The terms ‘nurse-led service’ and ‘nurse-led care’ are often used, but what do we mean by them? Can nurses truly lead services for individuals or is that the remit of medical staff who can investigate, diagnose, prescribe and treat? Historically nurses worked alongside doctors delivering care stipulated by doctors. Florence Nightingale changed that, challenging assumptions about medically ordered care and delivering nursing care, which was both compassionate and collected evidence of outcomes. Nursing has come a long way since then, and many things have changed. Wherever we implement change we do it for the benefit of those patients and families that we care for, to do that as best as we can we need evidence of our abilities and the impact our care has on patient and their families.
It is frequently suggested that the role of nurses will become increasingly important in the future delivery of care for people with haemophilia. Paul Giangrande former vice-president (medical) of the World Federation of Hemophilia and current chairman of the medical advisory board of the European Haemophilia Consortium, is on record as saying: “Nurses are an extremely valuable resource in the care of haemophilia patients and they increasingly take on more responsibilities, including treatment of acute bleeds, organising outpatient review clinics, training parents and children in venepuncture and prophylaxis, and prescribing factor concentrates and other medicines,” [1].
In this paper we address the notion of ‘nurse-led’ care in the 21st century, where we are today and where we are, or could be going.
What do we mean by ‘nurse-led’?
In the absence of a formal definition of ‘nurse-led’, investigators have applied the term to various service models in which nurses have a leadership or supervisory role or practise without direct supervision by another health professional. The differentiating factor is the extent to which nurses practise autonomously (Table 1) [2, 3, 4, 5]. Even within a nation and a single specialty, there may be a range of activities undertaken by nurses, any of which may be considered – perhaps especially locally – to be meet the definition of nurse-led. The characteristics of a nurse-led service have been defined [6] by a set of activities:
Table 1
Models of nurse-led services differentiated by degree of autonomy
| A highly qualified nurse- e.g. an Advanced Nurse Practitioner (ANP) - may lead and be responsible for a service [2] | Problems faced by a transitional care intervention for cognitively impaired older adults and their caregivers lead by ANPs |
| Nurses may be part of a nurse- led service and practise under the leadership of a highly qualified nurse or have service-specific training [3] | Pilot study of a tailored, person-centred stroke self-management support intervention developed by specifically trained stroke nurses and stroke survivors |
| Nurses with no advanced qualification may deliver a service in remote or underpopulated areas independent of day-to-day supervision [4] | Médecins Sans Frontiere and the South African government have implemented a nurse-based, doctor-supported model of care to combat the AIDS epidemic and increase access to antiretroviral treatment (ART). The model decentralizes administration of ART for HIV positive patients through nurse-initiated and -managed ART |
| Nurses may deliver a service under a patient group direction or equivalent [5] | Patients who underwent resection for colorectal cancer were followed up by a nurse specialist according to a protocol determined by the colorectal surgeons in the unit. Detection rates for recurrent or metastatic disease were comparable to consultant follow-up. A nurse-led clinic provides the benefits of follow-up without overwhelming the consultant colorectal surgical clinic practice. |
direct referral mechanism
assessment and technical skills
freedom to initiate diagnostic tests
prescription (to protocol) of medications
increased autonomy and scope for decision making
discharge.
These authors suggested the extent to which nurses carry out activities independently of other health professionals, notably doctors, can be grouped into three levels ‘depending on the expertise of the nurse and the level of trust from the consultant physician/surgeon’ [7]. This approach was applied to a review of 88 nurse-led cancer clinics in the west of Scotland, demonstrating wide variation in the nurses’ roles at each clinic (Figure 1) and differences in levels of practise (Table 2) [7]. The authors noted that the sustainability of these nurse-led clinics was influenced by practical issues such as availability of suitably trained nurses and adequate administrative support, both of which may reflect managerial attitudes that undervalue the nurses’ expertise and undermine the extent to which practice autonomy can be achieved. Their recommendations for expanding nurse-led services included establishing a framework, protocol template and audit guidance; ensuring suitable organisational support; and developing training and research.
Table 2
Levels of practice in nurse-led cancer clinics, Scotland [7]
In which conditions are services largely nurse-led?
Nurse-led services are established across most (if not all) specialties. In the UK, some services in some localities are largely delivered by nurses – for example, the management of cystic fibrosis, sickle cell anaemia, hepatitis C, renal disease, congenital heart disease, juvenile rheumatoid arthritis, type 1 diabetes, haemophilia – though in some instances the service is available only from a specialist centre. There is no published evidence to quantify differences between specialties in the proportion of services that are nurse-led.
Haemophilia is one example of a specialty in which nurses in some centres deliver the vast majority of services. One survey of 94 haemophilia nurses in 14 European countries found that most were active across the spectrum of service provision: almost all were involved in treatment delivery and direct patient contact, with the majority also providing education, research and service coordination [8].
Elsewhere, nurse-led interventions in many different specialties may form an autonomous part of an interdisciplinary service – for example, delivering some aspects of management such as blood pressure measurement or medication monitoring. The service may be hands-on and involve direct patient contact or it may be managerial: a study from The Netherlands describes how practice nurses act as case managers and are responsible for planning and monitoring care and encouraging cooperation between the disciplines that deliver it [9]. This is an example of a service in which nurses carry out what could be described as a traditional leadership role but do not practise clinical autonomy. Conversely supportive roles, such as counselling, are more likely to become nurse led in response to patient need. A genetic counselling service for haemophilia in Ireland demonstrated improved client satisfaction and education following attendance at a nurse delivered genetic counselling and testing clinic [10].
There is good evidence to support the case for nurse-led services across different specialties. A review of 32 systematic reviews of nurse-led services in OECD countries (17 from the UK) found consistent evidence from comparative studies that nurse-led care was at least as good as traditional medical-led service models in mental health care and the management of long term conditions [11]. There was little evidence that it improved clinical outcomes compared with usual care models and no evidence of cost effectiveness but this may be a consequence of the difficulty of carrying out such research rather than the result of it.
What is it about these conditions that they lend themselves towards being provided by nurse led services?
There are likely to be multiple reasons for establishing a nurse-led service. There are features of some conditions and their treatment that make them amenable to nurse-led care (Table 3). Some might reflect ‘traditional’ nursing roles, such as the physical aspects of care or psychosocial support; others demand specific advanced training to help patients with complex tasks.
Table 3
Characteristics of a condition and its treatment that make it amenable to nurse-led care
But, in addition to the ‘pull factor’, there is usually a ‘push factor’. In today’s NHS and many other health services, the push is likely to come from pressure on resources. If there are not enough doctors (or other disciplines) to meet clinical need or not enough money to pay them, nurse-led services can be an attractive option. There are more nurses than doctors (though hardly a surplus) and for some time the political agenda in some countries has favoured a shift in funding and facilities from the hospital sector (with its stronger hierarchies) to community care, funded by savings from removing established services. The nursing profession also benefits from its foresight in embracing continuing professional development and developing governance, because it now has access to well-established training and enforcement of standards of practice.
Resource pressures will strongly influence the nature of a new nurse-led service but they need not stifle innovation. Different funding models can serve a common cause in very different settings, as a description of three nurse-led services in the Philippines, Kenya and Tanzania shows [12]. In these cases, local circumstances dictated the possible business models and a government-funded cooperative, a nurse-led social franchise and a midwife-led network of maternity centres were all successful in meeting their aims. The characteristics of a medical condition are therefore important but other factors can determine the success or otherwise of a nurse-led service.
Geography can also be a factor in developed economies. In Australia, nurse practitioners were established to plug gaps in primary care provision in remote and rural areas but subsequently strengthened other aspects of health care [13]. And those nurse-led services are not confined to specialties that might be perceived as mainstream: a rural nurse-led clinic for women with sexual dysfunction ‘confirmed the value of an innovative approach to managing female sexual dysfunction in a rural area with workforce shortages and limited health services’ [14]. In the UK, one of the most crowded countries in Europe, a nurse-led specialist neurology service was established to ensure health care remained patient-focused in Argyll and Bute, an area of low population and sometimes difficult transport [15].
There are clearly obstacles to introducing a nurse-led service where there has been no prior provision but there are also barriers to overcoming the historical norms of service provision. It is a fact that, even in developed economies, 21st century health care can be dominated by the medical profession. Building a new service under the control of a non-medical professional is potentially a challenge and the accession of the medical profession is often necessary for progress. In a recent appraisal of care provision for long term conditions in Europe [16, 17] it was stated:
‘The use of nurses in care delivery and coordination is common in systems that have a tradition in multidisciplinary team working… Examples include nurse-led clinics and nurse led case management as established in countries such as England, Italy and the Netherlands. Conversely, the introduction of nurse-led approaches in primary care has remained challenging in systems where primary care is traditionally provided by doctors in solo practice with few support staff.
‘However, there are moves in these countries towards enhanced functions of nurses in care coordination or case management, as, for example, in Denmark, France and Lithuania. Countries are also seeking to strengthen the role of nurses in providing patient self-management support or the delivery of selected medical tasks, although most often such tasks have remained under the supervision of the GP or family physician, such as in Austria, France and Germany.’
An analysis of 27 studies of the perceptions of nurse and medical practitioners working in primary health care published between 1990 and 2012 found that the most frequently cited barrier to collaboration was the lack of awareness by doctors of what nurse practitioners could offer [18]. Collaboration ‘worked well’ when nurses assumed responsibility for routine aspects of care but this did not necessarily lighten the medical workload because nurses who did not have full autonomy still had to consult a doctor about some aspects of management. Doctors complained of losing control and nurses saw hierarchies and power struggles. Trust between nurse and medical practitioners was the key to success.
It is therefore apparent that, even in advanced economies, the health care setting in which a nurse-led service is delivered is an important factor in its success. This includes the historical, structural and organisational context in which management of the condition is delivered as much as the nature of the medical interventions themselves.
Government policy
Introducing change to a highly structured publicly funded health service will be difficult if government policy is not at least facilitative and preferably supportive. Table 4 lists the activities of nurses associated with nurse-led services in European countries, as identified by a 2015 review carried out under the auspices of the World Health Organisation [19]. It shows wide variation in clinical activity and differences in the extent to which regulation permits nurses to expand their role beyond a traditional model.
Table 4
Provision of nurse-led services in European states, 2015 [19]
A comparison of nurse-led services in the UK, New Zealand and Australia concluded that financially incentivising GPs via the Quality Outcomes Framework (QOF) and consequent improvements in clinical governance was the driver for developing nurse-led services in the UK [20]. Services were less developed in the comparator countries, which were characterised by lack of financial incentives, health service policy and rivalry with the medical profession. Government policy had prepared the ground with the 1990 General Medical Services contract for doctors, which rewarded GPs who achieved targets for immunisation and cervical cytology that were best achieved by employing nurses to do the work [21]. QOF payments are made to practices rather than individual doctors, making employment of nurses easier.
This is a striking example of the potential power of official support because nurse practitioners were officially established Australia in 2000 [13]. In the UK, nurse-led services have long been championed by a Government attempting to meet demand for NHS services within tight budget constraints [22].
The unique funding position of the NHS probably accounts for the exceptional urgency with which the UK Government has acted but this does not mean that other countries have stood still. In Italy, ‘The main aim of legislation for the nursing profession over the last decade has been to provide nurses with a more autonomous and active role and to give them new responsibilities so that this important profession is no longer seen as an auxiliary one …’ [19] Germany introduced legislation in 2008 to enable doctors to delegate some aspects of the care patients with chronic disease to nonmedical staff as part of a Disease Management Programme [17]. In the Netherlands, an amendment to the Individual Health Care Professions Act (Wet op de beroepen in de individuele gezondheidszorg) recognised qualifications for clinical nurse specialists that allow them to autonomy in the performance of common and minor medical procedures in preventive, acute, intensive or chronic care [17]. In the Republic of Ireland, the Government and the National Council for the Professional Development of Nursing and Midwifery created policies ensuring a supportive environment to nurture nurse-led services [23,24]. The Hospital Authority of Hong Kong, facing growing demand on emergency departments (which, in the absence of primary care, are the first point of contact with health services), established specialised clinics led by advanced nurse practitioners; their role subsequently developed so that nurse specialists are now leading out-patient clinics [25].
A government’s approach to regulation strongly influences how nursing practice develops. A review of governance arrangements for nurse practitioner-level practice in Europe, the United States, Australia and New Zealand concluded that ‘Countries with primarily decentralized regulation showed uneven levels of advanced practice, due to the different scope of practice laws by states and the different pace at which change occurred’ [26]. Surprisingly, given the advanced status of nurse practitioners in the United States, progress has been slowed by the separate governance arrangements enacted by the independent states. In Australia, inter-state differences in regulation and endorsement policies created barriers to mobility for nurses and different practice models, increased duplication and raised costs. These problems were tackled by shifting responsibility for governance from states and territories to national level. In the UK, governance is the responsibility of employers and health care providers; this has led to ‘large advanced practice variations across and within professional titles, settings and regions’.
What are the skills and competences needed by specialist nurses to allow them to deliver nurse-led services in these conditions?
It is difficult to identify the requirements specifically for providing nurse-led services – if indeed they exist. In the UK in 2014, the potential extended role of nurses was recognised by the Chief Nurse at the Department of Health in the NHS Plan. She identified 10 key roles for nurses: ordering investigations (X-rays/pathology), making and receiving referrals, admitting and discharging patients, managing patient caseloads, running clinics, prescribing medicines, carrying out resuscitation, performing minor surgery, Triaging patients and leading local health service organisation ad delivery [27]. The nurse’s role in improving care and outcomes through working together for better patient experience is recognised. In the UK, Advanced Nurse Practitioner (ANP) is probably the minimum competency level necessary to be responsible for a nurse-led service – that is, to exercise professional autonomy – but, as noted, some services described as nurse-led may not require autonomy [27]. There is also a lack of consistency between countries in the way the terms ANP and Nurse Practitioner are used. Summaries of the roles and qualifications of ANPs or Nurse Practitioners in Europe are available online from International Advanced Practice Nursing at https://internationalapn.org/europehttps://internationalapn.org/europe In the UK, ANP competencies published by the Royal College of Nursing (RCN) (Table 5) are intended to support recommendations by the Home Nations [25, 28, 29, 30, 31]. Such clear leadership might be welcomed but the competencies have been criticised as poorly defined and complicated by differences between the Home Nations [32]. These authors recommend mapping UK competencies to those developed in the United States, a country with more extensive experience of the ANP role [33].
Table 5
Competencies for Advanced Practitioner Nurses, Royal College of Nursing 2012 [28]
ANP competencies in the UK [28], and United States [33], and Nurse Practitioner competencies in the Netherlands [34] and Australia [35] represent the high standard of clinical, academic and managerial performance required for professional autonomy. These countries are at the forefront of professional development for nurses. Elsewhere, advanced clinical performance is recognised but not rewarded with autonomy. In Sweden, for example, ANP is a title restricted to graduates of approved education programmes but they cannot practice autonomously [36,37]. Competencies aimed specifically at developing advanced skills within haemophilia nursing have been developed in the UK [38] and within Europe [39] these form a starting block for developing a haemophilia nursing curriculum and expertise within individual nations/geographical regions to improve care delivery to those individuals and families with bleeding disorders.
Conclusions
Health care delivery is changing wherever you are in the world, to cope with changes in medical care, with more people living longer with long term conditions. Much of this care can be delivered and coordinated by nurses who have the most day-to-day contact with affected individuals and their families. Historically nurses have been seen as doctors’ assistants, now is the time for us to emerge from the shadows of our historical lamps and let the light of the care that we deliver shine in their own right.
Haemophilia is an area where totally nurse-led and delivered care could become a reality, there is already evidence of nurses from developing to developed countries providing excellent and innovative haemophilia care. Given the cost-constrained environment in which health care is delivered, if haemophilia nursing is to achieve its full potential it will be necessary for haemophilia nurses to demonstrate the value they offer by evaluating the services they provide and publishing their results.

