Paediatric Palliative Care Learning in the UK: summary of a national meeting

Categories: Care, Education, and Featured.

Dr Sue Neilson and Katrina McNamara report on a meeting held on 29 January this year to discuss the way forward for education in paediatric palliative care in the UK. The meeting took place in Birmingham.


The need to explore standardising interprofessional palliative care for children and young people (CYP) training and education (learning) in the UK was identified following a recent All-Party Parliament Group1 meeting on the provision of paediatric end of life care.

It is recognised that all professional groups should have access to a core paediatric palliative care curriculum, with pre and post registration training led by facilitators experienced in both palliative care provision and education and training.2,3 However, although recommendations for a core interprofessional curriculum2 exist, a national curriculum with designated centres of teaching and learning excellence has yet to be established within the UK.2,4

A national meeting was held in January 2019 to explore how to take this forward.

The aims of the meeting were to:

  • Discuss and assess the feasibility of developing a standardised programme of education, training and competencies for all health professionals providing palliative and end of life care to CYP.
  • Examine current provision in light of national and international legislation and guidance.
  • Discuss and outline a programme of work.

Meeting schedule

The 28 delegates attending the meeting included health professionals involved in CYP education and training from both institutes of higher education and clinical practice, representatives from allied organisations in the UK and Professor Julia Downing, Chief Executive International Children’s Palliative Care Network (ICPCN).

The meeting opened with an overview of UK nursing and medical CYP palliative care learning and the international perspective. A series of four focus groups were held exploring the: need to standardise pre and post registration interprofessional learning, facilitators and barriers to developing and delivering education and training, models of delivery and developing learning that is fit for purpose and future proof. Each focus group had a designated facilitator. Delegates were assigned to working groups, rotating to each of the 4 focus groups in turn. The collated findings from each focus group were then discussed collectively, the discussion  chaired by Professor Myra Bluebond-Langner, True Colours Chair in Palliative Care for Children and Young People.

Discussion Summary

There was recognition of the need for standardising learning and the need to agree core principles of practice such as competencies and proficiencies. Identified facilitators included recognition of the current interprofessional culture of around communication and factors that could facilitate taking this work forward such as curricula mapping. Key challenges ranged from identified national differences and the rapidly changing landscape to time and funding pressures impacting on professional’s ability to undertake learning. Developing a national framework to inform, develop and measure models of learning across all education tiers and settings (both university and clinically based learning) was suggested with a range of models of learning, such as experiential models, evidenced-based teaching, value based learning, highlighted. The importance of being creative and political were highlighted as key to ensuring longevity of outcomes.

Next steps

The group has agreed to reconvene to consider the priorities for action and will seek opportunities for the work to be commissioned.


  1. Cooper, J. (2018). End of life care: strengthening choice. An inquiry report by the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care. Available at
  2. Downing, J., Ling, J., Benini, F., Payne, S., & Papadatou, D. (2013). Core competencies for education in Paediatric Palliative Care. Milano, Italia: European Association for Palliative Care.
  3. Department of Health 2016 Providing high quality palliative care for our children. A strategy for children’s palliative and end of life care 2016-26. Available from:
  4. European Association for Palliative Care (2007). IMPaCCT: standards for paediatric palliative care in Europe. Eur Jour Pall Car, 14(3), 109-14.


About the authors

Dr Sue Neilson is a lecturer at the School of Nursing, University of Birmingham, UK. Correspondence to:

Katrina McNamara is chair of the Royal College of Nursing Children and Young People’s Palliative and End of Life Care Community, UK.

On behalf of the working group: Julie Bayliss, Rachel Cooke, Tara Elliott-Kerr, Nicki Fitzmaurice, Katrina McNamara, Sue Neilson.

Leave a Reply

Your email address will not be published. Required fields are marked *