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At Helen & Douglas House, giving high quality palliative care for children with life-limiting conditions and their families is incredibly important to us. Alongside delivering this care at home, at hospital or in our hospice in Oxford, our doctors also contribute to, and host, important paediatric palliative care conversations. Here, Dr Charlotte Holland one of the doctors at Helen & Douglas House, talks about the palliative care education webinar series’ she hosts alongside other healthcare professionals, including exciting plans for more webinars in 2025.
Charlotte Holland

Charlotte Holland

Consultant Paediatrician

Charlotte is one of the doctors at Helen & Douglas House. As well as helping to provide the best care for the children at the hospice, she is also passionate about contributing to paediatric palliative care conversations and education.

In 2024, we hosted our 3rd Principles of Paediatric Palliative Care (PPC) evening education webinar series, with a focus on ethics. The idea was born out of a collaboration between Helen & Douglas House and Oxford University Foundation Trust colleagues, to address the thirst for knowledge and sustained improved understanding of specialist paediatric palliative care, with series 1 focusing on an Introduction to PPC and series 2 on dealing with death & dying. Helen & Douglas House medical and nursing teams have been integral to its continued delivery (often featuring as expert speakers!) and are some of our most regular attendees. And Genny, our wonderful clinical administrator is the digital whizz-kid behind the scenes, tirelessly sending the link to yet another latecomer!
For this ethics series, there were 7 sessions in total:

1. Difficult decisions & how to make them.

2. Tolerating risk when no option is ‘good.’

3. Ethics panels & mediation: how can they help?

4. Withholding or withdrawing: is there a difference?

5. Survival in extreme prematurity: challenges faced.

6. Approaching adulthood: challenges faced.

7. Spirtual support where there are ethical challenges.

For each session, healthcare and associated professionals from across the South of England (particularly good representation from Oxfordshire, but also beyond – we have a keen professional currently living in the Netherlands who joins!) attend, from nursing and medical backgrounds.  Format varies, but will usually include an anonymised case presentation from a colleague or a family member themselves, an expert speaker to lead on education content and facilitated Q&A. We hold it online in the evenings, as for many, it can be difficult to protect time for learning and reflection in the working day, but we also record sessions for catch-up.

These series’ have proved emmensely popular with healthcare and allied professionals that attend. As well as clinical and healthcare professionals attending these sessions, the conversation is also welcome to those without clinical background. Some non-clinical Helen & Douglas staff have also attended these sessions and found them extremely thought-provoking.

Highlights from these sessions

  • Our very own Dr Emily Harrop presenting an ‘ALARP’ (As Low As Reasonably Practicable) model of risk alongside an Air Safety Expert Ronnie, exploring how sometimes with complex cases we have to accept an element of risk but achieves such higher benefit (an example would be a child dependent on a tube to help them breathe called a tracheostomy, who would be stuck in hospital if we accepted no level of risk but greatly wishes to be at home)
  • Supporting a parent and grandparent speaker to talk about difficult decision-making for their little girl in intensive care, exploring what helped them through this journey and what they felt could have been done differently – we are particularly grateful to this family, and they had our highest ever live audience of 65 attendees, and many more who have viewed the session on catch-up!
  • Our youth worker Polly Baker-Windsor highlighting physical, emotional, educational and social needs of our teenagers, the ethical and legal challenges that they or their families may start to experience as they are approaching adulthood
  • Rev Dr Paul Nash giving us the space and insight to examine our own views and challenges with spirituality, and consider how we may best address the needs of our children and families
  • Trying out our acting skills to demo the way mediation can help

Feedback

We collect feedback each session, and consistently people rate it as useful/highly useful for their roles. Sessions always seem very positively received:

“Really thought provoking that we need to completely wipe personal agendas and just listen, reflect what we hear and check we have understood”

“This has been a really interesting introduction to an area of palliative care that I have no experience of. The wealth of experience that has been shared, the empathetic approaches that have been described have been enlightening. Thank you”

“Really knowledgeable and pragmatic inclusive approaches discussed to spiritualty and spiritual care”

Future webinars

And people keep asking for more sessions! And so, we launch our 2025 ‘Spotlight’ series: shining a spotlight on palliative care principles and challenges for each paediatric specialty in turn. We know the children we care for are managed by multiple sub-specialty doctors at different points in their time, including neonatal, respiratory, neurology, community teams, intensive care and more. Only by talking to each other, and learning from each other, can we best deliver patient- and family-centred care across all settings – the true holistic nature of palliative care.

Session topics for the 2025 series include:

 

  • Paediatric Palliative Care & Research
  • Paediatric Palliative Care & Community Paediatrics
  • Paediatric Palliative Care & Fetal Medicine
  • Paediatric Palliative Care & Paediatric Intensive Care
  • Paediatric Palliative Care & Respiratory
  • Paediatric Palliative Care & Oncology
  • Paediatric Palliative Care & Community Teams
  • Paediatric Palliative Care & Safeguarding
If you would like to know more about these sessions, or would like to attend one of them, please contact [email protected]
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