How did you become a health consumer?

When I and my son got sick, we really struggled and went from pretty much having a normal life to having a torn apart life. We had to rely on everybody. We found some really great advocates and staff, but there were some really terrible ones.

It was just inconsistent with so many ups and downs. I realised there are so many organisations out there who want to help, but we didn’t know about them and it was really hit and miss.

I built the Friendly Faces website and started to hear more and more stories and problems from others going through the health system. I knew I had to do something about it. At first, I was asked to sit on a few local health boards as a consumer advocate. I wanted to show people there is a better way. For the first time, I got back a little bit of power. I’ve been a health consumer for six years now.

Do you find that people in health listen to what you’re saying?

Because I’m not educated within health, at first I didn’t believe what I had to say would have any worth.

At first, I didn’t understand a lot – in meetings they were just talking about their diagnostics and how many complaints they had had. I used to sit there and think ‘I can’t change any of this, they have to want to listen before change can happen’.

But slowly I’ve learned to bring it back to everyday language, and I’ve realised I really have got something to say. I have made people listen throughout the health system. I’ve had input into the NSW Agency for Clinical Innovation and the Clinical Excellence Commission. I think that’s because I’ve been able to speak from the heart.

What would you like to tell clinicians about health consumers’ needs?

I don’t care how much you know, I need to know you care. For you, it might be about your training so you can operate on my head, but for me, it’s also important that you care about how I get through this as a person. As health consumers, we don’t need the Taj Mahal. We often just need someone to say ‘Are you ok, do you need a cup of tea?’.

What advice would you give to others considering whether to become a health consumer?

Stand up and be heard. We can all sit on the sideline and whinge, but if you want to make a change, get in there and do a lot of listening, build up your confidence and get a voice.

It took a while for me to believe that I had something worth saying – but now I truly think consumers are the way to achieve change.

 

For more information about the Friendly Faces Helping Hands Foundation, visit their website: friendlyfaces.info