Improving palliative care data collection and end of life care co-ordination in England

Date: 
25 September 2015
Public Health England’s National End of Life Care Intelligence Network (PHE NEoLCIN) has today published a statement updating on progress towards a new national data collection from specialist palliative care services. The network has also announced publication of the revised national information standard Palliative Care Co-ordination: core content.

Palliative Care Clinical Data Set

PHE’s NEoLCIN has today issued a statement to update specialist palliative care service providers, commissioners, clinicians, patients and the public about progress towards implementation of a new data collection from adult (aged 18 and over) specialist palliative care services in England. 

The new data collection is due to start in July 2016 from NHS and non-NHS hospital, hospice and community specialist palliative care services, with full implementation scheduled for April 2017. It is being supported by the development of a new national information standard (SCCI2036).

The purpose of the data collection is to improve outcomes for patients, carers and their families and to support the development of a new specialist palliative care funding model by NHS England.

The statement explains the benefits of the data collection for patients, their families and carers and advises specialist palliative care providers, commissioners and clinicians on what they need to do to start planning for its implementation.

Palliative Care Co-ordination: core content 

On 18 September, the Health and Social Care Information Centre published a revised information standard ‘Palliative Care Co-ordination: core content’ previously called ‘End of Life Care Co-ordination: core content’. 

The standard aims to improve the co-ordination of care through better communication of people’s wishes and preferences for care at the end of life. It specifies the core content to be held in Electronic Palliative Care Co-ordination Systems (EPaCCS).

The changes were made by PHE and NHS Improving Quality following feedback from implementers, national consultation, national review and the phasing out of the Liverpool Care Pathway. The changes ensure that it continues to meet user needs and remains fit for purpose. 

Dr Martin McShane, National Medical Director for Long Term Conditions at NHS England said: “The importance of palliative care in providing physical, psychological, social and spiritual support is greatly enhanced by making the information about a person available wherever they are, with their permission.  In a digital world continuity of information needs to be confidential but easy to access by the right people, reliable and accurate. This is why, with the information center, we are providing the tools and wherewithal for this to happen.”

Professor John Newton, Chief Knowledge Officer, PHE said: “Understanding what people really want at the end of their lives and co-ordination of their care at this time is so important. The timely, reliable and up to date information available through EPaCCS can make a real difference and there is already evidence telling us that these systems are having a positive impact. The NEoLCIN What We Know Now 2014 report revealed that there is a growing understanding within the health sector of what is important to people at the end of life, with more people dying at home or in care homes, the overall preferred place of death. With the NHS we will continue to drive improvements in palliative and end of life care to ensure that peoples’ preferences are understood and action is taken to achieve them.

For more information, see the National End of Life Care Intelligence Network website.

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