Date published: 17 April 2025 by Sophie Wichman

We are proud to have joined two expert panels recently to debate and give evidence on the future of palliative and end of life care for children and their families.

On Wednesday 26 March, our Chief Executive Zillah Bingley took part in the Health and Social Care Committee’s Expert Panel and on Thursday 3 April, Zillah shared important insights with the Commission on Palliative and End of Life Care.

Zillah said:

“I was delighted to have the opportunity to join decision makers in Westminster to advocate for families caring for a seriously ill child .

"I provided evidence to the Commission on Palliative and End-of-Life Care on behalf of Rainbow Trust Children's Charity. It was a crucial opportunity to highlight the need for recognition and funding for the essential social palliative care support that is integral to a family with a terminally ill child.

"Sitting alongside my hugely respected clinical and research colleagues in the sector was fantastic and the experience so bravely shared by two parents brought home exactly why this is so important.

"When a child has a terminal or life-threatening illness the social care needs of that child, their siblings, parents and wider family members must be looked at alongside the child's clinical needs in a holistic way. I am hugely grateful that we had the chance to highlight this. There really needs to be true integration of the voluntary sector into NHS and ICB planning when considering the needs of terminally ill children and their families."

In both sessions, Zillah highlighted the urgent need to:

• Recognise and fund children’s social palliative care – emphasising that families of seriously ill children need practical, emotional and social support, alongside medical care, and that this must be properly resourced.

• Integrate the voluntary sector into Integrated Care Board planning and decision-making – underlining that organisations like Rainbow Trust are already delivering vital services and should be part of strategic conversations, not an afterthought.

• Listen to families’ experiences – bringing insights directly from the families Rainbow Trust supports to ensure their voices shape policy.

• Bridge the gap between hospital and home – pointing to the crucial role of social palliative care in helping families navigate the challenges of daily life with a seriously ill child.

"Being able to share the vital work of Rainbow Trust in Westminster ensures that the voices of families with a child with a life-threatening or terminal illness are being heard. I thank Rachael Maskell MP and all the Commissioners for recognising the importance of, and the need for, exceptional joined up holistic children's palliative care. We look forward to the report."