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.

An immersive experience.

I have felt safe outside lakes, rivers and oceans as opposed to inside. Shoes and woolly socks keeping the feet warm and dry, a scarf wrapped around the neck, jeans and jackets keeping me secure. These water bodies are a source of calm but I am suspicious of their invisible currents, innocent iciness and deceptive cleanliness.

Ten days ago, we drove to a little self-catering rental cottage at Constantine Bay in Cornwall, 100 yards from the beach. After a quick cup of tea we took a walk on the windy sea-face, almost swept off our feet. Its playfulness hit my face like multiple mini-darts. It must have hit some obscure part of my brain that suddenly came to believe that it would be a great idea to have a soak in the sea. This was strange given I can’t swim. I splash my arms and legs enthusiastically without staying afloat or traveling any distance. My breath gets all confused and erratic. I choke and splutter and cough. I am clearly a creature of the air. Not water. But this had to be done.

The next day, high tide was at 1834. We took our wedding rings off and left them at home as they are known to slip off in cold water. The  winds were low. Air temperature 10 degrees Celsius. Water temperature same. Sun, in and out. No rain. We changed into our improvised swimsuits, got our towels and walked to a quiet lagoon at one end of the bay that we had spotted the day before. A steep set of steps led down to it. At the bottom, sloping slate-grey rocks lay dry. Welcoming. The force of the waves was dampened by an intervening row of irregular black rocks, making the water as still as possible, lapping gently to the beat of the sea. The salty air resting on my lips and in my chest. My heart preparing to be stopped.

With my eyes focused on the sharp horizontal line between the blues of the sea and the sky, I walked straight into the Atlantic. I wanted to be neck deep in an instant and I was. An involuntary squeal escaped my throat. Coming to myself I breathed slowly with my eyes wide open. Counting. Smiling. Shaking. Completely inside that stark moment. Everything else dissolved. All of me was covered in acupuncture needles. Every swish of the waters stole some more heat away, deepening those needles infusing energy. The shock of it. And the delight of being alive. Woohooo!

40 seconds… once… and again. Then 2 minutes and then longer… and longer every day.

(Ref: TIPP Skills to modulate emotions: https://www.manhattancbt.com/archives/1452/dbt-tipp-skills/)

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