Surviving Breast Cancer Conference
The Conference took place on 27 September 2008. The following are some quotes from conference attendees:
"All talks were very encouraging about the future for the women of Ireland with breast cancer"
"Thoroughly enjoyed the day. Very impressed with all the speakers"
"Subject matter very confidence-inspiring to a newly-diagnosed woman like me in the face of recent deluge of bad publicity"
"Very heavy duty topics in first session, very scary for survivors, lots of doom and gloom - frightening"
"Tina McGrath and Judy Caldwell were extraordinary people. Marvellous and inspirational!"
"Emotive subject, but very genial and good humoured atmosphere"
"It was very informative and I was delighted that I came to it"
"Tom Keane and Mary Murray educated the room while Judy and Tina empowered the room"
The above quotes are taken from the evaluation forms completed by delegates. The attendees rated Professor Niall O'Higgins, Tina McGrath and Judy Caldwell as the top speakers. That said, many people remarked that all the speakers were excellent and that they would not like to pick out any one. An analysis of the evaluation forms shows that overall there was great satisfaction with the conference.
The day was, on the whole, a very positive day, with participants fully engaged in the discussion. Topics requested for future conferences included psycho-oncology and lymphoedema.
Summary of the Programme
Christine Murphy-Whyte, opened the conference by summing up the events since the last EDI conference in May 2006, especially the shocking revelations of breast cancer diagnosis and 'the utmost importance and urgency of having Specialist Breast Centres in place for the diagnosis, treatment and follow-up of breast cancer'. She continued: 'This is the theme of our conference, this is your conference, women with experience of breast cancer either personally or through relatives, and friends. Your voices, your needs… And we thank you for coming.' As well as the SBCs she highlighted the need for supportive care in the community and contribution of advocacy to making breast cancer a trail blazer among cancer in general. Read full address
The well attended conference was opened by Mary Harney, who spoke of the need to implement the move to specialist breast centres. Her strong commitment to the centres and to best quality care led into the first session: Progress and Plans for Specialist Breast Centres, which was addressed by two key players in the field, Professor Tom Keane (Interim Director, National Cancer Control Programme) and Dr Tracey Cooper (Chief Executive Health Information and Quality Authority).
Professor Keane updated the delegates on progress in establishing the centres, pointing out that Irish survival statistics are poor by European standards. The plan is ahead of time and all breast cancer diagnosis and surgery will have moved to the designated centres by March 09, with 8 million euro in additional staffing, 2 million for equipment and minor renovations, transfer of existing staff and equipment where possible.
Dr Tracey Cooper's contribution – Maintaining Momentum Assuring Improvements – covered the work of HIQA in supporting quality improvements in symptomatic breast disease services and investigating services and HIQA's plans for future development to ensure quality.
Professor Niall O'Higgins pointed out that, at the 2006 EDI conference, the mantra had been 'We must do better – soon' and he detailed the improvements that have been made and the direction that must be taken. He also told the conference about developments such as Intraoperative Radiotherapy and the Biologically-based targeted therapies which will make the cancer journey significantly easier on patients than it is at present.
Mary Murray, Advanced Nurse Practitioner, spoke about the emergence of a new type of nurse led follow up clinic, such as the clinic run by her in St Vincent's Hospital, and the holistic approach taken to women in such clinics.
Another keynote speaker was Judy Caldwell, Founder of the Canadian Breast Cancer Foundation British Columbia/Yukon region. Judy described her journey from diagnosis with breast cancer to patient advocacy, ranging from her initial presentation to the Canadian All-Party women's Caucus to the foundation of the CBCF to her dragon boat initiative to the use of innovative advertising to improving women's attendance at screening to a recent round-table event to which leading experts, clinicians, advocates and patients were invited. She stressed that, although cancer patients in BC have to travel very long distances they do so for the best treatment.
Tina McGrath, occupational therapist and breast cancer survivor, gave a fascinating talk on her study of breast cancer survivors – Living to Tell the Tale – which uses storytelling to explore occupational biographies. Informed by her personal experience and seeing a cancer diagnosis as occupational disruption, this paper struck a chord with many women at the conference.
EDI chairwoman, Christine Murphy Whyte, (also ED Board member and Treasurer) presented the work of EUROPA DONNA – The European Breast Cancer Coalition and of Europa Donna Ireland as Joining Voices, Meeting Needs in Ireland and Europe (Powerpoint 157KB). Covering the advocacy work carried out at both European and national level, Christine highlighted the establishment of Breast Health Day on 15 October and the need to deliver messages on a healthy lifestyle as well as those on best diagnostic and treatment practices.