What Information Should Be in an Emergency Care Profile?

An emergency is a bad time to start searching for basic information.

If a person has a disability, communication needs, complex support arrangements or important health information, the people responding may need to quickly understand things that the person, their family or regular support workers normally know.

An emergency care profile is a concise collection of the most important information someone may need when usual support arrangements are disrupted or an emergency occurs.

That may include:

• the person's preferred name
• emergency contacts
• communication needs
• important medical conditions
• allergies
• current medications
• mobility or transfer needs
• medical devices
• behavioural or sensory considerations
• health professionals
• essential support information
• important risks
• other information the person wants responders to know

The purpose isn't to reproduce someone's entire health record.

It's to make the most important information easier to access quickly.

Emergency care information should be participant-specific

Two people with the same diagnosis may need completely different support.

The NDIS Quality and Safeguards Commission's emergency-management guidance says personal emergency management plans should consider an individual's particular supports, risks and support network.

Its guidance identifies information such as emergency contacts, important health information, medications, actively managed health conditions, health-professional contacts, communication preferences, mobility and communication aids, medical devices and certain personal-care needs.

That provides a useful starting point for thinking about an emergency profile.

1. Identification information

Keep this section simple.

Depending on the person's needs, it may include:

• full name
• preferred name
• date of birth where appropriate
• photograph where appropriate and authorised
• address or relevant location information

Only include information that serves a genuine purpose.

2. Emergency contacts

Include people who should be contacted if something happens.

For example:

• family member
• guardian
• nominee
• primary carer
• another person in the support network

Useful details can include:

• name
• relationship
• phone number
• order of contact

Keep the information current.

An emergency contact number that changed two years ago isn't much help.

3. Communication needs

This can be one of the most important sections.

A person may:

• communicate verbally
• use AAC
• use a communication device
• use signs or gestures
• have limited speech
• need additional processing time
• use Easy Read information
• have particular ways of indicating pain, distress, yes or no

Emergency responders meeting the person for the first time may not know any of this.

A short explanation can make communication easier.

The NDIS Commission specifically includes preferred communication methods in its guidance on personal emergency management plans.

4. Important health conditions

An emergency profile may need to identify health conditions that could affect urgent care or support.

The aim is not necessarily to include every historical diagnosis.

Prioritise information another person may genuinely need.

Where possible, this information should come from appropriate existing records or instructions rather than support workers independently interpreting a participant's health.

5. Allergies

Relevant allergies can be critical information.

This could include known allergies to:

• medications
• foods
• latex
• other substances

Avoid guesses.

The emergency profile should reflect known information supplied or confirmed through appropriate sources.

6. Medications

A current medication list may be valuable in an emergency.

Depending on the person's arrangements, useful information can include:

• medication name
• strength
• dose
• timing
• route
• relevant instructions

Healthdirect specifically recommends bringing regular medicines or a list of medicines when being transported to hospital by ambulance.

An emergency profile should not become an unofficial substitute for formal medication records or clinical medication instructions.

It also needs to be kept current.

An outdated medication list can be misleading.

7. Mobility, transfer and equipment needs

Useful information may include:

• wheelchair use
• mobility aids
• assistance required for transfers
• positioning considerations
• communication devices
• medical devices
• essential equipment
• charging requirements

The NDIS Commission's emergency guidance explicitly identifies mobility aids, communication aids, medical devices and relevant personal-care items as information that may need to form part of emergency planning.

8. Behavioural, sensory and support information

Emergency environments can be noisy, unfamiliar and stressful.

Some people may benefit from responders knowing things such as:

• sensory triggers
• calming strategies
• preferred communication approaches
• behaviours that may indicate pain or fear
• strategies usually used to provide support

Keep this respectful and practical.

Describe what helps the person rather than defining them by a behaviour.

9. Important health professionals

Where relevant, an emergency profile might list:

• GP
• specialist
• pharmacist
• allied health professional
• other appropriate health contacts

Not every emergency requires these people to be contacted, but their details may be useful in some circumstances.

10. What matters to the person

Emergency information doesn't have to be entirely clinical.

A short section might explain:

• how the person prefers to be addressed
• what helps them feel safe
• how best to explain what is happening
• who they want involved where possible
• particular support preferences

This keeps the person — rather than their conditions — at the centre of the information.

Keep the profile short enough to be useful

There is a temptation to include everything.

But if urgent information is hidden among ten pages of history, the profile may become harder to use.

Think in layers:

Emergency profile: the most important information quickly.

Detailed care information: additional information available when needed.

Formal records: medication, incident, clinical or other required documentation in the appropriate systems.

Keep it current

An emergency profile should be reviewed whenever important information changes.

Examples include:

• new medication
• changed dose
• new allergy information
• changed emergency contact
• different communication device
• new health condition
• new mobility equipment
• updated support instructions

An emergency profile is only as reliable as the information inside it.

Privacy still matters

Emergency information can contain highly sensitive personal and health information.

Where the Australian Privacy Principles apply, APP 11 requires reasonable steps to protect personal information from misuse, interference, loss and unauthorised access, modification or disclosure.

Access should therefore be considered carefully.

The aim is not to make someone's health information unnecessarily public.

It's to make authorised or appropriately required access possible when it matters.

Where Neume fits: the Care Card

Neume is being designed with an Emergency Care Card so important participant information can be made easier to access when needed.

The broader Neume participant profile can hold detailed care information, while the Care Card is intended to surface the information that is most important in an emergency context.

That can include relevant information such as:

• emergency contacts
• conditions
• allergies
• medication information
• communication needs
• risks
• important care instructions
• support information

The participant and appropriately authorised people remain central to deciding what information belongs in their care information.

Neume's Care Card is not a substitute for calling Triple Zero (000), clinical records, professional medical advice or an individual emergency-management plan.

In a life-threatening emergency in Australia, call 000.

Emergency care profile checklist

Consider whether an appropriate emergency profile needs:

• identity information
• emergency contacts
• preferred communication method
• important conditions
• allergies
• current medications
• mobility information
• important devices
• support strategies
• health-professional contacts
• key risks
• care instructions
• participant preferences

Then ask one final question:

If somebody unfamiliar with this person suddenly needed to help them, what would they genuinely need to know?

That's the information worth prioritising.