One year on: what progress on end of life care for children?

Rainbow Trust Children’s Charity welcomes the publication of a progress report by government on the first year of implementing its End of Life Care strategy. However we urge greater attention on the resourcing of emotional and practical support for families, and we call on the Department of Health to open up existing funding streams to enable more families to receive our tailored support.

The progress report documents the activities and work streams which are underway to bring about the government’s vision of ‘personalised end of life care for all’. In terms of children and young people, it focusses on progress in two particular areas: bereavement support for the whole family, including the introduction of a new entitlement to bereavement leave for parents, and the implementation of the NICE (National Institute for Health and Care Excellence) Clinical Guidance on End of Life Care for Babies, Children and Young People.

Anne Harris, Rainbow Trust Director of Care, said:

‘We welcome this progress report which highlights the valuable work underway to improve care for children with life threatening or terminal conditions and their families, and we look forward to the forthcoming publication of a new bereavement pathway for families.

However, the emotional and practical support provided by organisations such as Rainbow Trust remains undervalued, and the funding of children’s social care is highly uncertain. We know that social care is essential for the many thousands of families who have a life threatened or terminally ill child, and who need more support than their own resources and networks can provide.

We urge the government to open up existing funding streams to cost effective services such as ours which offer non-clinical care but are helping to keep children out of hospital by enhancing the ability of families to cope at the most challenging of times.’

The strategy, published in summer 2016, has a dedicated section on improving care for children and young people at the end of life, and enhancing support to families, friends and carers who look after them. Rainbow Trust welcomed its publication for recognising that end of life care for children differs in some ways from adults, and must encompass the whole family.

Read the progress report here.

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