Rare Care Centre

Disclaimer

These guidelines have been produced to guide clinical decision making for general practitioners (GPs). They are not strict protocols. Clinical common-sense should be applied at all times. These clinical guidelines should never be relied on as a substitute for proper assessment with respect to the particular circumstances of each case and the needs of each patient. Clinicians should also consider the local skill level available and their local area policies before following any guideline.

Introduction

The Rare Care Centre has been established to address the challenges faced by children and their families living with a Rare or Undiagnosed Disease (RUD). As a state-wide cross-sector care coordination service, Rare Care supports families through navigation, integration, coordination, and advocacy for services and care across a range of sectors including health (primary and tertiary), education, disability and social services. Rare Care also increases awareness of and access to appropriate resources and services for families.

The cross-sector care coordination team provides an outpatient time-limited service and includes:

Paediatric nurse coordinators
General Practitioner
Consultant Paediatrician
National Disability Insurance Scheme (NDIS) navigator and liaison
Genetic Counsellor
Clinical Nurse Specialist-Mental Health
Senior teacher

When to refer to the Rare Care Centre:
1. Patient has a rare disease (affecting less than 1 in 2000 people),or is undiagnosed with a high probability of having a rare disease.

AND

2. Patient is receiving ongoing care from a Consultant including:

a. Hospital based paediatrician e.g. Armadale, Fiona Stanley, Port Hedland, Albany
b. Community based paediatrician e.g. Child Development Service
c. Private paediatrician

AND

3. Has an identified current gap in needs that is not being addressed by another service. This may include medical management, care coordination, care closer to home, welfare, genetic counselling, school, mental health and wellbeing, transition to adult services, NDIS, family information and resources.

Important note:

All children referred to Rare Care remain under the care of their Consultant and/or paediatrician.
We do not accept referrals for paediatric assessment.

How to refer

Routine non-urgent referrals from external Consultant/Paediatricians should go to the Central Referral Service (CRS).

Please email or call to discuss referrals via:

Email: PCH.RareCareCentre@health.wa.gov.au or

Phone: 0427 614 544

Please note we are currently not accepting referrals from General Practitioners (GPs).

Essential information to include in your referral

Name and details of patient and caregiver, including hospital (UMRN) if known.
Name and details of Consultant/Paediatrician managing the child’s care.
Evaluation of support needs:
- Document the gap or reason for referral.
Medical history:
- Include all relevant medical records, prior diagnostic tests and specialist reports.
Consent:
- Please discuss referral with parent/carer and gain verbal consent to refer.

Useful resources

Reviewer/team:	Rare Care Centre – Colin Derrick, Claire Bowden, Faye Morgan	Review date:
		Date:

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