Legitimacy of Self-Help and Survivors' Experiences

One of the greatest obstacles in the path of breast cancer support is the lack of referrals from doctors to support programs within the community. Most doctors do not affirm the importance or role of self-help groups. Some women report being actively dissuaded from going to support groups ("My doctor said I didn't need a support group because it was only a lumpectomy".) In other cases, doctors simply do not have time to provide the information and do not see it as part of their responsibilities.

Under the current health care system, women are being diagnosed and rapidly referred to hospitals in larger urban centres for treatment. Women are released very shortly after surgery. Once back in their homes and communities, women often find they are left on their own to cope in whatever way possible with all their emotional trauma. At the same time they face an array of practical problems related to remaining functional in their families and work .

A woman's stay in the hospital is short, thus making the window of opportunity for support groups and community organizations to get in touch with her, very limited. While in some places support groups report that they are able to contact women being diagnosed with breast cancer, others calculate they are "missing up to 80-90% of women."

Current medical procedures lead women undergoing diagnosis, surgery and treatment to feel a sense of isolation and vulnerability. It is left to the individual woman to access information and support. Women typically recall feeling "like I was the only one...." "I had nobody to listen to me....." Some women with breast cancer have spent years looking for a support group which meets their needs. Where referrals do occur, it is often because a sympathetic health care professional in a key position has made it a priority. This is not usually part of their regular job description.

At the same time, breast cancer support groups feel enormous frustration at not being able to access the names of women who have breast cancer. One volunteer spoke despairingly: "How can we provide better support when we don't know who has breast cancer or where they live?"

Across the Atlantic Region, one consistent life raft in this sea of fear and uncertainty for women facing breast cancer is the Reach to Recovery and CanSurmount programs sponsored by the Canadian Cancer Society. These one-on-one support initiatives are extremely valuable. However, everyone, including the CCS, agrees these are too limited given the current needs.

Consistently informing women about the community supports available to them will require a fundamental shift in thinking on the part of the medical establishment: doctors, hospital administrators, medical faculties, nurses and other health professionals. Many of these health care providers are front line workers in terms of meeting with women who have breast cancer. They have tremendous potential to legitimize self-help and support groups and programs.

Survivors of breast cancer at this time are playing a prophetic, although often undervalued, role in identifying the priorities for women with breast cancer. While they often feel marginalized and as though their views are dismissed in some of the medical boards and panels in which they participate, their message is clear and increasingly being legitimized. That message is: "We need to take the focus off the medical model and look at the bigger picture to see what is causing breast cancer. We need to treat and support women in a holistic way." "Give a woman a say in what's done to her, a sense of well-being, and she will take care of herself better -- and her family".

Many community groups are already playing a valuable role in self-help and support. Their role within the continuum of necessary supports should be affirmed more strongly in policy and funding terms. Government departments and agencies can help legitimize self-help and emotional support by informing the public about the benefit and value of emotional support. They can also influence the medical community's recognition of the contribution emotional support provides throughout the health care continuum.

Suggestions:

• Encourage community and grass roots participation in cancer committees and breast cancer structures.

• Legitimize the voice of survivors. Need to have more involvement of survivors at various levels and also legitimize the role of those already providing information and support to women with breast cancer.

• "We need a Breast Cancer Ombudswoman to speak for us, to advocate for us".

• Create provincial registries of breast cancer survivors to identify who requires support. This information should be accessible to support groups as well as health providers and administrators.

  "Sensitize and Educate Doctors":
  

• Approach medical schools to have them develop curriculum to encourage an open attitude on the part of doctors which affirms the use of self-help and support groups.

• Doctors need greater knowledge and sensitivity regarding the psycho-social aspects of breast cancer, as well as better communication skills.

• Doctors should be provided with training in gender sensitivity, as part of the psycho-social aspects.

  "Make Hospitals Aware of Emotional Needs":
  

• Hospitals should be made aware of women's needs for emotional support and actively help to address these.

• Hospitals should be active partners in coordinating efforts between women's breast cancer treatment and their accessing of longer-term supports. A first step would be getting hospitals to make arrangements with the CCS and other groups to identify who has breast cancer.

  "At the Government Level"
  

• Health Canada should help legitimize self-help and emotional support through national media campaigns similar to ones on youth smoking and breast feeding.

• Health Canada should help influence the medical community's recognition of the contribution emotional support provides by exerting pressure on it to make referrals to existing programs and services.

Next: Empowering the Community