RCH Children’s Cancer Centre Carers Network
About us
The Royal Children’s Hospital Children’s Cancer Centre Carers Network (CCC Carers Network) brings the parents, families, carers, cancer and haematological disease survivors, and RCH staff together to work on the shared goal of achieving the best outcomes and experiences for children and young people receiving care.
Children and young people receiving care face many challenges in having their voice heard during their care experience. The network of parents, families and carers who surround them are uniquely placed to support, articulate, and amplify children and young people’s needs whilst they receive expert care from the RCH’s world-leading paediatric team.
Formerly called the ‘Parent Advisory Group’, the Carers Network is always chaired by a family member and is guided by the principles of Patient and Family Centred Care. These include dignity and respect, information sharing, participation, and collaboration.
Our Vision
The Royal Children’s Hospital Children’s Cancer Centre Carers Network (CCC Carers Network) works together with patients, families, and carers so children and young people achieve the best care outcomes and experiences.
Our Objectives
The Carers Network ensures the voices of children and young people are heard by:
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- Cultivating a culture of support amongst parents, families, and carers
- Providing parents, families and carers with the knowledge and confidence they need to advocate for their child or young person as they navigate through the health system
- Building trust and a strong, mutually beneficial, and ongoing partnership between those delivering and those receiving care
- Providing the RCH with feedback on, and advocate for, the needs of children, young people, parents, families, and carers to inform the design and delivery of care.
The Carers Network supports children and young people’s voices to be heard by acting as a bridge between their parents, families and carers and their health care workforce.
Why contact the Carers Network
There are several reasons why people affected by cancer or a haematological disease, may like to reach out to the Carers Network:
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- Speak with a parent, carer or survivor who has been there before and can relate to your experience.
- Provide feedback (anonymously if preferred) that we can share on your behalf to help your family or others.
- Get help navigating the healthcare system, which can be confusing and complex, and connect you with available support services.
- Find out the best way to resolve issues or raise concerns.
- Receive support through facilitated conversations with CCC staff.
Meet the team
Family and carer members
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Kate Johnson
Kate’s son David was diagnosed in 2011 at 3 years old with Acute Lymphoblastic Leukaemia (ALL).
He underwent Standard ALL treatment – chemotherapy, steroids etc and is currently in the Long Term Follow-up Program.
Kate has a PhD in Sleep Psychophysiology and works tirelessly in the Survivorship space.
Kate and her family live in Melbourne. David is one of four. He has an older sister and 2 younger brothers.
Sheila Patel
Sheila’s daughter underwent treatment for stage 4 Neuroblastoma at the age of 3-years (late 2012 to mid 2014). Her treatment included chemotherapy, surgery, stem cell transplant, radiation, and immunotherapy. She is currently monitored in the long-term follow-up program at RCH.
Professionally, Sheila is an experienced medical research scientist. She is a passionate consumer advocate for improving cancer care for children and their families and for better outcomes for survivors.
Their family live overseas and she understands the impact of not having local family support, long hospital stays. They are also familiar with the challenges experienced post-cancer treatment in terms of schooling and navigating additional supports. Sheila is empathetic, understands confidentiality and available to talk with families.
Heather Richardson
Heather’s daughter was diagnosed with bilateral Wilms’ tumour and bilateral nephroblastomatosis in 2014. She relapsed in 2016 and again in 2020. To treat the tumour and the recurrences, Heather’s daughter has been through multiple rounds of chemotherapy, radiation therapy and multiple surgeries.
She remains under the care of the oncology and nephrology departments at the Royal Children’s Hospital.
Heather is a litigation, dispute resolution and employment lawyer. As a parent of a child who has been treated for cancer three times, Heather is passionate about survivorship and the long term effects of treatment.
Heather lives in Melbourne with her husband and their three daughters.
Ben Johnstone-McCloud
In 2021, at the age of 14, Olivia was diagnosed with Myelodysplastic Syndrome. She underwent a Bone Marrow Transplant and associated treatment later that same year. Olivia is now cancer free and undergoing health surveillance whilst completing her VCE.
Ben joined the Children’s Cancer Centre Carers Network in 2023. He is an educational leader who has previously been Principal and currently leads a team focussed on improving school performance. Ben is passionate about all aspects of adolescent cancer care.
Ben lives in Bendigo with his partner and three children who are now 20, 17 and 14.
Michelle Ratten
In 2015, at the age of 15, Timothy was diagnosed with Osteosarcoma in the fibula of the left leg. He underwent chemotherapy to shrink the tumor in his leg, and was operated on due to the extensive damage to arteries etc. It was believed he would have had his leg amputated from above the knee, but thankfully his leg was saved. Tim was then diagnosed with another tumour on his lung, which was benign and removed.
Tim is now cancer free, but unfortunately has a permanent disability in his left leg. He has no feeling from his left knee to his toes and wears an AFO to help him walk.
He is still with Peter Mac and is currently in the Late Effects Section of the hospital. Tim has just completed four years on the YCAB Board, which is part of the YOUCAN Centre at Peter Mac. He is now involved with a company called SANE Australia as a volunteer befriender on the phones for mental health. He has completed studies in Community Service and Mental Health at University/Tafe. Tim is a mad Richmond supporter and has one brother.
Michelle is from Melbourne and has worked in Curriculum in a Senior Secondary College for the past 16 years. She is very passionate about helping others and is also the Senior First Aid Officer at the College. Michelle loves walking her King Charles Spaniel and spending time with her kids.
Carers Network staff members
RCH staff representation includes:
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- Director Children’s Cancer Centre
- Nurse Unit Manager, Day Cancer Centre
- Nurse Unit Manager, Kookaburra ward
- Social Work, Oncology
- Director Quality Systems
- Director Partnerships & Consumer Engagement (Network Coordinator).
Contact us
Family members are volunteers and may check RCH emails infrequently. If your matter requires a fast response, please contact consumer.partnerships@rch.org.au to be connected with your preferred member.
Become a member
If you have experience as a parent, extended family member or carer of a child who has undergone treatment or is currently being treated at the CCC, you may be an ideal candidate to join the Carers Network.
We seek members from a wide range of social, economic, and cultural backgrounds, to fully reflect the diversity within our community.
Those who support a child or young person undergoing treatment in the CCC accumulate a wealth of experience in managing the serious illness of the child. This valuable lived experience can help current CCC families and patients. Carers Network members also draw on their other personal and professional experiences in disciplines such as health care, education, community services, law, counselling, management, finance, hospitality, full-time parenting, volunteer work, and so on.
How we operate
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- We hold monthly meetings, either via video conference or at the Royal Children’s Hospital.
- Members may meet outside the regular meetings to action initiatives and activities.
- We liaise with relevant Children’s Cancer Centre (CCC) staff members to communicate and obtain progress updates on initiatives.
- We make ward visits and seek constant feedback from patients, carers, and staff to document and positively influence the delivery of care by the CCC.
- We report on achievements and improvements, as well as issues and challenges via various mediums, including this website.
If you are interested in joining our team, please contact consumer.partnerships@rch.org.au.
