Date published: 08 July 2016 by Anna Jackson

The distinct needs of children at the end of life have been given recognition in an important new statement of government policy on end of life care. This week saw the release of the government’s long awaited response to the independent ‘A Review of Choice in End of Life Care’.

The original review on end of life care for adults was carried out by a panel of palliative care experts, and presented its recommendations in February 2015. The official response from government puts on record its acceptance of the review’s recommendations as a whole, and sets out specific actions to deliver its vision for ‘personalised end of life care for all’.

In recognition of their different needs and challenges, and following sustained lobbying from the sector, the response is notable for including an additional section on care for children and young people. This sets out how care differs, including its impact on the whole family. It highlights the value of personalised care, the need for flexible and responsive services, and the role of local health and care decision makers (‘commissioners’) in planning joined up services. It also identifies specific actions to be taken so that parents and siblings can access high quality bereavement services.

Anne Harris, Director of Care for Rainbow Trust Children’s Charity, said:

‘Rainbow Trust is pleased to see that the needs of children and young people have been recognised as distinct from those of adults in this response. As we develop and expand our own bereavement services across England, we welcome the fact that this under recognised area is now being given the attention it deserves. We do however remain deeply concerned that there is no new funding to implement the actions which are identified in this report. In particular the funding of social care remains highly uncertain. Yet 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 consider opening up more 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.’

Read the government’s July 2016 response here.

Read the 2015 ‘A Review of Choice in End of Life Care’ here.