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Cystic Fibrosis Family Advisory Council

About Cystic Fibrosis Family Advisory Council

  • About us

    The Cystic 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.

    We 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.

    CFFAC Staff

    Some of our family and staff members of the CF FAC

    Why we are here?

    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.

    What do we do?

    We work in partnership with the Royal Children’s Hospital and Cystic Fibrosis Care Team to:

    • Identify areas where CF care could be improved – where safety or the quality of outcomes could be improved, where the service could be more focussed on the needs of patients and families, or where the principles of Patient and Family Centred Care (dignity and respect, information sharing, collaboration, and participation) could be better implemented.
    • Develop, in consultation with patients and families, solutions to the problems identified by families via the CF FAC.
    • Advocate for those solutions on behalf patients and families, within the CF unit, within the hospital, and outside the hospital when it is appropriate.
    • Maintain an active two-way flow of information between patients and families and the hospital
    • Identify opportunities for patients and families to participate in decision-making in the CF unit and in the wider hospital, where it affects CF patients and families.

    How do we connect with families, patients and services?

    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:

    • Via the email below.
    • Through regular CF FAC meetings where parents who are not FAC members are welcome to attend and give feedback on the ‘agendered’ items. (The agenda, time and location will be published on the website 2 weeks prior to the meeting).
    • Using the link on the RCH website publish a variety of information to support families and share these resources via the CF Newsletter.
    • By directly seeking the views of patients and families, via surveys, mail and where possible meetings.

    How do we interact with the health services?

    The CF FAC regularly interacts with the health services at the hospital through:

    • Regular advisory meetings
    • Informal follow-up to action items agreed
    • Liaising with the health service Family Community Advisory Committee via the Chair
    • Liaising with hospital administration either through correspondence or meetings
    • Representation on steering committees as appropriate
    • Reporting achievements, improvements as well as issues and challenges via various mediums.

    Our achievements so far

    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.

    Would you like to join the team on a regular or informal basis?

    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:

    • You have ideas, opinions and points of view that may be translated to actionable changes to the way the health services operate
    • You are interested in working with a team to positively influence how the health services provide care.

    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.

    Contact Us