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The Parent Advisory Group

• About Us.
• The Team..
• Current Activities
• Achievements
• Feedback Forum
• News and Articles
• Contact Us

About Us

The Parent Advisory Group is a team of people who are passionate about continual improvement to the service provided to children and adolescents with cancer. The members of the group are predominantly parents or carers of children or adolescents who are, or have been, treated for cancer or a haematological disease, and several staff members representing the various disciplines of care. Having walked the path themselves, whether at the Royal Children's Hospital, Monash Medical Centre, Peter MacCallum or regional Victorian centres, the parent members have a wealth of experience to offer.

Our key objectives

• Evaluate the experience of care of parents, carers and patients using the CCC services
• Identify areas where care could be improved based on feedback from children and their families
• Communicate this experience to the service providers of the CCC and follow up actions proposed

Our vision

To advocate for world's best practice by the CCC, encompassing a holistic approach to the patient management, recognising and minimising associated stress factors on the patient and family and nurturing the family unit for a better overall successful outcome.

Our aspirations for the CCC

CCC is the benchmark to which others aspire not only in Australia but throughout the world because of the:

• Successful Cancer treatment regimes offered;
• Allied health services provision in the areas of nutrition which complement our treatment regimes and mental health which provides a more positive environment which enhances the effectiveness of our regimes;
• The environment that is healing, nurturing and positive in which the children, carers and siblings feel supported and understood in relation to their own challenges that they face;
• Opportunity for all children, carers and siblings to participate in the betterment of all facilities that are now available and those that have the potential to be developed;
• Highest quality staff attracted and retained through regular training, support, education and reward;
• Efficiency and robustness of the processes, procedures and systems that support the familycentred care.

How we relate to the parents and the other organizations including the RCH and MMC

• Casual conversations with parents and children in waiting rooms, wards and family retreats.
• Morning teas/suppers regularly organized in wards/day oncology units.
• Via this website.
• Through surveys/questionnaires.
• Liaison with Community Advisory Group meetings either by correspondence and/or representation.
• Liaison with hospital administration either through correspondence or meetings.
• Attendance at other support organisations meetings/functions.

How we operate

• Regular meetings are held usually at the Royal Children's Hospital.
• The team members meet outside meetings to follow up action items agreed.
• Liaise with relevant CCC staff members to communicate and get progress updates on initiatives.
• Seek constant feedback from children, carers and staff to document and positively influence the delivery of care by the CCC.
• Report achievements, improvements as well as issues and challenges via various mediums including this website.

The Team

Our team consists of parents and CCC staff members who are passionate about continuous improvement of care to our children. The parents have had or currently have children undergoing treatment in the CCC. These parents bring their own experiences as well as the ability to closely relate to the children and carers who are receiving the services of CCC. The team together presents a strong front which has a profound empathy towards the children and carers and an appreciation of organizational challenges and opportunities in providing the best possible care to our children.

Current Parent Members

 

Asanga Lokusooriya (Chair)	Asanga is a consulting practice director with process improvement and project management background. He has been a parent at the CCC caring for his son Dylan, during his treatment for Acute Lymphoblastic Leukaemia. Dylan was diagnosed at the age of 6 months in 2004 and as was treated at both RCH and Peter Mac.
Jenny Haig	Jenny has been associated with the CCC since 2006, following the diagnosis of her then 16 year old son James with Ewing's Sarcoma.  Over that time, she has been a regular in the wards, outpatients and day oncology, meeting many parents at those delightful social locales as well as at regular morning teas in the Parent Resource area and at numerous Challenge functions.  A physiotherapist, Jenny has worked as an Allied Health Manager in hospital settings for the past nine years.
Kevin Doherty	Kevin, a Manufacturing Engineer by profession with a heavy emphasis on process improvement and quality management, is currently a stay at home Dad. His association with the CCC of the RCH began in January 2004 after this daughter, Natasha, was diagnosed with ALL during the Christmas holidays 2003 at the age of 15 months. He has experienced the workings of the CCC, & related departments, through the multiple Emergency admissions Natasha encountered in her roller-coaster ride of chemotherapy treatment. Natasha has had need of, and continues to use, the many different disciplines within the RCH. This is of particular importance to ensure that the CCC continues to provide an all encompassing service to those families that will have need of these allied services.
Kimberly McConchie	Kimberly has spent many years working as a health professional in both acute and community health care settings. Since her son's diagnosis early in 2007, she now feels privileged to be able to offer her health professional input into ensuring all children receive optimal care during their stay within the Children's Cancer Centre.
Anne Kay	Anne Kay - mother, parent, carer of two daughters who are now in university. We as a family experienced Hodgkin's Lymphoma treatment at the CCC during Juliana's adolescent years.  She is now 'Off Treatment' and enjoying a full tertiary course load in America.  As well as a member of the Parents' Advisory Group, I am a consumer representative on Cancer Australia's Research Advisory Group, and a consumer cancer research grant assessor for Cancer Australia's Priority-driven Collaborative Cancer Research Scheme. Life before lymphoma kept me busy and full filled as an English as a Second Language teacher in Japan and with tertiary administrative roles in Melbourne.
Megan McFarland	Megan had been working as a chef and was self employed until 2005 when her son Samuel was diagnosed with ALL. She is predominantly a Monash parent but has had treatments in both Hospitals due to Samuels relapse and subsequent Bone Marrow Transplant. Megan wants to focus on the needs of Monash families.

You may be an ideal candidate to join the team

• If you have experience as a parent of a child undergone treatment or currently being treated at the CCC;
• If you have ideas, opinions and points of view that may be translated to actionable changes to the way CCC operate;
• If you are interested in working with a team to positively influence how CCC provide its care;
• We would very much like you to consider joining our team. Together we can truly make a difference.

Regular CCC Staff Representatives

• Mary McGowan, Community Liaison Manager
• Dr. Peter Downie, Clinical Director
• Helen Stewart (Social Work)
• Jane Williamson (PICS)
• (Supported by Assoc. Prof. David Ashley)

Past Parent Members (with our thanks for their valuable service)

• Sandra Morris
• Julie-Ann Rhodes
• Andrea Diprose
• Sharon Rowland
• Neville Hirth
• Paul James

Current Activities

Your feedback is our primary strength
As the initiator of all our activities, communication with families is of most importance to us. We are continually exploring ways to engage with you and receive your feedback and valuable input. Listed below are our primary means of engaging with you:

• Morning Tea or Supper in the ward gives us the opportunity to come to you and converse in person. We are good listeners and we have our own experiences to help us better relate to your circumstances. We are eager to meet whether you have any specific feedback for us to take away or not. Please feel free to approach any of our team members for a quick catch up.
• This website has a Feedback Forum which provides a number of options to send your comments to us.
• Get in touch with our Team using the details provided in Contact Us in this website.

How we organise our initiatives

The actions that we draw from your feedback are grouped into a number of portfolios to better understand their particular effect on our overall objectives and balance the workload amongst the team members.

The portfolios are based on the following model. Communication with families provides the input and feedback for identifying and executing process Improvement activities. The improvements, achievements and objectives are communicated by establishing and expanding the profile and presence of the group. All activities are executed within the framework set by the policies and procedures.

The benefits and effects of the CCCPAG activities flow back to the children and their families as well as the CCC.

Communication with Families	CCCPAG is a representative body of the wider community of children who are being treated for Cancer or related illnesses and their families. This Portfolio's primary objective is to make a connection with the families and develop avenues for effective information flow between the families and the service provider community. The input and feedback received from families are used in process improvement activities.
Process Improvement	CCCPAG benefit realisation is closely linked with the process improvement outcomes. This portfolio focuses on identifying, analysing and executing improvements to RCH processes.
Profile and Presence	It is imperative that the group has a presence in the target community which provides an identity for its members and a representation for the group's initiatives. This portfolio explores and establishes communication mediums and content.
Policies and Procedures	The portfolio provides the structural groundwork for the group. It facilitates effective governance within the group and a platform to perform the group's initiatives.

Achievements

The achievements of the team are directly attributed to the feedback€”both negative and positive€”from children and families who are receiving services from the CCC. The feedback received is treated with appropriate discretion based on the wishes of those expressing their views and translated into actions by the team.

Since 2005, the CCCPAG has evolved and continued to define its role.  The group has maintained a close, positive and respectful working relationship with the medical and allied health staff of PICS.  New members have been recruited and these individuals have shared their up to date and current experiences of the centre.

The CCCPAG has successfully influenced a wide range of areas and projects affecting PICS.  A summary of these are provided below.

Best Practice

• Input to Review of Procedural Pain Management
• Provision of feedback on emergency admission procedures and effectiveness
• Ongoing monitoring of the potential implementation of  bedside nursing handover including parent involvement
• Successfully lobbied for an increased number of dynamats on the ward
• Successfully lobbied for an increased number of wheelchairs on the ward
• Successfully lobbied pagers to be used in outpatients
• Regular liaison with parents and feedback to clinical team and PICS Project Worker on issues arising
• Input into the Development of the Long Term Follow Up Project
• Proposal to the RCH Hospital Redevelopment
• Support for nursing staff in terms of achieving a workable roster
• Provision of feedback and recommendation for outpatient staff movements for better support to families

Information Provision for Children and Families

• Involvement in the review and redevelopment of the Parent Information Handbook
• Input into development of Parent Satisfaction Survey
• Involvement in the development of Parent Education DVD
• Representation at training day for Secondary Teachers re education issues for children living with cancer
• Successfully lobbied for the development of a hot numbers card.
• Development of CCCPAG Webpage (component of the CCC webpage)
• Coordinating regular morning teas in the CCC Family Room
• Coordinating regular morning teas at Monash Medical Centre's Children's Cancer Centre

Promotion of CCCPAG

• Development and distribution of information leaflet
• Provision of a speaker to the DHS Cancer Services Provision Conference
• Contribution of articles to the CCC newsletter
• Regular morning teas in the CCC Family Room
• Regular morning teas at at Monash Medical Centre's Children's Cancer Centre

Development of Consistency between RCH and Rural hospitals and other relevant service providers

• CCCPAG includes members from rural communities

Psychosocial Support and Education

• Involvement in the Victorian Paediatric Cancer Service Psychosocial Services Project

Feedback Forum
Please send us your feedback, input, comments and suggestions using the following form. Please note that it is not necessary to identify yourself however we would encourage you to provide your name and a contact for us to confirm the receipt of your feedback and provide you with specific updates.

Your Name (optional)

Your email (optional)

Your contact number (optional)

Enter your feedback here

Your Top 10 Feedback

We have received the following feedback from you through this website or our direct conversations with you. We are working with the CCC in order to address them. If you would like to get any further information on our progress, please contact us.

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News and Articles

Shown below are some of the current events the CCCPAG team has participated in. In addition, we would like to provide access to articles, poems and artwork sent in by you. (Please note that the suitability of the articles etc are determined by the CCCPAG)

Contact Us

Email Asanga (Chair) asanga.lokusooriya@iinet.net.au

Phone Asanga (Chair) on 0402 262 668 and Megan on 0414 333 036

Email CCCPAG Team (coming soon!)

Phone Mary McGowan (CCC Staff) on 9345 4855

Download our brochure (coming soon!)

Meet us at our next morning tea/supper at the ward