Background EPaCCS enable the recording and sharing of key details and care preferences for patients approaching the end of life, supporting co-ordination of care and delivery of the right care, in the right place, by the right person, at the right time. Core content was identified in an NHS England national information standard for end of life care co-ordination (ISB 1580).
Methods In 2011 a local EPaCCS implementation group was formed with clinical and IT representation from 3 CCGs, 3 acute NHS Trusts, 2 community NHS Trusts, 4 independent hospices, GPs, out-of-hours providers and the ambulance service. From 2012–2014 existing EPaCCS across the country were viewed, an appropriate IT platform was identified, clinical staff were involved to agree content, and bespoke clinical templates were built. From 2014–2016 development took place through a test-launch-review cycle. Information governance issues were addressed with an executive governance policy, standard operating procedure and data sharing agreements. Extensive communication supported a launch across providers.
Results The system went live in November 2016. Over 600 patients have a CASTLE Register record and over 900 staff have been trained and licensed to use the system. It can be viewed in acute, community and hospice settings with automated notifications sent to ambulance and out-of-hours services. Key challenges have included the need for continuous collaboration between all providers; clinical/IT leads learning to speak a common language; interoperability between 10 clinical IT systems; need for culture change across the entire health economy.
Conclusions The journey through engagement, scoping, development and communication has been challenging with many obstacles to overcome along the way. Throughout, the patient has been kept at the centre with passionate clinical leadership and perseverance over years. Ongoing sustainability is being supported through engagement of local clinical champions, CCG funding incentives for GPs, shared resources, training and video learning.
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