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

Watch it!

After a long wait, we can watch it. Not in a cinema but on the largest screens available in our homes. You might know that a few years ago we set out to make a short documentary on the life of Saagar and our lives after him. I am so happy that it can now be watched at the link below by clicking on the box that reads 1000 days and entering the password as suggested: hiddenFF2021

https://www.festivalreel.org/hff-2021

Presently this film is available through the Hidden Film Festival website but in time it will be a resource to increase the understanding of suicide and bereavement by suicide and the value of kindness. I hope it will generate constructive, life-affirming and healing conversations. It is 20 minutes long and is available till Friday, the 4th of June. At present it is doing the rounds of international film festivals and has been selected for 7 major ones. Thank you for holding Saagar in your hearts the way you do. For shouting out love and hope.

Cast: Freddie, Hugo, Seb, Sam, Bex, Rosie, Azin, Simon, Saagar and I.

Filmed and produced by the magical duo Jeanette Rourke and Ron Bambridge.

What some people have said:

“I cannot get the film out of my head (in a good way!). I am really impressed with the professional job done on the filming and opening drone shots of where you live etc.”

“It is beautifully made and the editing done with such sensitivity. I also loved the music – definitely sounded like a professional music for film composer.”

“Thank you so much for the film and it really brought me a lot of comfort especially  in a rough week like today when I have grief burst. I am grateful to have to know you in this difficult journey and what you have been sharing about your beautiful Sagaar, your thoughts and your journey milestones has helped me tremendously.One thing I learnt from 1000 days is that the hope of surviving this unsurvivable pain which you gave me through your story. Thank you so much Sangeeta.”

Thank you all for funding this film. For illuminating this world in your own special way!

PS: Please feel free to share it on.

Twenty-seven

Dear Saagar,

It was your 27th birthday, last Thursday. You would have been 27 years old. You were 27. You are 27. Which one is it? None of the above? All the above?

You were a Presence eons before you were born as Saagar and you will be one for ever more. You are Awareness, beyond form and name. I am the same. There is no separation between us – both ageless, placeless and traceless. Untouchable. Unknowable.

Didn’t take that day off work this year. Woke up and thanked the blessed day for you, your life. On the beautiful bike ride to work, the heart overflowed with love and gratitude. Had a full productive day at work and another lovely bike ride home. Sat on your bench in the evening under the circle of trees bathed in the slanting rays of the setting sun. Felt the love.

Thank you for bringing me the true experience of love.

Yours,

Mamma.

“When love beckons to you, follow him,

Though his ways are hard and steep.

And when his wings enfold you yield to him,

Though the sword hidden among his pinions may wound you.

And when he speaks to you believe in him,

Though his voice may shatter your dreams

as the north wind lays waste the garden.

For even as love crowns you so shall he crucify you. Even as he is for your growth so is he for your pruning.

… Like sheaves of corn he gathers you unto himself.

He threshes you to make you naked.

He sifts you to free you from your husks.

He grinds you to whiteness.

He kneads you until you are pliant;

And then he assigns you to his sacred fire, that you may become sacred bread for God’s sacred feast.”

  • Khalil Gibran

PS: Please like and retweet the link below if you can. That will give a media presence to this short documentary film, ‘1000 days’, which is based on this blog and has been made with the intention of bringing us all closer together in love, kindness and understanding so that no one reaches a point where they can’t find a way to live another day. You will be able to see the film in late summer, once it has done the rounds of a few film festivals across the globe. Thank you very much.

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

Not before 12th April

Building up to today, hope of movement. Till this morning, half-fearing the radio might say – it’s been cancelled. After nearly 13 months of this regulation and that and then the other, bungled numbers coming from unreliable sources, u-turns based on dodgy science, I am not sure what is to be believed.

This morning I opened my eyes to snow descending like down-feathers, dancing and swirling outside my window. Wow! There is hope. A clean, fresh start.

As an anaesthetist, over the last few months I’ve been speaking with patients, re-assessing their fitness for the operations that they were supposed to have March 2020 onwards, which have not happened yet but will hopefully happen soon. Several of them have had to live with painful knees and hips and other uncomfortable conditions for at least a whole extra year, unable to move around and exercise. Many of my patient’s health has deteriorated over the last year. They have gained substantial weight, some are drinking much more than before. A few have decided not to have their operations as they are worried about visiting the hospital, leave alone be admitted, for fear of getting the virus.  

A few got Covid and have recovered fully while a small proportion have lingering issues. Others have discovered new health conditions like heart disease, diabetes and asthma. Some elderly patients have developed new ‘minor’ issues after having the vaccine, like loss of balance, making independent living impossible. So many have lost confidence.

The incessant repetition of “you may be next to die a terrible death alone soon” on TV and radio has filled the psyche of the populace with terror. The thorn of fear has made a home in so many chests. It’s easy to put it there but difficult to pull it out. How insiduously our greetings have changed from ‘Have fun!’ to ‘Stay safe’.

Monday, a good place to start afresh. May we find the courage to recover, open and experience life in all its fullness in the coming weeks and months.

“Avoiding danger is no safer in the long run than outright exposure. The fearful are caught as often as the bold.” -Helen Keller

We don’t know it yet.

(A government advertisement which has now been removed)

“We’d better finish in time today. I have tickets for Nitin Sawhney at the Southbank Centre this evening. Would be nice to grab a bite beforehand. Isn’t it Sod’s law that when you have plans, something is bound to crop up and stop you getting there?”

Once upon a time, we made plans. We co-ordinated and arranged a time and place to meet with friends. After work, we visited places, had conversations, chilled out at book shops browsing through poetry and fiction, we waved frantically as we spotted each other in crowds, across a sea of heads. We buzzed in the excitement of the bar and lounge in theatres before the show began. We pre-booked drinks for the interval. We patiently queued outside toilets. We unexpectedly ran into people we knew but didn’t expect to see. We leant into the ushers with our tickets, showing them the number and taking directions to our seats. We squeezed past people apologising as our handbags and knees gently bumped against each other. We quietly admired a dress or a pair of earrings here and the unmissable drama of a sparkling peacock-blue eye-shadow at the base of long brushy eye-lashes there. We hushed as the lights went down. We waited for the curtains to rise. We lost ourselves in the surreal sets, the crazy costumes, the transformative talent, the perfect precision, the heights of the high notes, the tangential takes. The sheer magic of it.

We came back, changed. Enriched. Enthralled. Expanded. Elevated.

That was a long time ago. They say ballet dancers are being encouraged to re-train in cyber-security, singers are venturing into soft furnishings and sound technicians now have the lucrative opportunity to be delivery drivers. Their jobs evaporated.

The pandemic and the response to it are killing people. What else is being killed? Can it be measured? How much of it is revivable? When?

Poverty and the Mind

Vikram Patel is a psychiatrist and a Professor of Global Health who works tirelessly to improve the mental health of people living in low and middle income countries like India and Ethiopia.

His recent research has found that all countries are ‘developing’ countries when you look at the low proportion of the health-budget they spend on mental health. Some wealthy countries may have better systems of care for maternal and child health but overall, mental health remains universally, at the end of the queue.

At present, COVID has overtaken all other agendas. However, now more than ever before, there is a recognition of the two-way relationship between poverty and mental ill-health. This may be a historic opportunity to get this right.

The relationship between poverty and mental ill-health is a complex one. How can we distinguish a normal response to poverty from a disease process? Poverty can increase the risk of poor mental health via multiple pathways, for example, poor physical health, high levels of noise pollution, violent neighbourhoods, insecurity and humiliation.

Can an increase in income improve mental health? Yes. It can but it needs to be sustained.

The fact that having a mental illness may induce poverty is less well recognised. It may affect one’s education and hence, employment opportunities. In low and medium income countries, health care is paid for by people. Due to the length of time it takes to find an effective treatment, much effort and money is wasted in doctor-shopping. Depression is inequitably distributed in society but not recognised as such because wealthy individuals also get it. We accept that long term expensive therapies cannot be delivered to the poor, so what’s the point in studying them?

After nearly a year of job-losses, the number of people below the bread-line all over the world will increase by tens of millions. In India alone, the gains made in economic growth over the last decade are predicted to be wiped out this year. The historically disadvantaged will fare worse, suffer more.

We can expect a surge in mental health problems like we did after the 2008 global financial crisis, mainly led by suicide and drug misuse. Sir Angus S Deaton, a Nobel prize winning economist wrote extensively about these deaths of despair. Economists and global health experts warn that this one will possibly be far worse.

In India, while the state is spending all its energies on the pandemic, livelihood-based organisations are finding very poor mental health in their members. Taking a broad, multidisciplinary approach to depression and anxiety rather than viewing it through the lens of a medical specialty is the need of the hour. Policies all over the world need to de-medicalise the emphasis on specialists and empower front-line providers and communities to enable them to foresee, identify and address this problem.

The bi-directional relationship between mental health and finances means that appropriate mental health interventions can improve finances. Can we persuade policy-makers world-wide to listen to global health experts and economists, look at this fast-approaching  avalanche and steer policies to protect those who are being and will be hit by it?

Talk: Poverty and Depression (https://voxdev.org/topic/health-education/poverty-and-depression-how-improving-mental-health-can-help-economic-wellbeing) – this talk was available till last night but has since disappeared.

Research Papers:

  1. Angus Deaton on the Financial crisis and the well-being of Americans (June 2011):

https://www.nber.org/papers/w17128

2. Vikram Patel on Causal evidence and mechanisms of Poverty, Depression and Anxiety (May 2020):

https://www.nber.org/papers/w27157

Catriarchy

His dad was Russian royalty. Since the age of six weeks he could tell the difference between gourmet and ordinary meals, silk and cotton stoles, real and fake woolen throws, synthetic and down duvets, the warmth emanating from humans and radiators. He could tell if he had the full attention of his staff or not. He still can. He knows how to get them to do what he wants without saying a word, be it opening the door for him or being stroked at the back of his neck.

For entertainment, for a short while the laser pen was fun but very soon he let us, his staff, know it was cheap and silly. He wants action, involving blood and gore. He’s out hunting, bringing home trophies of half-dead mice, baby sparrows and often a big gash somewhere on his body.

He knows he’s good-looking. His James Bond swagger gets exaggerated when he knows he’s being watched. He sits like a statue when he’s being talked about but his upright ears change direction like a satellite dish. If he’s in the mood he humours our affections but prefers that we stick with our duties.

I do believe that he needs to check his cat-privilege. For centuries, cats have pretended to be domesticated while all the time exploiting humans. It’s about time we, as humans did something about it. I am in the process of designing an ‘unconscious bais’ training for him while at the same time preparing myself to be royally ignored. He has a clear preference for male company. It has been communicated to me in no uncertain terms that I am ‘extra’.

Named and reared by one of the finest specimens of the human species, he is a Maharaja of the Kingdom of Two. We celebrate his majesty, Mr Milkshake, paws, claws, whiskers and all. And his surrogate mum, Saagar today and every day.

Happy Christmas. xxx

“What?”
Summer 2013

The Golden Buddha

Once upon a time, far in the east, there was a country called Sayam. In the capital of this country there was an ancient temple of the Golden Buddha. People made long pilgrimages to visit this temple. Everyone knew of it and wanted to see the massive golden statue of the beautiful Buddha within.

One day the news came that a fierce foreign army was approaching the capital. The monks and devotees got together and quickly covered the statue from head to toe in mud and dirt. They made it look ordinary, with every bit of gold out of sight. It now looked dull and drab with no sparkle at all. It even gave out a peculiar odour that had to be camouflaged with incense.

Yes. The army made a huge clang as it arrived in the city with tonnes of ammunition and aggression, looking to plunder anything of value. A platoon of soldiers with armour and swords rode into the temple and looked around like hungry dogs. They found nothing of interest. Just an old dirty statue. They rode out and away.

Over time, new monks and devotees arrived. The old ones forgot to take the mud and dirt off. They forgot to tell the new ones about it. For years and years the Golden Buddha remained in hiding until one day, a young monk was deep in meditation a few feet away from it when he heard a crashing noise. His eyes opened and he saw that a bit of the mud had cracked and fallen off. Smashhhhh…onto the floor. He saw the left hand of the statue glinting in the dim evening light. He walked up to the statue and took a closer look. With eyes as wide as coins he ran out to get the others to see what he had seen. All of them got to work and took the mud shell down to reveal the awesome, pristine Golden Buddha.

This parable reminds us that we are all born pure and all-knowing, one with the divine. Over time we get conditioned to wear the shells or labels of ‘man’ or ‘rich’ or ‘silly’ or ‘mother’ or ‘short’ or ‘engineer’ and so on. Until one day something comes along and cracks the casing, making the gold within visible. Then we can’t help but keep picking at the dirt as nothing else satisfies us. We keep peeling the layers of muck away bit by bit by bit, till it’s all done and we are free.

To my brothers … lean on me.

This video was made after a spate of suicides by senior NFL players in the USA as they were starting to feel the effects of Chronic Traumatic Encephalopathy (CTE). Michael Irvin spoke from the heart without a script and his truth is visible.

If your isolation is getting the better of you, know that you are not alone. You are loved, silently. Reach out your hand and they will be there.