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In this session NCMD Deputy Director Vicky Sleap unpacks some of the common challenges professionals face when deciding whether a factor is truly modifiable, clarifies what the updated guidance recommends, and walks through several real‑world examples that frequently arise in reviews.

You can download the slides here.

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This presentation was given at the 20th World Congress of the European Association for Palliative Care in Prague.

Presented by Heard, this webinar draws on narrative research and cognitive science to explore how professionals can use framing to improve people’s understanding and decision-making around children’s palliative care.

Attendees said:

Thank you for the opportunity to reflect upon my own practice and tools which I can adapt to my work, and thank you for helping me to recognise the personable things we try to do for families really do make a difference. I will share some of these insights with my colleagues who may not feel as comfortable as me in commencing these discussions. 

Thank you for a powerful presentation, we never stop learning as professionals working with families in palliative care.

I really appreciate the time and consideration given for this session. It was really helpful and lots to think about.

This series of videos, which includes edits for professionals and for families, helps to clarify the lessons learned from NCMD data into distinct and actionable points that parents and carers can follow. Paediatrician Dr Carly Fertleman looks at Sudden Infant Death Syndrome (SIDS) and deaths due to trauma and accidents.

For professionals

This video training is aimed at professionals who interact with families, and gives them the details they need to better advise anyone who cares for children.

Key points for families: Safer sleep

Key points for families: Preventing accidents

For families

This series of videos breaks insights from the NCMD data down into manageable, shareable lessons aimed at parents and carers on the subjects of safer sleep and reducing accidents.

Safer sleep

Safer Sleep Introduction

Co-sleeping

Safe Sleeping Positions

A Safe Cot Part 1

A Safe Cot Part 2

A Safe Cot – Bedding

Temperature Control

Safe Sleeping Environments

Keep Baby Smoke-free

Product Safety

Back To Sleep Campaign

Reducing accidents

Accidents introduction

Bath Safety

Water Safety

Nappy Sack Safety

Dog Safety

Dangerous Products

Choking – Food

Choking – Objects Around the Home

Blind Cord Safety

Falls

Holiday Safety 1

Holiday Safety 2

Terri Banks, Mum

I remember so vividly the day my first born child, Ben arrived, it was April fool’s day, but he was no fool!

The joy and immense feeling to want to protect him, was overwhelming and as a young Mum I wanted to prove that I could and would cope with the demands of a new baby.

Watching him sleep, his chest rising and falling, counting every breath and then panicking if his breathing falters. Regularly feeling that lovely soft spot on his head in case it indicates that something is wrong. Inhaling his newness all tied up in milk, talcum powder, nappy cream and sweet baby sweat.

Taking immense pride in everything he does, his first tooth, first word, first step, first nappy-free wee, first day at school.

And so it continued over the years, revelling in his achievements, celebrating his milestones, panicking less, panicking more then panicking less again.

Relaxing, enjoying, nothing can touch him, the risky years are over, the protective bubble shimmers, and you take your eye off the ball.

Then one day the bubble bursts, your worst nightmare unfolds before your eyes and you are helpless and can do nothing to save him because he dies with no family member with him, he is surrounded by medics and nurses who work tirelessly to bring him back to life, whilst you, his Mother his protector is oblivious.

This time the magic kiss won’t work, this was the end of life as I knew it.

My beautiful 16 year old son Ben, 6ft with piercing blue eyes and a dimple that when he smiled lit the room up was gone. No goodbye, no “love you always” nothing, a life just ended in the most brutal way.

Ben had been dating a girl who had favoured him over another boy, the boy couldn’t take the rejection, so after a day of drinking alcohol and with the help of 2 adult relatives, thought it would be ok to hunt him down and kill him. No other reason than someone who couldn’t control his jealous emotions.

After the further trauma of a trial with a guilty verdict, I hit rock bottom. I resented looking out of the window and seeing families going about their daily business, laughing and enjoying life, my coping mechanism were my 2 daughters but I just longed also for the family to be whole again. I missed Ben so much I didn’t think I would survive.

My marriage crumbled (sadly not unusual after the death of a child) and I found The Compassionate Friends (TCF), a national charity providing support to bereaved parents and siblings. I attended a support group and a national gathering and formed lasting friendships with parents in the same situation, a club that none of us wanted to be in. The TCF saved me from my own misery, saved my sanity and gave me strength to carry on, I had 2 daughters and they needed their Mum.

I never thought I would laugh again but I do, I never thought I could talk about Ben again without crying, but I do. There are and always will be the difficult questions like “How many children have you got?” I always say 3, two on earth and one in Heaven … yes it can be awkward for the receiver of the answer, but I cannot and will not deny his existence to prevent a few blushes and silences.

Ben’s death has changed the whole trajectory of my life including my career. It has made me value friends, it has made me lose some too. He guides me daily and I ask him for help at times (obviously not out loud!)

My eldest daughter gave birth on the 20th May 2023 and secretly I prayed for a boy, I got my wish and Otto Benjamin was born just after midnight. He looks so much like Ben, I almost feel that I have a little piece of him back and I have never stopped smiling since I held him in my arms.

Thank you for reading this, Terri.

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