Listening and having an open mind, to provide truly tailored support for families

Living with a young child in palliative care is an experience that is hard to understand from the outside looking in and uniquely impacts each family. Having lived the experience and learning which big and little things made the time harder, or by contrast easier and kinder, has taught me how to help others.

The things that meant most to my family are only one part of the picture. Additionally, it is the ability to listen and learn about what matters to others in their journey that now always guides my practice in supporting families and offering genuinely tailored help, when it’s most needed.

For some families, it’s helping them to create special memories with their child when they are too tired to imagine or plan. For others, it’s about keeping the electricity on when wages aren’t coming in or supplying enough portable oxygen for walks on sunny days. It’s in setting-up an account at their local chemist, home-delivering cooked meals, or providing respite care in our children’s centre so carers can have a sleep, attend to their own medical and wellbeing needs, or even just binge watch some Netflix to escape for a while.

I am lucky in some strange way that I have walked in our clients’ shoes, and that in knowing my story others feel comfortable to share with me what they need to assist them in their journey. However, it is in truly listening and having an open mind that the best ways are found to help these families through the toughest time in their lives.  By sharing my experiences, insights and some stories from the families I have worked with over the past 10 years, I hope to encourage others in all areas of Palliative Care to embrace these two things at every opportunity.