2024 Annual Demographic Survey of Parkinson’s Disease and Movement Disorder Nurse Specialists

Primary Objective

The main aim of this study was to gather demographic data regarding PDMDNS roles in

Australia, encompassing population distribution, geographical spread, educational background, clinical experience of nurses and to investigate changes in the location of their practice for the fifth consecutive year, 2024.

Secondary Objectives

The secondary aims included firstly delving into the scope of work undertaken by

PDMDNS professionals across Australia. Secondly assessing the long-term viability of this specialised nursing workforce. Thirdly, the study aimed to scrutinise the gaps in supporting the PDMDNS profession to ensure the longevity of its presence. Fourthly, it aimed to compare data across five consecutive years to detect emerging trends.

This insight will facilitate workforce planning concerning funding, education, and advocacy efforts.

The study and its design were solely and independently initiated by the Australasian Neuroscience Nurses Association (ANNA) Movement Disorder Chapter (MDC), with no external financial funding or conflicts of interest. The ethics application was submitted to and approved by the Northern Sydney Local Health District Human Research Ethics Committee in 2019 under project number ETH12872, titled "Parkinson's Disease Movement Disorder Nurse Specialist Demographic Survey," classified as a low or negligible risk project. In 2024, the ethics approval for this study was extended for another 5 years.

Data was gathered through an anonymous online survey created using the platform-https://www.surveymonkey.com. The survey encompassed a range of quantitative, multiple-choice questions along with a single qualitative free-text question. Its aim was to capture insights from a diverse group of PDMDNS professionals across all Australian states, covering aspects such as years of service, types of employers, and educational backgrounds.

The survey was distributed via email to PDMDNS contacts identified by the ANNA MDC from September through to November in 2024. However, only recipients employed as specialty nurses directly engaged with individuals with PD in Australia were included in the analysis (81% of responders). The collected data was then compared with data obtained from surveys utilising the same design in 2020 to 2024.

The survey link was emailed to over 200 nurses with an interest in PDMDNS known to the ANNA MDC. Following the closure of the survey link, 46 responses met the inclusion criteria, identifying themselves as employed as a PDMDNS working in Australia. This was somewhat comparable with responses included for analysis in previous years, 2020 n=57, 2021 n= 50, 2022 n=57, 2023 n=57 and 2024 n=46. Notably, as of 31 January 2025, ANNA MDC’s membership stands at 130. In 2024, there were 93 members, but this was a decline compared to 2023 when membership’s peaked at over 110 members. It is important to note that these memberships include but are not limited to Australian nurses, and could reflect an increase in international memberships, memberships from allied health professionals or memberships from other movement disorder subspecialities such as Huntington’s disease for example.

Ultimately, it is unknown how many Australian PDMDNS did not participate in the survey each year. We know there are PDMDNS that are not currently members of ANNA, and as previously mentioned, members of ANNA who are not speciality Parkinson’s disease nurses. Based on the evidence we have, and taking into account our knowledge of the PDMDNS ecosystem, we estimate 35-45% of PDMDNS did not participate in the survey.

Distribution of PDMDNS positions broken down by state. New South Wales (NSW) continues to be the highest employer of the PDMDNS respondents in the country at 41% (n=19) followed by Western Australia (WA) at 17% (n=8). For the past 4 years, Victoria (VIC) had been the second highest employer of PDMDNS, but this year saw a reduction of 40% when compared to the 2023 data. (Figure 1)

Figure 1.

Distribution of PDMDNS positions by State

South Australia (SA) decreased from 7 nurses in 2023 to 4 in 2024, Tasmania (TAS) decreased from 5 in 2023 to 2 in 2024. Queensland had an increase in the number of PDMDNS from 3 in 2023, to now 5 in 2024. Northern Territory and the ACT continue to have one single respondent employed in the same position covering each whole territory.

Overall, with the exception of QLD, PDMDNS positions have decreased across the entire country. (Figure 1)

Historically, we have seen growth in the number of PDMDNS positions in metropolitan areas over the past 3 years, however in 2024 a reduction in metropolitan nurses was noted, along with an increased number of positions in regional areas.

In 2024 there were 24 metropolitan nurses who participated in the survey; this is a decrease from 38 (peak) in 2020 and 35 in 2023. Regional nurses increased from 17 in 2023 18 in 2024, which is also an increase from 13 in 2020. There are currently 4 rural PDMDNS which is a slight decrease from 5 in 2023 but holding relatively steady since 2020 (n=6). (Figure 2)

Figure 2.

Count of PDMDNS positions by region

The majority of PDMDNS positions reported continue to be employed by relevant State Departments of Health 48% (n=22), however a significant decrease by 11 positions across Australia can be noted since last year’s survey. The pharmaceutical industry continues to be the second largest employer of PDMDNS’s in our cohort with 20% (n=9) in 2024, which shows a re-emergence in an upwards trend not seen since 2021-2022, as last year the percentage was 13% (n = 7). Consumer organisations remain the third largest employer with 13% (n=6) which is fairly stable when compared with 2023 results 9% (n= 5), and an increase from 2020 results 7% (n=4). Of note, some respondents reported that their position was partially funded by two sources, for example, consumer organisation AND state department of health, and some respondents currently hold 2 different PDMDNS positions. (Figure 3.)

Figure 3.

Distribution of PDMDNS positions by employer

Responders were asked to rate the amount of time they spent in various clinical settings as part of their role as PDMDNS. These responses ranged from “most of my time” to “none of time” with 2 options in between. For simplicity, any response for the categories “most of my time” or “often” were considered significant amounts of time in that particular setting. The data shows that in 2024, 70% (n=32) of PDMDNS surveyed spent a significant amount of time in the community/home visits. (Figure 4) This is a rise from 2020 where 63% (n=29) of the PDMDNS workforce was spending significant time in this area. To coincide with this, there has been a reduction in time spent in acute hospital inpatient(Figure 5) and outpatient departments 69% (n=32) in 2020 and 45% (n = 21) in 2024 Figure 6. Rehabilitation facilities have consistently been the place where PDMDNS support is lacking, with 76% (n=35) in 2024 indicating that they spend “none of their time” in this setting (Figure 7). Significant time spent over the phone has decreased from 85% (n = 43) in 2020, to 76% (n = 35) in 2024, however Covid 19 lockdowns will be responsible for the very high 2020 figures (Figure 8.).

Figure 4.

Proportion of time spent in community/home visits

Figure 5.

Proportion of time spent in an acute hospital inpatient setting

Figure 6.

Proportion of time spent in an acute hospital outpatient setting

Figure 7.

Proportion of time spent in a Rehabilitation facility

Figure 8.

Proportion of time spent on the phone

The percentage of nurses with less than 2 years of experience in their PDMDNS position has grown since the 2020 survey with 16% (n= 9) with 22% (n=10) in 2024. However, the 2024 data displays a reduction of 12% in the past year (32% in 2023). The 2-5 year cohort has remained relatively stable again this year, with 25% (n=14) in 2020 and 28% (n=13) in 2024, despite a fluctuation in 2022 32% (n=18). Pleasingly, PDMDNS respondents with 5-10 years of experience has shown steady growth with 19% (n= 11) in 2022, 21% (n=12) in 2023 and 28% (n=11) in 2024. The cohort of PDMDNS with over 10 years’ experience remains relatively stable with 26% (n=15) in 2020 and 26% (n=12) in 2024 despite a drop in 2022 19% (n=11). (Figure 9.)

Figure 9.

Proportion of nurses and years of experience as PDMDNS

The reported permanency of funding for PDMDNS positions continues to be stagnant over the past 5 years with 61% (n=28) of PDMDNS responding that their position has permanent funding and 33% (n=15) continuing without permanent funding in 2024. 7% (n=3) of responders stated that they did not have clarity on whether their position was permanent or not. The not applicable category included those employed on a contractbasis for example. (Figure 10)

Figure 10.

Proportion of PDMDNS positions permanently funded

It was concerning to see the decline in the number of PDMDNS indicating their intention to stay in the field for the 6-10 years. The cohort intending to stay for 6-10 years has overall decreased from 33% (n=19) in 2020 to 27% (n= 12) in 2024. The cohort intending to stay in the field for 11-15 years has remained relatively stable since 2020 18% (n=10) compared with 2024 22% (n=110) in 2024 despite a dip in 2022 12% (n=7). However, there has been a decline in the number of PDMDNS planning to stay for 16-20 years 23% (n=13) in 2020 reduced to 18% (n=8) in 2024, despite an increase in 2022 23% (n=13). The cohort intending to stay for only 0-5 years has increased in 2024 33% (n=15) from 26% (n=15) in 2020. (Figure 11)

Figure 11.

How long PDMDNS intend to stay in their positions by proportion

The proportion of PDMNS indicating that they have a Registered Nurse degree has increased from 23% (n=13) in 2020 to 35% (n=16) in 2024. We can also see a slight increase in the number of responders with graduate certificates or honours degree between 2020 and 2024 from 25% (n=13) to 39% (n=18). This is consistent and correlates well with the level of expertise and years of experience our cohort of PDMDNS is trending towards. (Figure 12)

Figure 12.

Level of tertiary education obtained

The PDMDNS respondents with a master’s degree reduced in 2024, sits at 20% (n=9) currently. There has been our first respondent in 3 years with a Doctorate in 2024 (last doctorate was captured in 2021). (Figure 12.)

In the grading system utilised, Grade A designates competent nurses, typically at the Registered Nurse level across most states and territories. Grade B indicates experienced or intermediate levels of specialist nurses, often corresponding to the Clinical Nurse Specialist level. Grade C is reserved for expert specialist nurses like Nurse Practitioners or Clinical Nurse Consultants. In 2024, 26% (n=12) of PDMDNS nurses held Grade A positions, a decrease from 34% (n=19) in 2022. Conversely, there was a rise in Grade B positions, from 2022 25% (n=14) to 39% (n=18). This has been steadily trend over the past 3 years and indicates a willingness to further specialise in the field of Movement Disorder. Grade C PDMDNS positions decreased at 28% (n=13) in 2024, compared to 34% (n=17) in 2021. (Figure 13)

Figure 13.

PDMDNS employment grading

There has been an increase in the proportion of PDMDNS respondents who agree that their level of pay reflects their level of practice, from 51% (n=29) in 2021 to 59% (n=27) in 2024. This corresponds with a decrease in the proportion of PDMDNS who disagree their level of pay reflects their level of practice, 39% (n=22) in 2021 to 24% (n=11) in 2024. (Figure 14)

Figure 14.

Number of PDMDNS who agree or disagree with their pay grade reflects their level of practice

The goal of this study was to encompass as many PDMDNS professionals in Australia as possible. Like in previous years, invitations to participate were broadly distributed via email to individuals known to the ANNA MDC. However, it's possible that some PDMDNS either did not receive the invitation or opted not to take part in the survey, which can introduce challenges in data interpretation. The ANNA MDC acknowledges the ongoing challenge of ensuring comprehensive inclusion of all PDMDNS professionals. Thus noting that these results may not be representative of the profession as a whole.

It's crucial for all PDMDNS to be represented to provide an accurate portrayal of the workforce. Efforts will continue to support and resource as many professionals as possible. In the future, tools such as QR codes for quick access to the survey and text message invitations and reminders may be considered. The reason behind the importance of this demographic data should also be discussed at events such as conferences, chapter meetings and webinars, in a drive to increase participation.

The 4 key highlights of the 2024 demographic survey demonstrates both positive and negative trends for the field of Parkinson’s and Movement Disorder Nursing in Australia. It is important to note it is difficult to compare these results with other nursing specialties in Australia, as the authors could not find any similar studies over the same time frame. As previously alluded to, the authors are aware that there was a significant number of PDMDNS that chose not to participate in this survey, and analysis and discussion is limited to the data we have received.

Firstly, historically we have seen an increase in reported PDMDNS positions in regional areas, however this trend has more recently changed with a drop in 2023 and 2024. This pattern was consistent with the 2019 Primary Health Network funding of $6.8million over 5 years, and then this project drawing to a close. This is concerning as the longevity of these positions are not guaranteed, and many nurses who were employed under this program have not had this funding continued. Although we did see a slight increase in regional PDMDNS positions reported in 2024, FTE needs to be considered as anecdotally many of these positions have been part time.

In 2024, NSW, VIC, SA, TAS and WA saw a reduction of PDMDNS positions reported in metropolitan areas. For NSW, it is likely this reduction is associated with the $8.6 million funding injected by the NSW state government in the 2021-2022 budget, coming to an end. That funding was distributed to initiate new nursing and allied health positions across NSW Local Health Districts (NSW Health 2024). Similar challenges with funding are reported across the country and are likely to have impacted metropolitan nursing positions Australia-wide.

There has been a trend from hospital based to community/home based nursing support where possible, that can be attributed to a general focus on keeping patients well at home wherever possible. This can be seen in the growth of PDMDNS working in home and community settings in 2024. Home based, nurse-lead care is known to improve the quality of life for patients and carers with chronic health conditions such as Parkinson’s disease (Rico-Blazquez et. Al. 2021).

A growth in the direction from hospital to community-based care opens the appropriate need to develop more Nurse Practitioner positions within the PDMDNS space. Nurse practitioners have the skills, knowledge, expertise, and legal authority (including prescribing rights) to provide preventative care, and diagnose and treat people within the community setting (Australian Government Nurse Practitioner Workface Plan 2023).

There has also been a rise in altered models of care since the Covid-19 pandemic (Australian College of Nursing, 2023), where there was a push for care to be provided for people outside of hospital settings wherever possible. Home based care has been shown to improve outcomes as well as the patient experience and shows a reduction in preventable adverse health events such as falls and pressure injuries that are common in hospital based care (Bestsennyy Et. al. 2021). An increase in the elderly population utilising digital technology such as video calls and telehealth platforms since Covid lockdowns in particular, has also attributed to the success of more flexible models of care (Sixsmith Et. al 2022).

In the future, it may be of interest to improve the clarity of the question regarding the time spent on the phone to include telehealth specifically, as many nursing specialties have reported a rise in the use of this platform to provide clinical assessments, reviews and care. In Australia in 2023, 24.3% of people had a telehealth consultation with a GP or medical specialist (Australian Bureau of Statistics 2023).

Secondly, the second leading employers of PDMDNS positions continue to be pharmaceutical companies employing product support nurses. Again, this reiterates our previous stance that pharma funded PDMDNS are specialised nurses with advanced practice expertise, and are equally as important in the ecosystem of

PDMDNS caring for people with Parkinson’s and Movement Disorders. Nurses in these positions have the flexibility to support patients in various settings and anecdotally spend a large portion of their time supporting people with Parkinson’s within their homes, providing device education and troubleshooting support, as we as managing side effects. An increase in nurses employed by pharmaceutical companies may account for some of the increase in PDMDNS in community and home settings. Worth mentioning, is that there are at least 2 new device assisted therapies on the horizon for launch in Australia in the coming years, and with these will likely come a further increase in pharma funded nurses amongst the Parkinson’s ecosystem. As this cohort of nurses continues to grow, this highlights the importance of having appropriate standards for practice and educational frameworks to enable these nurses to have access to ANNA educational events, projects and resources.

Thirdly, the expertise and skill mix of PDMDNS population is still recovering from the significant loss since 2020. Australian studies have shown that the COVID-19 pandemic has impacted the nursing workforce with a high proportion of nurses intending to leave the workforce within 5 years (Cornish et al 2021) There has been somewhat of a recovery in PDMDNS positions in the 2-5 years and 5-10 years of experience categories, after previous years showing a decreasing trend. It is also possible the continued decrease in the number of nurses intending to stay in their PDMDNS position for 0-5 years is associated with the planned retirement of experienced PDMDNS. This would also be consistent with the loss of more experienced nurses. The reduction in new nurses entering the field, may again be attributed to a reduction in funding for positions, or the uncertainty that comes with some of these positions not being permanently funded, and the impact this has on job security. However, it is a positive sign to see a stable number (2023 14%, 2024 13%) of PDMDNS undertaking entry level post-graduate studies such as graduate certificates, which suggests a desire for professional growth within the cohort and a long-term commitment to the speciality.

Concerningly, in regard to the funding for the past five years, more than 33% (and up to 44% at its peak in 2021) of PDMDNS positions have not been permanently funded. This is attributed to multiple government projects with only short-term funding of between 3-5 years. Many respondents cited this as a reason they plan to leave their positions in the next 2-5 years, as they wish to seek roles with more permanency.

Interestingly, in 2024, 59% of PDMDNS professionals believe their pay grade reflects their clinical proficiency and expertise. This is the first year since 2021 that this number has improved. This could however reflect the increase in less experienced nurses within our PDMDNS workforce, and so the expectations for pay are less. Additionally, many states have seen increases in award wages for nurses across their public hospitals in the past 2 years, which has improved satisfaction regarding take home pay.

Conducting annual surveys of PDMDNS remains a crucial endeavour, and participation in this survey each year must be seen as a high priority for the PDMDNS profession across Australia. The longitudinal data obtained provides a comprehensive overview of the PDMDNS workforce in Australia, detailing aspects like population distribution, geographic spread, educational backgrounds, and clinical experience and practice location. This valuable information equips professional organisations like the ANNA to tailor education initiatives, allocate resources effectively, develop relevant materials, and establish mentoring networks. Gaps in funding, job security and ultimately skill mix can be identified and addressed. Ultimately, the goal is to empower all PDMDNS professionals to deliver care at the highest level of clinical practice.