Recommended resources

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.