Patient and Family Advisory Groups

1. Patient and Family Advisory Groups Development of a partnership model for FAMILY-centred care

2. Why? True family-centred care requires that: • People are treated with respect and dignity • The healthcare provider has the desire to communicate and share complete and unbiased information with patients and families in ways that are affirming and useful • Patients and families are encouraged and supported in participating in care and decision-making at the level of their choosing • Collaboration amongst patients and families and their care providers occurs in programme and policy development • That in working with patients and families, care teams are not simply doing things TO and FOR them

3. What did we do? • Two groups – Starship and Canterbury • One with parents one with patients • Development of a way of working/ setting ground rules • Terms of reference • Identification of key issues to work on first • Tangible projects • Involving others

4. Starship The PFAG exists to: • Explore the Starship patient experience/ journey and discuss how we feel about it in an honest, open and non-threatening environment • Develop a group of expert advisors, both staff and parents who represent patients • Identify challenges and solutions to those challenges to effect change and encourage quality improvement in an environment of true partnership The PFAG will use its time to: • Offer real, workable solutions to the people who have the power to make change within the broader Starship Team • Use facts and figures that are already available and make presentations regarding savings that can be achieved to free up funding for other areas • Work with the Starship Services Manager as a link with the group to achieve outcomes

5. We will work with these ground rules in place to ensure our time together is productive: • There are no ‘sacred cows’ we come together to honestly analyse and discuss what is good and what needs to change • We will keep our discussions to the issues and challenges and will not make or take comments personally • We will let everyone in the group have an equal say. Quiet participants will be encouraged to speak

6. Canterbury • Scope: The CCF Adult Patient Advisory Group is an advisory group dealing with issues related to both patient and non-patient issues within the CF Adult Service in consultation with relevant staff and external agencies. • Purpose: The aim of the CCF Adult Advisory Group is to act as an advisory resource to the Canterbury CF Adult Service.  Our objectives are to collaboratively work with the CF team to actively participate in the development of new programs, review recommendations and provide input with the ultimate goal of shaping a service that is patient centred, efficient and cost effective.  This partnership will assist in identifying and addressing areas of concern and result in more effective planning to ensure that services really meet the needs of CF patients.

7. Responsibilities: • To provide feedback and input from a patient perspective on issues identified within the group or externally referred to the group. • To raise issues and recommendations, from a patient perspective, which it would like the Canterbury CF Adult Service or Hospital Senior Management to consider. • To maintain a strong and positive partnership between staff and patients, with an emphasis on planning and improvement in patient care and service

8. Tangible Outcomes • Welcome to Starship brochure • CF patient website on CDHB web • Patient newsletter for all CF adults from CDHB • Engagement with Service Management team at Starship • Patient survey results on food quality currently being considered • Two further CF branches starting groups of their own • CF CEO presenting to Disability Sector CEO group later in the year, on the development of the groups