging prejudice and generating hope for people at risk. It enriches the participant’s understanding of how people with these serious disorders cope with their symptoms, recover and lead productive lives with hope, meaning and dignity. The program also empowers those who are faced with mental illness and provides living proof that recovery is an ongoing reality. Presenters gain confidence and self-esteem while serving as role models for the community.

Disproportionate focus on research and clinical expertise too frequently fails to see the person at the centre of a crisis as well as their loved ones who ride the wave of terror of suicidal behaviour. This needs to change and with urgency.

Lived Experience is an underutilised and underappreciated resource in the UK.

Roses in the ocean, a charity in Australia is an excellent example of harnessing this invaluable resource and making a huge difference.