Welsh Research and Education Network
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‘The Palliative Care Journey: Managing Uncertainty’
Guest blogger Dr Tim Warlow
All Wales Paediatric Palliative Care Network
Following the success of last years All Wales Paediatric Palliative Care Network Conference, the team are excited to introduce the much anticipated 2018 conference. This year we will be exploring the palliative care journey from the perspective of the child and family. Hearing from the families themselves, the day will follow their journey from diagnosis through to bereavement. Some of the questions we will be asking include:
• When should palliative care be introduced and how do I raise the issue with families?
• How do I support families whilst making difficult decisions about their child’s care?
• What are the spiritual needs of families at the end of their child’s life?
• How do I manage difficult and unfamiliar symptoms at the end of life?
• How do I approach uncertainty and grief?
• How can Ty Hafan Children’s Hospice help me to provide holistic care to families?
When working with families of sick children, many of the most challenging issues we face are also the most rewarding when done well. This day aims to unveil those daunting aspects of care, provide ample opportunity for discussion, and hearing from the expert parents and professionals as to how we can serve our families better.
The morning will focus on introducing palliative care and decision making, especially relevant in light of recent high-profile media cases. We will consider how we can involve children better in decisions relating to their care, collaborating with families to ensure they feel listened to and valued whilst navigating legal and ethical uncertainties.
Next we will hear from families of children with life limiting conditions themselves. What were the most challenging times, and what actions of professionals were key to their palliative care journey? What was helpful, what was harmful? We will consider how each professional on their journey played a key role in ensuring excellent holistic palliative care and what we can learn from one another.
Finally, the afternoon will include a series of breakout groups to provide opportunity to really get stuck in exploring an aspect of the palliative care journey that is a priority for you. There will be time to discuss and ask questions in a smaller group setting. Topics include supporting children and families at the end of life, managing difficult symptoms, supporting grief, bereavement and spiritual care, and how to support staff including debriefing.
Last year’s conference was booked up quickly and over 100 delegates had a fantastic day. Now in its fourth year we have built on the lessons of previous years, responded to your feedback, and produced a day which promises to be challenging, rewarding, and a fascinating insight into the lives of our patients and families through their own eyes.
Here is some feedback from last year’s conference as a taster of what delegates took away:
“Learnt many new things. Was challenged on preconceptions and pre-existing myths of Palliative Care. Enjoyed the professional, but personal element for some speakers / discussions.”
“ Excellent day from start to finish, sessions we interesting, informative and thought provoking.”
“I was hooked from start to finish”
“The case studies/discussion groups with the panel of different professionals involved with the neonate and their families’ journey were excellent and thought provoking. These were great for learning about how processes can work well and can adapt along the way.”
We look forward to you joining us in October
Date: 18th October 2018
• Location: Park Inn by Radisson Hotel, Cardiff City Centre
• Cost: £32 per person (£16 subsidised tickets available for students and upon individual request)
• Bookings and information: firstname.lastname@example.org
Dr Annabel Greenwood