NICE have been asked to develop a clinical practice guideline on End of life care for infants, children and young people for use in the NHS in England, Wales and Northern Ireland. The draft scope defines what aspects of care the guideline will cover and to whom it will apply.  Registered stakeholders for this guideline are invited to submit comments on the scope and may suggest clinical questions that could be answered in the guideline. Individuals and organisations not registered as stakeholders are not able to comment. We recommend that you register as a stakeholder or contact registered stakeholder organisation  that most closely represents your interests and pass your comments to them.

See here for information on the progress for this guideline topic so far.

Consultation dates: 21 October 2014 – 18 November 2014

(Please note: the guideline development group recruitment is happening alongside this consultation within the dates stated above, see here for further information).

Consultation documents:

• Draft Scope
• Comments proforma

Points to consider in the consultation:

• Do you think this scope could be changed to better promote equality of opportunity relating to age, disability, gender, gender identity, ethnicity, religion and belief, sexual orientation or socio-economic status? In answering this question, please include details of:

      Which particular parts of the scope you think affect equality of opportunity?

      Why and how you think equality of opportunity is affected?

How to submit your comments:

Responses must be submitted using the comments proforma (Word version only, PDFs not accepted) ensuring all relevant fields are completed.

Completed comment proformas must be returned to EndOfLifeCareChildren@nice.org.uk   by 5pm on 18 November 2014 at the very latest in order to be considered.

The Institute is unable to accept:

• Comments from non-registered organisations / individuals – if you wish your comments to be considered please register your organisation as a stakeholder via the NICE website or contact the registered stakeholder organisation that most closely represents your interests and pass your comments to them
• Comments received after the consultation deadline (5pm)
• Comments that are not on the correct proforma
• More than one response per stakeholder organisation
• Confidential information or other material that you would not wish to be made public
• Personal medical information about yourself or another person from which your or the person’s identity could be ascertained

What will happen to your comments:

• All eligible comments  will be sent to the developers at the end of the consultation
• Comments from registered stakeholders and nominated expert reviewers ONLY will be formally responded to by the developers and posted on the NICE website after the final scope is published
• No action will be taken upon receipt of personal, individual comments and late comments
• Please note: The Institute reserves the right to summarise and edit comments received during consultations, or not to publish them at all, where in the reasonable opinion of the Institute, the comments are voluminous, publication would be unlawful or publication would be otherwise inappropriate.

Comments received in the course of consultations carried out by the Institute are published in the interests of openness and transparency, and to promote understanding of how recommendations are developed. The comments are published as a record of the submissions that the Institute has received, and are not endorsed by the Institute, its officers or advisory committees.

Consultation on draft guideline: 21 October 2014 – 18 November 2014

Anticipated guideline publication date: December 2016

See here for more information on NICE’s guideline development process.