Together for Short Lives, the UK’s children’s palliative care charity, has launched a free, first-of-its-kind training package to help health and care professionals have better conversations with families of terminally ill children.
‘Children’s palliative care: learning to communicate with families’ employs a broad range of content developed in collaboration with families, including scenario role play with professional actors. By using the package, health and care professionals in generalist roles will be better able to interact effectively and be more aware of the children’s palliative and specialist care services to which they can signpost.
Together for Short Lives has developed the resource after families told the charity that having conversations about their child’s prognosis or illness are often handled poorly and that they regret not being given the opportunity to ask questions and let the information really sink in.
A poor experience of communication can live with families forever, and when communication breaks down, misunderstandings and conflict situations can occur.
Katie Tallowin, Head of Education at Together for Short Lives said: “Delivering bad news to families is never easy. When parents are told their child may not reach adulthood, life is suddenly turned upside down.”
“Busy health professionals understandably feel unprepared or lack the confidence to have these sensitive conversations with families about their child’s care and support. They may be unfamiliar with the complexities of children’s palliative care or unsure how to approach discussions in a compassionate, supportive way.”
“That’s why, with professionals both within and outside of children’s palliative care, and with families caring for a seriously ill child and those bereaved, Together for Short Lives has produced this vital new tool. We know that we can’t change a child’s diagnosis, but we want to make sure that families have the best experiences possible when communicating with professionals like paramedics, health visitors, social workers and first responders. It is crucial that any generalist health or care professional who works with seriously ill children uses our new resource now to make these crucial conversations the best they can be.”
One of the parents who was involved in the production of the package is mum Georgina, whose son Osian received palliative care. He died in March 2023 at just over a year old: “It was really important for me to be involved in a project like this as I know, personally, that these conversations are so important to a families’ experience. For me, honesty was always key to good communication, and having the confidence to tell me if you don’t have all the answers. I know how useful this new tool is going to be, and that so many families will benefit from it.”
JPMorganChase’s Tech for Social Good team drive impact in the community through the skills of their tech workforce. Taking part in their Force for Good program, we partnered with a team of 10 talented technologists for 8 months who helped us create this user-friendly digital platform ensuring healthcare professionals and caregivers can better support the families of life limiting conditions.
The training can be accessed here – https://learning.togetherforshortlives.org.uk/
Together for Short Lives is encouraging those that participate to share it with peers and colleagues across the NHS and beyond.
Osian, Georgina’s son.
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About Together for Short Lives
Seriously ill children and their families deserves the chance to live a full life, supported by care that enables them to thrive.
But for many, it’s a lonely and isolating experience. Parents and siblings struggle in a system that doesn’t meet their uniquely challenging needs.
That’s why we’re here – to make sure they can access high quality children’s palliative care, when and where they need it. Step by step, hand in hand, day by day, so that no one has to face living through their child’s short life – and death – alone.
Together we support families through difficult times, offering lifeline practical, emotional and financial help. And, when they’re ready, we connect them to our incredible community – people who really get what they’re going through.
Together we unite our sector. We help professionals and services to pool their knowledge and expertise, to deliver outstanding children’s palliative care. We are collaborative and inclusive, we push boundaries and lead the conversation to find new and better ways of doing things.
Together we campaign to make sure that seriously ill children and their families get the care and support they need. We rally the community and give people a voice. And where the system falls short, we demand change.
Supporting, uniting, campaigning, together. Because time is short.
We are Together for Short Lives.
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