BCAC committee members Chris Walsh, Jenny Williams and Rowena Mortimer recently attended the 10th National Psycho Social Oncology Conference in Hamilton. The theme for this year’s conference was Shaking up psycho oncology practice, practicalities and possibilities. The BCAC team gave a presentation about the development and creation of Kiwi Stories of Breast Cancer, the BCAC web videos.
The two-day conference was well organised. Following a warm welcome and opening session by Fiona Pearson of the Cancer Society, key note addresses were given by Dr James Brennan, a consultant psychologist in the United Kingdom, and Dr Pamela McGrath, Senior Research Fellow, Director International Programme of Psychosocial Health Research at Griffith University in Queensland.
Dr Brennan’s address, Screening for Distress, was well received and created a clear picture of the issues facing patients and professionals in identifying and dealing with distress from a cancer diagnosis. He highlighted research showing that patients don’t tell because professionals don’t ask and professionals say they don’t ask because that they don’t have time. He also noted research supporting the economic benefits of attending to distress early.
Dr Pamela McGrath’s topic was Cancer Survivorship - Myth or Reality? She challenged, through a small qualitative study, the use of the word survivorship and claimed that many people who had survived cancer don’t like the term because, for example, it interfered with the major coping strategy of ‘getting on with life’. Despite this it is accepted terminology in research applications and policy documents.
The key note addresses were followed by a number of informative presentations including, on day two, the BCAC one. In keeping with the conference theme the BCAC presentation was entitled Pushing the Possibilities – consumers and health professionals co-design web videos on breast cancer. Chris began the presentation explaining the motivations for and development of the web videos, followed by a moving explanation from Jenny of why, as someone with inflammatory breast cancer, she wanted to be involved in the project. Rowena concluded by highlighting the importance of consumer involvement and the lack of it in New Zealand.
Positive feedback and discussion following the session reinforced the value of BCAC’s web videos project as a resource for both consumers and health professionals. The web videos take on board and implement elements of New Zealand’s Supportive Care Guidelines and provide a clear example of the benefits of consumers and professionals working collaboratively in developing support resources.
Another notable session saw Hazel Nesser, from CanSupport, and Pauline Whareau of the Maori Health Community Breast Care Hauora Charitable Trust, speaking about developing Kia Ora e Te Iwi which builds on the Cancer Society’s Living Well Programme. The new initiative aims to increase Māori participation and reduce barriers to this service.
Dr Brennan delivered a second keynote session entitled Adjustment to Cancer. He spoke about the changes that cancer brings to the life trajectory, relationships, body, self and existential beliefs (why me?). He also demonstrated just what consumers and professionals can achieve in describing an Information and Support Centre in the UK that he helped to set up. The centre was designed by patients and is staffed by patients. They are trained to draw on their experiences but not talk about them. Approximately 70,000 people go through the centre each year.
A session entitled From Plan to Practice: Implementing ‘Supportive Care Guidance by Jo Anson (Central Cancer Network) and Emma Hindson (Ministry of Health) noted there is agreement that New Zealand’s Supportive Care Guidelines are fairly good but there is a lot more work to be done in implementation.
This reinforced the overall impressions of the BCAC team at the conference. While there were no new revelations and some initiatives are being tried, the issue is that more research is needed in the New Zealand context with emphasis on the patient/consumer perspective. Another on-going challenge is the planning and resources needed for the implementation of the existing Supportive Care Guidelines.
Visit www.ponz.org.nz to read abstracts for the presentations outlined here and a number of other topics discussed throughout the conference.
