Recommended resources

Join us for our third regional evening webinar series, exploring shared patients, challenges and solutions, looking at Paediatric Palliative Care and other specialities in turn. Sessions are a great way to check in for CPD, a rich bidirectional learning environment. 

Wednesdays every 6-8 weeks at 1930-2045 via Teams

Hosted by Helen & Douglas House Children's Hospice and the Compassionate Care Collaboration Group in Oxford, sign up for one or more event here:

Sign up here

Please also feel free to download the attached poster and share within your own networks!

Together for Short Lives - Caring for a child at end of life

This useful document provides a practical toolkit for all practitioners who are involved in end of life care for a child and their family. It sets key standards and goals that support best practice. The guide is helpfully divided into sections of, care before death, care at the time of death and care after death. In addition, it offers guidance for bereavement support and staff support. There are useful links to other resources.

The document is underpinned by national guidance including NICE (2016) and the quality Standards alongside the requirements set out by external regulations. It is a useful guide to help develop knowledge and skills for professionals.

This text (published 2025) is aimed at nurses delivering palliative care to children. It has been written by nurses working across the globe, so although it has a significant UK representation, there are examples of how PPC can be facilitated in other countries including those where services are less developed. 

Themes include delivery of care, training and education, self care for nurses, symptom management, end-of-life care and bereavement, leadership, evaluation of care.

The text includes the CPCET UK and Ireland Education Standard Framework (2020) which has been mapped to the different chapters.

I would recommend this text to nurses working in PPC and also other members of the MDT.

This is CPD-accredited 2-day course supported by the British Paediatric Neurology Association aiming to improve recognition of initial symptoms of abnormal (high or low) tone and speed-up referral to appropriate specialists. In turn, the course aims to reduce the time to diagnosis and quicken provision of suitable treatment and/or therapy and improve the experience of the child/young person and family. 

The comprehensive programme includes:

• Anatomy
• Terminology & language
• Investigations
• Assessment tool
• When to refer
• Physical interventions
• Medical & surgical interventions
• Management of neuromuscular disorder

Aimed at consultants & trainee paediatricians in Paediatrics, Neurodisability and Community Paediatrics, and therapists. 

Book via website (and see other available courses) here

Best Practice Guideline and tool for supporting young people's care with complex needs into adulthood. 

• Why do we need to verify? Who can verify, and how?
• Talking about death & verification - some communication strategies
• Spiritual and cultural considerations
• Taking care of yourself

This guide has been put together by a bereaved parents, support organisations and professionals. It is for parents and carers of a child under 18 to help them understand some of the things that will happen and support that is available.

Published by NCMD (National Child Mortality Database) Programme. It gives a gentle summary of:

• What happens when a child dies
• Key worker role
• Further investigations that might be needed
• The Child Death Review process
• Supportive things to consider at this stage (death registration, planning a funeral, financial and social support)

See here to download, or attached pdf