Rare Voices Australia (RVA) cares about your privacy and personal information. By submitting this form, I agree that RVA may use/share my information with independent evaluators and researchers in line with RVA’s Privacy Statement and acknowledge that the information I provide may be used in a de-identified way for service activity reporting. Please contact the RARE Helpline team if you have questions or concerns about this: [email protected]

The following questions relate to the person living with, or suspected of living with, a rare and/or complex disease. This could be you or someone you care for. These questions should take no longer than 3 minutes to complete .

The RARE Helpline will contact you once your enquiry is received. This section will provide further information on how you would like to be contacted.

The following questions are for administrative use only. Helpline operators are to use this section to capture information about their response to this enquiry.

Children (Under 18 years old):

• The Navigator grant agreement has special conditions for activities related to working with children (e.g. Working with Children Checks for Staff, and other risk management processes to be put in place.
• If a child calls, RVA should either refer the child to an alternative service (child-specific) OR request that a guardian (adult) is with the child during the call.
• RVA Helpline Staff are not permitted to provide information to children in the absence of a guardian

Vulnerable Persons (over 18 years old):

• The Navigator Grant agreement has special conditions for activities related to working with vulnerable persons
• A vulnerable person is defined in the grant as “an individual aged 18 years and above who is or may be unable to take care of themselves, or is unable to protect themselves against harm or exploitation for any reason, including age, physical or mental illness, trauma or disability, pregnancy, the influence, or past or existing use, of alcohol, drugs or substances or any other reason.” 
• The person taking the Helpline call should be conscious of whether the person could be ‘vulnerable’.   There won’t be any definitive criteria but there could be certain indicators/signals to be aware of. If an individual could be vulnerable, RVA should request that a non-vulnerable adult support person is with the vulnerable person during the call.
•  RVA Helpline Staff are not permitted to provide information to vulnerable persons in the absence of a non-vulnerable adult support person. 

If no adult is available, complete this record by indicating in the interventions that as the User was a child or vulnerable person that assistance could not be provided

Helpline Operators should raise any concerns about a person’s safety with a supervisor immediately, using a different phone.

When communicating with a person in crisis it can be helpful to:

• provide opportunity for the person to express themselves.
• acknowledge their feelings of anger, frustration, sadness or disappointment.
• encourage the individual to think about wellbeing strategies to support that they can access.

A detailed, step by step process can be found in pages 4-7 of the Guidance for Complaint Handlers on dealing with risks of harm from the Commonwealth Ombudsman.

Attempt to create rapport and a sense of trust with the Helpline Service User, and keep them on the phone with you in order to assess the level of risk and urgency. Follow the Risk Assessment Process documented by the Suicide Call Back Service.

If the risk of immediate harm is high, use another phone to call 000 whilst on the phone with the Helpline User, and request a welfare check.

If the person has not yet harmed themselves and are at lower risk, encourage the person to contact any of these numbers:

• Lifeline 24-hour counselling – 13 11 14
• Suicide Call Back Service – 1300659 467
• ACT 1800 629 354 – Mental Health Triage Service
• NSW 1800 011 511 – Mental Health Line
• NT 1800 682 288 – Mental Health Line
• QLD 13 43 25 84 – 13HEALTH
• VIC 1300 651 251 – Suicide Help Line
• SA 13 14 65 – Mental Health Assessment and Crisis Intervention Service
• TAS 1800 332 388 – Mental Health Services Helpline
• WA 1800 676 822 (Metro) 1300 555 788 (Peel) – Mental Health Emergency Response Line

If the Service User finishes the call or had included safety concerns in their enquiry has not responded to your call, please call the Police Welfare Check Line on 131 444 (national line) for a lower-urgency welfare check.

Individuals seeking advice about how personal information is used or stored should be referred to RVA’s Privacy Policy

For Helpline queries where a person has not provided permission to be contacted (either they did agree during intake or they contacted us via social media, info or contact us) their contact details should not be included in the database/CRM.

Personal contact details should be deleted from email boxes 30 days after the query was completed

If the Helpline User’s needs and circumstances mean that service navigation or support is beyond capacity, the Nurse Navigators in the NSW and WA trial sites are available for consultation.

Perth Children’s Hospital NNP

Faye Morgan, Clinical Nurse Specialist

0427 614 544

Sydney Children’s Hospital Network NNP

Nika Kulaweera, Clinical Nurse Specialist

0475 382 737

Please complete the NNP Eligibility and Referral Form on the RARE Helpline Operator Dashboard. Once completed, you can proceed with the Helpline Enquiry Form.