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Healthcare Rights Guide
For parents of children with a childhood dementia condition
Practical ways to talk with healthcare providers and stand up for your child's needs.
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Summary
This guide suggests practical ways to talk with healthcare providers and stand up for your child's needs. It includes practical tips about collecting important information, preparing for healthcare appointments, question prompts and standing up for your child and yourself, when you need to.
What is this guide?
When your child has a childhood dementia condition, the healthcare system can feel overwhelming. This guide gives you practical ways to talk with healthcare providers and stand up for your child's needs.
Your rights as a parent
As a parent, you have the right to:
- Be seen as the expert on your child
- Get clear information you can understand
- Ask questions until things make sense
- Have specialists talk to each other
- Ask for second opinions without being judged
- Be treated with respect and kindness
- Question medical advice when you have concerns
- Hope and look for the best treatment options
Getting ready for medical appointments
Make a summary about your child for new doctors
- Include their diagnosis, main symptoms, medicines, allergies, and specialists' names
- List recent changes or worries you want to talk about
- Write down your questions in order of importance
Don't rely on your memory in stressful situations
- Focus on what you really need to know
Bring important papers
- Test results or reports
- List of current medicines and doses
- Notes from other specialists
Bring someone with you
- A family member or friend can help remember what was said
- Ask them to take notes while you focus on talking and listening to what the doctor has to say
Request a longer appointment if you have a number of issues to discuss
Ask for an interpreter if you have difficulty communicating in English
Helpful things you can try saying
When meeting a new specialist
Before we start, I'd like to know what your role will be in my child's care.
Do you know about [condition]?
Will you talk with my child's other doctors?
How long will you be part of my child's care team?
I've made a summary of my child's medical history. Would you like to see it now to help understand our situation?
When you need better explanations
I don't quite understand. Could you please explain that in a different way?
I need to explain this to my family. Could you help me understand the main points?
When you don't agree with what's suggested
I understand what you're suggesting, but I'm worried about [specific concern]. Could we talk about other options?
From what I know about my child, I think [different approach] might work better because [reason]. Could we try that?
Please help me understand how this approach will help us reach our goals
When you need doctors to talk to each other
My child sees several specialists. How will you talk with Dr. [Name] who helps with my child's [specific issue]?
Could we set up a meeting with all the doctors involved in my child's care? It's hard for me to keep everyone updated.
When you feel rushed or not heard
I know you're busy, but I need to talk about [specific concern] today. It's important for my child's care.
I've noticed [specific symptom/change] that seems important. I'd like to make time to talk about this today.
When asking for a second opinion
I'd like to learn as much as possible about my child's condition. Could you suggest another specialist who might help?
I value your opinion, and I'd also like to talk with another specialist about this issue. Could you refer me?
When waiting for a follow up or referral
Did you send my referral to [the other doctor]? Can you send me a copy and their contact details so I can follow up?”
Keeping track of medical information
Make a medical folder or computer file
Include:
- Medical reports and test results
- Medicine/ medication history
- Appointment notes
- Questions and concerns
- Contact details for all doctors
Ask for copies
- Ask for copies of notes, test results, and treatment plans, either hard copy or sent by email
- Check them for mistakes and follow up if needed
- Share them with other healthcare providers
Keep a symptom diary
- Write down symptoms, medicine changes, and how they worked, including days dates and times of day, if relevant
- Look for patterns that might help your child's care
- Share these notes with doctors
When you're not being heard
Be clear about your concerns
- Stick to the relevant facts rather than feelings
- Explain how the issue directly affects your child and / or your family
Take the right steps
- Start by talking directly with the doctor
- If that doesn't work, talk to the manager or department head
- Ask for a different doctor if needed
Use formal complaint paths when needed
- Learn the complaint process for the hospital or clinic
- Contact the patient liaison officer
- Keep records of all talks and emails
Dealing with multiple specialists
Ask for a care coordinator
- Some hospitals have staff who can help manage complex cases
- If not available, ask which doctor should take the lead
Create your own central record
- Keep your own complete file
- Bring copies to all appointments
- Make sure all doctors have the same information
Ask for team meetings
- Request meetings that include all relevant specialists
- Take an active part in these talks
Looking after yourself
Know when you need help
- Standing up for your child can be tiring
- It's okay to take breaks - a break can be as simple as a cup of tea, or as big as a weekend away
Talk with other parents
- Share experiences and ideas
- Learn from others who've been through this
Use help that's available
- Accept help. Be open to this, more than you may have in the past.
- Patient support services
- Support groups
- Patient/condition - specific organisations
- Childhood Dementia Initiative resources
Remember that being a good advocate for your child and family is not a sprint - it can be a long journey. Be firm and stand your ground when you need to, but also be kind to yourself along the way.
Resources
Australian Commission on Safety and Quality in Healthcare - Information about healthcare complaints
This guide is intended as general information about childhood dementia. For specific information about your child’s medical condition please consult a healthcare professional.
Co-designed with parents whose lived experience with childhood dementia has shaped every aspect of this resource.
Funded by the Australian Government Department of Social Services.
Connect and stay up to date
If your family is impacted by childhood dementia, we invite you to receive updates and learn about ways to connect with Childhood Dementia Initiative and with other families.
