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Legislative Council - Fifty-Fifth Parliament, First Session (55-1)
2023-03-22 Daily Xml
Contents
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Motions

Lymphoedema

Adjourned debate on motion of Hon. R.B. Martin:

That this council—

1. Recognises that 6 March 2023 is World Lymphoedema Day;

2. Notes that the message of World Lymphoedema Day 2023 is 'Lymphoedema: what we want you to know';

3. Acknowledges that lymphoedema is a chronic condition, which can often go undiagnosed and untreated; and

4. Expresses its support for people living with lymphoedema and the many organisations working to ensure that people with lymphoedema get the information, treatment and support they need to live well.

(Continued from 8 March 2023.)

The Hon. J.M.A. LENSINK (16:50): I rise to place some remarks on the record in support of this particular motion and thank the honourable member for bringing this matter to the parliament's attention. World Lymphoedema Day was 6 March and the month of March is used to raise awareness of this chronic condition of lymphoedema and to support those people who are living with lymphoedema.

Lymphoedema is a condition in which part of the lymphatic drainage system fails to work effectively. It can affect anyone at any age. While there are treatments to manage the condition, there is no effective cure. People can be at risk of developing lymphoedema not just through their lymphatic system but through a failure of some of the venous system as well. Sometimes this will occur through faulty valves, cancer treatment, lymph nodes having been removed through surgery or treated with radiotherapy, lymph node damage through trauma, or poorly developed lymphatic vessels at or before birth.

With early diagnosis, assessment, intervention and treatment, this condition can be more easily managed and the quality of life improved. Lymphoedema is best treated through a holistic and multidisciplinary approach administered by qualified lymphoedema therapists, including physiotherapists. Treatment usually consists of education, skincare, exercise, manual lymphatic drainage and compression therapy, including garments and bandages.

South Australia is fortunate to have some of Australia's leading experts in lymphoedema practising from the Lymphoedema Clinical Research Unit and the lymphoedema clinic at the Flinders Medical Centre. There are current clinical trials being undertaken at the Lymphoedema Clinical Research Unit, including the efficacy of machine-delivered massage and a possible medication to help control lymphoedema.

It was my great honour in a former life to have been a physiotherapist at the Repat who indeed practised assisting and supporting people with lymphoedema. In that, I was trained by the late John Casley-Smith and his wife, Judith. It was very much at the learning stage at that stage for a lot of people who worked in the lymphoedema space. We certainly learnt a lot about massage, the use of bandages and compression garments. There was a range of people who needed assistance, particularly breast cancer survivors and someone who had had a mastectomy, and people who had become immobile and therefore their venous system was not returning blood and the like from their lower limbs.

It was very much a lot of trial and error at that stage, but I note that in 1991 the Lymphoedema Support Group of South Australia was formed through the work of Dr John and Judith Casley-Smith. The Marshall Liberal government and the former Minister for Health and Wellbeing, the Hon. Stephen Wade, were certainly very active in supporting people with lymphoedema, and I note that there were members of this parliament who were very active, including our colleague the Hon. Connie Bonaros.

In 2020, there was a consumer voice in the Wellbeing SA Compression Garment Subsidy Scheme Advisory Group, which was tasked to assist the working party to develop and introduce a compression garment subsidy scheme to South Australia for the first time. That was launched by the former minister, the Hon. Stephen Wade, in July of that year, and in October of that year a lymphoedema clinic was opened at Flinders Medical Centre.

In 2021, there was a survivorship conference poster 'Minding the Gap' a consumer-led program, and Ms Monique Bareham, who was the former Lymphoedema Association president, was awarded the 2022 South Australian Local Hero Australian of the Year Award, nominated by the Lymphoedema Association committee. Her work in that space continues; she is very active and has gone on to receive further awards for her very important work in that space, and we commend her for it. With those remarks, I indicate support for the motion.

The Hon. C. BONAROS (16:55): I rise to speak on behalf of SA-Best in support of the Hon. Reggie Martin's motion in recognising the importance of promoting awareness of lymphoedema, and in so doing and at the outset I take the opportunity to acknowledge the incredible advocacy and huge body of work of Monique Bareham and also Alison Neilson, who at the time were the president and vice-president of what was then the lymphoma support group of SA, now Lymphoedema Association SA. They did an extraordinary job raising the profile of lymphoedema and finally achieving the garment subsidy scheme in SA and securing the resourcing and government support the Hon. Michelle Lensink has just highlighted, and I will speak to that in a moment.

I am very humbled to have worked with both Monique and Alison on this most important health issue, and I thank both women and their colleagues for all they have done and continue to do. I also take the opportunity to sincerely congratulate Monique on being named the 2022 Local Hero at last year's SA Australian of the Year Awards for her tireless, courageous and inspiring work in lobbying to successfully have that compression garment subsidy scheme for lymphoedema sufferers in South Australia, finally.

Monique's work was extraordinary: she received a cancer diagnosis. Like many people who go through cancer treatment, she was left with lymphoedema, and we know it is a debilitating, incurable condition caused by damage to the lymphatic system, but it is one that does have treatment options available and that is what she, Alison and others fought so hard for. In so doing, Monique soon realised that we were the only jurisdiction that did not have the compression garment subsidy program, so it meant that people with lymphoedema were going without those necessary medical items.

Monique won that award off the back of the work she did in joining the lymphoedema support group, now Lymphoedema Association SA, taking on the role of president and, after years and years of advocacy in this place and elsewhere, gathering people's life experiences and advocating on their behalf, we saw the subsidy scheme implemented in 2020, and I will get to that in a moment.

It was truly quite remarkable what she and Alison were able to do. Not only did they provide sufferers a much-needed financial benefit to a practical but expensive treatment option for an incurable but treatable condition but also, and perhaps just as critically, raising awareness of the existence of lymphoedema and the hidden effects for those suffering in silence.

We know that lymphoedema is a debilitating, long-term condition that causes swelling in the body's tissues as a result of the lymphatic system's inability to remove those excess fluids, which leads to that swelling. We know that, according to the Lymphoedema Association of Australia, around one in every 6,000 births will develop primary lymphoedema, with secondary causes of lymphoedema mostly found in cancer survivors and trauma injuries, which can require very invasive surgeries and treatments, such as radiotherapy.

Unfortunately, it can be difficult to diagnose, due to the symptoms being similar to other conditions, and in secondary lymphoedema cases, of course, it can be several years after cancer treatment or therapy that those symptoms arise. It is for this reason that raising awareness of lymphoedema is critical to ensuring continued developments in treatment options and early intervention information.

As we have alluded to, and as my colleague opposite has alluded to, the issue surrounding lymphoedema and the lack of that dedicated treatment service and information for sufferers are issues that many of us have worked on in this place. I acknowledge also not only the work of the former health minister, who I will get to shortly, but indeed the work of the Hon. Dennis Hood as well, who has long advocated for this issue in this place over many years.

The long and short of it is that lymphoedema sufferers in our state deserve a better quality of life and better, more well-informed supports and support services. I think I have stood up in here about five or six times now and spoken in support of the representations made to us by Monique and Alison and others involved with the Lymphoedema Association, and those representations were successful, I am pleased, in lobbying the then Marshall Liberal government into introducing the compression garment subsidy scheme.

In 2019, I recall standing up in this place and asking the then health minister if he would agree to a round table with Monique and Alison. I remain grateful to our former health minister, not just for agreeing to attend that round table but also for genuinely and truly listening to Monique and Alison and delivering on the commitments that he made to them at that round table in terms of delivering on that scheme. We got there in the end. We were the last jurisdiction to get there, and it is a crying shame that it took us that long, but it was certainly a step in the right direction.

I know Monique still watches this space closely to ensure that it is working equitably and that people who need access to that scheme are getting access to that scheme. There is always the concern that we might fall into the same trap as developments around lymphoedema treatments and services continue to advance, and I certainly hope I am wrong to this end. I think there is multipartisan appetite for the continued support in the advancement of lymphoedema supports and services, and all of us in this place have a role in ensuring sufferers are not disadvantaged in their ability to access affordable treatment services.

I am pleased to see the Lymphoedema Association SA is working with the national Lymphoedema Association Australia group in merging those associations in a joint effort to expand local and national representation with a unified voice in advocating for the lymphoedema community and ensuring consistency between jurisdictions in terms of the services and supports afforded to those people who need them.

I am encouraged to hear the Hon. Mr Martin taking a keen interest in the continued development and recognition of supports and treatments for lymphoedema sufferers through this motion, and I hope that this is an indication of this government's commitment to promoting best practices in lymphoedema treatment, expansion of clinical options, as well as supporting the Lymphoedema Association's goal of establishing better data collection frameworks to better understand its prevalence and support those who suffer from lymphoedema.

With those words, I congratulate and in particular commend again not only the mover of this motion and those people who have been involved in this advocacy in the past but, more importantly, Monique and Alison, who played such a key and critical and pivotal role in ensuring that we got that scheme off the ground.

The Hon. R.B. MARTIN (17:04): I will start by thanking the Hon. Ms Lensink and the Hon. Ms Bonaros for their contributions and their continued efforts to draw attention and awareness to lymphoedema. I want to again place on the record my thanks to Monique Bareham for giving me a lot more information about this condition and the need for more resourcing and support for its treatment and my thanks to the people involved in the lymphoedema clinic at Flinders Medical Centre for all the work that they do.

It is a condition which requires a lot more advocacy, and anyone suffering from lymphoedema should know that with Monique providing that amazing advocacy we would hope that there are some significant positive changes in the future. I commend the motion.

Motion carried.

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