At Together for Short Lives, we believe the most meaningful change happens when the people closest to children’s palliative care have the power to shape it.
That’s why our Advisory Council is so important. Recently relaunched and refreshed, it is a jargon-free, family-led forum where lived experience sits at the centre of every discussion — and where diversity of voice is central to everything we do. It brings together 27 members, including parents and carers, statutory partners, and hospice, clinical and social care professionals.
A forum built on real voices
Families caring for a seriously ill child have invaluable expertise. They understand what high-quality care looks like at home, in hospital, in a children’s hospice, and in every moment in between. Professionals bring the experience of working within stretched systems and the determination to deliver the best possible care. Together, these perspectives give us a richer, more honest view of what’s working, what isn’t, and where change is urgently needed.
The Council’s insights directly shape our policy and campaigning work, inform our calls to government, and guide how we support children’s palliative care services across the UK. When we speak out, we speak with their voices behind us.
Sarah joined our Advisory Council after caring for her son, Dylan, who died just before his fourth birthday after living with a rare neurodegenerative condition. Dylan required 24-hour care, and they were fortunate to have the services and support available to care for him at home.
“I feel very passionately that children’s palliative care services across the UK should be aligned, so every family has genuine freedom of choice and the support to care for their child in the way that feels right for them. I hope my experience navigating complex healthcare systems and bringing services together can help positively influence the journey for other families.”
Insights from parents like Sarah, help us shine a light on the realities families face and inform our advocacy work. Their honesty helps us highlight the pressures families face, the barriers, and the moments of extraordinary care that show what’s possible.
And making sure these voices are heard takes all of us – working together for a stronger voice for families and professionals across children’s palliative care.
How you help amplify these voices
As a supporter of Together for Short Lives, you make this work possible. Every campaign you champion and every service you help fund is strengthened by the voices of families and professionals who bring real world experience to the forefront.
The Advisory Council does exactly that. It keeps lived experience at the centre of our thinking, so that Together for Short Lives always remains focused on what matters most: giving seriously ill children and their families the best possible care and support, wherever they live and whatever challenges they face.