Article

Workloads of Parkinson's specialist nurses: Implications for implementing national service guidelines in England

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Abstract

Aims: Recent guidelines for the care of people with Parkinson’s disease within the British National Health Service envisage a wider role in the community for Parkinson’s specialist nurses. A national survey was conducted to explore current nurse caseloads and capacity for expansion.

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... When provided by nurses, programs that involve counseling, medication information, and collaboration with local organizations during hospitalization and discharge are known to be effective for supporting patients with PD. In the West, PD nurse specialists perform these roles [2][3][4] and, in recent years, efforts to improve these nursing activities have resulted in studies and surveys leading to the creation of nursing practice guidelines [5][6][7]. Due to the need to enhance the effectiveness of nursing care provided to patients with PD, the movement to maintain and further improve the quality of care is increasing globally. ...
... Japan does not have a widely employed qualification equivalent to the PD Nurse Specialist designation employed in the UK. us, while the nurses in this study did not have such extensive experience as specialized nurses abroad-such as those in the Netherlands, where guidelines propose a requirement of 150 patients treated, or UK, where the criterion is 500-we believe they have enough years of nursing experience to provide appropriate care to patients with PD [6,7]. ...
... For this reason, even if sleep management advice and psychological support, which MacMahon emphasizes as particularly important, were provided by the nurses we observed, these dimensions did not surface as salient elements of care [12]. Finally, caseload management, whose practice guidelines hold to be a critical part of care, was done by the nurses after they returned to their offices, so it was not counted as a practical element of care; this fact should be kept in mind when considering our results or planning future studies [5,6]. e following characteristics typified the care that we observed being implemented to patients in each HY stage. ...
Article
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As societal aging progresses globally, the number of people with Parkinson’s disease (PD) is expected to increase worldwide. Accordingly, the need for home health nursing care for homebound patients with PD will continue to expand. We aimed to clarify the clinical care provided by nurses to homebound patients in each Hoehn and Yahr (HY) stage of the disease. We analyzed the visiting nursing records of patients and observed the clinical care provided by nurses in patients’ homes and nursing homes to compare the attributes of patients and differences in nursing care by HY stage. All 21 patients surveyed were at or above HY stage III. The nurses visited each patient nine times per month, on average. The number of visits was positively correlated with HY stage. All stage III patients were homebound, and medication dosage and dispensation assistance were quite common. Several stage IV patients were admitted into nursing homes. In stage V, assistance with hygiene, bedsore management, urine withdrawal/bladder catheters, and other excretory aids were among the most common forms of nursing care provided. As patients’ stages progressed, guidance/educational care meant to encourage self-care decreased and direct physical care increased. Clear differences in nursing care were observed between HY stages, suggesting that stage-based protocols regarding the nature and frequency of nursing visits may be useful for ensuring consistent, effective care of patients with PD.
... Even such a small thing as addressing patients and spouses by their first names will create rapport and build feelings of recognition and trust. This finding is also confirmed by Axelrod et al. (2010), who describes the PD specialist nurse practice as an empathetic and patient-centred practice that is highly valued by patients and spouses. ...
... The interviewees in this study wanted continuous information relevant to each stage of the disease. The role of the PD specialist nurse in providing education, advice and information is well recognized in the literature (Axelrod et al., 2010;MacMahon & Baker, 1999;Reynolds et al., 2000). It is notable that PD specialist nurse consultations have a different focus to consultations with the doctor. ...
... PD specialist nurses collect blood samples and measure blood pressure and help adjust the settings in DB stimulators and medical pumps. This practical role is described in some previous studies (Axelrod et al., 2010;MacMahon & Baker, 1999;Reynolds et al., 2000). ...
Article
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The purpose of the study was to identify the role of the Parkinson's disease specialist nurse in providing support both for people with Parkinson's disease (PD) and their spouses. PD is a neurodegenerative disease with symptoms that affect many aspects of daily life. In Sweden, specialised nurses called Parkinson's disease specialist nurses (PD specialist nurses) have been working for over a decade to support PD patients and their families. A qualitative approach was taken using dyad interviews with each PD patient and spouse. The analysis was conducted using conventional qualitative content analysis. The analysis resulted in the identification of one overarching category; competent, professional practice, tailored for the individual. Four categories: professional competence, nursing practice, continuity of contact and emotional support, are distinct but related to each other and show different nuances of the same phenomenon. The work of PD specialist nurses in providing support to PD patients and their relatives should be tailored to individual patients and their families as well as including skilled nursing care to relieve the impact of the disease on daily life. Copyright © 2015 The Authors. Published by Elsevier Inc. All rights reserved.
... The PNS provides assistance with ongoing management and follow-up by providing medication review, clinical leadership, help with postdiagnostic counseling, guidance to other services, education about PD, support, and advice for PwP, their caregivers and other involving staff (Axelrod et al., 2010). Many PNSs run their own clinics, organize PD helplines, make home visits, refer to other experts and co-ordinate care packages according to patients' needs. ...
... Many PNSs run their own clinics, organize PD helplines, make home visits, refer to other experts and co-ordinate care packages according to patients' needs. PNSs are often the first point of contact for PwP, ensuring fast access to specialist care, whilst relieving some of the pressure from neurologists/ geriatricians with a special interest in PD, who are in short supply (Axelrod et al., 2010). The National Institute for Health and Care Excellence (NICE) guidance (Rogers, Davies, Pink, & Cooper, 2017) recommends that PwP should have regular access to: • Clinical monitoring and medication adjustment. ...
Chapter
The Coronavirus Disease 2019 (Covid-19) pandemic has created many challenges for the Parkinson's Disease (PD) care service delivery, which has been established over the past decades. The need for rapid adjustments to the new conditions has highlighted the role of technology, which can act as an enabler both in patient-facing aspects of care, such as clinical consultations, as well as in professional development and training. The Parkinson's Disease Nurse Specialists (PNSs) play a vital role in the effective management of people with PD (PwP). Maintaining optimum functionality and availability of device aided therapies is essential in order to ensure patients’ quality of life. PwP are particularly recommended to use vaccination as a basic protection from the virus. The long-term consequences of this pandemic on PwP are highly uncertain, and education, support and reassurance of patients and their families may help ease their burden.
... It is clear that PDNS can perform many roles, but there is a wide interpretation about their functions between countries and between local institutions. Table 2 Summary of possible roles for PDNS Nursing role -Information and education [2,8,9,[12][13][14][21][22][23][24][25] -Management of symptoms and medication [3, 9, 12-14, 21, 22, 24, 25] -Support/advice to patients and caregivers [12-15, 24, 26, 27] -Prevention (for example: screening to prevent crisis) [8,12,14,15,22, 24] -Care coordination/case management [3, 9, 12-15, 22, 24, 25] -Multidisciplinary collaboration [12-14, 22, 24, 25, 28] -Palliative care [15,29,30] -Support with advanced therapies (deep brain stimulation, apomorphine and carbidopa-levodopa enteral suspension infusion therapies) [31][32][33][34] The Guideline Development Group defined primary tasks for the PDNS which can be seen as minimum standard care for patients with PD and their caregivers. PDNS should at least: -provide information and education; -support patient and caregiver in selfmanagement; -screen and offer prevention; -support patient and caregivers on psychosocialand existential domains; -work in a multidisciplinary collaboration; -perform specific nursing-technical intervention. ...
... It is clear that PDNS can perform many roles, but there is a wide interpretation about their functions between countries and between local institutions. Table 2 Summary of possible roles for PDNS Nursing role -Information and education [2,8,9,[12][13][14][21][22][23][24][25] -Management of symptoms and medication [3, 9, 12-14, 21, 22, 24, 25] -Support/advice to patients and caregivers [12-15, 24, 26, 27] -Prevention (for example: screening to prevent crisis) [8,12,14,15,22, 24] -Care coordination/case management [3, 9, 12-15, 22, 24, 25] -Multidisciplinary collaboration [12-14, 22, 24, 25, 28] -Palliative care [15,29,30] -Support with advanced therapies (deep brain stimulation, apomorphine and carbidopa-levodopa enteral suspension infusion therapies) [31][32][33][34] The Guideline Development Group defined primary tasks for the PDNS which can be seen as minimum standard care for patients with PD and their caregivers. PDNS should at least: -provide information and education; -support patient and caregiver in selfmanagement; -screen and offer prevention; -support patient and caregivers on psychosocialand existential domains; -work in a multidisciplinary collaboration; -perform specific nursing-technical intervention. ...
Article
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Background: Parkinson's Disease Nurse Specialists (PDNS) play an important role in the care for patients with Parkinson's disease (PD) and their caregivers. Until now, there were no nursing guidelines in PD, and interventions were based solely on daily clinical practice because there is no evidence to support the merits of nursing interventions. Consequently, there is little uniformity in current care delivery. Objective: Developing a guideline for PDNS. Methods: We developed a guideline based on a questionnaire among PDNS and a literature review, supplemented with expert opinion plus the input of patients and caregivers. The questionnaire was filled in by 97 PDNS and 51 generic nurses with knowledge of PD to identify barriers in PD nursing care. Subsequently, we did a systematic literature search and transformed these sources of information into practice recommendations, which were developed according to international standards for guideline development. Results: Based on the results of the questionnaire we identified seven specific core areas: defining the role of PDNS in terms of caseload, education, competences and care coordination; medication adherence; provision of information and education; coping; caregiver support; urogenital function; and orthostatic hypotension. The systematic literature search identified 186 studies, of which 33 studies were finally analyzed. Furthermore, we developed practice recommendations based on good clinical practice for the following areas: self-care, mental functioning, mobility, nutrition, sexuality, work, sleep, palliative care and complementary (integrative) care. Conclusion: These guidelines provide ground to harmonize care delivery by PDNS in clinical practice, and offer a foundation for future research.
... Community nurses also have an important role in monitoring and administering on-going drug therapy, such as monitoring skin health and apomorphine therapy at home. In addition, they help reduce the workload of neurologists and geriatricians who are in short supply not only in developing countries like Thailand, but also in many developed countries, such as England [21,22]. ...
... A longer study documented high patient and stakeholder satisfaction with nurseled Parkinson's services, which helped patients understand their care plans and achieve patient self-management, when measured at a 2-year follow-up [26]. However, the high workload of PDNSs has been highlighted as a major constraint on the implementation of outreach services and national guidelines, at least in England and Australia [21,26]. ...
Article
Optimal care of Parkinson's disease (PD) patients should involve a multidisciplinary team (MDT) of which a PD nurse specialist (PDNS) is a key member. The role of a PDNS is particularly prominent in the care of advanced PD patients suitable for apomorphine because, in addition to nursing skills, apomorphine treatment requires liaison, training, interaction and coordination with patients, caregivers and other members of the MDT as well as the interface with primary care physicians. The therapeutic success of apomorphine therapy depends not only upon the pharmacologic drug response, but also on how well the patient understands his/her disease and how to handle the therapy. In this respect, a PDNS is a vital member of the MDT who provides education and training, support, and is available for consultation when problems arise. In this article, we review the literature on the contribution of PDNSs in both continuous subcutaneous apomorphine infusion and intermittent subcutaneous apomorphine injection and highlight the various beneficial aspects of PDNS care, supported by scientific evidence when available. Despite a low level of published evidence, there is strong clinical evidence that the impact of PDNSs on the management of apomorphine therapy is vital and indispensable for the success of this treatment.
... This is consistent with results from international studies on nurse-led PD Services based in larger units, which have also reported high levels of patient satisfaction with PNS-led care. 10,11,34 Responses from the patient questionnaires indicated that the service had achieved one of its primary objectives, namely, to improve patient care and self-management. Although no direct measures were undertaken to quantify quality of life and reduced caregiver burden, these were likely to have been affected by 2 factors. ...
... Parkinson's disease nurse specialist services within the United Kingdom have also experienced similar problems of high work demands and limited resources, with resulting challenges in providing care to an increasing patient population. 34 It may be necessary to consider splitting the PNS role, with 1 PNS to remain with the Chronic Care Program and a second to assist the Department of Neurology to provide much-needed complex therapy and acute care support. ...
Article
Objective: A nurse-led Parkinson's service was introduced at Canberra Hospital and Health Services in 2012 with the primary objective of improving the care and self-management of people with a diagnosis of Parkinson's disease (PD) and related movement disorders. Other objectives of the Service included improving the quality of life of patients with PD and reducing their caregiver burden, improving the knowledge and understanding of PD among healthcare professionals, and reducing unnecessary hospital admissions. This article evaluates the first 2 years of this Service. Methods: The Context, Input, Process, and Product Evaluation Model was used to evaluate the Parkinson's and Movement Disorder Service. Context: The context evaluation was conducted through discussions with stakeholders, review of PD guidelines and care pathways, and assessment of service gaps. Input: The input evaluation was carried out by reviewing the resources and strategies used in the development of the Service. Process: The process evaluation was undertaken by reviewing the areas of the implementation that went well and identifying issues and ongoing gaps in service provision. Product: Finally, product evaluation was undertaken by conducting stakeholder interviews and surveying patients in order to assess their knowledge and perception of value, and the patient experience of the Service. Admission data before and after implementation of the Parkinson's and Movement Disorder Service were also compared for any notable trends. Results: Context: Several gaps in service provision for patients with PD in the Australian Capital Territory were identified, prompting the development of a PD Service to address some of them. Input: Funding for a Parkinson's disease nurse specialist was made available, and existing resources were used to develop clinics, education sessions, and outreach services. Process: Clinics and education sessions were implemented successfully, with positive feedback from patients and healthcare professionals. However, outreach services were limited because of capacity constraints on the Parkinson's disease nurse specialist. Product: The Service has filled an important health need in the local context; 98.3% of patients surveyed reported that the Service met their needs and helped them understand their care plan, achieving the primary objective of improving patient self-management. Interviews with stakeholders provided positive feedback about the value and usefulness of the Service, and healthcare professionals reported improvement in their knowledge about PD management. The evaluation also identified ongoing gaps in service provision and highlighted areas for potential improvement. No discernible trends in admission rates before and after the implementation of the Service were identified. Conclusion: The introduction of a nurse-led PD service has had a positive impact on the provision of care for patients with PD and is a valued service. The evaluation highlighted some ongoing gaps in service provision and has generated some recommendations to address these.
... Yet, recent surveys and reports have raised concerns about gaps in provision and rising caseloads for PDNSs. NICE guidance recommends a caseload of 300 patients per PDNS [68], yet over 80% of respondents to a national questionnaire-based study reported caseloads exceeding this, with a mean and median reported caseload of 526 and 490, respectively [69]. A similar survey in 2011 revealed that 19% of PDNSs have caseloads of over 700 patients [70]. ...
Article
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Extended nursing roles have existed since the 1940s. The first specialist nurse for Parkinson’s disease, a complex neurodegenerative disease, was appointed in the United Kingdom (UK) in 1989. A review was undertaken using MEDLINE and Cumulative Index to the Nursing and Allied Health Literature (CINAHL), relating to the role and evidence for Parkinson’s disease nurse specialists (PDNSs). PDNSs fulfil many roles. Trials of their effectiveness have failed to show a positive benefit on health outcomes, but their input appears to improve the wellbeing of people with Parkinson’s. Now embedded in the UK Parkinson’s multidisciplinary team, this care model has since been adopted widely, including successful dissemination of training to countries in Sub-Saharan Africa. The lack of evidence to support the benefit of PDNSs may reflect an insufficient duration and intensity of the intervention, the outcome measures selected or the need to combine PDNS input with other evidence-based interventions. Whilst the current evidence base for their effectiveness is limited, their input appears to improve subjective patient wellbeing and they are considered a vital resource in management. Better evidence in the future will support the development of these roles and may facilitate the application of specialist nurses to other disease areas.
... 5 No differences have been found between the two job roles in terms of health outcomes for PwP, although Reynolds et al 5 recognised the benefit of the two professions collaborating. In 2006, Eighty-nine PNSs were surveyed to examine job specification, perceptions of service delivery and views about assistance 12 : 80.9% of respondents had completed specialist training, 32.6% were prescribers and 60.7% had been in post for more than 5 years. The major barriers to service delivery were lack of time, lack of clerical help and heavy caseload. ...
Article
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Introduction There are multiple configurations of specialist nurses working in the field of Parkinson’s. Parkinson’s Nurse Specialists (PNSs) are recognised as playing a pivotal role; however, there is little published evidence to demonstrate their effectiveness. Further evidence is needed to establish which aspects of the PNSs provide the greatest benefit to people with Parkinson’s and their families, and the cost-effectiveness of different models of care. Methods and analysis Realist approaches explain how and why programmes work (or not) through striving to answer the question: what works, for whom and under what circumstances. This research uses a realist evaluation and aims to integrate an economic analysis within the realist framework. We refer to this as ‘realist economic evaluation’. It comprises four phases: (1) developing resource-sensitive initial programme theories (IPTs) using surveys to gain a better understanding of the role and impact (costs and benefits) of the PNSs; (2) testing the IPTs through qualitative interviews and quantitative data analysis; (3) evaluating the cost and resource use implications alongside the benefits associated with the role of the PNSs and (4) iteratively refining the IPTs throughout the project. The IPTs will draw on both quantitative and qualitative data. The result of the study will be a series of refined programme theories, which will explain how specialist nurses work in the field of Parkinson’s in the UK, what impact they have on people with Parkinson’s and their families and carers, and at what cost. Ethics and dissemination Northumbria University, the Health Research Authority and Health and Care Research Wales have approved this study. Key findings will be disseminated throughout the duration of the project online and through social media, and via annual and regional Parkinson’s meetings and the Parkinson’s UK Excellence Network. Academic dissemination will occur through publication and conference presentations.
... As in other countries, counseling and education, information on medication management, educational advertising on PD and training of other professionals are at the center of German PD nurses [29]. German PD nurses also stated that they have not enough time for appropriate care and nursing, just like PD nurses have mentioned in the UK (16). PD nurses have a more extensive caseload than the suggested manageable number of 300 patients [15] and therefore need to be substantially supported. ...
Article
Full-text available
Access to specialized care is essential for people with Parkinson´s disease (PD). Given the growing number of people with PD and the lack of general practitioners and neurologists, particularly in rural areas in Germany, specialized PD staff (PDS), such as PD nurse specialists and Parkinson Assistants (PASS), will play an increasingly important role in the care of people with PD over the coming years. PDS have several tasks, such as having a role as an educator or adviser for other health professionals or an advocate for people with PD to represent and justify their needs. PD nurse specialists have been established for a long time in the Netherlands, England, the USA, and Scandinavia. In contrast, in Germany, distinct PDS models and projects have been established. However, these projects and models show substantial heterogeneity in terms of access requirements, education, theoretical and practical skills, principal workplace (inpatient vs. outpatient), and reimbursement. This review provides an overview of the existing forms and regional models for PDS in Germany. PDS reimbursement concepts must be established that will foster an implementation throughout Germany. Additionally, development of professional roles in nursing and more specialized care in Germany is needed.
... Differences were minimal; the results reported by the 2 healthcare professionals in terms of H&Y stage and UPDRS-IV and UPDRS-III scores, and the time taken to complete the assessment, were similar. These findings support the possibility of nurses being responsible for complementary tasks 15,16 to support neurologists, affording them more time for patient care. In other words, the motor examination may be performed by nursing staff both in routine clinical practice and in research projects. ...
Article
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Introduction and objective In clinical practice, assessing patients with Parkinson's disease (PD) is a complex, time-consuming task. Our purpose is to provide a rigorous and objective evaluation of how motor function in PD patients is assessed by neurologists specialising in movement disorders, on the one hand, and by nurses specialising in PD management, on the other. Methods We conducted an observational, cross-sectional, single-centre study of 50 patients with PD (52% men; mean age: 64.7 ± 8.7 years) who were assessed between 5 January 2016 and 20 July 2016. A neurologist and a nurse evaluated motor function in the early morning hours using the Unified Parkinson's Disease Rating Scale (UPDRS) parts III and IV and Hoehn & Yahr (H&Y) scale. Tests were administered in the same PD periods (in 48 patients during the “off” time and in 2 patients during the “on” time). Inter-rater variability was estimated with the intraclass correlation coefficient (ICC). Results Forty-nine patients (98%) were classified in the same H&Y stage by both raters. Assessment times were similar for both raters. ICC for UPDRS-IV and UPDRS-III total scores were 0.955 (P < .0001) and 0.954 (P < .0001), respectively. The greatest variability was found for UPDRS-III item 29 (gait; ICC = 0.746; P < .0001) and the lowest, for item 30 (postural stability; ICC = 0.918; P < .0001). Conclusions Motor function assessment of PD patients by a trained nurse is equivalent to that made by an expert neurologist and takes the same time to complete.
... High workloads and a lack of time to meet all patient needs have been reported. 18 Much of the available research evidence relating to selfmanagement comes from conditions, such as diabetes, where objective measures of disease control which may respond to successful self-management are available. In PNCs the expected outcomes of supporting selfmanagement are likely to be harder for professionals to define and measure. ...
Article
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Introduction Supporting self-management among people with long-term conditions is recognised as an important component of healthcare. Progressive neurological conditions (PNCs), for example, Parkinson's disease and multiple sclerosis are associated with problems such as fatigue and cognitive impairment which may make self-management more challenging. Health professionals may need to develop specific skills in order to provide effective self-management support for these patients. The review aims to develop explanatory theories about how health professional-targeted interventions to improve self-management support provision for people with PNCs operate in different circumstances. Methods and analysis A realist synthesis of the evidence is proposed. There are 2 priority questions for the review to address. These relate to the role of a shared concept of self-management support within the healthcare team, and the need to tailor the support provided to the requirements of people with PNCs. Key stakeholders will be involved throughout the process. The initial search strategy uses terms relating to (1) self-management, (2) health professionals and (3) PNCs. Searching, data extraction and synthesis will occur in parallel. Studies will be prioritised for inclusion based on anticipated contribution to generating explanatory theories. Key informant interviews are planned to direct supplementary searches and help further refine the theories developed. Results will be expressed in the form of context–mechanism–outcome configurations. Ethics and dissemination Publication guidelines on realist synthesis will be followed. The results will be published in a peer-reviewed journal and made available to organisations involved in the provision of health professional training.
... Making such a model successful, however, requires an alignment between capacity and resources such as PD nurses and therapists and the level of demand for care in community services. In this context, the processes of workforce planning and training programs need to be designed with current and future shifts toward community services [40,41]. ...
Article
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Background The number of people affected by Parkinson’s disease (PD) is increasing in the United Kingdom driven by population ageing. The treatment of the disease is complex, resource intensive and currently there is no known cure to PD. The National Health Service (NHS), the public organisation delivering healthcare in the UK, is under financial pressures. There is a need to find innovative ways to improve the operational and financial performance of treating PD patients. The use of community services is a new and promising way of providing treatment and care to PD patients at reduced cost than hospital care. The aim of this study is to evaluate the potential operational and financial benefits, which could be achieved through increased integration of community services in the delivery of treatment and care to PD patients in the UK without compromising care quality. MethodsA Discrete Event Simulation model was developed to represent the PD care structure including patients’ pathways, treatment modes, and the mix of resources required to treat PD patients. The model was parametrised with data from a large NHS Trust in the UK and validated using information from the same trust. Four possible scenarios involving increased use of community services were simulated on the model. ResultsShifting more patients with PD from hospital treatment to community services will reduce the number of visits of PD patients to hospitals by about 25% and the number of PD doctors and nurses required to treat these patients by around 32%. Hospital based treatment costs overall should decrease by 26% leading to overall savings of 10% in the total cost of treating PD patients. Conclusions The simulation model was useful in predicting the effects of increased use of community services on the performance of PD care delivery. Treatment policies need to reflect upon and formalise the use of community services and integrate these better in PD care. The advantages of community services need to be effectively shared with PD patients and carers to help inform management choices and care plans.
... The community manager of an outpatient Parkinson clinic is usually a local PD nurse specialist. PD nurse specialists are key practitioners when it comes to the coordination of care, patient education, and emotional support [21]. However, the community manager appointed in our clinic is a marketing and communication expert. ...
Article
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Our health care system faces major threats as the number of people with multiple chronic conditions rises dramatically. To study the use of Online Health Communities (OHCs) as a tool to facilitate high-quality and affordable health care for future generations. OHCs are Internet-based platforms that unite either a group of patients, a group of professionals, or a mixture of both. Members interact using modern communication technologies such as blogs, chats, forums, and wikis. We illustrate the use of OHCs for ParkinsonNet, a professional network for Parkinson disease whose participants-both patients and professionals-use various types of OHCs to deliver patient-centered care. We discuss several potential applications in clinical practice. First, due to rapid advances in medical knowledge, many health professionals lack sufficient expertise to address the complex health care needs of chronic patients. OHCs can be used to share experiences, exchange knowledge, and increase disease-specific expertise. Second, current health care delivery is fragmented, as many patients acquire relationships with multiple professionals and institutions. OHCs can bridge geographical distances and enable interdisciplinary collaboration across institutions and traditional echelons. Third, chronic patients lack adequate tools to self-manage their disease. OHCs can be used to actively engage and empower patients in their health care process and to tailor care to their individual needs. Personal health communities of individual patients offer unique opportunities to store all medical information in one central place, while allowing transparent communication across all members of each patient's health care team. OHCs are a powerful tool to address some of the challenges chronic care faces today. OHCs help to facilitate communication among professionals and patients and support coordination of care across traditional echelons, which does not happen spontaneously in busy practice.
... Capacity constraints in the form of high nurse caseloads and shortages of therapists were identified by NICE as barriers to the delivery of their guidance for management of Parkinson's disease [3], and these have been confirmed by a recent survey of PNS [32]. Whilst NICE recommends a caseload of 300 patients, over half of PNS have lists in excess of 500, with adverse effects on the amount of routine support they can provide to patients. ...
Article
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Parkinson's Disease is a degenerative neurological condition that causes movement problems and other distressing symptoms. People with Parkinson's disease gradually lose their independence and strain is placed on family members. A multidisciplinary approach to rehabilitation for people with Parkinson's is recommended but has not been widely researched. Studies are needed that investigate cost-effective community-based service delivery models to reduce disability and dependency and admission to long term care, and improve quality of life. A pragmatic three parallel group randomised controlled trial involving people with Parkinson's Disease and live-in carers (family friends or paid carers), and comparing: management by a specialist multidisciplinary team for six weeks, according to a care plan agreed between the professionals and the patient and carer (Group A); multidisciplinary team management and additional support for four months from a trained care assistant (Group B); usual care, no coordinated team care planning or ongoing support (Group C). Follow up will be for six months to determine the impact and relative cost-effectiveness of the two interventions, compared to usual care. The primary outcomes are disability (patients) and strain (carers). Secondary outcomes include patient mobility, falls, speech, pain, self efficacy, health and social care use; carer general health; patient and carer social functioning, psychological wellbeing, health related quality of life. Semi structured interviews will be undertaken with providers (team members, care assistants), service commissioners, and patients and carers in groups A and B, to gain feedback about the acceptability of the interventions. A cost - effectiveness evaluation is embedded in the trial. The trial investigates components of recent national policy recommendations for people with long term conditions, and Parkinson's Disease in particular, and will provide guidance to inform local service planning and commissioning. ISRCTN: ISRCTN44577970.
Article
Status and development of the role as Parkinson Nurse in Germany - an online survey Abstract. Background: In Germany there is a course for Parkinson Nurses (PN) since 2006. Content, structure and organization of their tasks have not yet been systematically described for Germany. Aim: How is the typical working day of PN organised in Germany? Which tasks do they have? Which conditions are promoting or inhibiting for their work? Methods: Among the graduates of the course, an online survey was conducted from September to November 2016. 39 questionnaires were analysed descriptively (response rate 34 %). Results: 52 % of PN work in specialist hospitals and 26 % work in hospitals of maximum medical care. Only 29 % work according to a concept and only 23 % have a job description. 21 % of respondents no longer work as PN. Counselling and education, information on medication management, educational advertising on Parkinson' disease as well as training of other professionals are at the centre of their work. The activities usually focus the work in the institution; a trans-sectoral support for people with Parkinson's disease is rare. Conclusions: In the future, concepts and job descriptions should be stored in the institutions, which are oriented towards a cross-institutional orientation framework. On the basis of a common understanding of roles it is possible to facilitate networking of the PN as well as the co-operation with other specialists. The curriculum at an academic level leads to the necessary competencies.
Article
Mental health problems are very common in people with Parkinson's disease, impacting on the quality of life for this population as well as their families. Despite the changes that have occurred within the health care provisions in the way we should care for people with mental health problems, regrettably people with Parkinson's disease are still missing out on a wide range of intervention therapy, such as clinical psychological or psychiatric input. It is therefore entirely critical that we assess, manage and optimise treatment strategies that are available in improving the quality of life of people with Parkinson's disease with mental health problems. In this article, the author undertook an audit of a Parkinson's service at the Queen Elizabeth Hospital, Woolwich, London and discusses the results.
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Introduction The National Health Service currently faces significant challenges and must optimise effective workforce planning and management. There are increasing concerns regarding poor workforce planning for respiratory medicine; a greater understanding of the role of respiratory nurse specialists will inform better workforce planning and management. Methods This was a survey study. Two surveys were administered: an organisational-level survey and an individual respiratory nurse survey. Results There were 148 and 457 respondents to the organisational and individual nurse survey, respectively. Four main themes are presented: (1) breadth of service provided; (2) patient care; (3) work environment; and (4) succession planning. The majority of work conducted by respiratory nurse specialists relates to patient care outside the secondary care setting including supporting self-management in the home, supporting patients on home oxygen, providing hospital-at-home services and facilitating early discharge from acute care environments. Yet, most respiratory nursing teams are employed by secondary care trusts and located within acute environments. There was evidence of multidisciplinary working, although integrated care was not prominent in the free-text responses. High workload was reported with one-quarter of nursing teams short-staffed. Respiratory nurses reported working unpaid extra hours and a lack of administrative support that often took them away from providing direct patient care. Nearly half of the present sample either plan to retire or are eligible for retirement within 10 years. Conclusions This survey report provides a current snapshot of the respiratory nurse specialist workforce in the UK. This workforce is an ageing population; the results from this survey can be used to inform succession planning and to ensure a viable respiratory nurse specialist workforce in future.
Article
Background: Within contemporary medical practice, Parkinson's disease (PD) is treated using a biomedical, neurological approach, which although bringing numerous benefits can struggle to engage with how people with PD experience the disease. A bio-psycho-social approach has not yet been established in PD; however, bio-psycho-social approaches adopted within dementia care practice could bring significant benefit to PD care. Methods: This paper summarises existing bio-psycho-social models of dementia care and explores how these models could also usefully be applied to care for PD. Specifically, this paper adapts the bio-psycho-social model for dementia developed by Spector and Orrell (), to suggest a bio-psycho-social model, which could be used to inform routine care in PD. Results: Drawing on the biopsychosocial model of Dementia put forward by Spector and Orrell (), this paper explores the application of a bio-psycho-social model of PD. This model conceptualises PD as a trajectory, in which several interrelated fixed and tractable factors influence both PD's symptomology and the various biological and psychosocial challenges individuals will face as their disease progresses. Using an individual case study, this paper then illustrates how such a model can assist clinicians in identifying suitable interventions for people living with PD. Conclusion: This model concludes by discussing how a bio-psycho-social model could be used as a tool in PD's routine care. The model also encourages the development of a theoretical and practical framework for the future development of the role of the PD specialist nurse within routine practice. Implications for practice: A biopsychosocial approach to Parkinson's Disease provides an opportunity to move towards a holistic model of care practice which addresses a wider range of factors affecting people living with PD. The paper puts forward a framework through which PD care practice can move towards a biopsychosocial perspective. PD specialist nurses are particularly well placed to adopt such a model within routine clinical practice, and should therefore be encouraged within PD services.
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Introduction and objective: In clinical practice, assessing patients with Parkinson's disease (PD) is a complex, time-consuming task. Our purpose is to provide a rigorous and objective evaluation of how motor function in PD patients is assessed by neurologists specialising in movement disorders, on the one hand, and by nurses specialising in PD management, on the other. Methods: We conducted an observational, cross-sectional, single-centre study of 50 patients with PD (52% men; mean age: 64.7 ± 8.7 years) who were assessed between 5 January 2016 and 20 July 2016. A neurologist and a nurse evaluated motor function in the early morning hours using the Unified Parkinson's Disease Rating Scale (UPDRS) parts III and IV and Hoehn & Yahr (H&Y) scale. Tests were administered in the same PD periods (in 48 patients during the 'off' time and in 2 patients during the 'on' time). Inter-rater variability was estimated with the intraclass correlation coefficient (ICC). Results: Forty-nine patients (98%) were classified in the same H&Y stage by both raters. Assessment times were similar for both raters. ICC for UPDRS-IV and UPDRS-III total scores were 0.955 (P<.0001) and 0.954 (P<.0001), respectively. The greatest variability was found for UPDRS-III item 29 (gait; ICC=0.746; P<.0001) and the lowest, for item 30 (postural stability; ICC=0.918; P<.0001). Conclusions: Motor function assessment of PD patients by a trained nurse is equivalent to that made by an expert neurologist and takes the same time to complete.
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Parkinson's disease (PD) is now known to be a multisystemic and multipeptide neurodegenerative disorder, whereby patients have an array of symptoms both motor and nonmotor. Nonmotor features of PD have been shown to arise almost 15–20 years prior to motor symptoms and, as such, are also a key determinant to the quality of life of a patient. Therefore, there is increasing evidence that a PD patient's management must encompass a multidisciplinary approach to effectively manage and treat the patient's PD and also their individual symptoms. Therefore, the notion that a PD nurse specialist and a neurologist are the only key players, is no longer the case. Rather, the involvement of speech and language therapist, physiotherapists, palliative care, and others is vital for a patient's recovery and their effective management. Here we discuss a few professions who should ideally be present for each PD patient.
Article
Aim Parkinson's disease (PD) is a neurodegenerative disease, most usually associated with motor problems, although psychological difficulties are also commonly experienced. In the UK, Parkinson's disease nurse specialists (PDNSs) are often the key health professionals involved in the management of PD, with regards to both the motor and psychological aspects of the disease. This qualitative study sought to investigate the experiences of PDNSs in recognising and managing psychological difficulties in people with PD. Design Five female participants—four PDNSs and one neurology nurse specialising in PD—from the north west of England took part in the study. Participants were all female and had been in their roles for between 2.5 and 14 years. The study used a qualitative methodology aimed at providing a detailed account and analysis. Method Individual semi-structured interviews were conducted and subsequently analysed using thematic analysis. Results Five overarching themes were developed summarising participants' experiences. These included understanding the causes of psychological difficulties; accessing psychological support; the recognition and management of psychological difficulties; the improvement of psychological care and the personal resilience of the nurse specialists. Conclusions The specialist nurses were closely involved in the assessment and support of anxiety and depression of people with PD but concerns were expressed that there were limited resources for further help and management.
Article
Multidisciplinary rehabilitation is recommended for Parkinson’s disease, but evidence suggests that benefit is not sustained. Objectives (1) Implement a specialist domiciliary rehabilitation service for people with Parkinson’s and carers. (2) Provide continuing support from trained care assistants to half receiving the rehabilitation. (3) Evaluate the clinical effectiveness of the service, and the value added by the care assistants, compared with usual care. (4) Assess the costs of the interventions. (5) Investigate the acceptability of the service. (6) Deliver guidance for commissioners. Design Pragmatic three-parallel group randomised controlled trial. Setting Community, county of Surrey, England, 2010–11. Participants People with Parkinson’s, at all stages of the disease, and live-in carers. Interventions Groups A and B received specialist rehabilitation from a multidisciplinary team (MDT) – comprising Parkinson’s nurse specialists, physiotherapists, occupational therapists, and speech and language therapists – delivered at home, tailored to individual needs, over 6 weeks (about 9 hours’ individual therapy per patient). In addition to the MDT, participants in group B received ongoing support for a further 4 months from a care assistant trained in Parkinson’s (PCA), embedded in the MDT (1 hour per week per patient). Participants in control group (C) received care as usual (no co-ordinated MDT or ongoing support). Main outcome measures Follow-up assessments were conducted in participants’ homes at 6, 24 and 36 weeks after baseline. Primary outcomes: Self-Assessment Parkinson’s Disease Disability Scale (patients); the Modified Caregiver Strain Index (carers). Secondary outcomes included: for patients, disease-specific and generic health-related quality of life, psychological well-being, self-efficacy, mobility, falls and speech; for carers, strain, stress, health-related quality of life, psychological well-being and functioning. Results A total of 306 people with Parkinson’s (and 182 live-in carers) were randomised [group A, n = 102 ( n = 61); group B, n = 101 ( n = 60); group C, n = 103 ( n = 61)], of whom 269 (155) were analysed at baseline, pilot cohort excluded. Attrition occurred at all stages. A per-protocol analysis [people with Parkinson’s, n = 227 (live-in carers, n = 125)] [group A, n = 75 ( n = 45); group B, n = 69 ( n = 37); group C, n = 83 ( n = 43)] showed that, at the end of the MDT intervention, people with Parkinson’s in groups A and B, compared with group C, had reduced anxiety ( p = 0.02); their carers had improved psychological well-being ( p = 0.02). People with Parkinson’s in groups A and B also had marginally reduced disability (primary outcome, p = 0.09), and improved non-motor symptoms ( p = 0.06) and health-related quality of life ( p = 0.07), compared with C. There were significant differences in change scores between week 6 (end of MDT) and week 24 (end of PCA for group B) in favour of group B, owing to worsening in group A (no PCA support) in posture ( p = 0.001); non-motor symptoms ( p = 0.05); health-related quality of life ( p = 0.07); and self-efficacy ( p = 0.09). Carers in group B (vs. group A) reported a tendency for reduced strain ( p = 0.06). At 36 weeks post recruitment, 3 months after the end of PCA support for group B, there were few differences between the groups. Participants reported learning about Parkinson’s, and valued individual attention. The MDT cost £833; PCA support was £600 extra, per patient (2011 Great British pounds). Conclusions Further research is needed into ways of sustaining benefits from rehabilitation including the use of care assistants. Study registration Current Controlled Trials: ISRCTN44577970. Funding This project was funded by the National Institute for Health Research Health Services and Delivery Research programme and the South East Coast Dementias and Neurodegenerative Disease Research Network (DeNDRoN), and the NHS South East Coast. The report will be published in full in Health Services and Delivery Research ; Vol. 2, No. 51. See the NIHR Journals Library website for further project information.
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Background: Parkinson Net, a nationwide organization with regionally oriented professional health networks in TheNetherlands, aims to improve the quality of Parkinson care. Facilitation of multidisciplinary collaboration is a key objective of Parkinson Net. Objectives: This study examined whether the concept enhances multidisciplinary collaboration between healthcare professionals involved in Parkinson care. Methods: A regional network involving 101 healthcare professionals was newly established. Participants received two questionnaires. One aimed at documenting direct working relationships ('connections') between professionals and the other aimed at evaluating multidisciplinary team performance. Additionally, thirteen healthcare professionals were interviewed to identify barriers and facilitators for multidisciplinary collaboration. 'Social network analysis' focused on sub-networks around three community hospitals at baseline and one year after the implementation. Results: The number of 'knowing each other' connections increased from 1431 to 2175 (52% , p < 0.001) and 'professional contact' connections increased from 664 to 891 (34% , p < 0.001). Large differences between sub-networks were found, positive changes being associated with a central role of neurologists and nurse specialists committed to multidisciplinary care. The perceived team performance did not change. Participants experienced problems with information exchange and interdisciplinary communication. Generally, participants were unaware of other healthcare professionals involved in individual patients and what treatments they provide simultaneously. Conclusions: Parkinson Net partially enhanced multidisciplinary collaboration between healthcare professionals involved in Parkinson care. Crucial facilitators of this were a central role of nurse specialists and the commitment to collaborate with and refer to expert therapists among neurologists. Additional measures are needed to further improve multidisciplinary care across different institutions and around individual patients.
Article
Care for people with Parkinson's admitted to hospital is often suboptimal and services for these patients vary. We conducted a national survey to document current service provision in the UK and to explore clinicians' views on standards of care and potential service improvements. We used the mailing lists of British Geriatric Society Movement Disorder Section (BGS-MDS), British and Irish Neurologists' Movement Disorders Group (BRING-MD), and Parkinson's Disease Nurse Specialists Association (PDNSA) and invited participation by email with a link to an online survey (www.surveymonkey.com). The survey was posted in spring 2014 for six weeks. There were 93 respondents from at least 65 different hospitals. The estimated response rate was 19%. Respondents were: 35 consultant geriatricians; 21 consultant neurologists, 29 Parkinson's Disease Nurse Specialists (PDNS), 8 others. 81% respondents report their hospital has a PDNS. 79% have a geriatrician with an interest in Parkinson's. 54% have a Parkinson's clinical guideline, 16% a cohort/specialist ward for Parkinson's and 11% an electronic system for flagging Parkinson's admissions. 21% rated overall standard of care as poor. 61% were not confident that medications were given on time. Having a PDNS see all Parkinson's in-patients, flagging of Parkinson's admissions and having a Parkinson's outreach service were ranked most likely of 16 potential service developments to improve care. Care for Parkinson's in-patients is not highly rated by UK Parkinson's clinicians. Interventions to improve care need to be studied but wide variations in current service provision pose a challenge for future study design. Copyright © 2015 Elsevier Ltd. All rights reserved.
Article
hopkins j. & Irvine F. (2012) Qualitative insights into the role and practice of Epilepsy Specialist Nurses in England: a focus group study. Journal of Advanced Nursing68(11), 2443–2453. doi: 10.1111/j.1365-2648.2012.05941.x Aim. This article is a report of a study that aimed to explore Epilepsy Specialist Nurses’ perceptions of their professional role and the factors that may affect their practice. Background. Previous studies have demonstrated high patient satisfaction with the Epilepsy Specialist Nurse. Although UK national guidelines recommend that all individuals with epilepsy should have access to an epilepsy specialist nurse, many National Health Service trusts disregard these guidelines. The need to introduce cost efficiencies in the National Health Service means that the future of some epilepsy specialist nurses is threatened. Design. A qualitative study using focus groups was designed to elicit a rich understanding of the epilepsy specialist nurse role and its current challenges. Methods. Three focus groups were held with a total of 19 participants in the summer of 2009. Data were subjected to thematic framework analysis. Findings. The work was underpinned by high commitment to nursing values, which helped to define the role. Epilepsy specialist nurses were often the sole providers of expert and personalized care to meet patients’ complex needs. Policy and financially driven changes undermined professional identity and led to service diminution. Conclusion. The provision of epilepsy care in England remains variable and access to epilepsy specialist nurses is inequitable. Trusts are being seduced by the cost savings of reducing a specialist service but consequent gaps in service may drive up costs elsewhere. The challenge is for epilepsy specialist nurses to demonstrate their unique place in enhancing patient care and in improving health and well-being.
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The 1997 European Parkinson's Disease Association's (EPDA) Charter for People with Parkinson's disease (PD) outlines their rights in terms of standards of care. It states that all patients have the right to: be referred to a doctor with a special interest in PD; receive an accurate diagnosis; have access to support services; receive continuous care; and take part in managing their illness. Move for Change is a three-part series of pan-European patient surveys based on this Charter. This first survey, consisting of 23 questions, focusing on the initial two points of the Charter, was administered online through the EPDA and affiliated patient associations' Web sites. Of 2149 forms received from 35 European countries, 2068 (96.2%) were analyzed, with the remainder excluded, mainly due to incomplete responses. The majority of patients were diagnosed within 2 years from the onset of first symptoms (82.7%; range, <1 year to ≥5 years). In relation to diagnosis delivery, 45.3% of patients stated that it was 'poor' or 'very poor'. During the 2 years following diagnosis, 43.8% of respondents had never seen a PD specialist. Care was usually overseen by generically active neurologists (92.5%) or family doctors (81.0%), with considerable overlap between the two.   These data highlight challenges that patients with PD face during the period of diagnosis, despite introduction of the Charter. These findings can assist healthcare professionals and policy makers in improving the level of care for patients and their families across Europe, and we offer suggestions about how this can be achieved.
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Purpose To examine the introduction of role‐redesign in the NHS and highlight implications for employment relations. Design/methodology/approach A 12‐month independent evaluation (2003‐2004) of a role redesign initiative in the NHS is reported. The study followed a developmental, case‐study design and included secondary data analysis, semi‐structured interviews and observations at five case‐study sites. Findings The role redesign process involved four types of change to job content: skill‐mix changes; job widening; job deepening; and development of new roles. Each of these changes had implications for employment relations in terms of remuneration, management and accountability, and education and training. Research limitations/implications The research involves one initiative in the NHS and was evaluating a developing programme. Whilst implications are suggested for efforts at role redesign generally the research specifically relates to NHS organisations. Practical implications Three aspects of employment relations are identified as important when attempting role redesign: remuneration, management and accountability, and education and training. Originality/value This paper offers the first account of this national NHS role redesign initiative.
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To determine the effects of community based nurses specialising in Parkinson's disease on health outcomes and healthcare costs. Two year randomised controlled trial. 438 general practices in nine randomly selected health authority areas of England. 1859 patients with Parkinson's disease identified by the participating general practices. Survival, stand-up test, dot in square test, bone fracture, global health question, PDQ-39, Euroqol, and healthcare costs. After two years 315 (17.3%) patients had died, although mortality did not differ between those who were attended by nurse specialists and those receiving standard care from their general practitioner (hazard ratio for nurse group v control group 0.91, 95% confidence interval 0.73 to 1.13). No significant differences were found between the two groups for the stand-up test (odds ratio 1.15, 0.93 to 1.42) and dot in square score (difference -0.7, -3.25 to 1.84). Scores on the global health question were significantly better in patients attended by nurse specialists than in controls (difference -0.23, -0.4 to -0.06), but no difference was observed in the results of the PDQ-39 or Euroqol questionnaires. Direct costs for patient health care increased by an average of 2658 pounds sterling during the study, although not differentially between groups: the average increase was 266 pounds sterling lower among patients attended by a nurse specialist (-981 pounds sterling to 449 pounds sterling ). Nurse specialists in Parkinson's disease had little effect on the clinical condition of patients, but they did improve their patients' sense of wellbeing, with no increase in patients' healthcare costs.
Article
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The purpose of this paper is to discuss and critique the literature related to the measurement of caseloads by sociomedical case managers in the context of community care for frail older people. As a result of reduced mortality rates, there is an ageing, chronically ill population in need of long-term continuity of care. Case management is a model of care designed to maintain the quality of life of frail older people living in the community whilst constraining the associated costs of care. A review of the literature was undertaken to examine methods of determining caseloads for frail older people in the community setting to identify where investigations are absent or not robust. An absence of empirically tested approaches to determining caseloads and the wide variability in caseloads in caring for frail older people was evident. Predictors of variations in case management resources have been described at both the programme and client level, although controversy about the validity of these predictors, such as age and functional status, has been reported. The ageing population is a vulnerable group, and is entitled to live out their lives in the comfort and familiarity of their own homes where possible. Coordinated and supportive healthcare organizations and health system policies are critical to support empirically tested caseload indexes. These findings have implications for quality of care, planning and workforce policy development for our increasingly aged society. Recommendations for further research conclude this paper.
Article
Throughout the NHS, the traditional boundaries between professional groups are breaking down to promote more flexible ways of working to deliver patient-centred care. Registered nurses (RNs) have responded to changing care demands through the development of innovative roles and extended roles and responsibilities. However, there are increasing numbers of healthcare assistants (HCAs) being employed by the National Health Service (NHS) in the UK to support RNs in providing nursing care. To date, little is known about the make-up of the health care assistant workforce and the changing nature of their role. This paper reports the findings of a single case study using mixed methods (survey, interviews, participant observations, focus groups and documentary analysis) to generate an in-depth account of HCAs' work in one UK hospital setting. The study is built upon what HCAs say they do, compared with what they actually do in practice and RNs’ perceptions of the HCA role. It explores how and whether the work of HCAs is adequately supervised, tensions between the work of HCAs and RNs and the subsequent effects on teamwork and patient care. There are policy expectations associated with the work of HCAs. However, this study reveals significant deviations from these goals. The workplace arena, and the informal negotiations between HCAs and RNs that take place within it, actively shape the HCAs’ work. The changing roles of RNs have direct implications for the roles of HCAs: as RNs take on extra duties and responsibilities they are conceding some of their roles to HCAs. An important element of the RNs’ role must now be to consider how HCAs can best be deployed, to assess their competence for carrying out nursing work, and to monitor and supervise their work so as to maximise, and further develop, the HCAs’ contribution to patient care and to ensure quality standards.
Article
Recent National Health Service (NHS) structural and policy changes have brought with them shifts in the ideals, pace, and physical location of work, with significant consequences for staff. Hospital nurses have experienced increased devolution of managerial responsibility and are under pressure to effect a faster throughput of more acutely ill patients and simultaneously contain service costs. Community nurses have experienced similar pressures, with those providing mental health and learning disability services radically reconceptualising the nature of their work to support non-institutional living (Adams et al. 1998). Nurses' work pressure has been further exacerbated by the removal of student labour due to educational changes (United Kingdom Central Council for nursing, midwifery and health visiting (UKCC) 1986). This has resulted in a lower ratio of qualified to unqualified nurses in the NHS and a static number of qualified nurses compared with a previous upward trend of approximately 4 per cent annually since 1976 (Buchan et al. 1998).
Article
The role of the Health Care Assistant emerged primarily to support the professional nurse and to undertake perceived ‘non-nursing’ duties under the direction and supervision of qualified nurses. Health Care Assistants are employed in a variety of clinical settings and carry out a range of tasks and procedures. While they represent a substantial proportion of the health care workforce, the growth of their role has taken place without regulation, clear boundaries, or systematic education and training. This has raised serious concerns, especially with regard to the issues of patient safety and quality of care. For health professionals, regulations, role clarity and validated education and training are key elements of ensuring the safety of the public. This paper explores these issues with regard to the Health Care Assistant role and finds them wanting.
Article
This paper reviews evaluative studies on the role of clinical nurse specialists and aims to describe and categorise research according to the methods used. By using the structure, process and outcome framework a clear pattern of research development and evidence emerges. It appears that significant benefits accrue for patients from the contribution of nurse specialists, but more experimental studies with combined methods should now be applied to this area.
Article
Case management has come to the forefront of home- and community-based long-term care (LTC) as an attempt to reduce the costs of LTC and the fragmentation of the home- and community-based LTC system. The cost of case management itself, however, must also receive attention. A key variable contributing to the cost of a case management program is the size of the case managers' caseloads; the higher the caseloads, the lower the costs, all other things being equal. However, caseloads that are too high can reduce the quality of care. Thus, a program's recommended caseload is an important factor. This article presents a method for determining a recommended caseload for a home- and community-based LTC program, using a case study. This method can be adapted for use by programs that have a different caseload history from that of the program in the case study.
Article
Does increased use of unlicensed assistive personnel in direct patient care delivery represent an effective solution to dwindling health care resources, or is it an economic-driven, short-term response that could lead to an apocalypse of registered nursing?
Article
An extensive review of published studies where doctors were replaced by other health professions demonstrates considerable scope for alterations in skill mix. However, the studies reported are often dated and have design deficiencies. In health services world-wide there is a policy focus which emphasises the substitution of nurses in particular for doctors. However, this substitution may not be real and increased roles for non-physician personnel may result in service development/enhancement rather than labour substitution. Further study of skill mix changes and whether non-physician personnel are being used as substitutes or complements for doctors is required urgently.
Article
In October 1996, the University of Manchester’s Health Services Management Unit held a seminar Managing Parkinson’s, Making the Difference. The objective of the seminar was to enable professionals, managers, sufferers and carers to reach some conclusions about best organisational and clinical practice for sufferers of Parkinson’s disease. Drawn from that seminar’s proceedings by one of the two nurse articipants, this report describes how nurses specialising in the care of people with the disease can address the seminar’s recommendations
Article
A one year follow up study of 108 randomised patients with Parkinson's disease at three centres was performed to investigate differences between care provided by the hospital based Parkinson's disease nurse specialist (PDNS) compared with the Consultant Neurologist (control). Only two (out of 22) differences were found where physical functioning and general health improved more in the control group. Provision of PDNS' for patients with Parkinson's disease cannot therefore be recommended solely on cost-effectiveness grounds because of similar outcomes but increased costs associated with the PDNS providing additional care. However medical and nursing specialists valued their complimentary expertise, and patient and carers responses to consultations also reflect that PDNS's have particular contributions. Aspects of care most valued by patients and carers and consultation interactions are discussed.
Article
Changing workforce skill-mix is one strategy for improving the effectiveness and efficiency of health care. Our aim was to summarise available research into the success or failure of skill-mix change in achieving planned outcomes. A systematic search for existing reviews of research into skill-mix was conducted. Databases searched included: MEDLINE, CINAHL, PsychINFO, Cochrane Library, HMIC, Centre for Reviews and Dissemination, and Department of Health Research Findings Register. Search terms included keywords defining the type of publication, clinical area, type of health personnel and the focus of the article (role change, skill-mix, etc.). English language publications from 1990 onwards were included. Two reviewers independently identified relevant publications, graded the quality of reviews and extracted findings. In addition, the wider literature was scanned to identify which factors were associated with the success or failure of skill-mix change. A total of 9064 publications were identified, of which 24 met our inclusion criteria. There was a dearth of research, particularly for role changes involving workers other than doctors or nurses. Cost-effectiveness was generally not evaluated, nor was the wider impact of change on health care systems. The wider literature suggested that factors promoting success include: introducing 'treatments' of proven efficacy; appropriate staff education and training; removal of unhelpful boundary demarcations between staff or service sectors; appropriate pay and reward systems; and good strategic planning and human resource management. Unintended consequences sometimes occurred in respect of: staff morale and workload; coordination of care; continuity of care; and cost. In order to make informed choices, health care planners need good research evidence about the likely consequences of skill-mix change. The findings from existing research need to be made more accessible while the dearth of evidence makes new research necessary.
Article
This paper reports a study whose aim was to identify and synthesize qualitative research studies reporting barriers or facilitators to role development and/or effective practice in specialist and advanced nursing roles in acute hospital settings. The number of clinical nurse specialist, nurse practitioner, advanced nurse practitioner and consultant nurse roles has grown substantially in recent years. Research has shown that nurses working in innovative roles encounter a range of barriers and facilitators to effective practice. Systematic literature searches were undertaken, and relevant studies identified using specific inclusion and exclusion criteria. The selected studies were appraised, and their findings synthesized using Ritchie and Spencer's 'Framework' approach. Fourteen relevant studies were identified, mostly from the UK. They described a range of barriers and facilitators affecting specialist and advanced nursing practice. These related to the practitioner's personal characteristics and previous experience, professional and educational issues, managerial and organizational issues, relationships with other health care professionals, and resources. The factors most widely identified as important were relationships with other key personnel, and role definitions and expectations. Relationships with other staff groups and role ambiguity are the most important factors which hinder or facilitate the implementation of specialist and advanced nursing roles. These factors seem interlinked, and the associated problems do not appear to resolve spontaneously when staff become familiar with the new roles. In order to reduce role ambiguity and the consequent likelihood of negative responses we recommend that, when specialist and advanced nursing roles are introduced, clear role definitions and objectives are developed and communicated to relevant staff groups; these definitions and objectives should be updated as necessary.
Article
STUDY BACKGROUND: Chronic obstructive pulmonary disease (COPD) is the fifth leading cause of mortality worldwide and is a burden on healthcare resources. Therefore, implementing the right care model(s) for patients with COPD is a priority. Nurses, particularly those with specialist roles, are often the principal health professionals involved in new service models. To present the results of the first survey of specialist nurse service provision for patients in the community with COPD in England and Wales. To combine the survey findings with systematic review evidence to explore to what extent provision is supported by evidence of effectiveness. A postal survey of respiratory healthcare professionals undertaken concurrently with a review of the evidence of the effectiveness of nurse COPD services (review findings are reported fully elsewhere). Two hundred and thirty four specialist nurse services were identified; 71% involved chronic disease management, of which 47% also provided acute care. Seventeen per cent of services involved acute care only. The review identified evidence to support the provision of acute services but data on chronic disease management services are sparse and there is currently little evidence to support these services. Those interventions that have been evaluated to date differed from many of the services provided. This study identifies a considerable mismatch between existing evidence around effectiveness and services provision for patients with COPD. It clearly highlights the need for greater interaction between what happens in practice and research. This is an issue that has relevance across all healthcare practice, both nationally and internationally.
Article
To describe actual patient caseload sizes among case managers for long term conditions and explore issues of caseload manageability. Department of Health guidance advises that community matron case managers for long term conditions should manage caseloads of 50-80 patients. However, there is currently no evidence to justify these caseload targets. In-depth interviews were conducted with 46 case managers for long term conditions, five clinical leads and six programme leads across six Primary Care Trusts. Case managers had caseloads of 10-55 patients each, although numbers fluctuated from week to week. The current caseload target was regarded as difficult to manage. Heavy caseloads were perceived to result in a shift from proactive care towards reactive care, decreased quality of care and increased hospital admissions. Case managers for long term conditions are struggling to achieve and maintain caseload targets. Further research is necessary to identify the most appropriate caseload size and provide an evidence base for policy. Programme leads and managers need to carefully assess the local situation, the characteristics of the target population and the practicalities of delivering the model of care before identifying appropriate caseload targets.
National Service Framework for Long Term (Neurological) Conditions. Department of Health Unlicensed assistive personnel: a solution to dwindling health care resources or the precursor to the apocalypse of registered nursing
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Making claims on nursing work
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Spilsbury K & Meyer J (2005) Making claims on nursing work. Journal of Research in Nursing 10, 65–83.
University of Surrey; Patrick Trend, PhD, FRCP, Consultant Neurologist Skill mix changes and work intensification in nursing
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Julie Kaye, RGN, Parkinson's Disease Nurse Specialist (retired), Surrey Primary Care Trust, Department of Neurology, Egerton Road; Karen Bryan, PhD, Professor, Division of Health and Social Care, University of Surrey; Patrick Trend, PhD, FRCP, Consultant Neurologist, Royal Surrey NHS Trust, Department of Neurology, Egerton Road, Guildford; Derick Wade, MD, FRCP, Professor of Neurological Rehabilitation, Oxford Centre for Enablement, Oxford, UK Correspondence: Heather Gage, Reader in Health Economics, Department of Economics, University of Surrey, Guildford, GU2 7XH, Telephone: 01483 686948. E-mail: h.gage@surrey.ac.uk References Adams A, Lugsden E, Chase J, Arber S & Bond S (2000) Skill mix changes and work intensification in nursing. Work, Employment and Society 14, 541–555.
Patient safety and quality of care: the role of the HCA
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Patient safety and quality of care: the role of the HCA
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Skill mix changes and work intensification in nursing
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