Ordinary people

Once upon a time there was an ordinary person. Making a living, being honest, spending time with the family, having a few friends and simple pleasures. Nothing special. Just ordinary.

Then they lost their child to the monster of unbearable pain. They carried on breathing and giving and receiving love. There was nothing ordinary about that. They couldn’t bear the thought of the same thing happening to anyone else. So, they went out to tell the stories of their angels to everyone. To exhibit the smithereens of their bleeding hearts. That was not easy or normal but they did it anyway. To say that there were other options that they wish their kids had been encouraged to explore. To give out the phone numbers of the good people out there who can help. To remind everyone that there was hope. There is hope.

These 3 dads were ordinary people. Now they are walking together for 300 miles over 2 weeks, making waves all over the country, connecting with people, smashing the stigma and sharing the stories of their lovely girls. Ordinary and beautiful. Just like you.

Please listen and take a look at what’s possible when love speaks and acts.

Not ‘them’ and ‘us’. Just ‘us’.

It has been a dream to be face-to-face, talking about Saagar with the Psychiatric community. In the past 7 years that has not really happened. On Wednesday, the 15th of September, I got as up close as possible with an entire department of roughly 100 psychiatrists and Therapists at differing levels of experience and practice. They were in New York and I was here, in London. The Grand Round was organised by a colleague, Prof Mike Myers, who gave it the title:

‘Losing a Son to Suicide: How One Mother is Opening Hearts and Minds Around the World’

After a cordial ‘meet and greet’, the film ‘1000 days’ was screened. It was followed by complete silence. Same as the previous time it was screened. And the time before. Each time the audience was left speechless.

After a long minute I gently stepped in with the assurance that this was a normal response. I invited questions and comments. I thanked them for the work they do and acknowledged how difficult it is for the profession to deal with such losses. I shared my hope that the film will deepen their insights into the human element of such deaths and the value of forging partnerships with bereaved families.

What followed was a fulsome, creative and holistic exchange of ideas.

“What led you to make this film and share your life in this way?” one young Resident asked me.

“I could only work with what I had and do what was in front of me. When I could write, I wrote. When I could speak, I spoke. When I could learn, I learnt. From the moment I heard the news of Saagar’s death, my only intention was that this must stop. No one should have to suffer the way Saagar did or the way I and his friends do. This film came about because it’s time we recognize that these lives are worth talking about, that the desire to end one’s suffering is a normal human desire and that we all have a role to play.”

Winner – BEST DOCUMENTARY – Swindon Independent International Film Festival
Winner – Brighton Rocks Film Festival – Spirit Award
Winner – Compassion Film Festival Colorado – Reflections of Love People’s Choice Award
Nominee – Morehouse College Human Rights Festival Atlanta (winners yet to be announced) 
Semi Finalist – Gold Coast International Film Festival – New York 
Nominee – Long Story Shorts International Film Festival 

Upcoming festivals where the film can be watched starting 23rd September 2021. Tickets available now.

‘1000 Days’  
Morehouse College Human Rights Film Festival – fosters ongoing discussions about human rights and social and political issues.
September 23 – 25 https://morehousehumanrightsfilmfestival.com/2021-film-guide/

‘1000 Days’ at Women Over Fifty Film Festival:
WOFFF is an inclusive, international film festival celebrating women over 50 in front of, and behind the camera.
25 Sept – 2 Oct – tickets on sale
https://wofff21.eventive.org/films/61379c142c09f100b90ae7c4

Comments:

”Bringing people closer and keeping them deeply connected despite social isolation.”

“Keeping the silk threads of human bonds as strong as ever.”

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.