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Poster Numbers 242 – 279 – Palliative care: all conditions and all ages: Poster No: 259
Being there – for children and families
  1. Linda Maynard and
  2. Janet Leeson
  1. East Anglia's Children's Hospices (EACH), Cambridge, UK


Services across the UK are challenged to provide 24/7 care to support babies, children and young people with life-threatening conditions and their families living with their condition 24 h a day, 7 days a week. This poster outlines an evaluation of an innovative approach to 24/7 specialist symptom management support throughout Norfolk, Suffolk, Cambridgeshire and North Essex. A model was developed incorporating evidence and standards from Better Care: Better Lives (DH, 2008) and ACT Care Pathway Standards (ACT, 2007). Principal objectives were to: • develop a 24/7 symptom management Team • offer open access to families and professionals • grow a medical network • collaborate with others to develop common approaches, shared pathways and management plans.

Findings Following recruitment, a live service was offered from October 2010, using five children's clinical nurse specialists and an outsourced call handling service. Sixty calls were received out of office hours during the first 6 months and 79 children entered the caseload • Using DH £30 million funding, a series of workshops were held which enabled a successful business case for the commissioning of a managed medical network from April 2012 • The team has catalysed a number of developments, including common protocols for syringe driver use, universal end of life plans and shared symptom management plans. Benefits for families: • Prompt access to remote advice and hands on nursing care • Care in their preferred location • Team approach gave families confidence that out of hours contact was with individuals who knew their situation • Surprises included team members becoming key workers and catalysis of proper symptom management plans for children.

Challenges • Understanding this innovative role and service by other professionals • Some current providers perceived the Team as a threat • Large geographical area covered.

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