For patients and families

We're here to support your family

We understand that every family's journey is unique. Becoming connected with our Paediatric Palliative Care and Hospice Service (PPCHS) means you have a team that will walk alongside you, helping ensure your child and family receive coordinated care, support and guidance that reflects your individual needs, goals and what matters most to you.

Our focus is on helping children and families live as well as possible, while providing support through the challenges that can come with caring for a child with a life-limiting condition.

Support can begin at any stage, including from the time of diagnosis, and can be provided alongside treatments aimed at managing, improving or curing a condition.

Care is provided through three interconnected streams the Specialist Paediatric Palliative care team based at PCH, Sandcastles (Boodja Mia) Children’s Hospice and the Family Support and Outreach team.

We work closely with your child's healthcare team and can support your family at home, in hospital, in the community and at Sandcastles (Boodja Mia) Children's Hospice.

Family Support and Outreach

Every family receiving care through our service can access support from our Family Support and Outreach Service.

The Family Support team is part of the PPCHS and made up of Family Support Workers and a Youth and Sibling Worker. We work closely with your existing healthcare team to support the wellbeing of your whole family, including parents and carers, children and young people receiving care, brothers and sisters, grandparents and extended family members, and other important people in your child's support network.

The Family Support and Outreach team works alongside families to provide consistent, coordinated support throughout your journey. We understand that a child's illness can affect every part of family life, and our role is to help ensure you feel supported, informed and connected to the services you need.

The team can provide:

• emotional and psychosocial support for children, young people, parents, carers and siblings
• advocacy and guidance when navigating health, and community services.
• assistance accessing available supports and resources
• practical support and information to help families navigate challenges as they arise.

Our role is to provide emotional support, guidance, advocacy and coordination, helping your family navigate challenges, connect with services and focus on what matters most.

Every family accepted into our service is automatically allocated a Family Support Worker. There is no separate referral process required to access our support.

Your Family Support Worker provides a consistent point of contact who can help you navigate services, coordinate supports, advocate for your needs, and offer guidance throughout your journey. As your family’s needs change over time, the support you receive can change too. 

Sandcastles (Boodja Mia) Children’s Hospice

Located in Swanbourne, Sandcastles is Western Australia's first purpose-built children's hospice and provides a welcoming, home-like environment for children, young people and families.

Sandcastles can support families through:

• Planned and emergency respite stays.
• Symptom management and specialist care.
• End-of-life care.
• Family support.
• Bereavement support.

Many families describe Sandcastles as a place to rest, connect, spend time together and create meaningful memories in a supportive environment.

If you would like to learn more about accessing Sandcastles, please speak with a member of your PPCHS team.

Learn more about Sandcastles (Boodja Mia) Children's Hospice. 

Specialist Paediatric Palliative care

Our Specialist Paediatric Palliative Care team provides expert clinical care and advice for infants, children and young people with life-limiting conditions across Western Australia, including regional and remote communities.

Based at PCH our specialist team works through inpatient support of children working alongside the treating team, outpatient palliative care clinic and collaboratively with local hospitals, community health services, GPs and palliative care providers across metropolitan, regional and remote WA.

The team includes specialist doctors, nurses, a nurse practitioner and social work support. Working alongside your child's treating team, we provide specialist paediatric palliative care advice, clinical nursing support and assessment tailored to your child's and family's needs.

The team can provide:

• inpatient consultation and support while your child is in hospital
• specialist assessment and management of symptoms, including pain, seizures, irritability and breathing difficulties
• advice and support to help maximise comfort, wellbeing and quality of life
• information and guidance about medications, equipment and care options to support informed decision-making
• outpatient appointments, including clinics, home visits, telephone and videoconference consultations.
• clinical nursing support and guidance throughout your child's journey
• specialist end-of-life care advice and support when needed
• education and consultation for healthcare professionals involved in your child's care.

Support may be provided in hospital, through outpatient clinics, at home, or via telephone and videoconference appointments, helping families access specialist advice wherever they live in Western Australia.

Helpful resources for families

Here for You

The Here for You resources, developed by Palliative Care Australia, provide information and conversation prompts that families may find helpful when speaking with their palliative care team.

The resources can support discussions about care, planning, support needs, decision-making and questions you may have throughout your child's journey.

Access the Here for You resources.

A Family Companion

A Family Companion has been developed for parents and carers of babies, children and young people living with a life-limiting condition or illness.

The resource aims to help families prepare for some of the situations, decisions and challenges that may arise during their child's illness. It provides practical information, guidance and support to help families feel informed and empowered throughout their journey.

A Family Companion is available in:

• English
• Arabic
• Vietnamese
• Simplified Chinese
• Traditional Chinese

Download A Family Companion.

Need support or have questions?

Your PPCHS team is here to help. If you have questions about your child's care, available supports, Sandcastles or services that may benefit your family, please speak with a member of your PPCHS team.

You do not need to navigate this journey alone. We are here to support your child and family every step of the way