Other Support Group Activities and Advocacy
The Lymphoma Support Group of Ottawa (LSGO) seeks to work closely with hematologists
and other health care professionals involved in treating lymphomas in the Ottawa
region. These professionals are invited to speak to the group to provide
information on disease mechanisms, current treatment options, research findings
and directions, management of the disease and treatment of side-effects.
The LSGO seeks to advocate for lymphoma patients by providing health care
professionals with insights into the shared experiences of LSGO participants,
highlighting issues or concerns arising within support group discussions. The
group also lobbies more widely to improve the delivery of care and access to
services for all lymphoma patients, both through The Ottawa Hospital (TOH) and
the Champlain Regional Cancer Program (CRCP).
In 2007 LSGO prepared a response to a CRCP briefing note on psychosocial oncology
services and is participating in on-going discussions. In 2005-06, some LSGO
members were involved in the pesticide ban debate in Ottawa,
as there is strong evidence that pesticides are a risk factor in developing
Recent results of this LSGO advocacy work include:
- TOH has established of a Psychosocial Oncology program which will have 7 FTE
staff. All lymphoma patients will have access to this program, regardless of at
which location they see their hematologist.
- The BMT team opened a new Medical Daycare Unit on the 5th floor of the
General campus in early September 2008. Some lymphoma patients have been
receiving their treatment there. Five Clinical Nurse Experts (CNE)
have been appointed to work more closely with patients and doctors.
- A BMT Patient Advisory Committee has been established to bring together doctors,
staff and patients for discussions several times a year. If you have issues or
suggestions you would like addressed in this forum, please contact the LSGO
The group puts together information packages, which are available
for all participants; however, they are targeted particularly
for newly diagnosed patients and their families.
In addition, various LSGO members, including caregivers,
have been sharing their stories to promote awareness and understanding of living with
lymphoma. Several of these stories have been published in "Challenge: Life with Cancer"
produced by the Ottawa Regional Cancer Foundation and available at the patient libraries
at the General and Civic campuses of TOH. A special issue was devoted to lymphoma in
Fall/Winter 2006, "Spotlight on lymphoma: Moving forward after treatment."