Date published: 12 June 2025 by Ellen Armour

Speaking today, Zillah Bingley, Chief Executive, Rainbow Trust Children’s Charity, said:

“While we welcome the government’s renewed investment in the NHS, which is an important step in tackling long-standing pressures across the health system, for families with a child who has a life-threatening or terminal illness, funding must go beyond clinical care.

“At present, only the children’s hospice sector benefits from dedicated NHS funding. We urge the government to extend this funding to include children’s social palliative care – the vital emotional, practical and social support that families need alongside medical treatment. This holistic care helps children enjoy everyday experiences, helps parents stay in work, supports siblings, and enables families to cope with the demands of caring for a child with a life-threatening or terminal illness, including into bereavement.

“We also welcome the increase in funding for special educational needs and disabilities (SEND). The government must now ensure that this funding is allocated in a way so that there is inclusive education support for children with a life-threatening or terminal illness and their siblings. Families also need regular short breaks, so that they can spend valuable time together as a family and enjoy a rest from caring responsibilities.

“Without these measures, too many families will continue to fall through the gaps.”