Survivorship spotlight: accessing the NDIS for lymphoedema support

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When Eva, a breast cancer survivor, first spoke with her lymphoedema specialist about accessing the National Disability Insurance Scheme (NDIS) for support to manage her condition, she was told they had never seen it approved with lymphoedema as the primary disability.

Despite having the odds stacked against her, Eva had three things working in her favour: her talent for working with legislation, her incredible patience and persistence, and the knowledge that her disability and the impact on her daily function should be recognised. After her initial application in October 2021 was declined, Eva spent the next 15 months arguing her case. It was eventually approved without going to a tribunal hearing, and Eva’s plan started in March this year.

‘The thing with NDIS is that it’s not even NDIS that’s doing the fighting – they put it out to external lawyers,’ says Eva. ‘So you’re arguing against a qualified lawyer, and you’re someone with a disability. It’s a very uneven playing field.’

‘My strategy at the beginning was eventually it would get to tribunal, and the tribunal person would make a decision, and the decision would either be the NDIS or the hospital system would treat me. Either way, it didn’t really matter. I just needed to get to that end point, so that someone would accept I was their responsibility.’

Eva’s story

Eva was diagnosed with cancer in her breast and lymph nodes in 2016.

‘They ended up having to remove all of my lymph nodes under my arm, including the ones under my pectoral muscle, which are higher level lymph nodes than they would normally remove,’ Eva explains.

‘[My arm] was swollen up before the surgery, and after the surgery it was still swollen up. With lymphoedema, everything is called post-surgical swelling, until it’s not post-surgical swelling anymore.’

Despite several specialist interventions to manage the condition, Eva’s lymphoedema persisted. Some, like compression bandaging, resulted in significant discomfort. Massage, compression garments, exercise and skincare were her only options, and while they helped her to manage her condition, her specialists advised that this was a chronic condition which would require ongoing management.

Since her cancer treatment, Eva has been unable to carry out everyday tasks – like making a cup of tea – without expensive custom compression garments. Even though she works as much as she can manage, the garments are costly. She has also cared for her two teenage sons on her own since her husband lost his battle with lymphoma in 2015: the year before her own cancer was diagnosed.

‘I drop things a lot,’ explains Eva. ‘I get very fatigued. I trip over. I need to get the kids to help me with a lot of things. I have difficulty with cleaning. Anything that needs fine motor skills, multitasking or is heavy, like saucepans or laundry. I really have to concentrate to make that arm move, and when I get worn out in a day from making the arm move then I drop everything. It doesn’t work anymore.’

When one of Eva’s sons was diagnosed with a level of autism that automatically qualified him for the NDIS, she couldn’t see why she didn’t also meet the criteria.

‘The more I read the legislation, I realised there was no reason why I couldn’t get it as well,’ she said. ‘And then I thought, well, I spend all this time advocating for my children’s needs – isn’t it time that I advocated for myself?’

 

Accessing the NDIS

Although it has been difficult, Eva’s journey proves that gaining access to the NDIS with lymphoedema is definitely possible. As of December 2022, only 28 people in Australia were on the NDIS with the primary disability of lymphoedema (NDIS 2022); a very small number considering that lymphoedema can occur following treatment for breast, gynaecological and prostate cancers, as well as melanoma. Although the incidence of secondary lymphoedema following cancer treatment in Australia is unknown, Cancer Australia conservatively estimates that 20% of cancer survivors will experience secondary lymphoedema, which equates to more than 8,000 new cases in Australia per year (Cancer Australia, 2023).

 

Eva’s plan gives her access to compression garments, as well as allied health services such as massage therapy, physiotherapy and psychology. It also provides funds for some cleaning and gardening, improving Eva’s home environment and enabling her sons to focus on their studies.

‘The support is making such a difference. It’s just amazing,’ she says. ‘It takes the stress away. It’s such a broad range of specialists I need to see, and there’s no way you can afford that.’

Eva’s advice to others in a similar situation is to look closely at the legislation, find out what you’re entitled to and be persistent. Finding a specialist who is good at dealing with NDIS would also go a long way.

‘If you’re someone who can make do with off-the-shelf garments and you’re still in your cancer journey, chances are it will fix itself with the passing of time and you would not meet the eligibility criteria,’ she says. ‘But if you’ve got a specialist who knows how to write the right words on the report, [lymphoedema] can definitely meet the criteria. I would say just apply and expect them to knock you back. And then just keep going. Keep appealing.’

 

Help paying for treatment

Lymphoedema treatment can be expensive, and there are options available to help with those costs.

  • If your GP refers you to a lymphoedema practitioner as part of a Chronic Disease Management Plan, you may be eligible for a Medicare rebate for up to five visits each year.
  • Compression garment subsidy schemes are run by most state and territory governments.
  • If you have private health insurance, check with your provider whether you are entitled to a rebate on compression garments.
  • You can find a qualified lymphoedema therapist from the Australasian Lymphology Association website.

 

Further information

For further information on lymphoedema, download the Cancer Council’s Understanding Lymphoedema fact sheet, watch our lymphoedema webinar or visit our lymphoedema information page.

If you require assistance or have concerns about lymphoedema, please reach out to your breast care nurse or contact us on 9324 3703.