Communicating about cancer with others

Clinical trials and research studies

Advocacy

Specific needs, specific groups

Complaints

Communicating about cancer with others

overcoming the stigma and silence around cancer

raising awareness about cancer

communicating with family, friends and colleagues

communicating with other survivors (for support, for advocacy)

Understanding and overcoming the stigma, silence and myths around cancer is a key objective of the LIVESTRONG Global Cancer Campaign. A brief report (20 pages) published in 2010 aims to: Share lessons learned, Share stories and give voice to cancer survivors who take our surveys and provide us with information about their experiences with cancer, and Disseminate evidence about the global burden of cancer by partnering with leaders in the field.
Cancer Stigma and Silence Around the World: A LIVESTRONG Report

Stigma & Silence (a short video)

Clinical Trials

Participation in clinical trials and research studies can be an important part of survivorship activities.

You may get access to new treatments, but be aware that in a clinical trial, these treatments are being tested to determine their effectiveness. You may receive the usual treatment which is being studied for comparison against the new treatment outcomes.

Interviews, focus groups and surveys are ways researchers learn from the experience of people affected by cancer. This information should be used to improve services and supports.

Advocacy (Advocacy)

'Raising your voice' by becoming a consumer representative or joining a cancer advocacy group is another way to use your experience of cancer to contribute to better treatment and care for others. Options for online feedback and discussion groups are available, as well as being a rep at a variety of meetings, activities and forums.

LIVESTRONG video: Take Action.

Tips for genuine Advocacy

Genuine consultation – develop and maintain partnerships

Build trust through demonstrated action

Be flexible, direct questioning may not ask the right question

Be prepared to listen long enough

Give feedback – this builds good will

Document, disseminate, utilise what you hear and learn

We need to walk the path together.  Build trust, show respect, take time to listen.

"Nothing About Us Without Us" Lyn Faulds Woods, Lynn's Bowel Cancer CampaignUK and European Cancer Patients Coalition

"With luck, you'll get through this? Take luck out of the equation! Ensure good systems of care so 'luck' isn't a key issue." Lyn Faulds Woods, Lynn's Bowel Cancer Campaign UK and European Cancer Patients Coalition

Specific needs, specific groups

Survivorship issues cut across the 'Special groups' eg Aboriginal, children, Adolescents, Young Adults, Culturally and Linguistically Diverse groups, Gay/Lesbian, and people living in rural or remote areas.

Advocates need to speak up on behalf of groups who are less able to speak up for themselves.

Complaints

Many people experience things during cancer treatment that should not have happened. They may not want to formally complain, but would like somewhere to report this, so the problem can be fixed and 'it doesn't happen to anyone else'. How to complain effectively?

Health and Community Services Complaints Commissioner The HCSCC helps people – service users, carers and service providers – resolve complaints about health and community services, when a direct approach to the service provider is either unreasonable, or has not succeeded.