{
  "abstract": "Background Despite NICE guidance (National Institute for Health and Care Excellence. End of life care for infants, children and young people with life-limiting conditions: planning and management. [NG61] 2016) stating that children and young people at end of life should have access to 24/7 face-to-face nursing provision, significant inequity continues to exist (Together for Short Lives. Short lives can’t wait: the state of children’s palliative care in 2024. Bristol: TfSL; 2024; Tatterton. Nurs Child Young People. 2019;31(5):42-48). A key barrier is the lack of children’s community nurses who are critical to the delivery of palliative care in the home. An innovative model of care was developed and implemented with a children’s hospice, addressing the gaps in out-of-hours provision and skills in community and acute settings. Evidence of service utilisation and successes can support shared learning to drive equitable care across the sector.Aim To assess the demand and utilisation of a unique 24/7 community nursing model to support children and young people at end of life.Methods A retrospective review of all children and young people who accessed out-of-hours community nursing provision from a children’s hospice in England between March 2023 – March 2025 for symptom management and/or end of life care.Results The on-call service was contacted on 113 nights for a total of 39 children (mean age: 9.9 years, 24 male, 15 female, 18 oncology; 21 non-oncology) for symptom management or end of life care. The service delivered 223 contacts, including 120 telephone calls and 103 face-to-face home visits.Contacts per child: mean = 5.72 (SD=6.3, n=39), median = 4 (range 1-24).Visits: mean per child = 3.96 (SD=5.5, n=26), median = 1.5 (range 1-24).Telephone: mean = 3.87 (SD=3.33, n=31), median=3 (range 1-13).All children who died (n=31) were able to do so in their preferred place (home n=16, hospice n=7, hospital n=8).Conclusion Current statutory services do not comply with national guidelines. A 24/7 model has been successfully implemented with high uptake and utilisation from families, demonstrating a need for these equitable services nationally. Our data show that high quality 24/7 provision enables children and young people to be cared for in their preferred place during their end of life.",
  "authors": [
    {
      "affiliations": [
        "Shooting Star Children’s Hospices, Guildford, UK"
      ],
      "name": "Tracie Lewin-Taylor"
    },
    {
      "affiliations": [
        "Shooting Star Children’s Hospices, Guildford, UK"
      ],
      "name": "Megan Smith"
    },
    {
      "affiliations": [
        "Shooting Star Children’s Hospices, Guildford, UK"
      ],
      "name": "Phoebe Robinson"
    },
    {
      "affiliations": [
        "Shooting Star Children’s Hospices, Guildford, UK"
      ],
      "name": "Kimberley Burke"
    },
    {
      "affiliations": [
        "Shooting Star Children’s Hospices, Guildford, UK"
      ],
      "name": "Jolanta Golan"
    }
  ],
  "title": "P-129 Addressing the gaps: evaluating an innovative 24/7 community nursing model for children at end of life",
  "uid": "e33baca0-ea48-5d78-b511-d01c087f67eb"
}