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.

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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]

ACTIVITY LEVEL OF PRACTICE
Assessment Holistic nursing assessment (verbal) including symptom assessment Holistic assessment and physical examination/ clinical assessment focusing only on tumour group Holistic assessment with full physical examination/clinical assessment
Referral method Internal from doctor Internal from doctor or other discipline External and internal sources, any type
Diagnostic testing/ consultation Prescription Initiated by doctor No prescribing Joint with discussion Within clear protocols, for example, patient group directions Independent decision/order Non-medical prescribing
Decision-making Discharge With permission Refer back to doctor In discussion Discharges from nurse-led service Autonomous Discharges from service/hospital and/or into primary care

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].

Figure 1

Activities carried out in nurse-led cancer clinics, Scotland [7]

graphic/j_jhp00100_fig_002.jpg

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

CHARACTERISTIC EXAMPLES
The condition is chronic and requires ongoing intervention drug dependency, heart failure, COPD, diabetes
The condition is acute and does not require ongoing medical follow-up of transient ischaemic attack
intervention
The intervention is preventative immunisation
Management is deliverable by a nurse with suitable competency
Management includes ‘traditional’ nursing skills
Management requires regular monitoring, adjustments to treatment asthma, diabetes
and ongoing education
Patients benefit from the superior ‘person’ skills of nurses
Doctors can’t be bothered or don’t have the time, or it’s cheaper for lipid level monitoring, wellbeing clinic
nurses to do it
Treatment is technically too difficult for some or all patients or carers at-home infusion of enzyme replacement
to administer, or requires support therapy
Treatment requires a high degree of personalisation that may insulin therapy, factor replacement therapy
change over time
Treatment decisions depend on an holistic assessment of the patient’s cystic fibrosis
current needs via regular one to one consultations

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]

Austria Task substitutions such as nurse-led diabetes clinics or nurse-led health education do not occur in primary care.
Belgium -
Bulgaria ‘…new care arrangements – such as task substitution with nurses – do not occur in Bulgaria.’ Nurses are not involved in caring for diabetics, for example, or providing health education. This is due to the lack of targeted education in this area, as well as specialized training for nurses working in primary care.
Cyprus -
Czech Republic Nurses do not lead diabetes clinics or perform other forms of health education.
Denmark ‘Patients have direct access to ophthalmologists, ENT specialists, cardiologists, neurologists and surgeons, and only need a referral to visit GP practice nurses, specialist nurses, home care nurses, dentists, midwives, occupational therapists’.
Estonia Finland Nurse-led activities such as health education or diabetes care are rather uncommon in primary care. Nurses are frequently the point of first contact in health centres, and usually provide nurse-led health education. Specific clinics, such as nurse-led diabetes clinics are rarely performed in primary care.
France Nurse-led substitution of care for health education and prevention is very limited: around 60 ambulatory structures concerning health education and diabetes clinics exist in France. The only medical act ambulatory nurses are able to do without a prescription is seasonal flu vaccination for the target population.
Germany ‘A special service for people with specific problems, such as diabetes, is unusual in a German general practice (less than 10%)… All medical professions can directly be accessed by patients with few exceptions… there has been a strong trend towards practices with multidisciplinary cooperation during the last five years… The principal reason for this trend is, above all, a financial incentive…’
Greece Hungary Iceland Coordinated and integrated primary care is non-existent in contemporary Greece. Nurse-led care is rare. -
Ireland ‘Plans for integrated care services between primary and secondary care have been established for chronic obstructive pulmonary disease, asthma, stroke, acute coronary syndrome, heart failure and diabetes.’
Italy -
Latvia Nurse-led activities like health education or diabetes care are quite uncommon in primary care.
Lithuania -
Luxembourg Task substitution does not exist in primary care. For example, nurse-led clinics within primary care, for example for patients with diabetes, or to provide health education, do not take place.
Malta Netherlands - It is very common that primary care nurses perform nurse-led diabetes clinics in primary care, or nurse-led health education.
Norway Nurses form, with GPs, the core of primary care. Their role seems to be health education and traditional nursing services.
Poland Public has free access to nurses.
Portugal Nurse-led substitution of care, mainly in health education and prevention, is very common.
Romania -
Slovakia It is very uncommon for nurses to run specialist (e.g. diabetic) clinics or conduct health education activities.
Slovenia Advanced roles for nurses in primary care do not exist… The role of the specialized nurse (e.g. in diabetes care) is not well developed and established, although some work in so-called “health education centres” at the primary care level, some work in polyclinics and some in hospitals.
Spain Currently, the role of the nurses is expanding and they play a key role in promotion, prevention and follow-up of chronic diseases, as well as involvement in community care and home care… Most of the prevention and health promotion activities, home care and follow-up of chronic diseases are carried out by nurses, who arrange the patients’ health care plans together with the GP… In most of the Autonomous Communities, nurses have seen their roles expand and currently they are independent decision-makers in the health care process of their patients.
Sweden Task substitution, for example through nurse-led diabetes clinics in primary care and nurse-led health education, are very common.
Switzerland …there is limited access to specialized nurses… Currently there are no primary care nurses in Switzerland.
Turkey ‘It is very common for family doctors to work with a re-trained practice nurse who provides several services, including maternal care services, immunizations, or health promotion and education services.’
UK In recent years there has been increased skill mix in primary care, especially nurse-led chronic disease clinics; between 1995 and 2006, the percentage of consultations conducted by nurses increased from 21% to 34% (England).

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]

making professionally autonomous decisions, for which they are accountable
receiving patients with undifferentiated and undiagnosed problems and making an assessment of their health care needs, based on highly-developed nursing knowledge and skills, including skills not usually exercised by nurses, such as physical examination
screening patients for disease risk factors and early signs of illness
making differential diagnoses using decision-making and problem-solving skills
developing with the patient an ongoing nursing care plan for health, with an emphasis on health education and preventative measures
ordering necessary investigations, and providing treatment and care both individually, as part of a team, and through referral to other agencies
having a supportive role in helping people to manage and live with illness
having the authority to admit or discharge patients from their caseload, and refer patients to other health care providers as appropriate
working collaboratively with other health care professionals and disciplines
providing a leadership and consultancy function as required

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.

Notes

[1] Financial disclosure Disclosures

This article was commissioned as part of a project designed to consider options for the future of haemophilia care in Europe. Sobi provided initial funding to Haemnet for the project. The authors have advised no additional interests that might be perceived as posing a conflict or bias.

This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0) which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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