Last Updated: November 2024
Lymphoedema or chronic oedema is the accumulation of excessive amounts of protein-rich fluid resulting in swelling of one or more regions of the body. This is due to a mechanical failure of the lymphatic system and occurs when the demand for lymphatic drainage exceeds the capacity of the lymphatic circulation. The condition usually affects the limb(s) although it may also involve the trunk, breast, head and neck or genital areas1. Lymphoedema may produce significant physical and psychological morbidity. Increased limb size can interfere with mobility and affect body image.
There is a general lack of awareness of the term lymphoedema, and a need for greater awareness and access to treatment for lymphoedema exists. Lymphoedema prevalence in Australia is unknown. Data from the UK suggests that up to 1.33 people per 1000 of the population may be affected by chronic oedema3. This suggests it may affect over 33 000 individuals in Australia (Australia’s current population estimated to be 24,577,1994. Lymphoedema is often associated with the removal of lymph nodes related to cancer. The best practice management for lymphoedema has a holistic, multidisciplinary approach that includes: exercise/movement, swelling reduction and maintenance, skin care, pain and psychosocial management.
The Australasian Lymphology Association is responsible for registering professional lymphoedema therapists to perform these treatments.
Physiotherapist Moira Mannion is a qualified lymphoedema therapist who can perform manual lymphatic drainage. She was alarmed at the high number of public sector healthcare professionals attending a course on lymphoedema who were self funding their attendance. She said “it demonstrates the high need for hospitals to train their staff to in this treatment due to the increasing number of patients who require it. The treatment is very expensive to access privately for most people.”
As a physiotherapist, Moira undertook a lymphoedema massage course which enables her to do specific lymphoedema massage, which works by moving fluid away from the swollen area towards functioning lymph nodes, so allowing the body to drain this excess fluid away.
However treatment and management may take a lot of time and commitment on the patient’s behalf. The massage must be done almost every day for about half an hour as part of their daily routine, by either themselves or another. It doesn’t cure the illness but it helps them to manage it and prevent the swelling from worsening. This offers a practical way of managing the condition on a daily basis.
Once it is at a manageable level, patients can then get special garments made similar to that of burns victims, made from elasticated thick fabric measured to fit their limb which they wear every day to help keep the inflammation down. These are available from companies such as JOBST and others.
Information about state-based funding for compression garment schemes can be found here
Other funding and rebate options including NDIS funding has been detailed below:
- Individuals are able to access 5 Medicare rebateable physiotherapy or occupational therapy appointments under the Chronic Disease Management Plan (completed by their General Practitioner), and private health extras cover will provide reimbursement on appointments and garments depending on individual health funds.
- Due to the definition of “disability” according to the NDIS, the interaction of lymphoedema as an aspect of the disability will be assessed on a case by case basis. Experience of the NDIS roll out in the ACT has seen some individuals have lymphoedema garments included as part of their plan, if their swelling was identified as meeting the aforementioned requirements. Others have utilised “physiotherapy or therapy” as part of their plan to seek lymphoedema therapy.
- To meet the NDIS disability rules individuals need to have an impairment or condition that is considered permanent (lifelong) and that stops them from doing everyday things by themselves. Individual disabilities are not identified, rather the impact the disability has on the individual’s capacity to function within their daily roles and the broader community. An initial plan will be developed which identifies the reasonable and necessary supports required to meet an individual’s immediate needs. For a support to be funded it needs to be linked to an outcome identified in the individual’s plan and it also must:
- Be associated with day-to-day living and activities that increase social or economic participation
- Be a resource or piece of equipment, such as wheelchair, assistive technology or home and car modifications, to help live an ordinary life
- Any lymphoedema or chronic oedema requests as part of an individual’s plan must therefore meet the above requirements. Individuals will need to state how their lymphoedema impacts on their daily functioning.
For more information, the Australasian Lymphology Association is the peak professional organisation promoting best practice in lymphoedema management, including research and education in Australasia:
Useful information regarding the NDIS can be found below:
References
2. Lymphoedema Framework. Best practice for the management of lymphoedema. International Consensus. London: MEP Ltd (2006)
3. Moffat C, Franks P, Doherty D, Williams A, Badger C, Jeffs E, et al.; Lymphoedema: an underestimated health problem. Q J Med. 96 (2003) 731-8.
4. Australian Bureau of Statistics – Population Clock – viewed 4 July 2017:
Many thanks to the ALA for allowing us to share their fact sheet here.
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