As a parent of a child with cystic fibrosis, I’ve learned to trust my gut when something doesn’t feel right. We’ve had a few experiences where we’ve needed to go through different channels to raise concerns or frustrations with the hospital system to make sure our daughter got the care she needed. It’s great to see programs like this encouraging families to speak up, because parents often know when something isn’t quite right.

As a parent of a child with cystic fibrosis, I’ve learned to trust my gut when something doesn’t feel right. We’ve had a few experiences where we’ve needed to go through different channels to raise concerns or frustrations with the hospital system to make sure our daughter got the care she needed. It’s great to see programs like this encouraging families to speak up, because parents often know when something isn’t quite right.

This is so true from my experience over the years.
No matter how wonderful the medical team is, if you have any doubts speak up as a mother knows her child better than anyone.

Yes and amen to this article ! I agree with always follow your gut, you know your child like no one else does. In fact you are your child’s expert and should never stop advocating for them or speaking up. Sometimes professionals are very good in waving concerns away, all it takes is a human who listens

Even as a healthcare professional, when I took my soon to the ED when I was concerned, I felt awkward about speaking up, worried I was making a big deal out of nothing (even though i would never tjink this about a patient’s family if the roles were reversed). The message in this article is so important. Always stick to your guns. Always speak up and advocate for your kids – they can’t do it for themselves.

And honestly, some medical staff are idiots. I vividly remember the night two doctors huddled over my son’s lung x-rays. I hadn’t been allowed to accompany him to have them taken as I was pregnant. They finally told me solemnly that they were preparing to do emergency surgery as there was something in his lungs – “we don’t know what it is, but it’s definitely man made”. I took one look at the x-rays and asked if they’d taken off the battery packs for his cochlear implants, which were pinned to the back of his shirt, before the x-ray. And of course they hadn’t, and of course that’s what appeared to be in his lungs. Honestly!

We need more articles like this one. It is important for us to advocate for ourselves and our loved ones in any situation and work with professionals.

I have learned many times to always listen to your gut and speak up when you don’t think something is right. This article was a great read, our kids are our world and if we don’t feel they are getting the right help, and we feel it, we need to speak up.

You should never second guess yourself when it comes to yours or your childs health- or anyones for that matter. Go with your thoughts. It is natural to want to protect a loved one especially when it comes to health situations, and the feeling you get when you think you didnt do enough to advocate or fight for them…it is not a kind or nice way to feel. Many people have ended up being heartbroken and picking up pieces for years because of feeling they didnt do enough.

A very good and informative article. I have read so many stories about mums just knowing when things are not right and demanding second and third opinions until they got the right answer. Sometimes mums just know. It is our job as care takers of our families. Listen to your gut!

Years ago, I spoke up for my 14-year-old daughter, but my concerns weren’t fully listened to. I’ve always wished I had pushed harder. She was sent home without much testing, and two days later, she passed away.
So, if you ever have concerns—no matter how minor—please speak up and keep advocating. Trust your instincts; they are there for a reason.

This is so important for parents to know how to raise it further if they don’t think their child is receiving the medical support they need! I know this article refers to the NSW system but other systems have similar procedures just with different names. I know in QLD it’s called Ryan’s Rule.

It’s so important to follow your gut instincts and express your concerns indeed. I have never hesitated to advocate for my children in various situations and I don’t care what other people think about it. Not all doctors and medical staff appreciate it when you question them, I’ve experienced that it may result in angry indignant responses.

How true this is! While nurses and doctors are the medical professionals doing their job on the daily, we know our children better than anyone and what is ‘normal’ for them. I would always speak up if I had noticed any changes in my child’s health and encourage other parents to do so too. No question is silly!

This really is such an important issue and a good topic to discuss with people, I am often surprised that people are worried about being judged. This is not something I care about; the priority is for the care and health of everyone is my family. Parents know their children and need to work with health professionals for the best outcomes for their children.

This is such an important issue to raise, and no one should ever feel ashamed, nervous or that they are being OTT for advocating for their kids, themselves or loves ones in hospital. In QLD we have Ryan’s Rule. A three step process where your concern will be escalated if they believe the patients condition isn’t improving or is worsening.

I have never been afraid to advocate for my children and partner and extended family and also friends. It is so important to listen and to trust intuition. When people have not listened, I have persevered and kept on with insisting on care and making sure they truly listened and took action.