About the information standard

When care is delivered by multiple teams, as it often is in palliative and end of life care, professionals can work most effectively together to provide the best end of life care if they have access to and are able to share up-to-date and accurate information. They need to know about the individual's care and expressed preferences, at any time of the day or night and in any setting. Of course, this must occur in a secure system with the person's consent.

The shared record must also be complete, and this is where the National Information Standard for Palliative Care Co-ordination: core content (SCCI1580) comes in. It supports consistent, accurate recording of a person's preferences for palliative and end of life care, by defining and specifying the core record content required and providing additional guidance on implementation. The data set includes the person's preferences and choices for palliative and end of life care, such as: their preferred place of death, the details of people they wished to be involved in decisions about their care, cardiopulmonary resuscitation decisions, details of people appointed with lasting power of attorney, and contact details for key health and social care staff.

The national information standard has been developed so that localities can maintain the highest level of quality, while initiating their own local solutions for sharing this critical and sensitive information. It evolved from a series of pilot sites across England, which tested the development and implementation of different approaches to Electronic Palliative Care Co-ordination Systems (EPaCCS).

Since 1st April 2013, Public Health England’s National End of Life Care Intelligence Network and NHS England’s Improving Quality work together to maintain the standard and support implementation.

The standard is updated in response to feedback from implementers and stakeholders.  All changes are approved by the Standardisation Committee for Care Information (SCCI). The standard was last updated in September 2015 and conformance is required by 1 March 2016. For more details about the changes that have been made to the information standard, view Guidance to implementing changes (Amd 11/2015) and Change specification.  Both of these can be found on the HSCIC website.

The standard has been endorsed by:

Related links

Palliative Care Co-ordination Implementation guidance

Palliative Care Co-ordination Record keeping guidance

Palliative Care Co-ordination Summary record keeping guidance

Information standard data set summary

Locality registers final report

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