Legislative Council: Wednesday, March 20, 2019

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International Lymphoedema Awareness Month

The Hon. C. BONAROS (15:43): I rise today to speak in strong support of International Lymphoedema Awareness Month. I would like to start by acknowledging Alison Neilson, Vice-President of the Lymphoedema Support Group of SA, who I hope will be here soon, and the advocacy of Monique Bareham, President of the LSGSA who could not be here today.

Lymphoedema is a chronic condition that causes painful swelling, often in the limbs, which is estimated to affect over 2,300 people in South Australia—but that is only an educated guess based on UK statistics because in Australia there is no Medicare item number for lymphoedema therapy, rendering the condition statistically invisible. About 20 per cent of breast cancer sufferers will develop lymphoedema but the condition also affects men after treatment for conditions including cancer. Head and neck surgeries and other tissue damage can also trigger lymphoedema. When not well managed, increased swelling often results which can lead to skin deterioration, disfigurement, mobility difficulties and psychological problems, making it harder for the sufferer to maintain employment.

For reasons unknown, South Australia does not provide dedicated lymphoedema services. Further, South Australia is the only state in Australia that does not provide a compression garment scheme or compression government subsidy for eligible lymphoedema sufferers to help control swelling. It is completely and utterly unacceptable that lymphoedema sufferers in this state are discriminated against purely because of the state that they choose to live in. As a result of the lack of available support in South Australia, many lymphoedema sufferers cannot afford the necessary treatment to relieve their symptoms.

Individual measured and fitted compression garments are a necessary requirement in the management of lymphoedema to keep swelling under control and may need to be worn up to 24 hours a day. The necessary compression garments are very expensive and need to be replaced every six months, on average, to maintain their effectiveness. In correspondence last year, health minister, Stephen Wade, wrote and I quote:

SA Health hospitals provide a variety of high-quality services and treatment plans for patients who experience lymphoedema for both cancer and non-cancer related conditions. Nonetheless, the Marshall Government is mindful of the health need for a compression garment subsidy scheme and is developing a business case and looking for funding solutions.

I am advised by the LSGSA that the reality tells a very different story indeed. The LSGSA has made inquiries to SA Health requesting detailed information as to the range of 'high-quality services' referred to by the minister. In particular, it would like to know where the referral pathways to the services are so that it can direct its members to them. However, its efforts have been fruitless and it is yet to receive a formal response.

There is the Lymphoedema Clinical Research Unit located at the Flinders Medical Centre. However, the SA Health website is at pains to point out that treatment services are not currently provided within the clinic; it only runs a range of clinical trials from time to time and instead refers sufferers to private doctors. Sufferers are forced to seek treatment with specialist private practitioners at significant personal cost. Dedicated public lymphoedema therapists can diagnose and treat early lymphoedema so that symptoms do not worsen and cellulitis is less likely to occur.

Lymphoedema is incurable but the earlier it is detected and treated by a qualified therapist, the less likely it is that symptoms will worsen. In combination, dedicated public lymphoedema services and subsidies for compression garments would assist greatly in keeping lymphoedema sufferers out of our already stretched public hospital system, not to mention provide lymphoedema sufferers in our state with a better quality of life—the same as sufferers in other states, who are better supported than they are here.

Minister Wade has said the Marshall government is developing a business case for a compression garment subsidy scheme—that correspondence was some six months ago. I echo the appeals by the Lymphoedema Support Group of South Australia, supported by the Lymphoedema Action Alliance, for therapy funding and a compression garment subsidy scheme in South Australia; again, the only jurisdiction that does not have such a scheme in place. I call on the Marshall government to implement those measures as a matter of absolute urgency.