Date published: 26 March 2025 by Sophie Wichman

Zillah Bingley, Rainbow Trust Chief Executive said:

"Today’s Spring Statement was a missed opportunity to recognise the daily pressures faced by families caring for a child with a terminal or life-threatening illness.

"From the practical and emotional toll of providing round-the-clock care to the rising cost of living, families tell Rainbow Trust this is having a significant impact on their mental and physical health.

"The Chancellor said today that ‘if you can’t work you should be properly supported’: yet this is at odds with the reality for families trying to juggle care and paid work. Parents we support often have no choice but to give up work or reduce their hours – they need flexible, compassionate help from employers and the welfare system, including after bereavement.

"As Rainbow Trust faces National Insurance rises, meaning we may not be able to support as many families long-term, we urge the Chancellor to recognise the realities of these families – including those who aren’t eligible for benefits - but still face impossible financial strain.

"While the Chancellor may be right that ‘the world has changed,’ the lives of families with seriously ill children have not.

"The families supported by Rainbow Trust must not be forgotten as they still face daily pressures while they navigate the unimaginable news that their child might die before them."