What's It Really Like?

In this last episode of the current series, Karen Charnley, Director of AIIHPC talks about their work supporting collaboration within the palliative care community.  Elements to listen out for are; the information website called The Palliative Hub (https://childrenspalliativehub.com/) the CPCSAG committee which was set up to advise and assist the HSE in the development of children’s palliative care in line with national policy, Palliative Care Week in September & the All Ireland Children's Palliative Care Conference coming up in November! 

Anne-Marie Carroll Director of Nursing for LauraLynn (Ireland's only Children's Hospice) explains how they provide specialist hospice, palliative, and supportive care services to meet the needs of children with life-limiting conditions and their families. The LauraLynn Model of Care describes support within five pillars of children’s hospice care: Direct Care, Family Support, Symptom Management, End-of-Life Care, and Bereavement Support. The aim of their Model of Care is to ensure that the right child, receives the right care, at the right time, in the right place, from the right team.

An in-depth chat with the CEO of Jack & Jill Foundation, Carmel Doyle.  Jack & Jill is a nationwide Irish charity providing in-home nursing care and respite support for children up to the age of 6 with severe to profound neurodevelopmental delay. This may include children with brain injury, genetic diagnosis, cerebral palsy, and undiagnosed conditions. Another key part of their service is end-of-life care for all children up to the age of 6, irrespective of diagnosis.

We hear how Together For Short Lives supports children with complex medical needs in the UK. Thank you, Lizzie Chambers. 

Listen to Episode 6 to learn what it is really like to be an Irish home-care nurse for a child with complex medical needs.  Thank you to Irene for sharing her passion for this special work. Also thanks to;Amanda Evans for the graphic Pixaby for the music

In this episode, we hear from Maggie who tells us What It's Really Like for her son Alex who has several life-limiting conditions and is part of a large, lucky family.  

This week Niamh Shine talks about caring for Eabha (and her three siblings) in a busy, happy family.  

*Warning *This Episode includes discussions about death in childhood.  Writer, Sharon Dempsey, talks about her son, Owen, who was diagnosed with an ependymoma brain tumour at the age of two. Owen had neurosurgery, chemotherapy, and radiotherapy but subsequently died when he was six.  Sharon recounts the diagnosis period and how caring for Owen led her to write “Extreme Parenting: Parenting your Chronically ill Child” following Owen’s death.With great thanks & appreciation to; Sharon Dempsey Amanda Evan for graphicsPixaby for Music

In Episode Two we hear from Isabella's mother, Sam.  We chat about Isabella's condition, Aicardi syndrome, and what it is like to care for her over the last eleven years and into the future. With thanks to; Samantha Hogan-Villena Amanda Evans for graphicsPixaby Codi-Media for the music 

We hear from Aisling who is the sole, full-time carer for her sixteen-year-old son, Jack, in their home in Ireland. Jack has Down syndrome, a very rare autoinflammatory disease & other complex needs. Aisling shares her thoughts, fears, and hopes for their family.  The Covid pandemic is foremost in her mind, and she explains what it is really like to care for Jack.  On World Down Syndrome Day it is magical that we have this podcast to share.  With thanks to; Aisling McNifficent our guest Amanda Evans for the graphicsPixaby Coma-Media for the music