Shaping the NICE quality standards

The publication of the NICE Quality Standard for End of Life Care for infants, children and young people is an important and significant step forward in improving how children’s palliative care is planned and managed and funded. To support the publication of this Standard, we are publishing two blogs. The first is from Dr Emily Harrop, which outlines the approach and purpose of the Quality Standard.

NICE develop quality standards following the publication of key guidelines  in this case standards for the NICE End of Life Guideline for infants, children and young people with life-limiting conditions

The quality standards are designed to drive and measure quality improvements within a particular area of care. The scope aims to cover areas of practice that are in need of aspirational, but achievable improvements (rather than necessarily reflecting current practice).

Topics to be covered are prioritised on the basis of:

  • Known variation in care
  • Patient experience
  • Patient safety
  • Cost impact
  • Equality issues

The road to developing Quality Standards

I’m keen to share some insight on how the new Quality Standards are developed and tested. It’s a robust process with time for lively discussion and debate. Here’s a whistle stop trip through our journey to developing the Quality Standards. My role in the process was that of an appointed ‘topic expert’. Essentially, this involved giving clinical context as well as some insight from the original guideline development process to the development of the standards.

  1. Work started on the Quality Standards for End of Life Care in infants, children and young people in late 2016, just after the publication of the final guideline. The whole process took around 40 weeks.

  2. Quality Standards (QS) are developed independently to the underpinning NICE guideline. The Quality Standards Advisory Committee (QSAC) is larger and has a different structure and membership with an independent Chair and a number of standing members. Some of the original NICE guideline development committee members are also invited to apply as ‘topic experts’ – in our case this included the Chair, Deputy Chair, Parent Representative and four others (from backgrounds including Psychology, Nursing, General Practice, and Youth Work).

  3. The process started with the publication of a topic overview describing the proposed core elements to be covered. Stakeholders were then invited to submit proposed areas for possible quality improvement, ahead of the initial committee meeting.

  4. The QSAC then reviewed the topic engagement feedback and heard the views of the invited ‘topic experts’ before prioritising the areas to be covered. Consensus of the QSAC does not allow for the Quality Standard to include interventions different or in addition to those in the original guideline, but can help shape the choice of topics and the wording of the statements. Wording is always geared towards choice and involvement in decisions.

  5. Draft standards were then drawn up by the Quality Standard team at NICE. These typically consist of five statements, each with an associated quality measure. After a very lively initial meeting, we were allowed to work up six statements – something of a record!

  6. Each Quality Standard comes with the supporting rationale, suggested quality measures, and desired outcomes. Information is also provided about how the statements are likely to apply service users, service providers, health and social care providers and commissioners.

  7. These draft Quality Standards then went out for consultation to stakeholders, who were asked to comment on whether they would:
  • Measure quality improvement
  • Be sufficiently important
  • Work in practice
  • Final changes and re-wordings were agreed at a lively and passionate follow up QSAC meetiing

Lastly, the Quality Standards were checked by NICE before being edited and prepared for publication on the NICE website as well as being incorporation in to the NICE Pathway. The senior team at NICE were apparently really impressed with the final document appearing to understand what a difficult area this was to create measurable standards for.

The new NICE Quality Standards

You can read the Nice Quality Standards here:

End of life care for infants, children and young people

There is also some clear guidance available on how to implement quality standards - view here.


Looking ahead: Improving care for children and families

End of life care for infants, children and young people is obviously a vast subject, with many topic areas that do not lend themselves to numerator and denominator style outcome measures. This was frustrating at times, in that it made it impossible to have clear Quality Standards for fundamental topics such as adequate management of specific symptoms. Those of you who have spent time looking at outcome measures won’t be surprised to hear how challenging this piece of work was. 

Despite this, I do believe that within the constraint of the process, the final Quality Standards are the best that could be achieved and I sincerely hope that they are useful in supporting quality improvement and reducing inequity of care for life-limited children and their families. The standards have the potential to improve important areas of care including:

  • Active engagement of families in care planning.
  • Knowing clearly who is leading on clinical decision making for their child.
  • Having access to a multi-disciplinary team including specialist expertise.
  • Understanding the sources of emotional support available for the child and wider family.
  • Having timely access to support for grief and loss.
  • Having adequate support for those referring home end of life care.

…all of which should empower families facing the most difficult of times, to understand the quality care to which they are entitled.

Dr Emily HARROP
Consultant in Paediatric Palliative Care
Deputy Chair of CDG for NG61

Watch out for our second blog on the NICE Quality Standard, from Doug Morris, which will provide a parent perspective on the Standard. We'll be publishing that blog next week.

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