Date published: 19 December 2024 by Ellen Armour

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

Rainbow Trust Children’s Charity is beyond disappointed by the Government’s decision to rule out financial support for children’s social palliative care delivered outside hospices by charities such as ours, limiting the increased funding announced today solely to hospice care. This decision completely overlooks the wider, holistic support that children with a life-threatening illness and their families so urgently need. 

There continues to be an alarming lack of understanding that palliative care is not purely clinical and that organisations, such as Rainbow Trust, providing social palliative care alongside clinical-based hospices and the NHS are vital.  

The support that Rainbow Trust provides, remains unrecognised by the Government despite the inordinate savings we provide for the health and social care sector.  Rainbow Trust supports the mental wellbeing of families with a terminally ill child, helps these families manage their stress, parents to remain in work, their children to continue in education and fills in the gaps between other services.

Many of the thousands of families Rainbow Trust has supported over nearly 40 years have said that that they were unable to cope before Rainbow Trust stepped in, with some telling us they felt suicidal. 

We have to raise £5.7million this year just to ensure that the support we currently provide to over 1000 families with a terminally ill child across the UK can continue.  We were hopeful that the Government would listen to the reality that palliative care is not just about clinical care, but has fallen on deaf ears.   

This hugely disappointing news comes on the back of the Chancellor’s Budget, in which the NI rise means Rainbow Trust must seek an extra £90,000 of funding – not to provide more services to families facing unimaginable challenges, but to give it straight back to the Government. Despite working alongside the NHS, delivering critical support to families, whilst the NHS is exempt from the NI rise, we are not.  

Whilst we are pleased for our colleagues in the children’s hospices that they will be in receipt of much needed funding, we call on the Government to urgently reconsider its priorities and recognise the equal value of the essential support provided by charities like ours.