The lives of families with children with high medical needs will be transformed with funding enable them to spend more time at home, rather than in hospital.

These children are at high risk and so families end up spending months in hospital. We will provide the families with the medical support and training so they can leave hospital sooner, and go home safely.

Many children and their families want to spend as much time as possible outside of the hospital system and in a home environment. This is often difficult because the needs of their children are very complex. There are inconsistencies with the level of assistance that families receive not only across jurisdictions but across hospitals. Sometimes services exist but it is difficult for families to know where they are or how to apply for them.

  • $1.75 million for a trial to help children with high medical needs and their families spend less time in hospital.

Funding will be provided to the Heart Centre for Children at Westmead for an additional nurse who will provide support for children whose primary diagnosis is a congenital heart condition and who may have other co-morbidities (for example: pulmonary; brain injury) who live more than 100kms from Westmead to be supported closer to their home (between treatments at Children’s Hospital Westmead). This will inform how these services can be extended to other hospitals;

Palliative Care Australia will be funded $3.25 million to develop a national paediatric palliative action plan to:

  • Provide families of children with high medical needs and life limiting conditions with a single place to go for support and information

Support the Paediatric Palliative Care online resource hub, website and service directory to become the information centre for families seeking assistance with children who have high medical needs and life limiting conditions.

Provide Paediatric Palliative Care Australian and New Zealand (PaPCANZ) with funding to run an information service assisting hospitals, high care and palliative care providers to support children with complex medical needs and their families.

Coordinate the development of parent training guidelines so parents (and medical staff) are given consistent advice across hospitals.

  • Coordinate a national approach to providing practical assistance to children with high medical needs and life limiting conditions

Ensure that the provision of home enteral nutrition (Hens), monitoring for home use and suction of home use is consistent across jurisdictions.

Ensure that access to information and services is available to children and their families regardless of where they live.

Develop national guidelines to support families to have choice about how end of life care is provided to children with a life limiting condition including making it possible for more families to be at home or in a home like environment, ensure resources and information is available to families and to medical and support staff; and identifying where there are gaps in adequate paediatric palliatives services.

  • Provide a national snapshot of children with high medical needs and life limiting conditions.
Research projects will inform future Commonwealth, state and territory decisions on assisting children with high medical needs and life limiting conditions, including the types of clinical, community and mental health support that may be needed