OP-14 Inequity in access to bereavement care for families whose child dies unexpectedly: pioneering care from a children’s hospice

<h3></h3> The Ambitions framework states: ’We need to have a nation where each death matters. This means extending our concern beyond the care required by those living with predictable life shortening illness, to ensure a better response from the health and care system and from society, to sudden, unpredictable or very gradual dying.’¹ <h3>Introduction</h3> Children’s hospices have built their care services for life-limited children who typically deteriorate over several years.² They strengthen families with excellent medical and psychosocial care. However, 30% of child deaths in England and Wales are in fact sudden and unpredictable.³ These families are forgotten in this design; young families are expected to navigate traumatic deaths and complex grief alone. Bereavement outcomes are poor.^4-7 <h3>Aims and Approach</h3> At Shooting Star, a children’s hospice serving the largest child population in the country, we identified that as few as 1 in 5 families who had experienced the death of a child were accessing our service. Rather than continue this well-trodden path, we stopped to understand who needs our care, what our patient population should look like. In partnership with two child death review teams, we designed a systems approach solution, utilising existing knowledge and the child death review framework to implement a new model where unanticipated deaths aren’t excluded. Enhanced staff support was put in place. <h3>Results and Impact</h3> This trailblazing initiative met instant demand, with 120 families who would not have previously accessed specialist bereavement care, now receiving this. 100% of the families agreed hospice care is effective in meeting their grief needs from a sudden and unexpected death. 84% of external professionals strongly agreed and see the need for a nationwide shift. <h3>Conclusion</h3> This project demonstrates how a systems-approach, sustainable solution can expand the rich palliative care expertise that hospices possess, enabling these to reach individuals in need of care. <h3>References</h3> Ambitions for palliative and end of life care. Second edition. Together for Short Lives, Core Care Pathway, accessed October 2024 https://www.togetherforshortlives.org.uk/resource/core-care-pathway/ Office for National Statistics. Child and infant mortality in England and Wales: 2020. Stillbirths, infant and childhood deaths occurring annually in England and Wales, and associated risk factors. https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/death s/bulletins/childhoodinfantandperinatalmortalityinenglandandwales/2020 Dyregrov A, Dyregrov K. Long-term impact of sudden infant death: a twelve to fifteen year follow-up. <i>Death Studies</i> 1999;<b>23</b>:635–661. Stroebe M, Schut H, Stroebe W. Health outcomes of bereavement. <i>The Lancet</i> 2007;<b>8</b>:1960–73. Wilcox HC, Mittendorfer-Rutz E, Kjeldgard L, Alexanderson K, Runeson B. Functional impairment due to bereavement after the death of adolescent or young adult offspring in a national population study of 1,051,515 parents. <i>Soc Psychiatry Epidemiol</i> 2015;<b>50</b>(8):1249–56. Morris S, Fletcher K, Goldstein R. The grief of parents after the death of a young child. <i>Journal of Clinical Psychology in Medical Settings</i> 2019;<b>26</b>:321–338.