In this video we hear from Rebecca, whose son Ryan has Down syndrome as well as other chronic health conditions. Rebecca talks about the difficulties she and Ryan have had with doctors and hospitals.

We want Ryan to have a good life, and we ask the Federal government to help make that happen.

Learn more about the Our Health Still Counts campaign and add your voice.

Transcript

It is not okay that he is left in this level of pain. That he is going to live a short life and it is going to be an uncomfortable painful life. That is not okay.

So my name is Rebecca Kelly. I have a son Ryan who has Down syndrome. He is very medically complex. So he had leukemia when he was 1 and he has had open heart surgery, cleft palate, chronic ear conditions, and most recently he has been diagnosed with type 1 diabetes. It is always the next thing not the last thing. Chronic pain and infections and a couple of major surgeries to try and address some of those issues.

People love Ryan. They meet Ryan and he is universally adored even though he gives them very little back in terms of encouragement. Probably 1 of the nice things for him is that he knows he is awesome. He does not need you to tell him. So yeah.

He is somewhat verbal. He can talk but mostly does not. He can not describe pain. If another child had his level of pain they would be screaming and hysterical. He is a bit withdrawn and he is grinding his teeth. So often it is not taken nearly as seriously as it should be.

By the time we turn up in the medical system we are past the wait and see. This is urgent. It needs to be addressed right now. We go to emergency and the difference between a good experience and a poor experience 99 percent of the time it is attitude. Well he has got Down syndrome. What do you expect? Oh you know people like Ryan they do not even feel pain. So do not worry about it. And we did hit people in the system we needed to deal with. You know. Of course he is going to have a short life. Really? Only if you do not do your job properly.

You know we talk about training and education and I think that is really important. And part of that is exposure. Not just seeing them when they are at their sickest or having their hardest day but actually realising that most of our lives are happy.

We love Ryan. We want him to have a good life. He does enjoy being alive. Just because you see him for this very miserable very painful day does not mean that he does not have value and that he is not loved and part of his community and part of his family.

Ryan and I would do the patient partner program here at University of Tasmania. We would go in and talk to a group of medical students in 4th year and GPs and universally they came out saying wow I learnt something. And really the biggest thing they learnt was he has value. Like they came away from that saying we have got to change this for Ryan.

I think of about 5 different families instantly who took their child to the GP. Child has got a cold. Oh they will be right. Just fluids and rest. You know. Do not worry about it. Child is clearly getting sicker and sicker. Went to the emergency department. Ahh they do not look that sick. Check their oxygen saturations. They are at 85 percent which is terrible. Oh that is normal for Down syndrome. You know. Just go home.

We had 1 child the mum was telling me about. The child stopped walking. And they took them to the doctor to see what was wrong. And were told it is normal for Down syndrome. They are a bit lazy. And they sometimes just can not be bothered walking. You know they just stop. And I think it took them maybe a week to finally get someone to actually do an X ray. And the child had a broken leg.

It is a terrifying thought of what happens when I am not here. Because the amount of work, the amount of skill, and the amount of knowledge that it takes to keep him safe in the health system is enormous. And what happens when that is not there? When you do not have a person who can dedicate a lot of energy and time and wants to see this work. What happens to him when we get there?