"We Asked. People Told Us. Hospitals Need to Listen."
Everyone has the right to good healthcare.
But people with intellectual disability told us that going to hospital can be difficult.
Some people do not understand what doctors tell them.
Some people feel that doctors do not listen.
Others have to tell their story again and again.
This needs to change.
Speak Out Advocacy asked people with intellectual disability about their experiences with hospitals and healthcare.
We used their feedback to tell the Australian Government what needs to change.
Here is what people told us.
1. Talk to Us in Ways We Understand
People told us that doctors sometimes use words that are hard to understand.
Doctors can also talk too quickly.
This makes it harder for people to understand their health and make decisions.
One person said:
"Take the time to really listen to us and talk to us properly. No big jargon words."
People want:
Easy Read information.
Simple words.
More time to ask questions.
Written information they can take home.
What needs to change?
Hospitals must give people information they can understand.
2. Tell Us What Is Wrong Before We Go Home
Some people leave hospital without understanding what was wrong with them.
One person told us:
"It wasn't until the community nursing got there that I actually found out what I had when I was in the hospital."
This should not happen.
Before leaving hospital, people should know:
What was wrong.
What treatment they had.
What medicine they need.
What they need to do next.
What needs to change?
Hospitals must give people clear information about their health and what happens next.
3. Listen to Us and Treat Us with Respect
People told us that doctors do not always listen to them.
Some people feel rushed or ignored.
One person said:
"Doctors that are friendlier and not rude. Probably listen more, be more approachable."
People want doctors and nurses to:
Listen to them.
Be kind and respectful.
Give them time.
Include them in decisions.
What needs to change?
Doctors and nurses need more training about intellectual disability and how to support people.
Everyone deserves to be treated with respect.
4. Give People the Support They Need
Everyone is different.
Some people need extra support when they visit hospital.
For example, a person might need:
A longer appointment.
Information in Easy Read.
Someone to help them communicate.
Extra time to make decisions.
These changes are called reasonable adjustments.
This means changing how a service works so people with disability can use it fairly.
What needs to change?
Hospitals must ask people what support they need.
They must make sure that support is provided.
5. Have Someone Independent Who Can Help
Hospitals can be confusing.
Sometimes people need help to understand what is happening.
One person said:
"I think they need to really investigate having an independent disability liaison."
This means having someone who can help people with disability when they are in hospital.
This person could help people:
Understand information.
Talk to doctors and nurses.
Know their rights.
Make their own decisions.
Get the support they need.
People should also be able to get help from an independent advocate.
An advocate helps people speak up and protect their rights.
What needs to change?
Hospitals should provide access to disability liaison workers and independent advocates.
6. Stop Making Us Tell Our Story Again and Again
People told us they often have to explain their health and disability to different doctors and nurses.
This can be frustrating and stressful.
One person said:
"So then it goes to all the correct people that it needs to go to, and we don't have to explain ourselves 50 times."
People want hospitals and doctors to share important information with the right people.
This should happen with the person's involvement and permission where required.
What needs to change?
Hospitals, doctors and other health services need to work better together.
People should not have to keep telling the same story.
What We Want the Government to Do
Speak Out Advocacy wants the Australian Government to make six important changes.
Make health information easier to understand.
Explain people's health and treatment before they leave hospital.
Train doctors and nurses to better support people with intellectual disability.
Make sure people get the extra support they need.
Give people access to independent disability support and advocacy.
Help hospitals and doctors work better together.
These changes would help make healthcare safer and fairer.
The Most Important Message
People with intellectual disability have the same right to good healthcare as everyone else.
People told us they want to:
Be listened to.
Understand their health.
Be treated with respect.
Get the support they need.
Make their own decisions.
Feel safe when they go to hospital.
People with intellectual disability know what needs to change.
Now hospitals and governments need to listen and take action.
Read Speak Out Advocacy's full submission:
Our submission is about the Draft National Safety and Quality Health Service Standards (Third Edition). These are rules that help hospitals provide safe and good healthcare.
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