Frequently Asked Questions

Does the standard apply to all service providers?

The standard applies to all services delivering care to adults who are over the age of 18, approaching the end of life. These services may include primary care, community care, acute and community hospitals, hospices and palliative care, emergency and urgent care, out-of-hours, mental health, the voluntary sector and the private sector.

Which electronic systems does the standard relate to?

The standard applies to all electronic systems that hold any of the data items listed in the core content of the standard, which relates to adults aged 18 years and older.

Is it mandatory to establish an EPaCCS?

It is recommended but not mandatory for service providers to establish an EPaCCS. If their existing systems hold any of the data items included in the standard. Systems and data items must comply with the changes specified in Amd11/2015 by 1 March 2016.

What are the requirements for service providers?

Organisations providing services for adults at end of life SHOULD review current systems and, if necessary, plan for migration to conform with the information standard. Systems and data items must comply with the changes specified in Amd 11/2015 by 1 March 2016.

For full details about the structure and coding requirements please refer to the Palliative Care co-ordination Requirements specification on the HSCIC website. 

For additional requirements, including the consent model, information governance and clinical governance, please refer to the Palliative Care Co-ordination Implementation guidance.

For details of the requirements for staff using EPaCCS, please refer to the Palliative Care Co-ordination Record keeping guidance.

What is the requirement for organisations setting up EPaCCS?

Since 20 March 2012, organisations contracting for new Electronic Palliative Care Co-ordination Systems (EPaCCS) MUST specify compliance to the standard in IT systems and software supplier contracts. 

Where an EPaCCS has already been established, the responsible organisation should review their current system and, if necessary, migrate to compliant systems. Systems and data items must comply with the changes specified in Amd 11/2015 by 1 March 2016.

For full details about the structure and coding requirements, please refer to the Palliative care co-ordination Requirements specification held on the HSCIC website.

For additional requirements regarding the consent model, information governance and clinical governance, please refer to the  Palliative Care Co-ordination Implementation guidance.

What is the requirement for IT systems suppliers?

IT systems suppliers for EPaCCS MUST ensure that their systems are compliant with the standard. They MUST be compliant with the changes specified in Amd 11/2015 by 01 March 2016. For full details about the requirements including the structure and g of the data items, please refer to the Palliative Care Co-ordination Requirements specification on the SCCI website.

What is the requirement for commissioners?

Commissioners need to be aware of the standard and its content and should be aware of the benefits of EPaCCS for supporting end of life care commissioning intentions. They will want to be assured that any new contracts with IT systems suppliers, including for EPaCCS, specify compliance with the standard and that where relevant current IT systems are compliant with the standard.  They will want to be assured that systems are compliant with the changes specified in Amd 11/2015 by 1 March 2016. 

For full details about the requirements, including the structure and coding of the data items, please refer to the standard Palliative Care Co-ordination Requirements specification on the SCCI website.

For additional requirements regarding the consent model, information governance and clinical governance, please refer to the Palliative Care Co-ordination Implementation guidance.

For details of the requirements for staff using EPaCCS, please refer to the Palliative Care Co-ordination Record keeping guidance.

What is the difference between 'mandatory' and 'required'

Where data items are specified as mandatory, the data element MUST be completed and the technical processes should support this. Systems will not allow submission of the data set without completion of the mandatory data element. This mandatory field applies to, for example, consent status, record creation date, date and time of amendments, family name, forename, date of birth, address, GP name and practice details, NHS number, EoLC diagnosis, availability of informal carer support. These fields need to be completed at the time that the record is created.

Where data items are specified as Required, the data element must be completed when possible. The system recognises that data may not be available or appropriate in every case (eg disability, allergies/adverse drug reactions) and allows the record to be created without it.

Is a person's permission required to add their details to the record?

Yes. Not all people will want to be included on the register and individuals are free to withhold their consent. The record contains information of a sensitive nature and is shared across organisational boundaries. The information standard requires separate explicit consent for a record to be created and for the information to be shared. The record captures the consent that has been given.  For further information please refer to the Palliative Care Co-ordination Record keeping guidance.

Why does the standard not include a data item to record whether the individual is aware that they are at the end of life stage?

The consent model for the national information standard requires separate explicit consent for creation of a record in a palliative and end of life care co-ordination system, and for sharing this information. Any individual with such a record would therefore need to have had a comprehensive discussion about their condition, and understand why a system to support care at the end of life was relevant to them.

We want to collect additional data items, is this possible?

Yes. The information standard includes a core data set, which is considered central to supporting the effective delivery of co-ordinated care. However, local organisations may choose to extend this.

The standard records first and second preferences for place of death. Why is a second choice included?

This was recommended by the professional bodies. Achieving the person's first choice may not always be possible so it is important to have a second preference recorded when possible. It may also be useful to record specific details, such as the name of a care home or hospice.

Preferred place of death is a sensitive question and staff may want to consider the way that this question is phrased, for example: "Where would you like to be cared for towards the end?"

How can I report implementation issues or suggestions for the standard?

We welcome your feedback on the information standard. It is important for us to know if there are any issues that arise in implementation and any suggestions for improvement. Please let us know how the standard has assisted you to improve recording and communication of palliative and end of life care preferences and choices. We would also welcome your comments and suggestions about:

• The Implementation guidance

• The Record keeping guidance

• The data items or data codes

• Any ways to improve the standard

Please send your comments to neolcin at phe dot gov.uk link [email protected] with Palliative Care Co-ordination Information Standard in the subject line. Please include your name, title, contact details, and the name of your organisation. You can also contact us with queries and requests for support.

Information standard data items summary 

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