Recommended resources

This video was produced for an education session on Advance Care Planning in Paediatrics for healthcare professionals. Through conversation, a parent and a healthcare professional explore what Advance Care Plans are, and what the benefits and challenges of having this discussion are:

For more, why not check out our Advance Care Planning in Children PPCEducate module? 

Evidence-based guideline for the management of agitation in children and young people in the palliative care setting. Includes definitions of agitation and terminal agitation, general principles, assessment and considerations and management options. 

Summarised in this handy algorithm, but do see full document for details. 

Available from: APPM.org.uk or attached pdf

Publication date: Jan 2023; review date Jan 2026

Read time: around 8 minutes

Download pdf below

The NCMD (National Child Mortality Database) reported on themes of deaths of those with life-limiting diagnoses in 2025. Key recommendations/areas for improvement were:

A link for the full report is found here

For those who are keen to read more about palliative care. Dr Kathryn Mannix (retired consultant in palliative care from North East) has written eloquently in follow up to her first book (With the End in Mind). This book is all about how we communicate around those 'tender' conversations. 
Really accessible reading for professionals.

Time: 10hrs 40 mins (approx)

Complex is a 3 part podcast available via BBC Sounds. Seven year-old Nora has a rare genetic disorder and complex care needs. This three-part series guides us through the concentric circles of Nora's life and round-the-clock care.

https://www.bbc.co.uk/sounds/brand/m00201xd

Time: 42 minutes x 3 episodes.

To book session visit: www.sschospices.litmoseu.com/onlinecourses/ or scan QR code

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!

Produced for HospiceUK Dying Matters Awareness Week 2025, this video explores the cultural experiences of three hospice volunteers:

Have we lost the practical wisdom of what happens as people die? With lessons from a career witnessing thousands of people's final breaths, palliative care expert Kathryn Mannix urges us to demystify the experience of death, sharing how a better understanding of what actually happens can reduce fear in the final days, for you and your loved ones.

The South of England PPC Education Network produce a quarterly newsletter, in March, June, September & December.

 Find out what we are up to, how to access PPCEducate and some dates for your diary.

Feel free to download the attached pdf and share!

Want to see your education event advertised? Email it to ppceducate@gmail.com

This 20 credit module, Enhancing Practice in Palliative Care for Children, Young People and Families, taken at either level 6 or level 7, has been designed in collaboration with practice partners in children's palliative care. 

Our aim is to offer a course to professionals working with children and families with palliative care needs in any setting, that:

• values and builds your existing knowledge and experience
• explores the key issues facing children's palliative care practice
• develops your academic skills and confidence
• creates a supportive space in which sensitive issues can be discussed
• encourages you to share ideas to take back into practice.

Course sessions will be offered by experts in the field from a range of practice and academic roles.

"Clinical manifestations of distress (pain behaviour, hypertonicity, retching, vomiting, vagal phenomenon, abdominal distension) attributable to the gastro-intestinal tract, durectly and indrectly related to feeding and bowel habit, where confounding systems distress have been addressed or excluded". 

Offeres general principles of communication, assessment and considerations, and a handy summary management algorithm (image is the 'management' section, please refer to full guidance).  

Available from: APPM.org.uk or attached pdf

Read time: 15 minutes

Free e-learning module focussing on children’s palliative care in humanitarian settings. Many courses available in multiple languages. 

External login required - see here for more details:

https://www.elearnicpcn.org/

Ted Bowman

Here are stories about how people have found hope in the face of tragedy and loss. I have added a commentary or reflection to many of them.

Time to read 2 hours

How to access: Books – Ted Bowman

Explain palliative care in 70 seconds

A 70 second YouTube video that's great to incorporate into presentations to challenge views around when to introduce palliative care.

A useful guide and introduction to children’s palliative care. The document offers an overview of the pathway of care and sets six standards for delivering high quality, effective children’s palliative care. It covers principles of good practice from initial diagnosis of recognition of the need for palliative care, through assessment care at the end of life and through bereavement.

There is useful background information, but the reader should be mindful of the current revisions being made to the core categories and model of children’s palliative care.

Time to read 2-3 hours

How to access - The Core Care Pathway from Together for Short Lives

Access free independent learning modules developed by the ICPCN and endorsed by the University of South Wales on a range of topics: https://www.elearnicpcn.org/my/

Reviewed here is 'Introduction to children's palliative care'. 

What is it about? Introduces categories of children who have palliative care needs, includes the global perspective, an overview of models of palliative care delivery and why children are different to adults. 

Who is it for? Multidisciplinary team, global application

Time to allow: ~1 hour.

Learning style: Mostly reading & graphics, with a short quiz and certificate at the end.  

The 'Little Teapot' model of paediatric palliative care provision may be helpful to explain to other professionals about how it all fits together...

'The state of children's palliative care in 2024' 

A TFSL summary report describing the current status in the UK of children's palliative care service delivery. 

This book is available in paper, electronic and audiobook format.

It tells the story of organ donation through the lives of two extraordinary children.  It explores the history of the medical innovations that allowed organ donation to happen intertwined with the journey of one heart.  The complexities of grief, hope and love are beautifully demonstrated through the lives of these families.

Time: approx 9 hours

The Southeast PPI Group lead this webinar on on Pain - look deeper, as part of Children's Hospice Week 2023. 

We hear from Dr Emily Harrop about some definitions of pain and parents in discussion of their own experiences. The phrase "look deeper" comes from them, and they ask us to focus on allowing a child and family to be heard. 

Watch time 90 minutes

This short YouTube video is funny description of why we experience pain, and how our previous experience impacts our pain experience.

Although not strictly palliative care, it is a really helpful introduction. 

Time: 15 minutes

3 years part-time blended learning course (or 2 years to finish with diploma), some F2F taught days at the beginning of each year.

It is taught with an all-age approach but with paediatric-specific modules. You should be working with palliative patients clinically alongside, giving real-world applicability to your studies.

Suitable for all members of the multi-disciplinary team.

Find out more here

Research study evaluating paramedic delivery of end of life care.

Current practice and experiences 

Explores the challenges faced, confidence and competence.

Time - Allow 10 minute read.   

Paramedics providing end-of-life care: an online survey of practice and experiences | BMC Palliative Care | Full Text

Presented by Heard, this webinar draws on narrative research and cognitive science to explore how professionals can use framing to improve people’s understanding and decision-making around children’s palliative care.

Attendees said:

Thank you for the opportunity to reflect upon my own practice and tools which I can adapt to my work, and thank you for helping me to recognise the personable things we try to do for families really do make a difference. I will share some of these insights with my colleagues who may not feel as comfortable as me in commencing these discussions. 

Thank you for a powerful presentation, we never stop learning as professionals working with families in palliative care.

I really appreciate the time and consideration given for this session. It was really helpful and lots to think about.

In another of the Southeast PPI Group led webinars, we explore Perceptions of paediatric Palliative care: a parent perspective. 

We introduce the PPI group, explore difficulties in accessing a children's hospice, what access to a hospice can mean for a family and child, and some parent perspectives on how we communicate about palliative diagnoses, and equity of provision. 

Watch time: 90 minutes

This was session was held as a Children's Hospice Week event in June 2022. 

The Southeast PPI group present the latest in their webinar series, discussing Perinatal Palliative Care: no longer in its infancy. 

We hear two stories of palliative care experiences in the neonatal region, and from nurses working across the region to improve understanding of and access to perinatal palliative care, including education initiatives and dedicated posts that are supported by local hospices. 

Key challenges described are around access and understanding, and ways to improve include early identification and relationship building, familiar staff who are engaged in memory making and suitable bereavement spaces, as well as being able to hold uncertainty together. 

Watch time: 75 minutes

From the Learning from Excellence team and Civility Saves Lives, this excellent podcast series gives us conversations with people who inspire us, about making healthcare a better place to work. Topics include forgiveness, compassion, patient safety, human factors and happiness amongst many more. Available via Spotify/Apple or their website:

Learning from Excellence

We particularly recommend series 3, episode 3: Greg Johnston - Chief Executive of Team Evie, who describes eight words to guide us on interactions with patients and families, through telling his daughter Evie's story. 

Team Evie is a charity founded in the memory of his daughter. He reflects on navigating paediatric intensive care as a parent, offering practical guidance for improving care, culture and communication around children with medical complexity and uncertainty. As a teacher in his past, he distils this into eight words, including honesty, humanity and compassion, however it is the stories behind the words which help listeners reflect. What approach might you take? How could you have done differently in a situation?

A quick guide document to understanding what quality and quality improvement are, some commonly used approaches in healthcare, and some key questions to help reflect on when QI goes well or not. 

Most useful to those new to the field of quality improvement, or those wanting to be reminded of the key points

Time to read: 14 minutes

Available at: download from health.org.uk or see attached pdf

Developed in 2023 from all evidence available: this guide to seizure management in paediatric palliative care has some handy summary principles and management strategies.

Reading time: apporx 7 minutes

Available from the APPM website here

The Southeast PPI group led a webinar entitled Siblings: I'm fine in October 2024.

In this recording, you will see examples of how siblings of children with palliative diagnoses may show their feelings and emotions through creative ways, and hear parents and healthcare professionals how to best support this group. 

Watch time: 80 minutes

(PS - we are all wearing hats as the event was held as part of ICPCN HATs on for Children's Palliative Care!)

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