Rainbow Trust welcomes significant new guidance on end of life care for children

Rainbow Trust Children’s Charity welcomes the release of the final version of important guidance setting out what care and support should be provided to terminally ill children.

The finalised guidance includes a recognition of the benefits of social care professionals within child palliative care and reflects some of the suggestions that Rainbow Trust and other palliative care providers and professionals offered during a consultation earlier this year.

The NICE (National Institute for Health and Care Excellence) guideline looks at a wide range of issues including where the best place to die might be, and how to manage a child’s pain and symptoms. In particular, the final guidance now includes an explicit reference to the needs of brother and sisters and other family members of a terminally ill child. Two new recommendations have been added which detail the social, practical, emotional, psychological and spiritual support needs specifically of brothers and sisters, and the support needs for other family members, such as grandparents, or other people important to the child or young person.

Rainbow Trust also welcomes the guidance on which professionals should be part of a child’s specialist paediatric palliative care team which allows scope for a Family Support Worker to be involved if appropriate. NICE recommend the inclusion of ‘experts in child and family support who have experience in end of life care’.

The development and publication of the guideline is the result of many years of careful work and research by professionals and experts, as well as input from families and young people. It is written for providers of care, as well as for the bodies which plan and fund child palliative care. Versions designed for families and children will be also published.

Anne Harris, Rainbow Trust Director of Care, said:

‘This guideline sets a high standard for what care and support should be provided to children and their families, and how that care is delivered, wherever they live across England. It recognises both the need for compassionate care for the whole family, and that children have different needs to those of adults at the end of life.

The next step will be ensuring that the guideline is well understood by all those involved in child palliative care, and that sufficient resources and skilled staff are put in place by local decision-makers to make sure these ambitions are realised for all terminally ill babies, children and young people.

Rainbow Trust will be working with the families we support to make them aware of the guideline and the care that they and their child can expect as a result.’

Read the final guidance here.