(Picture: Mo Hope; AFLW player, carer for her sister Vinny Hope, and spokesperson for this year's campaign.)
Unpaid carers make an enormous contribution to our communities in Australia. October 13 to 19 2019 is National Carers Week – a chance to thank those who care for those living with multiple sclerosis (MS) in Australia. It's also an opportunity to spotlight the invaluable work of Carers Australia, to improve the lives of carers in this country.
The invisible carer
A member of the MS community told us:
‘’I always feel a little conflicted being called a ‘carer’. I guess outside my house nobody (family included) would ever even consider me being in that role.
So with that being said, for me, one of the top concerns would be the role of the ‘Invisible Carer’.
Many people don’t understand the challenges for people with invisible symptoms. The carers for these people are just as misunderstood.
As much as I can’t speak for anyone else in this situation, I often feel like a pretend carer as I ride the waves of the ups and downs of MS. I go through good times when symptoms are well managed and then crash with the onset of a relapse.”
Receiving an MS diagnosis has been described by some as ‘ground zero’. For family and loved ones, the impact can be as significant.
Over 25,600 Australians live with multiple sclerosis and over 7.6 million know or have a loved one with MS. To understand the needs and priorities of people living with MS and of those who care for them, MS Australia recently commissioned a national research study by KPMG, on behalf of our four state/territory MS member organisations. We released the findings of this research study: Living with Multiple Sclerosis in August 2019.
Significantly, almost 90% of research participants living with MS said that they have someone (informally) providing support to them with daily living activities. These carers support people with different types of MS, including many with complex needs.
The survey found that over half of these carers are a partner or spouse, whilst others rely on family, friends or even a child in their care. Young carers in particular described themselves as feeling “invisible and silent”, as did caregivers of single parents with MS. This type of informal support is an emerging service need and consideration at all stages of the MS journey.
The study also asked carers about the impact of their role - including practical, social, economic and emotional factors and the ideal supports they would find helpful.
A big response area was around caring not being recognised (or funded) by the National Disability Insurance Scheme (NDIS), and other barriers and issues such as geography.
Close to one in three carers say they don't have any support to perform their caring role.
Whilst caring for someone with a chronic illness like MS can be physically and emotionally exhausting, we know it can be a deeply satisfying experience.
The MS family of organisations recognises the need to respond to these findings, using this rich source of insight into the specific and emerging needs of people affected by MS, to support decisions about what, when and how to offer services.
For carers of people living with MS, it's often hard to satisfy eligibility criteria, for example to access a Carer’s Allowance, be recognised as a formal carer within the NDIS or in the aged care sector.
MS Australia will continue to advocate and lobby decision makers, to improve support for people with MS and their loved ones and carers. We want to make sure that everyone affected by MS has effective and appropriate management, interventions and support.
Show your support during National Carers Week (13-19 October)
Almost 2.7 million Australians care for someone with disability, a medical condition, mental illness or someone who is frail due to age.
This week we are celebrating National Carer’s Week – a great opportunity to educate and raise awareness about the importance of carers for people with multiple sclerosis.
Share your story!
We would love you to share your stories of caring for someone with MS, or being cared for:
- Tell us what you enjoy about your carer role.
- Tell us about any difficulties you've had as a carer in the disability, health and/or aged care systems.
- Or maybe take this opportunity to share how important your spouse, partner, child, friend of family member is to your own journey with MS.
Join the discussion on:
Practical support and information:
The MS Australia website has lots of practical information about symptoms, treatments, wellbeing and lifestyle that may be useful in caring for someone with MS. For example, for those caring for someone newly diagnosed, our “Understanding MS” publication may provide a useful starting point for an overview of MS.
Visit our Carers webpage for other details about caring for someone living with MS.