My journey alongside my daughter under paediatric palliative care was only five months, but I was in that space for a number of years with my daughter having a rare and complex life limiting condition from when she was 12 months. Cosette was 5 years old when she passed away and spent over half her life in the Royal Children’s Hospital. I experienced exhaustion in providing ongoing 24-hour care on my own attending to my daughter’s high medical needs. Respite is imperative for carers and families need to be provided adequate support to prevent carer burnout.
Quality of life stands out for me from my experience with Cosette, who was immune supressed for lengthy periods of time and I was constantly looking at the possibilities of how I could bring joy to her world, whether she was at home or in hospital.
I am a peer support worker for ‘Syndromes Without a Name’ (SWAN), facilitating monthly gatherings for families who have children with rare or undiagnosed conditions. I am a member of the SWAN Bereavement group and involved in advisory groups with the Royal Children’s Hospital in a Lived Experience Adviser role, where I have a voice and can make a difference to facilitate change.
I would like resource packs to be provided to caregivers so they can make informed choices – clearly outlining the importance of self-care, with information and website links listed with appropriate palliative supports. When you are navigating medical treatments and changes in your child along with team meetings and organising siblings, life can be overwhelming at times.
I have a vision of supporting families under palliative care with trained peer support leaders to listen and offer compassion and understanding by those who have lived experience. I am passionate about family’s wellbeing under palliative to end of life care and continued through the grief and bereavement that follows after a young person dies.
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