Lymphoedema is a health issue which most government health funds and some private health funds think does not exist! In connecting with others I hear how people cannot afford the treatment they need because there are no government rebates. In Australia we have Medicare and I am trying to rack my brains as to whether I have had any money from them for the treatment of my Lymphoedema. No i am fairly certain I have not, even though it is a health issue that requires constant care. I am very fortunate in that I have always had private health cover, as without this I would be in a very different place. It makes me angry that because of my private health fund I am able to obtain help that others are not. I believe through medicare you can access some physiotherapy treatments, however when I tried to access these In the public hospital system I was told there were huge waiting lists and could not even make an appointment. When I was first diagnosed I was given no referral for treatment or even told where or what I should do, I was just told to get a compression garment! A diagnosis of Lymphoedema is a sentence for life, physical, mental and financial.
The cost of compression garments per year can be huge, especially if custom-made. My first garments cost me $400 a set, you need two sets at a time and last about 6 months. I can now use off the shelf compression stockings but these still cost $100 a pair. Complex Bandaging, Manual Lymph Drainage, Laser and other treatments are all expensive and for some the cost of travel to that treatment is added on top, due to the lack of availability.
Prior to my surgery the Doctor has requested an MRI of both legs. It is now less than two weeks to go and for the last month I have been trying to book this. I have continuously been told that there is a “protocol” issue and that they will call me back to make an appointment when this is resolved. Yesterday I called yet again as the days are dwindling. This time I was told I needed to call a lady who runs the Lymphoedema Clinic, I called but no reply. I then sent an email to my surgeon to let him know the problem. The reply came straight back and the issue was cost, due to there being NO Medicare rebate at all for MRIs done due to Lymphoedema. Once again Lymphoedema is an invisible health issue and at $500 a leg this is ridiculous. The clinic is trying to negotiate with the hospital for a lesser charge as it is a “research activity”, hopefully someone will sort themselves out today!!
Before I post this blog I should add that MARCH IS LYMPHOEDEMA AWARENESS MONTH
Love to hear your comments and for you to share with others so that Lymphoedema can gain a voice.