A personal journey from a carer to a Choosing Wisely advocate

I never expected or foresaw that I would become a carer during my lifetime. Many people don't, we just look out for family members who we love to keep them happy, content and well. To me it was the most natural thing to do.

My journey started out when I became a sibling carer for my younger brother Steve, who suffered a birth injury which resulted in him having an intellectual disability and who was later diagnosed with a rare genetic neurodegenerative disease called a leukodystrophy. I am also a carer for my much loved mother-in-law Maria who is now in her late 80's with advanced dementia.

Trying to process everything and fully understand what was happening to my loved ones is one of the hardest things I've ever had to do. Often I would feel overwhelmed and sadly not listened to by some health professionals. I was told I asked too many questions & was overly passionate.

As a carer, I wanted to understand more about how the health system worked, and joined my local hospital Consumer Advisory Group. This started me on a journey of engagement, representing consumers in the health system. In this time I learned about Choosing Wisely.

I particularly like the Choosing Wisely 5 questions to ask your doctor before you get any test, treatment or procedures. The 5 Questions are a conversation starter. It gets me thinking about what it is that I really need to ask my health professional about. I may not use all 5 but it focuses my mind on gathering my thoughts about the things that are bothering me or worrying me. Before using them I would often come home from my health appointment and think "Oh I should've asked this, or that and I forgot to tell them about this or that".

Basically the most important thing I always want to find out, and be reassured about is the why question. Why is this happening, how has this happened and how can I learn from this so it doesn't happen again.

To me the Choosing Wisely 5 Questions is a way of empowering consumers and carers to be active in the planning and delivery of our health care. The health workforce also needs to be ready to engage with consumers to provide a safe place to ask these questions.

I have promoted and used Choosing Wisely in my volunteer work as a consumer advocate in the health system, most recently as a consumer and carer representative at the WA Primary Health Alliance.

Using and sharing the Choosing Wisely resources has opened doors to opportunities. With the help of other people, both professional and consumer committee members it has started us on this journey together of empowering people across our community and our state to be confident in asking the Choosing Wisely 5 questions.