Living with Multiple Sclerosis in 2019

An interview with MS Australia CEO, Deidre Mackechnie

Meeting the Needs of People Living with MS, Their Families and Carers

The multiple sclerosis (MS) journey has changed significantly over the past decade with regard to diagnosis, treatment and management options and cost of the disease. These changes, coupled with the social, technological, policy and economic trends in Australia and overseas, have had a dramatic impact on the service landscape.

In some cases these changes and trends present challenges for the sustainability of existing business models and also provide the opportunity to redesign services to ensure people with MS, their families and carers receive the right support at the right time in the right place.

The MS family of organisations recognises the need to respond to these challenges using evidence about the specific and emerging needs of people affected by MS to support decisions about what, when and how to offer services.

To this end, MS Australia on behalf of its four State/territory member organisations (MSWA, MS Queensland, MS Limited [ACT/NSW/TAS/VIC] and MS Society of SA/NT) engaged KPMG to conduct independent research with people living with MS, their families and carers to better understand:
The experience of people living with MS, their families and carers,
The extent to which they are satisfied with current supports, services and information and any unmet demand, and
The emerging services that are likely to meet their needs into the future.

The Report of these research findings has now been released. Incorporating well over 2,000 responses from a broad cross-section of the MS community across the nation, the Report provides a rich source of insight into the lives of people with MS, their families and carers and their needs at the various stages of their MS journey.

Among the key findings:
• 64% reported an effect on employment and ability to earn an income
• 27% (1 in 4 people) had an unmet service need
• 79% of people diagnosed with MS were taking a disease-modifying therapy (medication that modifies the activity of the immune system to slow the frequency and severity of attacks to the central nervous system)
• 69% of carers reported that caring has an impact on family and relationships

Marcus Stafford, CEO, MSWA said, "We've always known that the time of diagnosis is a 'ground zero' moment for people with MS and other neurological conditions. Knowing the specific information that newly diagnosed people are seeking at this incredibly emotional stage of their journey, helps ensure we provide the right services and support at the right level at the right time".

"Carers play a vital role in supporting people living with MS", said Gerard Menses, CEO, MS Qld, "The research will help us provide better assistance to the thousands of unpaid carers who require the same first-hand advice, information and connection to supports, as people living with MS".

Christine Hahn, Acting CEO, MS Society of SA/NT said, "The MS community, like the broader community, are increasingly using technology to access information and in many cases, to monitor their disease journey. The Report tells us that for those not already using it, there are strong levels of interest (61%) in using technology to increase connectivity with service advice and support and to connect with peers. This helps us to build and expand these channels".

John Blewonski, CEO, MS Limited (Vic, NSW, ACT and Tas) said, "We know that MS has a huge impact on employment and incomes, and the finding of a 36% drop in full time employment for those still of working age (under 55 years) is significant. The impact on carer's capacity for employment (a drop of 30% in carers employed full time) is also significant. That's why we are committed to keep expanding our MS Employment Support Service, so people with MS can stay employed longer. Our team provides a range of support especially assisting with workplace arrangements and fatigue management."

Deidre Mackechnie, CEO, MS Australia said, "The Report will provide MS Australia with valuable evidence for its ongoing advocacy at the national level, with a particular focus on advocating for systemic improvements in the health, aged care and disability sectors. I would like to take this opportunity to thank all those people living with MS and carers who participated in this study – their insights will help us shape how we meet their needs into the future."

Interview with Deidre Mackechnie, CEO, Multiple Sclerosis Australia

Multiple Sclerosis (MS) is one of the most commonly acquired neurological diseases in young adults. Most people are diagnosed between the ages of 20-40 years, but it can affect younger and older people too with roughly three times more women than men diagnosed. So it is very much a young woman's disease. On average, more than 10 Australians are diagnosed with MS every week. We estimate that it affects about 26,000 people in Australia and more than two million worldwide.

MS affects the central nervous system (brain, spinal cord and optic nerve) through an auto-immune response that cause inflammation and damage to the fatty layer around nerve cells. This fatty layer insulates the nerves allowing transmission of impulses smoothly from one part of the body to another. This is important when we think, see, touch, talk and walk.

When these impulses are interrupted by MS lesions, the messages don't get to and from the brain as effectively. And because the lesions can happen anywhere in the central nervous system, each person's experience of MS is varied, depending on where the lesions develop, and is also unpredictable from day to day. Some symptoms might be more visible (like difficulties with walking, balance or coordination), whilst some are invisible to others (such as vision problems, dizziness, pain, fatigue and altered sensations).

In Australia, like elsewhere in the world, people diagnosed with this disease need a number of services and supports. It might be different ways of receiving information about diagnosis or medications, or some more practical support in managing the day to day challenges of the disease.

Multiple Sclerosis Australia, of which I am CEO, is the national peak body for people living with MS in Australia and we provide a voice for people living with MS across the country. It's essential when speaking on behalf of people living with MS and their carers, to know and understand how MS affects people day to day. So we asked KPMG to speak to over 2000 people affected by MS, to get their insights and understand what people are wanting from their services and supports.

Question: Can you tell us about the findings of the Living with Multiple Sclerosis in 2019 study?

Deidre Mackechnie: One key insight is that there is keen interest in services beyond their medical specialist. Diagnosis is 'ground zero' and a highly emotional stage of the MS experience, especially when you consider the age, and life stage, at which MS is usually diagnosed. The study showed that people aged 16-34 years wanted more information on lifestyle and access to counselling and emotional support. Neurologists and MS nurses are a key information source at this point, but there is also a desire for online information that was more personalised and detailed, to fit with their experience of MS.

Family members and carers also require better access to information and support, with 79% of carers telling us that caring has an impact on their emotional wellbeing. They felt that the information they receive at the point of diagnosis is often second-hand via the person living with MS.

Despite the progress made in relation to MS in recent years in treatment and delivery of services, many people still had unmet needs that most often arose from issues with affordability and accessibility.


Question: What surprised you most about these results?

Deidre Mackechnie: Many people living with MS felt they needed additional services that they were currently unable to access. The biggest barrier to accessing services for those 16-34 years was that they just couldn't afford the services they needed, particularly for younger people. It may also indicate that people living with MS, their families and carers will be increasingly exposed to the economic impacts of living with a long-term, chronic disease. Not knowing how to access services or being ineligible for services was particularly common among those who are not receiving services through the National Disability Insurance Scheme (NDIS).

Question: How can we begin to meet the needs of people living with MS, their families and carers?

Deidre Mackechnie: People are increasingly using technology and accessing information online. But it's important for people to know that they can trust the sources of information. Creating channels and stories that provide trusted information and emotional connection for both people diagnosed and those caring and providing support is important.

Featuring stories of people living well with chronic diseases such as MS might also assist, particularly if there's a focus on lifestyle and choice. And carers need support to be the support. Family members and carers might like to see more stories of other informal carers and how they navigate the day to day challenges and emotional demands of caring.


Question: How difficult is it to overcome the challenges of an invisible condition?

Deidre Mackechnie: An invisible condition can be really challenging as people often have less empathy for someone if they cannot 'see' what they are going through. But many of the invisible symptoms that people with MS experience can be really challenging: issues with their vision; numbness, tingling and burning sensations; even problems with bladder and bowel continence. Not to mention fatigue, which can be absolutely debilitating, heat intolerance and cognitive changes.

We know of people living with MS, who are entitled to park in disabled parking bays, who have been abused as people cannot see their disability. And people with MS will often comment that many people say "you look so well" when in fact they feel terrible. These things can be really confronting.


Question: How does having MS, even in the early stages, affect employment and ability to earn an income?

Deidre Mackechnie: It really depends on the symptoms you experience and the work that you do. But our recent study shows that 64% of people living with MS report an impact on their employment, as they are more likely to work part-time and more likely to cease work at an earlier age than the average person. Research studies in Australia indicate that the most important thing a person with MS can do is to tell their employer that they have MS and discuss what that means for their employment. It may be as simple as being able to sit on a stool rather than stand, working closer to the toilets to assist with continence issues or having a fan on the desk if heat intolerance is a problem.


Question: What can we do to support carers?

Deidre Mackechnie: Carers, usually family members, are an incredibly important part of the life of a person living with MS. And it is really common, 87% of people living with MS tell us they have someone, in an unpaid or informal way, as their main source of support. This is usually a partner or a parent, but sometimes it can be the child of someone living with MS.

So it is vital that we support the ones that support. That can be a simple as just checking in on them, maybe giving them a bit of time out or running an errand for them. And really importantly, when the carer is a child, making sure they are able to keep up with their school work and to still be a kid from time to time.


Question: What are the initial symptoms of MS?
Deidre Mackechnie: The symptoms first experienced by a person are incredibly varied from one person to the next. For some it may be changes to their vision, like blurring or picking up movement in their peripheral vision when nothing is there. For others it can be a change in sensation such as numbness or a tingling in a part of their body.

For most people their initial symptoms go away after a relatively short period of time, usually within a few days. Then they may not experience anything further for months. Often when symptoms re-present they are different to the first time and so many people do not make the connection between the two events. This is one of the reasons people may experience a delay in diagnosis, often quite a lengthy one, as many GPs do not necessarily put the symptomatic events together, especially if they see different GPs each time.


Question: What advice do you have for a woman recently diagnosed with MS?

Deidre Mackechnie: The most important thing I would say is to take control. Seek information from reliable sources such as their Neurologist, MS nurse or via MS Australia. Make sure you are an informed and active participant in the decisions that are made about treatment and managing your MS.

Also, think about the things that you can do to optimise your health and wellbeing. Things like a healthy diet, stopping smoking and getting some exercise are absolutely vital in minimising the impact of MS on your life.

Question: How do those with MS get access to grants and funding to aid in changing mobility requirements for equipment and home access?

Through the NDIS:

People with MS with a disability aged under 65, who have successfully become NDIS participants, have their assistive technology (AT) needs met through the NDIS – obviously this is not always simple and straightforward and we hear many stories of difficulties with every stage of the NDIS process -  getting access to the NDIS ("you are not disabled enough"); once you get access, getting your plan activated (sometimes long waits for items of assistive technology and home modifications) and getting plans reviewed as they don't meet the needs of the participant, or the participant's needs have changed by the time their plan is activated. Others tell us their NDIS plans are working well.

 

Through My Aged Care:

People with MS who acquire their disability when they are aged 65 or over must apply to have their assistive technology needs met through My Aged Care.  Unlike the NDIS, My Aged Care is capped and means tested, so often people have to "rob Peter to pay Paul" according to the level of package they receive, to have their AT needs met.  We are told there are long waiting lists for home care packages, home modifications and certain types of AT.

 

Through other systems:

For those not eligible for the NDIS, there are various schemes in each state/territory that might help meet their needs, such as SWEP in Victoria, though this is subject to eligibility requirements.  The state/territory MS organisations can also sometimes help with AT and are certainly the first point of call for anyone living with MS who needs AT assistance.

 

https://swep.bhs.org.au/