Network News - Winter 2009/2010 (PDF 3.7Mb - Canadian Breast ...

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Executive Director’s Report By Jackie Manthorne CBCN’s 15 th Anniversary CBCN’s 15 th Anniversary is also my 10 th Anniversary as executive director of the Network. It has been a busy, exhilarating and sometimes hectic time for me. There have been many remarkable accomplishments as well as some setbacks. Over the years, CBCN has been able to provide more information to more people affected by breast cancer, and a variety of networking opportunities have enabled people to have their voices heard, to become informed consumers, and to develop skills in advocacy. Since 1994, CBCN has worked on policy issues to improve access to services, conducted research, produced publications, advised sector policy makers and supported the development of over 225 provincial and community level networks of support for breast cancer survivors in Canada. CBCN provides programming in the areas of capacity building, networking, information sourcing, psychosocial research and education. Some of the highlights have been: CBCN’s Work with Young Women Living with Breast Cancer In 2002, CBCN held nation-wide focus groups with 70 young women with breast cancer about their information and support needs. This psychosocial research resulted in the “Nothing Fit Me:” The Information and Support Needs of Canadian Young Women with Breast Cancer report which has been instrumental in stimulating the growth of support groups and services for young survivors. The following year, CBCN published the National Strategy and Action Plan for Young Women with Breast Cancer, which identified ways of increasing access to information and support. CBCN then held a national consultation for young women with breast cancer in Ottawa on March 12-13, 2005. 27 young women with breast cancer as well as 10 community representatives working in the area attended this consultation, representing nearly every province and territory in Canada. Past president Diana Ermel presents 10th anniversary plaque to executive director Jackie Manthorne at October 2009 Annual General Meeting In November 2007, we organized the National Conference for Young Women Living with Breast Cancer. This three-day conference, held in Toronto, was attended by over 325 young survivors. Dozens of concurrent workshops and several plenary sessions were rounded out by networking and community-building opportunities. Our one-day Intimacy and Sexuality Workshop for young survivors has been developed this year in Jackie Manthorne Executive Director of the Canadian Breast Cancer Network collaboration with Dr. Sally Kydd, co-author of Intimacy after Cancer: A Woman’s Guide. A printed facilitator’s manual and a CD containing the PowerPoint are available in English and French to organizations across Canada. Due to the nature of the material, workshops must be facilitated by qualified professionals. Please contact me at jmanthorne@cbcn.ca to receive an application form. Photo: Brian Jackson Our Work to Ensure that Breast Cancer is Recognized as a Financial Issue CBCN conducted a national survey on the financial cost of having breast cancer in early 2004. Nearly 500 Canadian survivors responded to the survey. The results of this survey appear in the National Survey on the Financial Cost of Having Breast Cancer report, which provided shocking information on the cost of homecare, child care, travel for treatment, access to treatment, specifically medication and treatment for lymphedema, and the impact of having breast cancer on one’s work life. This was the first study of its kind to show that 15 weeks of Employment Insurance Sickness Benefits is not long enough for those going through cancer treatment. In 2009, CBCN conducted a survey of breast cancer survivors across 4 Network News Winter 2009-10
Canada on the Economic Impact of a Breast Cancer Diagnosis and Treatment on Labour Force Re-Entry as well as a general population survey to determine understanding of the issue. Survey results will be used to contribute to our knowledge of the current issues Canadian women are facing, will help us provide both national and provincial/territorial guidance on issues related to labour force reentry and will give us the information we need to work for change. The report will be published early in 2010. During 2009 we also began implementation of a project entitled Breast Cancer Survivor to Financial Survivor, which will result in a new resource to help breast cancer survivors cope with diminishing financial resources at a time of critical illness. This resource will include many alternative solutions to the financial difficulties breast cancer survivors encounter. It will be published in 2010. Breast Cancer Wait Times in Canada 2008 Report Card One of our most successful initiatives was the Breast Cancer Wait Times in Canada 2008 Report Card on the diagnosis and treatment of breast cancer in Canada. The Report Card provides an overview of wait times for diagnosis and treatment of breast cancer in Canada. It looks at guidelines, benchmarks and data provided by the provinces and territories as well as at factors affecting wait times, best practices and strengths, gaps in information and weaknesses in performance. The report also reviews drug approval timelines and access to affordable drugs, and suggests options for an action strategy on improving timely access to treatment. Key issues identified by the Report Card include: • There are no national benchmarks for wait times associated with surgery or chemotherapy • Only half of the jurisdictions reporting achieved or bettered the national benchmark of four weeks wait time for radiation therapy • Some jurisdictions have no wait time reporting systems with little or no data to share • The approval process for new treatments is lengthy, currently taking up to five years from the initial application by the manufacturer until listing on a provincial or territorial formulary • Canada lags behind other countries in the adoption of electronic health records, a technology which could expedite procedures The Report Card proposes a call to action for concerned organizations and individuals that includes: • Working with provincial and territorial jurisdictions to provide accessible and comparable information • Identifying and disseminating best practices • Supporting research and innovation to improve access and quality of care • Encouraging health care systems to listen to and learn from the experiences of breast cancer survivors The Wait Times Report Card is available at our office at 1-800-685-8820. Other CBCN Advocacy Work CBCN has been actively involved in many advocacy issues, including: • Support of screening mammography from age 40 in all jurisdictions in Canada • Support of Breast Self-Exam (BSE) as the best way for women to know their breasts • Strongly advocated for transparency, accountability and inclusion of breast cancer survivors in decision-making in response to the Cameron Report in Newfoundland and a similar situation in Quebec of systemic failure in breast cancer testing procedures • Acted to assure inclusion of trained breast cancer survivors on research panels • Asked questions and received responses from the five political parties during the last three federal election campaigns. Questions were about breast cancer wait times; national standards for the diagnostic testing of breast cancer, funding for breast cancer networks in Canada, Employment Insurance Sickness Benefits and others Our four main priority areas continue to be: • Young women living with breast cancer (watch for the next issue of Network News on the BR CA genes) • Rural, remote and Northern women living with breast cancer • Women living with metastatic breast cancer • Breast cancer as a financial issue • Advertise in Network News! For more information contact Jackie Manthorne at 1-800-685-8820 ext. 222 or e-mail jmanthorne@cbcn.ca. Network News Winter 2009-10 5
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