System Navigation Program launched to support
people with neuromuscular conditions in WA

Neuromuscular WA (formerly Muscular Dystrophy WA) is a community-centric organisation that supports people with neuromuscular conditions (NMCs) in Western Australia. Neuromuscular conditions are a large subset of rare diseases that affect control of muscles and can impact a person’s ability to do things such as walk, talk and eat. Our aim is to improve the quality of life for people living with NMCs by providing practical help that extends beyond medical care.

Neuromuscular WA deliver social programs that build friendships, inclusivity and resilience and foster connections with others in similar situations. We also advocate for our community, fund research projects and provide counselling, equipment and NDIS support.

System Navigation Program

Being diagnosed with a neuromuscular condition at any age is difficult enough, let alone trying to navigate the disability and healthcare system, so we have partnered with the WA Department of Health to deliver a System Navigation Pilot Program.

This project will develop a formal referral system between Neuromuscular WA and Fiona Stanley Hospital, Perth Children’s Hospital, individual neurologists, Genetic Services of WA and GP Network, for people newly diagnosed with rare neuromuscular conditions.

The ultimate goal of the program is for all Western Australians living with an NMC (and their families) to have the right scaffolding of systems, services and supports around them, at the right time in their condition journey, to achieve optimal emotional, mental, and physical wellbeing and quality of life. The learnings from this pilot will also inform the planning of any further system navigation services for the broader WA rare disease community.

The System Navigator connects and links patients with the services and supports they need, at the time they need them. These services and supports are not limited to health and disability but encompass all areas such as mental health, advocacy, housing, Centrelink, carer support, employment, equipment, support groups, education, transport, sibling support and research.

The pilot was co-designed with relevant stakeholders, particularly people living with rare neuromuscular diseases, their carers, and families.

The major outcomes for program participants include:

  • feeling understood, heard, supported, and less isolated, with trust in the service

  • having greater knowledge, awareness and understanding of the systems, services and supports they need and how to access them (across health, other government departments and non-government providers) and they have a clear pathway, with better-managed expectations

  • being better able to plan for, and feel more certain about, the future and to be more confident in engaging with systems and services (and do so more efficiently and effectively)

The program also delivers long-term health system outcomes including:

  • clinician awareness, understanding of, and trust in, the pilot system navigation service

  • reduced gaps and duplication of efforts in the delivery of services and supports across WA

  • better information sharing and communication between services/systems

  • increased efficiency and cost savings with regards to clinicians no longer being the provider of system navigation themselves

The System Navigation project is now taking referrals, which you can make on behalf of others living with neuromuscular conditions, or yourself.

Please reach out to Piper if you would like to learn more about how you or your organisation may be involved, feel your organisation is a good fit to provide services to the neuromuscular community, or would like to develop a referral process.