The Lymphoedema Action Alliance is working to reduce the unnecessary suffering of people who have lymphoedema, by ensuring timely access to affordable lymphoedema services and compression garments, regardless of where people live, their financial status and their health situation.
What is lymphoedema?
Lymphoedema is the term given to swelling resulting from malfunction of the lymphatic system. It can affect people of all ages, whether it is as a result of underdeveloped lymphatics, or due to damage to the lymph system from cancer treatment.
Lymphoedema is a chronic and progressive condition that afflicts an estimated 300,000 people in Australia, affecting their quality of life, health, work and relationships, especially when not appropriately treated.
Areas of Action
These actions were developed following surveys of people with lymphoedema, as well as health practitioners.
Equitable access to quality lymphoedema services in NSW
All people at risk of, or living with, lymphoedema should receive appropriate physical and psychological care within the public health system. Service information should be easily accessible.
Equitable and sustainable access to affordable lymphoedema garments nationally
All people with lymphoedema should have access to affordable compression garments long term in order to manage their lymphoedema.
What is the problem?
Lymphoedema suffers from lack of funding, and awareness within medical professions and the wider community. The condition is not well diagnosed, and many patients, especially those with non-cancer related lymphoedema, struggle to access services and treatment.
Access to treatment and compression garments is particularly problematic for people who cannot afford to pay privately. In addition there is a gap in service provision between patients living in metropolitan areas, and those in rural and regional areas.
How we started?
Following the publication of Lymphoedema Stories - The Untold Truth in 2013, produced by a collaboration between the Lymphoedema Support Group of NSW, the Northern Suburbs Cancer Action Network and Cancer Council NSW, a forum of invited organisations was held on the 30th October, 2013. At this meeting, specific lymphoedema issues were selected using consumer and practitioner surveys.
As a result, the Lymphoedema Action Alliance was established, with a memorandum of understanding, and two working groups. These working groups are made up of representatives from the member organisations, and are further developing the Areas of Action.
The Alliance is open to new member organisations. Please contact us to find out more.