Parkinson’s Nurses Are Crucial for the Management of Parkinson’s Disease: 2007–2024

The role of the nurse specialist in the UK

The nurse specialist role in the UK evolved in the 1970s [7] and is often described as a combination of four elements: clinical, education, research, and consultation [8]. This description perhaps oversimplifies and negates the hidden work that nurse specialists perform, for example, in improving and redesigning services, clinical ‘rescue’ work, the co-ordination of care and brokering on behalf of patients to ensure appropriate and timely care [9]. Rescue work is performed primarily by nurses to prevent negative patient events, for example to ensure constipation is addressed and provide education to prevent reoccurrence.

The range of nurse specialist roles generally in the UK has increased over time as the value of the role has been recognized with multiple models needed to provide deeper understanding of the unique characteristics of each role depending on the area of practice. For example, the focus of the role may be in a specific population group (e.g., younger or older people, a care setting (e.g., palliative care) or a location (e.g., hospital, community, telephone service or care home). Fulton (2021) states no one model is best; the best model is the one that explains the phenomenon of interest [10].

The UK National Institute for Health and Care Excellence (NICE) Guideline for Parkinson’s states that PwP should have access to a PNS specifically for: 1) regular access for clinical monitoring and medicines adjustment, 2) a continuing point of contact for support including home visits when appropriate, and 3) a reliable source of information about clinical and social matters of concern [11].

The 2022 UK Parkinson’s Audit found that 95.1% of the 6,489 PwP attending elderly care and neurology services could access a PNS [12]. The majority who responded to the audits’ Patient Reported Experience Measure (PREM) questionnaire (80.3%) felt that the amount of contact with their PNS met their needs, similar to the percentage who felt this about their Parkinson’s specialist doctor (78.7%). These numbers are likely to be an outlier for many Westernized developed countries but the results are useful to highlight the PNS gap that exists in other countries and the need to address this.

Development of the PNS role in the UK

Access to a PNS following a Parkinson’s disease diagnosis in the UK has provided significant benefits to patients over the last three decades [13]. The role has developed into a model of expertise in specialist nursing care that supports PwP at every stage of the disease. The PNS is often the healthcare professional that coordinates patient care referring on to the interdisciplinary team who can then offer non-pharmacological management and symptomatic relief of motor and non-motor symptoms [14].

The first PNS post in the UK was developed in Cornwall in 1989 after a community study showed PwP had several NMS such as constipation and altered sleep patterns which could be anticipated and proactively managed through specialist nurse intervention [15]. The wider development of the role was then spearheaded by the charity Parkinson’s UK [16], aiming to improve prognosis and reduce the impact of the condition on both patients and families. The charity supported a ‘flagship’ team of nurses with specialist knowledge in Parkinson’s disease to improve care standards and services. Since these nurses came into post the numbers of PNS have grown significantly and there are now 515 PNS in the UK [17] found in both community and acute settings. This development has largely been due to the fact that Parkinson’s UK provided the NHS with funding to implement PNS posts for up to two years which enabled rapid expansion of the role. The funding was only provided if the NHS agreed to continue with the role thereafter but this did enable the role to be nurtured and protected until benefits could be demonstrated [16, 18]. Aside from subjective patient-expressed benefit, service commissioners anecdotally reported improvements such as increased neurology service capacity, reduction in waiting times and reduction in emergency hospital admissions resulting from the PNS interventions [19].

Evaluation of the PNS role

Although the PNS role has been in place for some three decades there is still very little RCT evidence of efficacy; consequently nurse value is frequently questioned by health services that seek to demonstrate value in terms of patient outcomes and cost efficiency [16]. The role is however multidimensional in nature with a lack of defined parameters of outcomes and value due to the multiple roles of the PNS. Nonetheless the Royal College of Nursing and Parkinson’s UK made the case several years ago for maintaining and expanding the PNS and other condition-specific roles arguing a leading role for the PNS in ensuring patients get the best care possible [19].

In 2002 a two-year RCT of a community-based PNS role was conducted [20], involving 438 general practices and a total of 1,859 PwP. The primary outcomes measured clinical outcomes, mortality, patient wellbeing, healthcare costs, medication, and onward referrals; PNS had little effect on clinical condition but did improve subjective wellbeing at no additional cost compared to patients supported by their General Practitioner. The trial intervention used nurses who had only recently trained in care of PwP so with hindsight benefits may have been minimized by the nurses’ lack of experience.

In a further RCT, Reynolds et al. (2002) compared outpatient services led by a consultant neurologist only, PNS only and PNS/consultant follow up with frequency of contact based on patient need [21]. The collaboration between the two professionals was beneficial and the nurses’ longer consultations enabled greater attention to be paid to patient concerns, but the authors concluded that while the PNS expertise was valued the increased cost of the nurses meant they could not be recommended.

In 2006, 89 PNS were surveyed to examine job specifications, perceptions of service delivery and views about assistance [22]: 80.9% had completed specialist training, 60.7% had been in post for more than five years and 32.6 % were non-medical prescribers. They described their major barriers to service delivery as lack of time, administrative support, and heavy caseloads. The study concluded that although the nurses provided high-quality disease-specific care, they were concerned about their ability to maintain this.

An evaluation in Northern Ireland [23] examined the perceived effectiveness, acceptability, and efficacy of PNS among PwP and the multidisciplinary team. A key finding was of the value of the PNS in both acute and community settings, but there was a clear need to clarify the role of the PNS as perceived by other healthcare professionals who could in turn promote the service to their patients.

A Swedish study demonstrated the PNS role provides tailored and competent care to alleviate symptoms, but that PNS required practical skills, theoretical knowledge of Parkinson’s disease and the ability to provide emotional support [24].

More recently RCT data from a study in Germany demonstrated that compared to standard care, an integrated approach with individually tailored care plans and home visits improved patient QoL, motor and non-motor features over a six-month period [25]. Future studies need to address the cost-benefit ratio and whether positive effects can be maintained long-term. These findings were also supported in a Canadian study which highlighted that integrated care and self-management support is promising for its feasibility, impact, and a sustainable cost in PwP [26].

Global adoption of the PNS role

While the PNS role and nurse training is well established in countries, for example, the USA, Canada, and Germany [27–31], there is poor PNS availability in low and middle income countries [32] with the median number of neurological nurses varying from 0 per 100,000 population for low income countries, including those in Africa, to 5.04 per 100,000 for higher middle-income countries, together with central and eastern Europe [33].

One of the wider issues in terms of PNS development is the global shortage of nurses, estimated to be almost six million. WHO State of the World’s Nursing report confirms the critical role of nursing in achieving universal health coverage and documents 80% of the nursing workforce work in countries with 50% of the world’s population [34]. To put this in context the African continent has one percent of the world’s healthcare workers (most of whom are nurses) but 25% of the global burden of disease. Much of the nursing time here is devoted to addressing important issues like the initiation of retroviral treatments for HIV [35]. For specialist nurse practice, half of the world’s countries do not have access to educational pathways to train specialist nurses, and for Parkinson’s disease this may be compounded by the fact that neurological nursing as a speciality is not recognized in 41% of countries surveyed for the WHO Neurological Atlas [33].

The lack of government expenditure on health in developing countries also contributes to the deficit in PNS posts globally. Funding is frequently inadequate, and lack of health insurance coverage means that PwP must pay for their own basic health care and medication. Again to put this into context, only 23% of countries worldwide had neurologists in rural areas in 2017, while levodopa, the most effective medication for Parkinson’s disease [36], was only consistently available in primary care in 34% of the 110 countries surveyed for the WHO Neurology Atlas [33], none of which were low income countries. Limited access to treatment means PwP cannot receive even the most basic therapy let alone a PNS.

Education likely represents a good return on investment through improved patient management, but these is also need to acknowledge local models of care which may not include PNSs because of nurse shortages. In India, an interdisciplinary community model of care is delivered in 65 support centers which promotes self- management to improve independence and QoL. In Uruguay, a therapeutic, rehabilitation and educational program has been developed which additionally demonstrates the importance of the community in management of Parkinson’s disease. PNS could be instrumental in developing and supporting more resources like these globally if such posts were available.

Recognizing the need for greater awareness and improved education in Parkinson’s disease, a Movement Disorders Task Force was established in 2012 and a first African PNS course, attended by nurses and therapists from six countries in Africa, was developed [37]. Following the success of the course similar courses have been held in Ghana, South Africa, Ethiopia, and Tanzania [38].

Clearly funding is a major issue in PNS development and insight into how PNS posts develop is useful and as in the UK external funding if often used. In Australia the Department of Health employed 49% of PNS while the pharmaceutical industry employed 21% to assist with device-assisted therapies for complex patients [27].

Crucial elements of the PNS role

Lennaerts et al. (2017) [39] have developed a guideline outlining seven areas that define the PNS role, which has led to clinical practice recommendations in nine key areas (Table 1). These guidelines are currently being evaluated in the Netherlands [40], and a further realist four-phase economic evaluation is being undertaken in the UK [41], which will increase the current knowledge base of the PNS role. However, lack of consistency in the way PNS work is a complication in assessing PNS benefit. While prescribing is seen as an essential part of the role, some PNS practice without this recordable qualification and do not prescribe. For those PNS that can prescribe, some can only prescribe within a certain agreed framework, while others can prescribe more robustly, such as infusion therapies, drugs for mental health complications, and autonomic challenges. This is also reflected in other parts of the world such as Australia.

Fig. 1

The multidimensional elements of the PNS workload adapted from Tenison et al., van Munster et al., Lennaerts et al., and MacMahon & Thomas [13, 30, 39, 45]. CPN, community psychiatric nurse; GP, general practitioner; HCP, healthcare professional; MDT, multi-disciplinary team; Mov Dis, movement disorders.

Many PNS also manage patients with atypical parkinsonian syndromes including multiple system atrophy, progressive supranuclear palsy, and corticobasal syndrome. PNS can have a key role in identifying features that indicate an alternative diagnosis and in providing these patients with a holistic care approach.

There is growing awareness that the delivery of integrated personalized care provided by an interdisciplinary team is also necessary to meet the needs of PwP [42–44]. The PNS can be pivotal in providing coordination, ensuring referral and access to interdisciplinary care, coordinating care packages in addition to creating extra capacity by sharing patient management with movement disorders specialists.

MacMahon and Thomas (1998) outlined that patient priorities vary across the disease trajectory and conceptualized a four-stage pragmatic clinical scale (Table 2) outlining the role of the PNS within each stage [45]. An additional prodromal phase has now been included highlighting that non-motor symptoms such as anosmia, constipation, and rapid eye movement sleep behavior disorder may predict the development of motor Parkinson’s disease [46].

The role of the PNS across these stages incorporates a range of clinically complex interrelated activities which include utilizing their specialist clinical skills and care coordination as well as education, advice, and support to both patients and their care givers [47, 48]. These three areas of clinical practice additionally include a variety of interrelated activities outlined in greater detail in Fig. 1.

The expertise and flexibility of the PNS in clinical practice is particularly significant across disease stages as well as helping PwP to become experts in self-management of their condition. A recently developed UK pathway [49] states that all patients with neurodegenerative movement disorders should have access to a specialist nurse throughout the course of the disease but that existing barriers related to this include inequitable care, lack of nurse prescribers, variation in nurse availability and inconsistent job roles.

PNS are part of a complex network of health and social care professionals and have the expertise to refer onto these and other agencies at the appropriate time. Most of the work is provided through nurse-led clinics, virtual assessments or telephone work, as well as community outreach or in-reach depending whether the nurse is working remotely or in an acute or community setting. The increase in monitoring technology solutions opens up opportunities for remote management and real-time support which can improve workforce capacity [50–55] but requires PNS to adapt to new ways of managing and analyzing clinical data. The PNS can perform many roles, but interpretation about their functions varies between countries and between local institutions [39]. Additionally, many specialist nurses of all kinds are without adequate administrative support with their time frequently spent on non-nursing activities and also subject to annual review processes to demonstrate their benefit which has a negative impact on their role [56].