Legislative Council Fifty-Fourth Parliament, First Session (54-1) 54 1 Parliament of South Australia Legislative Council published Motions Motions Lymphoedema Services Lymphoedema Services The Hon. C. BONAROS Legislative Council The Hon. C. BONAROS (17:09): I move: That this council— 1.	Acknowledges that this year's state budget failed to make provision for a garment subsidy scheme and dedicated treatment services for lymphoedema sufferers within SA Health; 2.	Notes that South Australia continues to be the only jurisdiction without a garment subsidy scheme; 3.	Recognises that lymphoedema sufferers in South Australia are disadvantaged compared with sufferers in other jurisdictions; and 4.	Calls on the state government to implement a garment subsidy scheme and provide dedicated treatment services for all lymphoedema sufferers as a matter of urgency. I once again speak on issues surrounding lymphoedema sufferers in South Australia, specifically the lack of a garment subsidy scheme and the lack of dedicated treatment services within SA Health. It is the fourth time that I have spoken about these issues in this place. Can I assure members that I will continue to speak on these issues and advocate on behalf of lymphoedema sufferers until the changes they are seeking become a reality. Regrettably, as I have stated, this year's state budget failed to make any provisions for a garment subsidy scheme and/or dedicated treatment services for lymphoedema sufferers. There is absolutely nothing in the budget for lymphoedema sufferers. They remain disadvantaged when compared with sufferers in other jurisdiction. The fact that South Australia remains the only, and indeed the last, jurisdiction in Australia that has neither a garment subsidy scheme nor dedicated support services for sufferers is completely and utterly intolerable. It is a travesty that the Labor opposition did nothing about this while they were in government for 16 years. The failure to make provision for a garment subsidy scheme and dedicated treatment services in the budget comes despite a business case that was made and completed on the issue, and, as I understand, despite the lobbying of many of the government's own backbench. There was widespread support for a garment subsidy scheme and better services, and a personal plea to the health minister from the President and Vice-President of the Lymphoedema Support Group of South Australia (LSGSA), Monique Bareham and Alison Neilson, at the round table I convened on 10 May, which the minister kindly attended and alluded to earlier today in response to a question asked in this place. During my speech on the Appropriation Bill, I detailed at length the stories of Monique, President of the LSGSA, and Lachlan. Today, I am going to continue with the story of Alison Neilson, Vice-President of the LSGSA. It is hoped that by making these stories public and personalising the plight of sufferers, the Marshall Liberal government will be moved to act. Here is part of Alison's story: At thirty-six years of age I was diagnosed with an aggressive form of breast cancer. I was living on the Mornington Peninsula in Victoria, married with stepsons, working as an osteopath and running my own private practice. My breast cancer treatment required two surgeries, four cycles of chemotherapy, six weeks of radiotherapy as well as three weekly injections for a year. Breast cancer changed my life, I had to close my business and ended up working from home to manage my treatment related fatigue, with greatly reduced work capacity. After two years my left arm began to swell and feel heavier and with the help of my breast care nurse and general practitioner…I was referred to a trained lymphoedema therapist and diagnosed with lymphoedema. Due to my own clinical role I was aware of the early signs of lymphoedema and was looking out for it as it had the potential to end my career. My lymphoedema therapist advised I limit the number of patients I treated each week to avoid worsening my lymphoedema symptoms. My therapist measured, organised and fitted my compression garments and organised several manual lymphatic drainage treatments. My lymphoedema therapist also let me know that I could claim a rebate for my compression sleeves through Medicare. This was important as my work capacity and income were at least 50% less than prior to breast cancer treatment. At this time my marriage also ended and I chose to return to South Australia to be closer to my family and reduce living costs. Returning to South Australia was helpful in terms of increased family support (both emotional and financial). I devoted my time and energy into re-establishing myself professionally. It took a while for me to find another lymphoedema therapist and I needed more intensive therapy to get back under control. I soon realised there were quite a few differences between the two states with regard to lymphoedema services and that is why I initially contacted the Lymphoedema Support Group of SA (LSGSA). My general practitioner in Victoria was aware of lymphoedema. In South Australia, many GPs are not educated about lymphoedema and do not know where to send lymphoedema patients as there are no established referral pathways. I work as an osteopath in two locations, in Norwood and in medical rooms in Ardrossan, a town on the Yorke Peninsula. At Ardrossan, the practice GPs will send lymphoedema patients to me, as they know I can explain some aspects of lymphoedema self-management and give patients the details of the private lymphoedema services in Adelaide. As lymphoedema does not have an item number (a Federal issue), it is also difficult to obtain accurate estimates of the number of South Australians with lymphoedema, making it a hidden problem. Because I live in South Australia, I cannot access a Medicare rebate for my compression sleeves. My private health cover does not cover the cost either. My health fund only rebates $150 annually for massage therapy for my lymphoedema massage, it is gone in two visits. I have lymphoedema treatments once or twice each month, and I book two to three months in advance to ensure I can receive treatments when I need them. As it is warmer and more humid in South Australia in summer, my lymphoedema symptoms are worse, and that means I need more frequent treatment. In Victoria I received information about the lifelong risk of developing lymphoedema from my breast cancer treatment of having lymph nodes surgically removed and radiotherapy. In South Australia, the LSGSA hears from many consumers who are unaware of the lifelong increased risk of developing lymphoedema after breast cancer treatment. Alison's story encapsulates the disadvantage South Australian sufferers are faced with in this state when compared with other states and territories because of the lack of a dedicated treatment service and the lack of a garment subsidy scheme in a very real, heart-rending and personal way. Alison detailed her poignant story directly to minister Wade at the round table and finished off with the following words: Minister Wade our lymphoedema community has been doing it tough for long enough. It is time that South Australia has lymphoedema referral pathways to let lymphoedema patients know that they matter and to minimise their pain and suffering. I could not agree more with Alison's words. The South Australian lymphoedema community has done it tough for way too long, and it must change. The Australasian Lymphology Association position statement on monitoring for the early detention of breast cancer related lymphoedema recommends three main points: persons undergoing breast cancer treatment should be made aware of the risks of lymphoedema, given risk-reduction information and local lymphoedema service information; pre-treatment measurements should occur on both arms and be repeated at three to six monthly intervals for the first two years of post treatment; examination of the limbs and lymphoedema symptoms should be addressed at each review. We have a responsibility to educate our GPs on the signs of lymphoedema so that they can better inform patients in their care. In their position statement on the use of compression garments in the management of lymphoedema, the ALA recommends: compression garments are an essential treatment modality for the management of lymphoedema; six-monthly replacement of garments to maintain adequate compression; therapists who are prescribing compression garments for lymphoedema management should have an appropriate level of training. The current situation really make South Australian lymphoedema sufferers second-class citizens and disadvantaged because they chose to live in SA. I have written to both minister Wade and the federal Minister for Health, Greg Hunt, about these issues and I am awaiting replies from both. It angers me that South Australia continues to be the only jurisdiction in Australia without a dedicated garment subsidy scheme. It is completely unacceptable that lymphoedema sufferers in this state are discriminated against and disadvantaged merely because of the state in which they live. As a result of the lack of available support in South Australia, many of these sufferers cannot afford the necessary treatment to relieve their symptoms. I know from speaking to many of the sufferers that, rather than replace their garments on a six-monthly (or even less) cycle as is recommended, they go above and beyond in trying to extend the life of these garments, simply by virtue of the fact that they cannot afford to replace them. While I note that prior to the federal election the Coalition government announced $10 million in funding over the next five years to provide a national compression garment scheme for lymphoedema, as alluded to by the minister today, it appears to only offer assistance to those suffering lymphoedema after breast cancer. We in SA-Best certainly welcome the announcement. However, the absence of any details surrounding the funding is extremely frustrating, not only for us but of course, more importantly, for those people who are impacted by this condition. While approximately 20 per cent of breast cancer sufferers will develop lymphoedema as a result of removed or damaged lymph nodes, the condition also affects men after treatments for conditions including cancer. Head and neck surgeries and other tissue damage can also trigger lymphoedema. The Australasian Lymphology Association estimates that one in every 6,000 people is living with primary lymphoedema as a result of a congenital condition. However, the $10 million of federal funding that was announced appears, again, to only assist breast cancer survivors who later develop lymphoedema. Lymphoedema sufferers in our state deserve a better quality of life and better support, the same as sufferers in other states. I note, again in reference to the minister's answers to questions on this issue today, the establishment of an advisory group, which I understand he said will commence next week. With respect, I do not accept the parameters of the commonwealth funding commitments referred to, because as we know only too well the commonwealth has made it clear that that funding is in relation to breast cancer sufferers and, as I have already highlighted, this goes way beyond the scope of just those who have had or are going through breast cancer. I also do not accept the state government passing the buck onto the feds on this issue when every other Australian jurisdiction has managed to fund a scheme. I say to the minister that he needs to find a way to do the same. Once again, I am calling on the Marshall government to implement a garment subsidy scheme, and to do so swiftly to benefit all South Australians living with lymphoedema, and to provide dedicated services as a matter of urgency. Debate adjourned on motion of Hon T.J. Stephens.