Bereavement – Community Advisory Group

Children’s Health Queensland Bereavement Service acknowledges the power of the lived experience when responding to the needs of bereaved families whose child was cared for through CHQ and who has died. The Community Advisory Group (CAG) works in collaboration with CHQ Bereavement Service, to directly integrate the voice of bereaved family members in all aspects of service design, development and service delivery.

  • Provide consumer guidance and input to the strategic direction of CHQ Bereavement Service;
  • Provide consumer voice and experience to all aspects of program and project development;
  • Enable consumer advocacy with CHQ and the broader community throughout Queensland;
  • Support CHQ to achieve compliance with National Safety and Quality Health Service Standard 2:  Partnering with Consumers.
  • Provide CHQ Bereavement Service with feedback on user needs and opinions on a variety of service components, initiatives and issues;
  • Participate on major service development projects to provide consumer input and feedback in an advisory capacity;
  • Represent the community of bereaved families whose child was cared for at CHQ and has died, and commits to honoring this collective experience by ensuring transparency in disseminating advisory group actions and updates.
  • Advisory consultation: the CAG works collaboratively with CHQ Bereavement Service about service plans and development;
  • Diversity of representation:  all efforts are made to include a balanced and diverse membership that reflects the diversity of bereavement experiences;
  • Fair and transparent:  engagement is focused on real opportunities for bereaved family members to influence decisions in relation to service development, improvement and review;
  • Timelines: whenever possible, the advisory group is offered sufficient time to provide meaningful involvement and feedback while balancing the need for timely decisions and outputs;
  • Variety of consultation methods: different methods are used to gather feedback from the extended network of bereaved family members throughout Queensland in order to broaden opportunities for participation (eg. Surveys, regional community meetings, online tools, focus groups).
The CAG is comprised of 15-20 active members. This number fluctuates over time depending on service needs and priorities. Bereaved family members who have expressed an interest in joining the CAG act as a representative with a personal lived experience with:

  • Children’s Health Queensland; and/or
  • The previous Royal Children’s Hospital or Mater Children’s Hospital; and/or
  • Other health facilities throughout Queensland and Northern New South Wales who partner with CHQ as a state-wide service;
  • Being a bereaved parent who is also an employee of Children’s Health Queensland or the Children’s Hospital Foundation.

The CAG also includes the following key stakeholders as associate members:

  • CHQ Bereavement Coordinator;
  • PPCS Bereavement Coordinator;
  • Additional bereaved family representatives who may be invited to attend based on need;
  • Service partners and other CHQ representatives who may be invited to attend based on need.
Meetings are held quarterly for a maximum of two hours. Additional meetings are called as necessary to address any matters referred to the committee or in respect of matters the committee wishes to pursue within its terms of reference.

A letter from a bereaved mother

You are in my thoughts

A member of the Community Advisory Group has crafted a deeply personal letter to share with other bereaved families. These compassionate words are intended to provide comfort and support.

Dear Family,

I am deeply sorry for the loss of this precious child in your family. Words cannot always express what you must be experiencing and feeling right now. I too, understand what it is like to lose a child and my children have experienced the deep loss of a sibling.

A few years ago, my child passed away at nearly 10 months, from a rare and debilitating, metabolic disease. The grief we experienced as a family was overwhelming, as we saw all of our hopes and dreams for our child ebb away at the finality of our child’s death. I remember feeling so torn between my deep sense of loss and great love for my child who was no longer with us and my family who remained, reeling in our grief and desperately needing the support of each other.

I discovered that I have to be kind to myself (and my family) and give myself permission to feel what I need to and not have any expectations or time frames on my grief. I will slowly heal and recover in the way I need to, and this is my own journey. I can share my pain and talk about my child I miss. I can also hold my child tightly in my heart and choose not to share my precious memories because the pain of it is too great to unveil. Either is acceptable. But however, I choose to do this is always based upon honouring my child in the way I see fit. You will also find your own ways to honour your child in special celebrations and occasions and keep their memory alive.

I remember a friend so aptly explaining to me about how grief comes in waves – sometimes the waves are small, and other times they are crushing and huge and we feel powerless to stop them. Nevertheless, waves will still come in varying intensity and yet life will somehow continue. Life will become meaningful and purposeful again. Give it time, however long that may take. You are not alone. Others have experienced this journey also and somehow survived it. I have heard it told many times that the loss of a child is the greatest loss a person can face. Perhaps, like the butterfly, you can go through a great deal of transformation and darkness and yet still become something beautiful, despite your pain. Do not give up hope. This is not the end of your story.

Bereaved Parent

Contact us

Children’s Health Queensland Bereavement Service Coordinator
Neisa Glennon, BSW
t 07 3068 4476