Kids Health Info

Palliative care - resources and contacts

  • When the question of palliative care is raised, you as a parent may feel confused, overwhelmed and frightened. Make sure you use the supports and resources that are available to help you.  Although no exhaustive, the following is a list of resources that you may wish to use for information, advocacy, emotional and practical support and bereavement care.

    Family and friends 

    Most parents feel the greatest help they receive is the care and support given to them by their family and friends. One of the best things you can do at this difficult time will be to accept the help and support offered by the people closest to you. Try not to shut them out. They will want to support you in any way they can but may not  know what to say or do.

    It may be helpful to be very honest and let them know that sometimes you may not want to talk with or see them, but there might be some very practical ways in which they can help.  For example, preparing meals or collecting the other children from school or kinder.

    Your family doctor or paediatrician

    Many families will want to spend as much time as possible at home. General practitioners and local paediatricians form an important part of the team caring for your child and are able to provide medical support in the community.

    The hospital treating team

    The health care professionals who may be involved in your child's care include doctors, nurses, social workers, occupational therapists and physiotherapists, education officers and chaplains. To ensure that you are not overwhelmed with offers of help, it is important that one member of the team takes on the role of coordinator. 

    You may request a coordinator to be appointed to your child's care if this has not already happened. Some families find it helpful to keep a note of all the people involved and their contact numbers, as well as questions they may wish to ask. Family meetings with key staff can also be organised. These meetings can help ensure everyone is clear about the plans for your child's care and can also provide an opportunity for you to ask questions.

    Resources and contacts

    The Victorian Paediatric Palliative Care Program (VPPCP)

    The  VPPCP is a statewide program providing support to any family of a child or young person with a life limiting illness who is treated in Victoria. It is a consultation-liaison program and will not take over from your child's treating team. Instead, it aims to enhance the care available to you and your child. The program is staffed by a consultant paediatrician, social worker and liaison nurses. They generally work behind the scenes with the health professionals looking after a child, but they are also available to speak directly with families. Any one can refer to the VPPCP for information or support, including families.

    Very Special Kids

    Very Special Kids  is a unique Victorian organisation, offering an extensive range of support to families of children with a life-threatening illness. The support is offered free and without obligation by a team of professional family support workers. Family support workers provide support and, when requested, link volunteers to families. The organisation also provides respite and palliative care at Very Special Kids' house in Malvern.

    Palliative Care Victoria

    Palliative Care Victoria develops and provides information to help people living with life-threatening illnesses and their families. It also provides information on palliative care services in your local community.

    SIDS and Kids, Victoria

    SIDS and Kids Victoria now offers services to the families of all children six years and younger who have died suddenly. Regional programs in some parts of Victoria are provided to families who have experienced the death of a child aged 18 years and younger, regardless of the cause. Ongoing bereavement support is provided by counsellors and trained parent supporters according to the wishes of the individual or family, for as long as required. SIDS and Kids offer a range of support groups and other family activities. A crisis help line is available 24 hours a day, seven days a week.

    The Compassionate Friends Victoria Inc

    The Compassionate Friends Victoria Inc is a statewide self-help service that offers support to bereaved parents, information, a 24 hour phone support hotline, grief support groups (including a sibling group) and newsletters.

    RCH Parents Bereavement Support Program

    The RCH Social Work Department facilitates a number of bereavement programs for parents, grandparents and siblings. The Social Work Department can provide information about these programs.

    • Phone: (03) 9345 6111

    For more information



    Produced by the RCH  Department of Palliative Care.  First published March 2006. Updated October 2010.

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