Chairperson ANZCHOG National Patient and Carer Advisory Group
Anne Kay is the current Chair of the ANZCHOG National Patient and Carer Advisory Group (NPCAG). NPCAG was created to ensure ANZCHOG’s childhood cancer clinical trials, research projects and grant applications incorporate a consumer perspective. The membership of the group consists of parents of children who have, and have not, survived a diagnosis of cancer.
In Anne’s case her daughter Juliana is a survivor of relapsed Hodgkin’s lymphoma. Juliana was 16 years old when she was diagnosed and living in Argentina. She was brought home to Australia for treatment at the Royal Children’s Hospital in Melbourne. She finished treatment at 18 and is now a healthy 31 year old who has just had her first child – Anne’s first grandchild.
After being exposed to the Argentinian health care system Anne was so grateful that Juliana underwent her treatment in the Australian system and was always mindful of this while going through the entire experience.
“We were thrilled to be in a Cancer Centre where the doctors were so well trained and connected to other centres all over the world. We were incredibly impressed with the young and dynamic nursing staff who understood Juliana so well. The doctors were insightful, patient and experienced in treating adolescents – who can be quite tricky at times. We always knew we were in the best care.”
Anne met a lot of parents while Juliana was undergoing treatment at RCH. They would meet regularly as a group to share stories and support each other. The hospital system is difficult to navigate and trying to meet the needs of an adolescent in a paediatric setting could be difficult. Her first experience as a consumer was as a member of the Children’s Cancer Parents Advisory group where she spent time listening to other parents and noticed common themes that families were struggling with and could identify how the system was not meeting their needs.
Towards the end of Juliana’s treatment Anne saw an opportunity provided by the Victorian State Health Department to be trained in Healthcare Consumer Representation. She found this training extremely helpful and enabled her to step back from her own experience and listen to the common themes of the community. This training opened up opportunities to work with Cancer Australia, specifically with their research clinical trials by sitting on the Grant Review Committee and Research Review committee. After that she became involved with ANZCHOG and then the Onco-Fertility Advisory Group.
Juliana was not placed on a clinical trial but she was one of the first paediatric patients to undertake regular PET scans to monitor her Hodgkin’s lymphoma. This was seen as cutting edge at the time but Anne had no concerns as she trusted the science and, most importantly, she had faith in Juliana’s doctors that they were doing the absolute best for her.
Paediatric oncology has also come a long way in Onco-Fertility. Juliana was very fortunate to have a treating physician that addressed this early on and provided all the information and options available to her – which has led to her being able to now have her own children. Today patients are guided through fertility preservation options very early on, regardless of the age of the patient. There is also a greater understanding of AYA needs as well as education and support for parents and families. Anne has seen a wonderful progression of support programs for families since the time Juliana was treated.
As a member of the NPCAG, Anne has provided input into ANZCHOG guidelines, grant applications and clinical trial consent forms as well as other research projects. Anne most enjoys providing input into the clinical trial consent forms. She tries to find the bridge between the scientific method and the essential message to the parent, who is most often highly stressed, emotional and tired. She attended a Health Literacy course run by the Royal Women’s Hospital where she learnt that language is so important if you want the family and patient to action what is needed.
Through her involvement with ANZCHOG Anne has initiated and developed a health literacy information workshop for parent committee members and provided several presentations including the 2017 Australian Commonwealth Senate Enquiry, Funding for Research into Cancers with Low Survival Rates.
Anne was also Chair of the Royal Children’s Hospital Children’s Cancer Centre Parents Advisory Group from 2012 to 2018. While in this role she was involved in the development of the Victorian Paediatric Integrated Cancer Service (PICS) family resources, particularly the information sheets on Tips for Separated Families and Tips for Parents from Parents. Anne loves working with consumer groups. They all work so well together and are so dynamic.
Anne attends the ANZCHOG ASM every year as well as various other courses and conferences here in Australia and overseas. She has an appreciation for all the different disciplines but she really connects with the Psychosocial and Nursing teams – areas that really impact families.
Anne has been working with ANZCHOG for over 10 years. This is a huge commitment, but she believes it is incredibly important for parents to have a voice – to remind clinicians, scientists and psychosocial researchers that we’re all in this together, that we need to inform each other and develop a way to communicate with each other to make it easier for the system to work for families. Communication is crucial so families and the broader community can understand the process. Parents have a unique insight, knowledge and experience to share. She enjoys being part of a dynamic community of professionals and is hopeful for the future.
“I joined ANZCHOG when it was just a very small team – basically just Janelle and Robyn – and to see it evolve into a sophisticated group of professionals has been incredibly rewarding. It’s fantastic to see how far we have come”.
Below are the different health professionals and researchers we have shone a light on during September
- ANZCHOG Chair (Professor Nick Gottardo)
- Principal Research Fellow (Natalie Bradford)
- Paediatric Oncologist (Dr Tristan Pettit)
- Clinical Research Nurse (Reg Gayaman)
- Clinical Nurse Consultant (Helen Starosta)
- Pharmacist (Hayley Vasileff)
- Research Scientist (Dr Raelene Endersby)
- Senior Research Fellow (Dr Jennifer Cohen)
- Psycho-oncology clinician & researcher (Associate Professor Maria McCarthy)
- Social Worker (Tanya Alestalo)
- ANZCHOG Chief Executive Officer (Robyn Strong)