Posted on March 04 2022
Our Inspirational Women - Monique Bareham SA State Recipient Local Hero 2022
Lymphoedema is a hard sell. It has a tricky name which many find difficult to pronounce, it has two spellings and is often mistaken for a type of cancer. Furthermore, lymphoedema and its impacts on the individual are often misunderstood by GP’s and cancer specialists commonly under recognise it as a side effect of cancer treatments. Finally, Medicare does not recognise lymphoedema resulting in incidence rates not being recorded. As you can imagine, this combination of factors makes advocating for lymphoedema problematic and sadly, many living with it are not well enough to take on the challenge. Fortunately, I find that I am generally well enough to continue advocating and while I can I feel I should.
Before receiving this award, I was already planning my next advocacy steps following the launch of the South Australian Lymphoedema Compression Garment Subsidy Scheme (CGSS) in 2021. The scheme provides vital compression garments for lymphoedema sufferers at no cost and is truly life changing for those able to access it, myself included. However, 18 months after the launch I was concerned that the majority of the estimated 2300 lymphoedema sufferers in SA were yet to access theirs. I felt that those most severely affected and most in need of compression garments were still missing out.
This is because, despite the sustained efforts of many SA Health ‘Lymphy Legends’, no ‘Clinical Model of Care’ for lymphoedema exists. Until that is rectified, state-wide coordinated lymphoedema services cannot be established and many struggling with lymphoedema would continue to fall through the gaps. These issues do not stop at the South Australian border either. It was just as I was contemplating all of this when quite unexpectedly, I was awarded South Australia’s 2022 Local Hero.
So, what does receiving this award mean to me? Quite simply, this unique platform enables me to affect real and meaningful change for the estimated 34,562 Australian’s living with lymphoedema nationwide. I can now begin to address the overarching systemic issues that I know exist and prevent those with lymphoedema from accessing the care they deserve. For example, the lack of a Medicare Item Number for lymphoedema. Until Medicare recognises lymphoedema and incidence rates are recorded, health planners cannot set appropriate funding for the establishment and implementation of the services our community need. Addressing this problem would have multiple positive flow on effects to each state and territory.
The public exposure is invaluable too! Already it has saved me time and energy when making initial contact with stakeholders. Now I am spared the inevitable ‘Lympha What?’ question and can make the most of limited meeting times by moving quickly on to my key messages. Raising awareness about lymphoedema gives hope to so many across the nation as well which spurs me on. I have received messages from many who are thrilled to hear the word ‘lymphoedema’ being spoken on national TV!
Thank you for this honour and for this incredible opportunity, I fully intend to make the most of it.