A rough guide to the NICE guideline

At the recent Together for Short Lives conference, Defining moments in children’s palliative care, delegates heard from Dr Emily Harrop about the development of the new NICE guideline for End of life care for infants, children and young people with life-limiting conditions. As this document and the associated quality standards are of key importance to the children’s palliative care sector, Dr Harrop has prepared a quick guide to the different resources and supporting documents accompanying the guidance and available through the NICE website.

The NICE guidance was finalised in December 2016, all the related documents are hosted on the NICE website and are now feely accessible, however it can be a little tricky to navigate. The following article is a whistle stop tour of the different resources included in the suite of documents (click on the links below).

Main website hosting the guidance: 

Recommendations are hosted here, and can be downloaded.

Resources menu: 

  • Baseline assessment tool – Excel spread sheet for assessment of current service provision
    Slightly clunky to use, but allows you to decide which of the recommendations apply to your service, and to decide whether you have evidence of activity / meet the requirement
  • Resource Impact Report
    An economic modelling exercise looking at some of the most economically sensitive parts of the guidance as applies to standardise populations, on a ‘what if’ basis. Useful for tackling commissioners and funding bodies.
  • Resource Impact Template
    This allows you to apply some of the economic modelling to your service / patient population
  • Research Recommendation Information
    This gives some extra detail on the five prioritised research recommendations. Note that there are a total of ten overall research recommendations in the full guidance.

Information for Patients / the Public

  • Guidance version written for families and carers
  • Guidance version written for young people

Both of these downloadable documents give plain English summaries of key areas of the guidance, as well as suggesting questions that parents / carers / young people could ask those caring for them, in relation to the delivery of care.

Evidence Page – Full Guidance and appendices 

  • Appendix A – Scope. Many of you were involved as Stakeholder is shaping the original scope. 
  • Appendix B – List of Stakeholders – I’m sure you’ll all find your organisations listed. 
  • Appendix C – Potential conflicts of interest declared by committee members – fairly dull to read!
  • Appendix D – Final review protocols agreed by the committee (20 of them) – this would be of interest to anyone thinking of undertaking a significant systematic review (eg Cochrane review) as it details the specific review questions that have already been addressed under the GRADE system by systematic reviewers at NICE. 
  • Appendix E – Search strategies used by the systematic reviewers 
  • Appendix F - Summary of identified studies 
  • Appendix G – Evidence tables 
  • Appendix H – Excluded studies 
  • Appendix I – Forrest Plots (there were a few – honest!)
  • Appendix J – GRADE evidence tables 
  • Appendix K – Health Economics Chapter - explains the economic rationale permitting recommendations for rapid transfer and 24/7 support at home 
  • Appendix L – Together for Short Lives Report - specifically commissioned piece of work to seek user engagement (in addition to the two parent representative on the committee). Young people were interviewed, leading to the identification of common themes. The report is illustrated with some lovely quotes from the participants. 

Full Guidance - this is the over 400 pages version with ALL the extra information linking evidence to recommendations, as well as qualitative evidence theme maps. 


Lastly, the guidance for adults & children at the end of life can now be viewed as an interactive flowchart, hosted in the NICE Pathways website. This allows you to home in on specific topics more easily – useful at the coal face.

Quality Standards

NICE define their Quality Standards as:

Person centred, action focused statements designed to drive and measure priority quality improvements within a particular area of care

Quality standards set out the priority areas for quality improvement in health and social care. They cover areas where there is variation in care, helping with quality improvement and regulatory compliance. Each standard gives you:

  • a set of statements to help you improve quality
  • information on how to measure progress.

Consultation on the draft standards, to which many of you will have contributed, occurred this spring and a final version is due out autumn 2017.

Draft Quality Standards (and other related documents), can be viewed here

Related Documents illustrating the guidance: 

News coverage: 


Film clips:

Dr Emily Harrop is a Consultant in Paediatric Palliative Care at Helen & Douglas House and Oxford University Hospitals, and Deputy Chair of the Guideline Development Committee

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