Background Post-pandemic, after major structural changes and with a new CEO, the children’s hospice needed a new organisational strategy.

Aims To create a collaborative strategy relevant to external and internal stakeholders, address service provision inequity and position the hospice within the health and social care system.

Methods Consultation: Nov. 2021- Feb. 2022 – internal and external stakeholders consulted widely. Questions included their requirements from the children’s hospice service 2022–26. Five meetings with 21 parents, children, and young people (CYP) and 19 meetings with 30 stakeholders from hospitals, social care, and integrated care boards (ICBs) took place.

Needs analysis: An analysis which overlayed national and local ONS (Office for National Statistics) and NCMD (National Child Mortality Database) prevalence and bereavement data. Sought to understand the discrepancy between the prevalence data of 7500 life-limited children and young people, and the actual 276 deaths in our area.

Finalisation: to receive Board and stakeholder approval; to work with external consultant on formalisation.

Results Consultation: Parents highly value hospice’s advocacy role. Multiple requests from NICU and PICU wards to support bereaved families. Hospices must integrate within the healthcare system.

Needs analysis: The hospice does not reach the most deprived families (IDACI Score 5) and only reaches 20% of families whose child has died. 276 children die in catchment area annually, 50% of those are under 7 days old (area covers 9.4% England child population).

Finalisation: Mar. 2022 – Sept. 22 – worked with consultant on a strategy map, implementation plan and performance measures. Presented to external and internal stakeholders for comments. Internal engagement included wider staff consultation, 86/147 (60%) staff attending briefing events. 67% positive feedback received. September 2022, Board approved final strategy.

Conclusions The new Strategy changes the organisation’s ambition to include ‘all families whose child has died’. The organisation has ongoing conversations with stakeholders and works collaboratively solving problems faced by children, young people and families.