In this section
Fibrosis Family Advisory Council (CF FAC) is a team of people who
are passionate about continual improvement to the services provided to children
of all ages and adolescents living with Cystic Fibrosis at The Royal Children’s
Hospital. The CF FAC has two types of members: parents and carers of babies,
children or adolescents who have CF, as well as staff representatives from the
Cystic Fibrosis Care Team at the Royal Children’s Hospital (RCH). We work
together to ensure consumer expertise and experience is available to the health
service. The Chairperson of the group is a position that is always held by a
parent member. All members on the current CF-FAC group have committed to be
part of the team for 2 years, come from all different backgrounds and reside in
both metropolitan and rural areas of Victoria. As such, we are committed to
constantly improving care for CF families at the Royal Children’s Hospital.
are a recognised Family Advisory Committee of the Royal Children’s Hospital,
Melbourne. This means we adhere to the policies set by the RCH, which includes
our obligation to maintain patient confidentiality.
As a group we work together in an atmosphere of trust and compassion to
improve care. Together, the Cystic Fibrosis Family Advisory Council presents a
strong group with a profound empathy towards the children, adolescents and
their families and an appreciation of organisational challenges and
opportunities in providing the best possible care to our children.
Some of our family and staff members of the CF FAC
Our vision is for patients and their families accessing our service to have the best Cystic Fibrosis services in the world - both in terms of outcome and delivering a holistic and compassionate approach to management and care. The CF FAC in collaboration with the RCH Cystic Fibrosis Care Team, want to ensure that the service provided meets the needs of children and families who are managing this condition on a day to day basis. We aim to promote and support the practices that are working well and also identify areas that might require improvement.
The Royal Children’s Hospital is committed to the principle that the delivery of health care will be based on partnerships between patients, families, and all those involved in their care. In order to achieve this partnership, the Royal Children’s Hospital has established a hospital-wide Family Advisory Council to promote and improve the RCH's approach to patient and family centred care. The Cystic Fibrosis Family Advisory Council will play a similar role, but specifically focused on the Cystic Fibrosis at the Royal Children’s Hospital.
We work in partnership with the Royal Children’s Hospital and Cystic Fibrosis Care Team to:
As a group with personal experience in living and the management of Cystic Fibrosis, we are eager to hear from families who have any specific feedback about the care and management of CF children in the care of the Royal Children’s Hospital. We seek both positive comments; ie what is working well and feedback to assist in identifying areas for improvement.
The CF FAC interacts with CF families in a variety of ways including:
The CF FAC regularly interacts with the health services at the hospital through:
In the short time we have been a group, we are delighted to have established this webpage and an email address in order to develop our lines of communication with CF families. We are currently developing a reference guide for inpatient stays in consultation with the CF Care Team.
This webpage will provide many links to support materials and details on the management and care of CF at the RCH.
Be sure to contact us if there is an issue or information you think would benefit all families to be aware of.
We would like to hear from you if you are a family member whose child has CF and is being treated at the Royal Children’s Hospital and:
We welcome CF family members joining our bi-monthly meetings on a regular or informal basis. If you would like to come along please let us know via the email below
Together we can truly make a difference.