Wrap-around?

“What can we do to offer wrap-around care to our patients?”

In the live Q&A at the end of the NCISH conference yesterday, this question was asked of the panel. The Chairperson directed it towards me. I can’t remember what I said. This morning I woke up with what I would have liked to say.

For wrapping, we need two things. One, the fabric which we are going to use to wrap and the person we want to wrap. Let’s discuss them one by one.

The fabric

The fabric of Suicide prevention in Health-Care is made up of two things – people and systems. Let’s look at them a bit closely.

People

What are the beliefs of the people?

I know of an ENT surgeon from another country who wanted to move to the UK and the only job he could find was in Psychiatry. So, he is now training to be a Psychiatrist. Is he interested in suicide prevention? Do Health-care professionals believe that suicides are preventable? Are they content that simply by treating mental illness they are doing their job?

What are the attitudes and abilities of the people?

When the Emergency department calls to say there is a suicidal individual waiting to be seen, how do they feel? Are they excited to have an opportunity to make a difference? Or is it a drain on the limited time and energy they have? Do they know how to build a compassionate connection with someone who has lost all hope? Have they received any training in Suicide Prevention? Do they have enough self-compassion to look after someone else well?

Do they have the resources and the knowledge to do a good job?

Do they have access to their past history? Do they have beds on the ward? Can they ask a colleague for a second opinion if they have a doubt about how to involve family or friends in their care? Do they know of other resources, like charities, activities and people that may help this person? Do they have comprehensive and informative leaflet they can share with them? Do they have the means to follow them up?

b. Systems

Does the system have capacity? Are the various parts of the system effective and joint-up enough to be able to hold the person they are trying to wrap or are there big holes in this part of the fabric? Do the various parts of the system share the same mental model, a shared knowledge, pre-suppositions, and beliefs that can be used to help achieve mutual goals? Are their practices evidence- based? Do they investigate deaths with a view to learn lessons and implement change? Do they look after the well-being and emotional health of their employees? Do they hold themselves accountable when things go wrong?

2. The person

Allowing space for them to express themselves. Help maintain their sense of agency. Inform them it is safer for them to involve other people who care for them. Equip them with resources. Give them the support they need. Ask them what would help them? Listen. Sit with their despair. Acknowledge it. Keep them connected with their life as they know it. Keep hope alive for them.

Know that the person at the centre of the wrapping is of great value.

Information is useful if it becomes knowledge. Knowledge is useful when it becomes wisdom. So, let us not stop at information.

Ref:

Reaching common ground: The role of shared mental models in patient safety : https://journals.sagepub.com/doi/full/10.1177/2516043518805326

Timely rain.

Posted by kidsaregifts20

We had a proper tropical shower last week. I hadn’t seen such joy, relief and excitement from this simple act of nature before. The magic was in the timing of it. It came just when the coffee plants were thirsting to come into full blossom and release their fragrance to fill the atmosphere with Jasmine. Only in films had I seen one single rain shower give rise to such elation.

Yes. Coffee is in bloom. But I’m sick of my yo-yoing fever and this unpleasant cough. My body keeps stretching out to do all the things it wants to but it keeps getting pulled back into itself because it doesn’t have the strength. Maybe I need to raise my aspirations, then the Universe will provide more energy. Maybe I need to increase my desire to move and dance and sing and travel and trust that the body will be supported in that. Maybe I need to keep writing more of the nonsense I write so that I’m out there in the world of words and the right ones can find me. Maybe I need to keep showing up for myself and nicely saying NO to unnecessary stuff when I need to. Maybe I need to sit still and rejoice in the breeze that’s dancing with the trees. Maybe I should simply tune into the voice of the birds resonating with excitement. Maybe I need to be fully present in my body, a 100% here, unconditionally.

Before all of that, maybe I need to give my body the permission to fall ill, offer myself the care I would give someone I love, be patient and breathe with myself as though I was my own child. Excuse me, I need to make myself another cup of ginger tea.

It’s a story. It’s not a story.

Posted by kidsaregifts20

Last weekend I was part of a team of volunteers. The Compassionate Friends hosted a summer retreat for parents who have lost a child to suicide or substance use. We expected seventy parents to arrive, some as couples, some by themselves. Many of us drove for many miles through road works and traffic jams. Some changed trains more than once and persevered through serious delays due to fatalities on the tracks on two successive days. Even though their own hearts ached, they traveled from all over the UK to Leeds.

The venue was a new one, Hinsley Hall. It was true to the pictures on its website – majestic. Having never worked there before, many of us arrived a day prior, to familiarise ourselves with the space and allocate rooms to activities depending on their size and suitability, getting to know the staff and setting out folders, notice boards and programes.

The job at hand was to belong to those who attended and have them belong to us. I went up to my room and drew the curtain. I gasped at the view. My window looked over a deep-green lawn with dark old trees and two parallel hedges with patches of yellow.

As the participants arrived through the gates, we welcomed and escorted them despite their visible anxiety and fatigue, a reluctance to acknowledge their eligibility to be here, attending this retreat. Slowly, cups of tea, coffee and glasses of water loosened the atmosphere.

At the Writing workshop, words like ‘disassembled’ and ‘brown silt’ were shared and felt. A bronze sculpture of a young woman in the courtyard, standing with her arms wide open was a constant encouragement to open our hearts.

Over the next couple of days, each of us felt seen, listened to, acknowledged and our grief felt witnessed. Friendships were born. There was much laughter and many tears flowing through truck-loads of memories. Grace was at work. It was allowing something within us to soften and relax.

At the end, one mum said she met some lovely people and found much comfort and connection. Another said, she met herself, this time with gentleness.

Being there, volunteering, was a good way to honour Saagar’s life and mine. What better way to spend our days than to hold our kids, ourselves and each other in a warm embrace?

I am here. He is here.

The C – Word

Posted by kidsaregifts20

It might explode like a grenade thrown into a small room. I worried that everyone might be put right off by it. They might log out, log off, shut their laptops and go for a walk.

What do you mean ‘Celebrate’? What is there to celebrate? Nothing. NA – Not Applicable.

After a severance such as this. The death of my child? How can I? To me, it does not apply. I belong to another club now. Here, the air is laden with a sense of exclusion and non-deserving. Here, the rejection of invitations to celebrate is automatic.

Memories of our kids. The foods they loved, toys, TV shows, films, books, nursery rhymes, practical jokes, school and Christmases. Our hugs. Sweet stories revealed through their friends after they died. Their hidden kindnesses. Laughter. Tears. A whole life worth remembering. Worth honouring. Celebrating.

What of us? Parents. Alive. Old labels stripped off and new strange ones slathered on. The ground beneath our feet taken away and replaced with quicksand. Our identity shattered. Life in the After becoming something resembling life. An unthinkable exile. Aloneness, inside the non-understanding of the world. Every day, a fight. A reconciliation. Every day, showing up and facing whatever shows up. Keeping the broken bits of our hearts held together with the glue of love inside our silently sighing chests. Still alive.

The invitation at the Circle of Remembrance was to celebrate ourselves for being here. Now. It did not go off like a granade in a small room. No one left in a huff. It was accepted graciously. At the end of an hour and a half, the virtual space was filled with acknowledgement of things to celebrate – our love, patience, resilience and compassion reflected in this poem by Lucille Clifton written in the 1960s. We can replace ‘nonwhite and woman’ with any other phrase:

won’t you celebrate with me

what I have shaped into

a kind of life? i had no model.

born in Babylon

both non-white and woman

what did I see to be except myself?

i made it up

here on this bridge between

star-shine and clay

my one hand holding tight

my other hand;

come celebrate

with me that everyday

something has tried to kill me

and has failed.

PS: Circle of Remembrance is an international online peer-support group for bereaved parents that has been effectively working for the past three years and four months. Please visit the website http://www.core-community.com to learn more. Please recommend it to any parents you know who might be struggling alone after a tragic loss.

Meeting old friends for the first time.

Posted by kidsaregifts20

Meeting old friends for the first time. In at least three dimensions. Sharing a physical space together, not just a bland rectangular screen. Actually holding hands.

“Gosh! You’re for real!”

The sparkling smiles of recognition mixed with disbelief. The hugs offering heart to heart resuscitation and healing. Sitting down side by side on the sofa, sharing stories, tea and cake.

A year ago, this could have been fiction but last weekend it was fact. While volunteering at a retreat for Bereaved parents hosted by The Compassionate Friends, we finally met people we’ve only ever seen on Zoom. It was held at the simple and serene Woodbrooke Centre, a Georgian manor house in Selly Oak, Birmingham with tall trees, beautiful flower beds and a family of geese perambulating the grounds, intermittently honking. It is a Quaker centre and has a poster in the main foyer which reads “Nameless helping the Nameless”.

The garden in front of the main house has a labyrinth mowed into it. Early on Saturday morning, birds were singing and the light was inviting me into the open. I decided to walk bare feet into the center of the labyrinth. I took my shoes and socks off at the edge of the circle. As soon as I started walking, it turned into an extremely mindful experience as the ground was littered with geese droppings.

The silence in that place was sweet and the views a treat. We talked about the importance of finding meaning. We shared the joys and challenges of taking the inward road. We watched a film and sang together. We wrote from our hearts and created pretty little candle holders for our kids from jam jars at the crafts table. We cried and laughed, reassured that in this company, it was completely acceptable to do both, sometimes simultaneously.

A pleasant exchange. Giving and receiving with compassion. Understanding. Belonging. Learning. Holding the utter magnificence of life in one hand and the absolute devastation in another. That’s what this game is all about, I guess.