SPECIALIST APPOINTMENT PREPAREDNESS
Facilitating clear communication for ultra-rare conditions.
1. DETAILS
2. CLINICAL BRIEF: SAVI (Medical Alert)
Awareness Check: Does this doctor/clinician know my child has SAVI?
Yes
3.
APPOINTMENT GOALS & OBSERVATIONS
Main Goals for this Visit:
Recent Changes or Observations: (Note any new symptoms, changes in energy, or side effects) [
4. MEDICATION RECORD
Current Medications
| Medication | Dose | Frequency | Purpose |
Previous Medications / Adverse Reactions | Medication | Year | Reason for Stopping / Reaction Details | | :— | :— | :— | | [ ________ ] | [ ____ ] | [
| Medication | Year | Reason for stopping |
5. CARE TEAM COORDINATION
Medical team
Therapy & Supports
Support Eligibility Check: Is my child eligible for:
Centrelink (Carer Payment/Health Care Card/allowance/DSP):
other supports? __________________
Will you assist with evidence for these?
Where else can we get help
6. IMPORTANT QUESTIONS
Select relevant questions to ask today:
What changes should I tell you about immediately?
How does this symptom relate to the SAVI condition?
What side effects do we need to be aware of?
How will you coordinate with the other doctors involved?
Who should I contact if I am worried?
What is the specific purpose of this treatment/investigation?
Notes / Plan:
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7. REMINDERS FOR THE CARER
- You are the expert: You know your child better than anyone else.
- Your Rights: To be heard, to ask questions, to have clear information, and to seek a second opinion.
- Requests: You can ask specialists to talk to others involved or provide a copy of clinic letters.