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Bereavement support standards for children’s hospitals

The National Children’s Hospitals Bereavement Network: Bereavement support standards for children’s hospitals within the UK or district general hospitals that offer services for children and families

The National Children’s Hospitals Bereavement Network is a UK wide group made up from of Specialist Children’s Nurses with an interest in bereavement issues. The focus of the group is ‘Children’s Bereavement Services in the NHS’. The purpose being to: share experiences and best practice, share local learning initiatives and to drive forward quality improvement. The group provides a forum for developing guidelines, protocols, procedures and policies relating to babies, children and young people’s deaths across the UK’s children’s hospitals.

Since 2015 there have been many changes and developments around child death and it was very clear that there were varying levels of support being provided amongst the children’s hospitals as well as in other NHS hospitals where children are seen and cared for.

It was evident that there was a requirement for bereavement standards to be developed in order to ensure there is a minimum level of bereavement support and family follow up provided by professionals working in areas wherever a child may die through the early days and weeks following the death of a child.

The standards have now been written and are underpinned by NICE guideline; End of life care for infants, children and young people with life-limiting conditions (2016) and based on the Child Death Statutory and operational guidance for England (2018)

The standards define what is meant by bereavement support and are based on a three-tiered pyramid service model. They suggest what level of bereavement care services should provide and who should provide it within the service, at the time of death and on-going support, taking into consideration family expectations. The standards define the role of the key worker and what NHS Trusts should provide each family regardless of the cause of death.

The standards aim to make sure bereaved families and carers receive best practice by providing a robust standard framework for bereavement care within a service and that is equitable across the Trust. They support an approach that is safe, effective; well-led; caring and responsive.

To accompany the standards, the National Children’s Hospitals Bereavement Network have offered an example of a ‘Standard Operating Procedure’ (SOP), which translate the standards into local policy/procedure: “Support to families following the death of a children in hospital, the Core Offer” (You can download a copy from the link on the right hand side bar). A SOP or guidelines for supporting families following the death of a child should be in place and families should be aware of what the local offer is. The offer will vary across the UK given the different resources, demographic and types of services being offered. There must be information for families about the local offer and sources of ongoing bereavement support.