Multiple Sclerosis (MS) nursing first began as a specialised field in Australia about two decades ago, coinciding with the first treatment for MS in Australia, an injection called Betaferon. As nurses were recruited to help train patients in self injection techniques, it became apparent that nurses could have a significant impact in MS symptom management and relapse management, becoming a valued member of the MS care team.
Today, there are approximately 90 MS Nurses across Australia, working at an advanced level of practice and managing nurse-led clinics.
What is MS?
MS, a disease of the central nervous system (CNS), is the most common acquired chronic neurological disease affecting young adults, often diagnosed between the ages of 20 to 40 years and affecting three times more women than men (Dobson & Giovannoni, 2019). In Australia, there are 25,600 people living with MS (MS Australia, 2022). There is no known single cause of MS, but genetic and environmental factors have been shown to contribute to its development. As yet, there is no cure.
In MS, the body’s own immune system mistakenly attacks myelin, which protects and insulates the nerves so that electrical messages sent from the brain to the body travel quickly and efficiently (Dobson & Giovannoni, 2019). As the myelin breaks down during a MS attack (demyelination), nerves become exposed and then scarred, which renders the nerves unable to communicate messages properly and puts affected nerves at risk of degeneration from subsequent immunological effects.
Depending on the area of the CNS affected, this results in a wide range of symptoms that can include issues with motor function, sensation, pain, vision changes, significant fatigue, cognitive issues and bowel and bladder dysfunction (Kister, et. al, 2013).
Clinically, there are three types of MS (Compston & Coles, 2008):
- Relapsing Remitting MS (RRMS): the most common type of MS, characterised by relapses (new areas of demyelination) and periods of remission. Relapses are unpredictable in both timing and CNS location.
- Secondary Progressive MS (SPMS): follows RRMS after a period of time, when recovery from relapses is not complete and disability begins to accumulate.
- Primary Progressive MS (PPMS): A rarer type of MS, which results in gradual progression from disease onset, rather than distinct relapses.
What are current treatments?
There has been a rapid evolution of disease modifying therapies (DMTs) since 1996 to treat the RRMS type, chiefly by preventing relapses and slowing down disease progression. Currently, in Australia there 16 therapies approved to treat RRMS (MS Australia, 2022), with most available on the PBS at a greatly subsided cost.
This has resulted in a brighter pathway for people with MS, as the impact from relapses has lessened, and accumulation of disability has reduced over the last decade. However, many of the newer therapies, whilst being highly effective, also have significant side effects which must be monitored and managed.
This is where MS Nurses have a considerable impact playing a major role in DMT logistics, applying concepts of personalised medicine, and providing education to patients. Unfortunately, the DMT options for people with PPMS are less advanced, resulting in a focus on symptom management, wellness, education, and support.
How MS nurses help
MS nurses have a vital role to play at all stages of MS, but arguably involvement when a patient is newly diagnosed is the most crucial stage. MS Nurses aim to create a pathway for a patient to be empowered, educated, supported and confident to manage their own condition.
Managing MS symptoms, relapses, mental health issues, disclosure issues and partnering with patients in all aspects of MS Brain Health and modifiable lifestyle factors is central to the highly skilled role.
MS nursing has also progressed significantly with the acquisition of an advanced skillset as DMT research and development has expanded and science has deepened MS knowledge. MS Nurses are supported in their role by other nurses, such as infusion nurses, community nurses, pharmaceutical company training nurses, and rural nurses.
A new report commissioned by MS Australia has shown that MS Nurses make a significant difference to the lives of people with MS, improving quality of life, reducing symptom severity, and slowing disease progression. There is a need to expand and support the MS Nurse workforce to provide this life-changing care.
Dr Therese Burke MACN
Dr Therese Burke is a Multiple Sclerosis Certified Nurse (MSCN), Certified in Rare Neuroimmunological Disorders (CRND) and currently working as the Clinical Platform Co-ordinator at MS Australia. Therese is Past President of both Multiple Sclerosis Nurses Australasia (MSNA Inc) and the international Multiple Sclerosis Nurses International Certification Board (MSNICB). With a research focus on understanding the lived experience and identifying ways to improve the quality of life and healthcare experience for people living with MS, Therese’s post-doctoral research focused on exploring and defining the role of the MS Nurse.
Compston A, Coles A. Multiple Sclerosis. Lancet. 2008;372(9648):1502–17. doi: 10.1016/S0140-6736(08)61620-7
Dobson, R., & Giovannoni, G. (2019). Multiple sclerosis–a review. European journal of neurology, 26(1), 27-40.
Kister, I., Bacon, T. E., Chamot, E., Salter, A. R., Cutter, G. R., Kalina, J. T., & Herbert, J. (2013). Natural history of multiple sclerosis symptoms. International journal of MS care, 15(3), 146-156.
MS Australia website. https://msaustralia.org.au. Accessed 20th June 2022.