Specialist Nurses are the lynchpin in modern multiple sclerosis (MS) care but their numbers in Australia are deeply inadequate and declining. A new report confirms that Specialist MS Nurse care reduces symptom severity in this chronic neurological disease, optimises use of complex, effective (albeit expensive) therapies and reduces hospitalisation. Economic studies show substantial cost benefits.
It’s a no-brainer for best-practice care for people with chronic and complex disease but we need forward thinkers driving health reform to make dedicated funding a reality. Integral to this is overcoming the barrier to integrated care caused by the State/Commonwealth divide as detailed in a recent Pearls & Irritations article by Professor John Dwyer: ‘Desperate Premiers call for radical redesign for health care funding’.
Why are MS Nurses so important?
MS is a chronic neurological disease that comes with a myriad of potential symptoms, great uncertainty in prognosis, and an array of possible management pathways that must be tailored to the individual. Most people are diagnosed with MS in their 20s and 30s, in the midst of their most productive time of life. For a person thrust into such a situation, at an age when many are studying, building a career or starting a family, and with little experience with the healthcare system, the threat to both physical and mental health is substantial. They simply can’t do it alone.
An MS Nurse provides education, counselling, help to access support services and empowerment through shared decision-making about treatments, lifestyle, and research choices. All this, along with helping manage complex medications, associated safety monitoring, life-altering MS symptoms, conditions in addition to MS, and helping patients to handle the mental load of the uncertainty and invisibility that is MS.
MS Nurses are, however, more than care coordinators. Specialisation requires extensive training and demonstrated knowledge that ensures competence to answer questions from patients, carers and referring doctors. Early and ongoing involvement from an MS Nurse tackles head-on the burning questions and issue of concern, significantly reducing the need for lengthy or additional medical consultations. When the UK introduced its network of MS Nurses in the 1990s, hospitalisation rates dropped by a massive 97%!
As medicine advances, care for severe chronic disease becomes more complex, often involving multiple specialists and making communication difficult for GPs, let alone patients. MS can be a particularly confusing, unpredictable and challenging diagnosis to grapple with. From the time of diagnosis and at “milestone moments”, such as when a rapid response is needed (for acute relapses and potentially life-threatening medication side effects), specialist nurses provide an immediate contact point for patients and coordinate appropriate action.
Evidence for benefits of Specialist Nurse care
The importance of Specialist Nurse Care has been recognised for other chronic diseases. It is not by chance that all funds raised by the Jane McGrath Foundation are invested in breast cancer nurses. For MS, we had reams of anecdotal evidence that people with MS do better in the care of Specialist Nurses, but we needed hard data, and to understand whether the access problem was across the board. In collaboration with MS Australia and MS Nurses Australasia, the Menzies Institute for Medical Research surveyed 1417 people with MS for the 2022 MS Nurse Care in Australia report. Of these, nearly one third (31.5%) did not have access to an MS Specialist Nurse and experienced consistently worse health outcomes. These included higher disability levels, faster disease progression, greater severity of MS symptoms, higher levels of depression and anxiety and a lower health-related quality of life. This Australian experience aligns with international studies showing the benefits of MS Specialist Nurse care in Canada and the UK.
Not only are the health outcomes better with MS Specialist Nurse care; the costs are estimated to be much lower. MS Specialist Nurse care reduced the need for people with MS to see other more costly health professionals, such as GPs and Neurologists, and prevented unplanned emergency department presentations. Even using conservative estimates of avoided costs, preliminary economic estimates suggest MS Specialist Nurse care is highly cost-effective. A modest investment of only $5 million per year to provide MS Specialist Nurse care to around 8,000 people currently without access in Australia would reduce the cost of their overall MS care by $64.3 million annually, assuming cost savings of 10%. It almost seems ludicrous not to do it.
Increasing access to MS Specialist Nurses
To increase the level of specialist nurse care, the MS Nurse Care in Australia report made four key recommendations. They are to raise awareness of MS Specialist Nurses; to support and expand their existing workforce; to increase their number; and to improve access to MS Specialist Nurses, including amending Medicare eligibility to include their telehealth consults. MS Australia has convened a Working Group to help translate these into action, but several of these themes extend across chronic disease care and beyond and will involve systemic change.
At present, MS Specialist Nurse care is delivered mostly through community providers (such as state or territory MS Member Organisations; 45.7%) and public hospital clinics (44.9%), and there are different pressures for each. This must be replaced by government-funded career path positions.
Management of MS (and many other chronic diseases) in the community setting by Specialist Nurses makes sense. Service provision by the MS Organisations and others now relies on a combination of NDIS funding and community fundraising. The corollary is that care is determined in part by the size of a person’s NDIS package, often dependent upon the degree of disability and not at all reflective of the more subtle or invisible symptoms of MS.
The path to increasing community MS Nurse care in Australia must be carefully considered to ensure we do not prioritise only the very sick at the expense of disease prevention. The Report authors stressed that “MS Nurse care is… particularly important at the distressing and confusing time of diagnosis, when education, information, support, and compassion is essential. It is important that access to, or funding for MS Nurse care is not tied to severity of symptoms or degree of disability, especially as careful management of MS in the early stages can reap the benefits of preventing, minimising, and delaying progression of disability.” Our 2017 Health Economic Impact of Multiple Sclerosis Report highlights the economic implications: the societal costs of MS were $30,561 per person per year for a person with no disability, compared to $114,813 for a person with severe disability.
Prevention is an express goal of the radical healthcare redesign called for by Dwyer, in an unlikely union of two State Premiers from opposite sides of politics: a “re-jig that turns a sickness/doctor centric system…. for the tsunami of Australians developing potentially avoidable chronic and complex diseases, into one that provides Australians with integrated multidisciplinary care that enables prevention strategies and far more effective care in home/community settings rather than hospitals.” The evidence cited in this article shows MS care to be an exemplar for radical change.
All Australians with severe chronic disease await “radical redesign”
As with many severe chronic and complex diseases, the majority of ongoing MS care in hospitals is managed from outpatient clinics. As John Dwyer so elegantly put it: “The ‘Achilles heel’ of our health system is the wretched jurisdictional division that has States responsible for hospital care and the Commonwealth responsible for Primary and Community care, the failure of which to minimise avoidable illness and acute care situations, has our hospitals in so much trouble.” Specialist led out-patient clinics have been one of the casualties, falling into the jurisdictional no-man’s-land, and taking hospital Specialist Nurses with them. This is a systemic issue that will require health reform to solve in the longer term. We welcome the resurrection of change agents such as an Australian Healthcare Reform Commission, towards an integrated system that averts the human and economic costs of “too little, too late” in MS.
Belinda Bardsley
Belinda Bardsley is an MS Specialist Nurse with 30 years’ experience in clinical research and Manager of the Neuro-Immunology Clinical Research, Education and Support Service (N-CRESS) at Austin Health, Melbourne. She is immediate-past President of MS Nurses Australasia, an author of the MS Nurse Care in Australia report, past President of the MS Health Professionals Network, and an Honorary Research Associate at the Florey Neurosciences Institute. Belinda has a keen interest in service delivery improvement in clinical trials. She is also passionate about the need for equitable access to MS Nurses for all people with MS.
Rohan Greenland
Rohan Greenland is the CEO of MS Australia, Chair of the Neurological Alliance Australia, and has spent the last three decades in senior executive positions across several national health and medical research organisations. He is a passionate advocate for improving the lives of people with MS, through MS Australia’s strategic program of research and advocacy.
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