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The importance of hearing from children, young people and their families

After returning from leave and getting back into my work commitments it is well and truly time to reconnect with my blog! The last time I wrote I was about to attend the Paediatric Palliative Care (PPC) conference in Wales.

I found the conference to be inspiring and it refuelled my passion in regards to providing a model of care that supports children and families living with serious illness. It was great to meet the international leaders in PPC. And of course it is always good to meet with like-minded people who are also dedicated and passionate about their work.

As noted in my previous blog Professor Myra Bluebond-Langner was a keynote speaker. Her presentation on ‘Whose child is it anyway’ was a powerful reminder not to lose sight of the child’s role in decision making regarding treatment and care. It is important to have meaningful engagement with parents, children and young people in these discussions. Her presentation incorporated the ethical challenges of working alongside children and young people regarding treatment particularly in life-limiting illnesses.

Myra was one of many who delivered presentations that were challenging, and affirming in the care that we as health professionals provide to children, young people and their families. The delivery of services to best meet families needs is continually being reviewed at an international level.

As I have returned to True Colours I am mindful of the support and care we deliver and whether our service best meets the needs of children, young people and their families. It is important to continually check with those who receive care directly from True Colours. With this in mind, a survey will be sent out to families within the next month so that we might gain feedback as to where there may be gaps within our service, and whether the support given is meeting the requirements of families when caring for a sick child.

True Colours sends surveys out every two years, as it is crucial that our organisation is continually led by what children, young people and their families say is beneficial to them. As our organisation develops we need to scope the service delivery on what is being shared with us by children and families.

Our mission statement says, “We care for children’s wellbeing – Te Oranga O Nga Tamariki and we positively enhance the lives of children experiencing serious illness and their families”.

We will continue to do our best to meet the Child Health Strategy (1998) vision to make sure “all children are seen, heard and getting what they need”.


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