Participation holds magical, transformative qualities, #hellomynameis Kath and I’m a Children’s Champion..

This blog is based on a presentation at a ‘Don’t forget the bubbles’ @DFTBubbles online conference on 26/8/20.

I want to focus on you, just for a moment I’d like to get you to reflect. Who (outside your immediate family) believed in you as you grew, who encouraged you to speak up and be heard? What did they do? How did they do it? How did they make you feel?

There’s a wonderful Ted Talk (https://www.ted.com/talks/rita_pierson_every_kid_needs_a_champion) by an educator of over 40 years, Rita Pierson, it’s well worth a listen! Her message? ‘Every child deserves a champion’. She reminds us that every child needs an adult who will never give up on them, who understands the power of connections and insists that they become the best that they can possibly be’.

Significant learning comes from significant relationships, but let’s be in no doubt this is mutually beneficial to the child and the adult.

May I take you back in history? Let’s go back to 1919, Eglantyne Jebb, was a teacher and social reformer. She had a vision to achieve and protect the rights of the children, they were extended in 1954, and in 1989 the UN Convention on the Rights of the Child, a landmark human treaty was ratified. Article 12 highlights their right to express views, feelings and wishes in all matters affecting them and for them to be taken seriously, article 13 highlights the importance of accessible information.

Eglantyne formed the ‘Save the Children fund’, from the outset they listened and responded to Children’s stories of famine in Europe, and over the years extended their work to Asia and Africa. Over 100 years later stories about children’s rights are at the heart of Save the Children’s @savechildrenuk work, and why they continue to have such impact globally https://www.youtube.com/watch?v=U0RnucW3Wn0

We all have a story within us waiting to be told. The Health Foundation’s overview (https://www.health.org.uk/newsletter-feature/power-of-storytelling) on the importance of narrative in healthcare reminds us that an authentic story connects, it unleashes curiosity, taps into emotions and imagination, it uncovers the art of the possible. Stories help us understand and make sense of the world. The telling of a story can become etched in our memory, motivating us to keep improving, it can change mindsets, bringing into focus to what matters most. When someone tells us their own personal story we catch a glimpse of a world that may be radically different to our own. The experience can inspire empathy, neuroscience suggest through connecting via stories we begin to mirror one another, connecting physically as well as emotionally. We relate to an individual’s story, 1st person narratives focus on the individual, rather than on groups such as ‘Young People’, ‘patients’, ‘refugees’ or ‘the homeless’. When we connect on such a personal level the result can be transformative not only for the person telling but for the receiver of the gift of the story too.

So next let’s head to the boardroom, where either around the physical or virtual table will sit professionals with many years of experience and qualifications, yet none of them likely to be under 25. If we’re lucky in that very corporate environment, when the focus is on the 0-25 population, someone may speak up and ask, ‘so what do children, young people and families want?’. A colleague once said ‘well the engagement work has been done, we can use that and push on’. Yet it made me reflect that if we only use the engagement work of others (as important as that is) we haven’t got the magic of participation.

The personal growth and development participation brings to children and young people must not be underestimated, especially to those with complex medical conditions, young people facing economic hardship, those from Black, Asian and Minority Ethnic backgrounds or our children who are looked after for whom we are corporate parents. These young people are those most in need of enriching opportunities to support their growth in confidence, to find their voice and experience the impact of being heard. We must not miss golden opportunities to encourage children and young people, to open doors for and with them, connecting them with peers and youth workers, as well as mentoring, it’s vital social medicine.

Even as health professionals working with children and young people we still view participation through a corporate lens of providing insight, knowing if we seek information on accessing services and then listen and take action it will lead to improved experience and outcomes for current and future service users, yet we know and must continue to share that the benefits of participation are so much broader.

Children and young people who are actively supported to participate in health care acquire knowledge, develop new skills, increase their self esteem and achieve a growing sense of citizenship. It connects them to potential role models and to a glittering array of future employment opportunities. As a result they go on to convey vital health information to the peer groups, their families and communities.

The boardroom must not be a just a passive recipient of engagement work, they must open up to diverse person centred narratives, to expand thinking beyond command and control structures. Boardrooms must open up to stories from children and young people themselves, offering personal development opportunities. When young people speak directly their narratives sit on our shoulders, focusing us on what matters most, issues at the heart of the matter are articulated.

I want to take you to a conference hall in Birmingham, 2,000 professionals watched the narrative of a young lady’s experience of health care, ‘Behind the curtain’ https://youtu.be/vnUmpFP9XsU

The young lady whose experience is shared in the film was sat in amongst the professionals (they didn’t know she was there) and experienced the silence, you could hear a pin drop in the huge auditorium. We debriefed together afterwards, she reflected ‘that’s what I wanted, I wanted others to see and connect with how I’d been made to feel.’ That sense of connection and impact was more powerful that any formal complaint process. The young lady went on to do her nurse training as her confidence in the system was secured, she’s now qualified and works for our armed forces, the power of transformational listening…

Then there’s Gulwali Passarly (@GulwaliP) at 12, his dad, a Doctor in Afghanistan was killed by US forces, the Taliban wanted him and his brother to avenge their father’s death, yet his mother, scared for their futures paid people traffickers to take them to the UK, saying ‘be safe and never return’. Gulwali was separated from his brother the day after they left, and then for over a year endured hardship and incredibly tough circumstances as he travelled to the UK, spending a month in the Calais jungle, being interrogated by UK boarder forces who thought he was too smart to be someone so young, eventually making into foster care, excelling at GCSEs, Alevels & completed his degree at Manchester University. Gulwali a member of our NHS Youth forum taught so many of about the plight of refugees, his Ted Talk (https://gulwalipassarlay.wordpress.com/2014/06/22/tedxmanchester-talk-about-my-journey/) and book ‘The Lightless Sky’ are worth seeking out. Now his charity ‘my bright kite’ helps other young refugees, through his work he has grown to be the most amazing advocate for refugees, fuelled by being heard. He reflects that the toughest of times he faced was when he wasn’t believed.

So as we work to chip away at corporate structures, the powerhouses that rely on data and indicators, let’s not forget the powerful contribution of participation in social medicine. As leaders in child health we can open doors and support young people to ensure diverse, rich narratives are heard, leading to better outcomes on so many levels.

So let’s bring this all together, as we go forward let’s…

1. Think about what’s made a different to you, use that to shape your actions with others.

2. Use our history to inspire us so we keep standing on the shoulders of giants as we continue to make progress.

3. Unleash the power of narrative directly from young people, it benefits services and young people themselves, helping us address inequalities head on.

4. Never underestimate the power of a story to make transformational change and create powerful ripples in the system, stories keep whispering in our ears and hold us all to account.

5. And my final thought, let’s remember that things do not just happen, they are made to happen, it’s up to us to work in partnership with children and young people, using the teams around us the voluntary sector, youth workers, to ensure together we transform child health outcomes.

PS can I give a huge shout out in recognition to Margo Horsley someone who really believes in #VoiceasValue this is a great blog https://www.margohorsley.co.uk/post/voice-as-value-the-people-are-rising-it-s-time-to-listen

And if you want some practical resources, dip in to the work of the @NHSYouthForum https://www.england.nhs.uk/participation/get-involved/how/forums/nhs-youth-forum/

Author: @kathevans2

I’m a Children’s Nurse who is passionate about improving healthcare and life with people who use services. I love getting out in the countryside or to the seaside to promote my mental health and well-being. On a journey to doing 100 marathons (slowly!) & part of team #NHS1000miles (new members always welcome!) I also love charity shopping, cooking and healthy eating too 😉 Sharing thoughts on a range of things that interest me. Comments, challenge, links to further thinking and research are most welcome. Learning and thinking together is always more fun!

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