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European Journal of Oncology Nursing xxx (2013) 1e6
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European Journal of Oncology Nursing
journal homepage: www.elsevier.com/locate/ejon
The work left undone. Understanding the challenge of providing
holistic lung cancer nursing care in the UK
Alison Leary a, *, John White b, Laura Yarnell c,1
a
London Southbank University, Faculty of Health & Social Care, LSBU, 103 Borough Rd, London SE1 0AA, United Kingdom
National Lung Cancer Forum for Nurses, Leeds Teaching Hospitals Leeds General Infirmary, Great George Street, Leeds LS1 3EX, United Kingdom
c
National Cancer Action Team, United Kingdom
b
a b s t r a c t
Keywords:
Clinical nurse specialist
Caseload
Workload
Specialist nurse
Lung cancer
In England best practice guidance in cancer recommends that all patients have access to a specialist
nurse such as the tumour specific clinical nurse specialist. The role has become pivotal providing aspects
of care e.g. meeting information needs, holistic nurse led follow up including symptom control, managing care and providing psychological and social interventions including referral to others in the role of
keyworker. There are approximately 295 lung cancer nurse specialists in England and recent study to
model optimum caseload used an on line survey to look at workload of lung cancer specialist nurses. A
survey of 100 lung cancer nurses from across the UK (RR78%) examined the perception of the work left
undone against best practice guidance, caseload size, workload and other factors. 67 of 78 respondents
perceived they left work such as proactive management (52) undertaking holistic needs assessments
(46) providing appropriate psychological care (26) and meeting information needs (16). The majority
(70) worked unpaid overtime (mean 3.8 h range 1e10 h) per week. Although proactive management is
thought to result in better outcomes for lung cancer patients in terms of survival, quality of life and
decisions of end of life a substantial number of the specialist nurses felt that factors such as caseload and
organisational factors inhibited this.
Ó 2013 Elsevier Ltd. All rights reserved.
Introduction
Lung Cancer is the most common cause of cancer death in the
UK causing 33,400 deaths a year from the 39,000 people diagnosed
(CRUK, 2010). In England best practice guidance in cancer has long
recommended that all patients with cancer have access to a
specialist nurse (DH, 2007). Specialist advanced practice in nursing,
often provided through the role of tumour specific clinical nurse
specialist (NCAT, 2012) allows the provision of holistic cancer care.
The role has become pivotal providing aspects of care such as
meeting information needs, holistic nurse led follow up (Moore
et al., 2002; NCAT, 2010), managing care (NCAT, 2010; Leary,
2011) and providing psychological and social interventions
including referral to others in the role of keyworker (DH, 2007;
NCAT, 2010).
Through such access the experience of care is better from the
patient perspective (DH, 2011, 2012). However previous work has
* Corresponding author.
E-mail address: [email protected] (A. Leary).
1
Formerly Project Manager.
shown that patient and family access to clinical nurse specialists
is not consistent (DH, 2011, 2012; Leary et al., 2011; NCAT, 2012).
Evidence suggests that there is variation in the proportion of
newly diagnosed cancer patients and numbers of specialist
nurses across geography and cancer type (Leary et al., 2011;
NCAT, 2012).
This has led to different configurations of services and a probable evolution of the role without strategic intent (Trevatt and
Leary, 2010; Vidall et al., 2011). This means there is also a probable variation in workload or complexity of care that tumour specific specialist nurses are able to provide. As part of a larger national
study into optimum caseload commissioned for the National Cancer Action Team (NCAT, 2013) an examination of workload of a
group of nurses in lung cancer was undertaken to understand the
different variables. These variables included demands on nursing
time, variation in what services nursing services were offered and
variability of service configuration. In addition it was necessary to
examine any potential deficit in activity. This was determined by
asking the group how much work they felt was “left undone” in
that they did not have time or resources to complete the activities
recommended by best practice guidance primarily because of
caseload size and nature.
1462-3889/$ e see front matter Ó 2013 Elsevier Ltd. All rights reserved.
http://dx.doi.org/10.1016/j.ejon.2013.10.002
Please cite this article in press as: Leary, A., et al., The work left undone. Understanding the challenge of providing holistic lung cancer nursing
care in the UK, European Journal of Oncology Nursing (2013), http://dx.doi.org/10.1016/j.ejon.2013.10.002
2
A. Leary et al. / European Journal of Oncology Nursing xxx (2013) 1e6
In 2011 there were 294.62 lung cancer nurse specialists in England (NCAT, 2012). Data from the National Lung Cancer Audit
(NLCA) show that approximately 80% of patients are now seen by a
specialist nurse in lung cancer at some point, however, as low as
44% are seen in some cancer networks and some figures at trust
level are even lower (NLCA, 2012). In addition data available nationally represents newly diagnosed patients/incidence data. These
data are an indication of workload but do not account for on-going
caseloads of patients.
Specialist tumour site specific nurses are thought to enhance
the quality of care and patient experience (DH, 2011, 2012) and
can be productive not only in terms of quality but also in terms of
efficiency for example the avoidance of unnecessary admission to
an acute inpatient unit (Quinn, 2011; Baxter and Leary, 2011).
However it is likely that this activity can only happen when the
specialist nurse can manage the caseload proactively (NCAT,
2013) and not reactively (for example only responding to
crisis). The work is multifunctional and complex (Leary et al.,
2008a) covering areas such as managing care, complex symptom control and identifying, alleviating and or referring issues
that are psychological in nature such as distress and uncertainty,
as in lung cancer there is often an unmet need (Ugalde et al.,
2012).
The aim of this study was to examine, as part of a larger study,
the scale and complexity of service provided. It is likely that caseload size and nature is a determinant of workload in terms of time
available to provide holistic complex cancer care to the optimum
best practice standard. This study examines where the focus of
workload for the lung cancer specialist nurse lay and the work that
the specialist nurses felt was left undone-that they regularly felt
was not attended to because of capacity issues such as caseload
size.
Method
As part a of larger study, one hundred members of National Lung
Cancer Forum for Nurses (NLCFN) was sent an on-line questionnaire to ask about workload using Survey Monkey (Survey Monkey
2012). This covered the four countries of the UK. This consisted of
questions on size of caseload, which parts of the patients’ pathway
they were either involved in or managed, how much unpaid overtime they worked and what specialist nursing care they felt unable
to complete for their patients against best practice standards
(Cancer Action Team, 2007; NICE, 2011; Roy Castle and NLCFN,
2013). They were also given the option to use a free text box to
elicit what they thought were the primary reasons for not being
able to complete these areas of care or barriers to providing holistic
services.
For the purposes of this survey there were six primary categories of activity. This is an oversimplification of the work of the
specialist nurse as this work is complex (Leary et al., 2008a) but
these are the top level categories of work obtained by parsing of
previous data on activity. These categories were: Fully meeting
information needs about cancer and treatment, Proactive management of care for example having the capacity to contact patients at times when more nursing vigilance is required such as
disease progression or starting new therapies, performing and
acting on a holistic needs assessment (Cancer Action Team,
2007), meeting level two psychological needs including referral
onwards (NICE, 2004), meeting social and financial needs,
meeting symptom control and disease management needs and
fully assessing and meeting information needs of the patient and
family.
These results were then analysed using the Survey Monkey
analytics package and additional descriptive statistics on Excel.
Results
The response rate was 78% (78 returns from a sample of 100).
The respondents were only identified by country of origin and
nature of organisation to preserve anonymity.
The group were largely based in England and acute care 98.5%
(67). 14.7% (10) were based in England in thoracic oncology (surgical centres). In England one nurse was based in the community
(1.5% of total). In the other countries all were based in the acute
setting Wales n ¼ 4, Northern Ireland n ¼ 1 Scotland n ¼ 4 and one
other (not stated).
In response to the question “what do you consider to be your
current caseload including all patients on all part of the pathway?”
The majority (n ¼ 33) answered 100e200. The next most common
answer was 301e400 (n ¼ 13) and 14 answered in the categories of
401e500 and over 500. This can be seen in Fig. 1
The nurses were asked which parts of the patient pathway they
either participated in or managed as part of a nurse led service in
collaboration with a multidisciplinary team (NCAT, 2010) 61 of the 78
managed one or more parts of the patient pathway as a nurse led
service. The most common phases for nurse led activity was diagnosis
onwards (n ¼ 41) and nurse led follow up in stable disease (n ¼ 41).
Such nurse led services are the configuration recommended by best
practice guidance in lung cancer nursing (Moore et al., 2002; NICE,
2011; NLCFN, 2009, 2012). 57.4% (35) managed the pre-diagnosis
part of the pathway which would include those who are referred
but not diagnosed with cancer and would be discharged at that point.
Patients who are referred and managed but do not have a cancer
diagnosis are unlikely to appear in most caseload/workload calculations. 55.7% (34) managed the progressive disease part of the
pathway which is likely to include the prevention of admission for
symptom control or end of life care and facilitating care in the community (Quinn, 2011; Baxter and Leary, 2011). Descriptors of nurse
led services given in the free text responses were varied and included
chemotherapy consent and review clinics, 2nd line treatment clinics
and clinics to follow up solitary pulmonary nodules.
The majority (70) regularly worked one or more hours per week
unpaid overtime. Previous studies of this group had shown a mean
of 6.5 hours per week (Leary et al., 2008b) and similar findings were
seen in this study at a mean average of 3.8 hours overtime with a
range of 1e10þ hours per week per role (not whole time equivalent
e this included data from part time workers in the descriptor
fields). 16 members of the group worked 6e10 h or more per week
unpaid overtime.
The majority of the group (67) expressed areas of care which
they felt that caseload size prohibited them from doing against best
practice standards. Respondents could choose more than one area
to respond to (total 170 responses Fig. 2).
77.6% (52) felt that they could not proactively manage their caseload using nursing vigilance (that is planned contact and act at times
of known higher need) but felt they had to reactively manage care
(had to rely on patients contacting them with problems/at points of
crisis). Holistic needs assessment has been formalised in England as a
best practice standard to assess fully physical and psycho-social needs
(CAT, 2007) but 46 felt that they could not regularly offer this to patients. Patients with lung cancer often have high levels of distress and
a high need for information however 26 of the respondents felt they
did not have time to address psychological issues and 16 felt they
could not fully meet information needs. Although cancer patients are
more likely to face hardship (Sharp et al., 2013) 17 of the nurses felt
they could not address social and financial issues. 13 felt unable to
fully address symptom and physical issues due to workload.
In terms of what is left undone and relationship with caseload
size there seems to be a relationship in certain areas. Of the 67
nurses who responded to one or more areas (n ¼ 170) there was
Please cite this article in press as: Leary, A., et al., The work left undone. Understanding the challenge of providing holistic lung cancer nursing
care in the UK, European Journal of Oncology Nursing (2013), http://dx.doi.org/10.1016/j.ejon.2013.10.002
A. Leary et al. / European Journal of Oncology Nursing xxx (2013) 1e6
3
Fig. 1. The current caseloads of the group (n ¼ 78) and distribution by size.
Fig. 2. The work nurses felt were left undone or not completed to best practice standards (n ¼ 67 nurses 170 responses).
variation as to which areas where related to caseload size however
these data might be suggestive of a relationship between amount of
categories of work left undone and caseload size in some areas
similar to a tipping point (Table 1). More work would need to be
done in this area.
The lung cancer specialist nurses in the study were asked to
comment on the reasons they felt work was left undone and if
caseload size was the only determinant (Table 2).
Caseload size was often cited as the main determinant and
meant prioritising parts of the patient pathway rather than giving
holistic care across the entire pathway or part of the pathway
which were part of the service for example:
“I think the size of our caseload prevents us being as proactive as
we would like to be e we feel we are a reactive service. It is
impossible for us to maintain regular contact with patients and so
we are very active at certain points in the pathway, especially
around diagnosis and end of life”
Caseload 201e300 group
This was typical of findings in the larger modelling work (NCAT,
2013) the LCNS tended to concentrate on areas that were deemed as
most acute.
Even those who answered that work was not left undone
questioned the quality of service they wished to provide:
Please cite this article in press as: Leary, A., et al., The work left undone. Understanding the challenge of providing holistic lung cancer nursing
care in the UK, European Journal of Oncology Nursing (2013), http://dx.doi.org/10.1016/j.ejon.2013.10.002
4
A. Leary et al. / European Journal of Oncology Nursing xxx (2013) 1e6
Table 1
The categories of work left undone against caseload size.
Estimated caseload size
Meeting information Proactive
Managing biographical disruption Symptom control/ Social/financial Holistic needs Total
(not inc pre-diagnosis work) needs
management and other psychological issues
physical issues
issues
assessment
respondents
0e100
5.88%
1
35.29%
6
23.53%
4
0%
0
0%
0
35.29%
6
17
101e200
8.70%
6
28.99%
20
15.94%
11
8.70%
6
10.14%
7
27.54%
19
69
201e300
0%
0
33.33%
5
20%
3
6.67%
1
13.33%
2
26.67%
4
15
301e400
12.12%
4
27.27%
9
12.12%
4
12.12%
4
9.09%
3
27.27%
9
33
401e500
14.29%
3
33.33%
7
4.76%
1
9.52%
2
14.29%
3
23.81%
5
21
Over 500
13.33%
2
33.33%
5
20%
3
0%
0
13.33%
2
20%
3
15
16
52
26
13
17
46
170
Total respondents
Table 2
Hours of average unpaid hours worked on a regular basis by caseload size.
I do not/rarely work
unpaid overtime
Less than 1 hour
1e2 h
3e4 h
5e6 h
6e7 h
7e8 h
8e10 h
Over 10 h
Total
Q2: 0e100
27.27%
3
18.18%
2
36.36%
4
9.09%
1
0%
0
0%
0
0%
0
0%
0
9.09%
1
11
Q2: 101e200
0%
0
3.03%
1
33.33%
11
36.36%
12
9.09%
3
9.09%
3
3.03%
1
6.06%
2
0%
0
33
Q2: 201e300
0%
0
0%
0
33.33%
2
33.33%
2
16.67%
1
16.67%
1
0%
0
0%
0
0%
0
6
Q2: 301e400
0%
0
7.69%
1
30.77%
4
23.08%
3
7.69%
1
7.69%
1
0%
0
15.38%
2
7.69%
1
13
Q2: 401e500
0%
0
0%
0
14.29%
1
42.86%
3
14.29%
1
14.29%
1
14.29%
1
0%
0
0%
0
7
Q2: Over 500
0%
0
0%
0
28.57%
2
28.57%
2
14.29%
1
0%
0
0%
0
14.29%
1
14.29%
1
7
3
4
24
23
7
6
2
5
3
77
Total respondents
“I provide all of the above, but not always to my satisfaction due to
pressure of work”
Other challenges to providing the service were unfilled vacant
posts, colleagues on long term sick leave, financial pressures, being
single handed practices with no cover, organisational workforce
reviews that appeared to question the value of the role, specialist
nurses being asked to take rostered shifts on inpatient wards, lack
of administrative support, lack of leadership or support from
managers (immediate and/or senior), little opportunity to develop
services beyond a minimum, lack of medical staff/staff required to
cover several sites (n ¼ 41).
Discussion
The majority of specialist nurses (n ¼ 67, 86%) felt they left work
undone against national best practice standards. The primary reasons cited were workload and lack of organisational support. There
was a broad spread of work left undone against caseload size. For
example the majority of respondents (46) cited holistic needs
assessment as presenting a challenge in terms of time despite
caseload. Holistic needs assessment comes in many forms but is a
complex set of assessments and actions which take around 45
minutes to complete (NCAT, 2013).
Cancer specialist nurses in England regularly report working
unpaid overtime (Breast Cancer Care, 2008; DH and Frontier
Economics, 2010) as do other specialist nurses working in long
term conditions (RCN, 2010; Oliver and Leary, 2010). In this study
those with higher caseloads were more likely to regularly work
unpaid overtime. The only respondents to not regularly work unpaid overtime were 27% of those with a caseload of less than 100.
In the free text responses (n ¼ 48) 27 report spending expert
nursing time doing the essential but non-specialist administrative
work which could be done by a secretary or administrator and this
is similar to previous studies (Leary et al., 2008a; Breast Cancer
Care, 2008; Anionwu and Leary, 2012; Norton et al., 2012).
Work left undone is common in nursing (Ball et al., 2012) and
represents a source of dissatisfaction. In the current climate of
austerity measures some CNSs are being asked to cut back on study
leave and work on the wards. This can be seen as undermining the
role of the CNS. The National Lung Cancer Forum for Nurses undertook a survey in 2011 to assess this further and found that 16% of
Lung Cancer Nurse Specialists felt their role to be under threat with
10% being asked to work on wards (NLCFN, 2011). Evidence from
the Royal College of Nursing (2010) recognises that specialist
nursing posts are often placed under threat during times of financial austerity despite the evidence that patients value the services
offered by them.
Please cite this article in press as: Leary, A., et al., The work left undone. Understanding the challenge of providing holistic lung cancer nursing
care in the UK, European Journal of Oncology Nursing (2013), http://dx.doi.org/10.1016/j.ejon.2013.10.002
A. Leary et al. / European Journal of Oncology Nursing xxx (2013) 1e6
A major challenge to optimal workload/caseload calculation is
the lack of data. Incidence data is collected nationally however no
data is collected regarding on-going caseload and in England only
partial data is collected on patients who present with the signs and
symptoms of lung cancer. A proportion of these patients use lung
cancer nurse services but then are diagnosed as benign. These
patients are likely to contribute to the lung cancer nurse workload
however do not show as part of the national dataset (NLCA, 2012). If
employers model workload solely on the basis of incidence this is
likely to represent an underestimation.
People with inoperable lung cancer report a higher burden of
unmet need, they experience more psychological distress and
physical hardship than other tumour sites (Ugalde et al., 2012)
making the work of the specialist lung cancer nurse even more
relevant. There is also evidence to suggest that proactively managing the care of lung cancer patients in the palliative setting has
many positive benefits such as survival, quality of life, mood and
less aggressive approaches to the end of life (Temel et al., 2010) and
reduced inappropriate admission (Baxter and Leary, 2011). It is of
interest to note that the interventions described in the work of
Temel et al. (2010) reflect closely the role and interventions of the
Lung Cancer Nurse Specialist in the UK. In addition the National
Lung Cancer Audit (NLCA, 2012) has shown that patients known to
a Clinical Nurse Specialist in lung cancer are more likely to receive
treatment (60% v 30%). Researchers and others have attempted to
explain this (Roy Castle and NLCFN, 2013) by analysing the patient
pathway and the interventions that the Clinical Nurse Specialists
provide. With interventions performance status and survival
maybe improved, information needs enhanced, decision making
better informed and therefore more likely to have treatment. For
those Clinical Nurse Specialists who are unable to provide this level
of support to patients this could potentially have a negative impact
on treatment uptake, quality of life and survival.
The Improving Lung Cancer Outcomes Project (Royal College of
Physicians, 2012) found that teams with higher clinical nurse
specialist to lung cancer patient ratios were more likely to meet
quality performance indicators.
Clinical nurse specialists in lung cancer in the UK provide a
valued service however this study shows they perceive a lack of
resources and organizational barriers prevent them from fully
delivering holistic cancer care to the standard of best practice
guidance. Compliance with best practice guidance is more likely to
be achieved if these roles are supported by organisations in terms
of resources such as secretarial support, appropriate staffing such
as filling vacant posts or calculating optimum caseload and managerial support to enable service improvement.
Declared interest
There is no declared interest however the work that this study
originated from (optimum caseload calculations) was funded by
the National Cancer Action Team.
Conflict of interest
There is no conflict of interest. This work was not funded but the
original caseload calculations work was funded by the National
Cancer Action team.
Acknowledgements
The authors wish to thank the National Cancer Action Team
Quality in Nursing Group.
5
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care in the UK, European Journal of Oncology Nursing (2013), http://dx.doi.org/10.1016/j.ejon.2013.10.002