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rsing act JOSEPHINE G PATERSON

THE ROLE OF LUNG CANCER

NURSE SPECIALISTS
John White assesses the pivotal part experts play in supporting patients from
diagnosis to follow up and survivorship, providing them with information and
acting as co-ordinators between individuals and multidisciplinary team members
Correspondence
john.white@leedsth.nhs.uk
John White is lead Macmillan
lung cancer nurse specialist,
St Jamess Hospital, Leeds
and chair, National Lung
Cancer Forum for Nurses
Date of submission
May 24 2013
Date of acceptance
September 11 2013
Peer review
This article has been subject to
double-blind review and checked
using antiplagiarism software
Author guidelines
cnp.rcnpublishing.com
Abstract
A report published by the National Lung Cancer
Forum for Nurses and the Roy Castle Lung Cancer
Foundation examines the contribution of lung cancer
nurse specialists (LCNSs) to quality patient care
at all stages of the disease pathway. The National
Institute for Health and Care Excellence recommends
that an LCNS is available at all stages of care, with
the UK Lung Cancer Coalition stating that patients
should have access to an LCNS for support and
advocacy when they need it.
However, growing caseloads, the expectation
for all patients to have a holistic needs assessment
completed at various points of the pathway, an
increasingly complex workload and NHS financial
pressures all present potential barriers to the
delivery of high quality care for patients. This article
examines the complex and varied role of LCNSs. It is
important to note that when discussing lung cancer
the principles of care also apply to patients with
mesothelioma although this disease is not discussed.
Keywords
Care pathway, clinical nurse specialist, lung cancer,
patient care, patient outcomes, workforce
LUNG CANCER is the most common cause of cancer
death in the UK (Cancer Research UK (CRUK) 2013a).
Approximately 41,500 people are diagnosed with
lung cancer annually in the UK (Roy Castle Lung
Cancer Foundation (RCLCF) 2013), with one third
surviving for one year or more and only 8.5 per cent
surviving beyond five years (CRUK 2013b).
Recommendations made in the report
Understanding the Value of Lung Cancer Nurse
Specialists (National Lung Cancer Forum for Nurses
(NLCFN) and RCLCF 2013) focus on the difference
that lung cancer nurse specialists (LCNSs) can make
to the lives of patients and their families and carers.
The report is based on a survey of patients and
carers and LCNSs own accounts of their effect on
patient outcomes. The reports recommendations,
combined with national cancer patient experience
survey findings (Department of Health (DH) 2012a)
and audit data (Health and Social Care Information
Centre (HSCIC) 2012), build a compelling picture of
the value of LCNSs.
There are 284 LCNSs in England (National
Cancer Action Team (NCAT) 2010a) and since the
introduction of the role in 1995 there has been an
increase in the absolute number of posts. There is
variation in access to LCNSs across the UK, with
55 per cent of patients seeing an LCNS at diagnosis,
80 per cent seeing one at any point (HSCIC 2012)
and, in England, 90 per cent being given the name of
an LCNS (DH 2012a).
The Improving Lung Cancer Outcomes Project
(Royal College of Physicians 2012) used the quality
outcome measures of patient seeing an LCNS at the
time of diagnosis and patient seeing an LCNS at
defined points along their pathway and found that
teams with higher ratios of LCNSs to patients were
more likely to meet these measures than teams who
had lower ratios.
LCNSs who responded to the NLCFN/RCLCF (2013)
survey reported that growing caseloads, increasingly
complex workloads and bureaucracy were creating

16 November 2013 | Volume 12 | Number 9 CANCER NURSING PRACTICE

Science Photo Library
 Art & science | patient care
barriers to the delivery of quality care. Some LCNSs
said that their volume of work created difficulties
in supporting patients throughout the whole
care pathway.
Holistic care
The NLCFN/RCLCF (2013) report states that LCNSs
are in an ideal position to provide holistic care,
ensuring that all patients needs are addressed
from referral to diagnosis, through treatment and
survivorship, and including end of life care.
LCNSs provide support for patients and carers
at all stages of the pathway, assessing physical,
psychological, social, spiritual and financial needs
(NCAT 2007).
The role of the LCNS and its potential effect on
survival outcomes requires further exploration.
Temel et al (2010) found that patients in the
US with newly diagnosed metastatic non-small
cell lung cancer who received early palliative
care had an improved survival rate of two months.
On examination of this trial by the NLCFN committee
the palliative care interventions arguably are likely
to reflect elements of the LCNS role in the UK.
The LCNS is also often involved in health
promotion initiatives to raise awareness of the
signs and symptoms of disease, and giving smoking
cessation advice. LCNSs may work with local
organisations such as schools as well to promote
lung cancer awareness.
Multidisciplinary care
The LCNS supports the needs and wishes of
patients in the multidisciplinary team (MDT). This
advocacy role is especially important because of
the number of healthcare professionals involved
in decision making about diagnosis and treatment.
It is common for patients to be contacted by
the LCNS by telephone after the MDT discussion
and guidance has been published to help LCNSs
communicate these decisions (NLCFN 2009).
The diagnostic process has become more
challenging with the development of new techniques
and increasing treatment modalities (National
Institute for Health and Care Excellence (NICE) 2011).
The emergence of highly specialised treatments
has added another dimension to the options
available for patients, for example, stereotactic
body radiotherapy for early stage lung cancers and
stereotactic radiosurgery for brain metastases.
Co-ordination of these complex treatment pathways,
which may also involve the conventional treatments
of chemotherapy, radiotherapy and thoracic surgery,
will usually be undertaken by the LCNS. Research
into complex treatment decisions for patients with
18 November 2013 | Volume 12 | Number 9
advanced lung cancer showed that LCNSs supported
decision making and were seen as trusted sources of
information (Thornton et al 2011).
Pre-diagnosis
LCNSs are involved in complex activity pre-diagnosis
by providing information, co-ordinating tests,
communicating with other healthcare professionals
and supporting symptom management, including
prescribing (White 2013). This activity occurs mostly
in dedicated clinics or for inpatients when there
is a high level of suspicion of lung cancer. The UK
Lung Cancer Coalition (2012) recommends that
LCNSs should be involved in pre-diagnosis care of
all suspected lung cancer patients from the point
of detailed investigations in secondary care.
Diagnosis
The NICE (2011) guideline states that an LCNS
should be present at diagnosis. The psychological
effect of diagnosis on patients and carers often
requires special attention and it is important that
patients are offered a holistic, co-ordinated and MDT
approach to care (RCLCF 2011).
Once patients have been informed that they
have suspected lung cancer, further tests and
investigations are required. The working diagnosis
is usually delivered by a respiratory physician, but
can on occasions be given by an LCNS, who outlines
the additional investigations required and the
management plan.
The information provided to patients can be
complex and the pathway can change as test results
materialise. If patients are known to an LCNS they
can be given the information by telephone. However,
this may create anxiety for patients and it can be
challenging for the LCNS to provide the information
with sensitivity (NLCFN 2009). Good practice would
suggest negotiating with patients about how they
would like information imparted at the various
steps of the pathway so they can consent for
this to happen. Such an approach can build trust
between patients, LCNSs and MDTs, which may
also help with decision making when it comes to
discussing treatment.
For most patients there will be a period of
time from being told about the suspicion of
disease to seeing a specialist to discuss treatment
options. During this time, the LCNS is well placed
to provide support and explain the diagnosis,
potential treatment options, symptom management
interventions and a follow-up plan from the
initial consultation.
The LCNS should have the ability to triage
the patient to the correct specialist, whether
CANCER NURSING PRACTICE
Figure 1 Proportion of patients with a lung cancer nurse specialist present at diagnosis, England and Wales
60
Nurse specialist present at diagnosis (%)
50
40
30
20
10
0
2007 2008
Audit period
(Health and Social Care Information Centre 2013, National Lung Cancer Forum for Nurses and the Roy Castle Lung Cancer Foundation 2013)
oncologist or thoracic surgeon, after MDT
discussion. The LCNS can also discuss referral for
additional nursing and social care, benefits advice
and palliative care if required.
The National Lung Cancer Audit for 2011 found
that 55 per cent of patients were seen by an LCNS
at diagnosis (HSCIC 2012). Although this represents
an increase from 19 per cent in 2007 (HSCIC 2013)
(Figure 1), it also means that 45 per cent of patients
did not have the support of an LCNS at diagnosis,
which is of great concern.
Treatment
Latest figures from the National Lung Cancer Audit
for 2011 indicate that, although active treatment
rates are increasing, there remain variations in
the number of patients offered active treatment.
In 2011, 60 per cent of patients received active
treatment (HSCIC 2012), compared with under
50 per cent in 2005 (HSCIC 2013). The audit
also found that 65 per cent of patients seen by
an LCNS went on to receive active treatment,
compared with 29 per cent who did not see
an LCNS (Figure 2, page 20). Although not showing
a causal link between LCNS input and having active
treatment, the data are compelling.
When considering this correlation LCNSs can
affect treatment uptake in a range of ways. Providing
information at diagnosis about potential treatment
options, including clinical trials, could help patients
CANCER NURSING PRACTICE
2009 2010 2011
make an informed decision by the time they see
the oncologist or thoracic surgeon. For patients
with advanced disease, LCNSs have the opportunity
to intervene with symptom control before a
consultation with the oncologist, which may improve
symptoms and fitness levels, and make it more
likely that patients are offered active treatment.
LCNSs also provide formal follow up in treatment
pathways. One example is an LCNS-led clinic for
patients receiving erlotinib (NLCFN/RCLCF 2013).
Consensus guidelines (McPhelim et al 2011) have
also been developed to aid this approach to care,
with many MDTs considering new models of service
delivery in light of the skills and knowledge of the
LCNS to deliver these services.
There are other examples of LCNS-led services.
A thoracic surgical rehabilitation programme
(NHS Improvement 2013) has helped to reduce
post-surgical complications from 19 per cent
to 11 per cent, with a decrease in intensive care
admission and hospital readmission rates in the
intervention group compared with the control group.
The LCNS recruited patients to the programme and
supported them throughout.
The Scottish Intercollegiate Guidelines Network
(2005) also recommends that breathlessness clinics
led by nurses or physiotherapists should be made
available to all lung cancer patients. Nurse-led
breathlessness clinics can lead to improvements
in breathlessness, functional ability and physical
November 2013 | Volume 12 | Number 9 19
 Art & science | patient care
and emotional states for people with lung cancer
(Corner et al 1996, Bredin et al 1999).
The focus of all these initiatives is to improve
quality of life and educate patients about their
illness and treatment.
Follow up
The NICE (2011) guideline recommends that
there needs to be a consistent and informed
approach to follow up, particularly in terms of the
timing of appointments and access to specialists.
However, Beckett et al (2011) found large variations
in follow-up practice among UK oncologists.
The NLCFNs (2010) nurse-led follow-up guidelines
state that patients should have a discussion
about the role and function of follow up, which
usually includes an assessment in the outpatient
clinic but can also be by telephone with the most
appropriate specialist.
LCNS follow up is a recommendation in the
NICE (2011) guideline, which stipulates that
teams should offer protocol-driven follow up
led by an LCNS if patients have a life expectancy
of more than three months. The NLCFN (2010)
nurse-led follow-up guidelines help LCNSs and
MDTs to deliver this service.
Compared with conventional medical follow up
of patients with lung cancer, nurse-led follow up
has been shown to reduce medical consultations,
Figure 2 Proportion of patients with lung cancer receiving active treatment in England and Wales adjusted
for age, disease stage and performance status
70
60
Patients receiving active treatment (%)
50
40
30
20
10
0
2008
(Health and Social Care Information Centre 2012, National Lung Cancer Forum for Nurses and the Roy Castle Lung Cancer Foundation 2013)
20 November 2013 | Volume 12 | Number 9
improve patient satisfaction and increase the
number of patients dying at home rather than
elsewhere (Moore et al 2002).
NICE (2011) also recommends that patients know
how to contact the LCNS involved in their care
between scheduled hospital visits. Access to the
LCNS is crucial as it is difficult to predict what may
occur for each patient and at what time, for example,
the development of brain metastasis or spinal
cord compression.
Last year of life and end of life care
Cancer Research UK (2013c) statistics showed that
35 per cent of patients presented with stage IV
advanced disease at diagnosis in England and
Wales in 2011. Detailed and practical guidance
on supportive and palliative care interventions
for patients with advanced lung cancer or
mesothelioma in the last year of life is provided by
the NLCFN (2012). The LCNS can co-ordinate any
necessary interventions and offer expert advice and
guidance to hospital and community teams.
When they are informed that they are approaching
the end of life, patients may be seen in the outpatient
clinic or as an inpatient. With the range of services
that can be provided by primary and secondary
care, co-ordination needs to be prioritised to
prevent duplication or misunderstanding. The LCNS
should be central to this process and proactive
Seen by lung
cancer nurse
specialist
(LCNS)
Not seen by
LCNS
Data not
recorded
2009 2010 2011
Year
CANCER NURSING PRACTICE
in communicating the plan of care with the various
teams. Fast track care co-ordination (DH 2012b)
can be initiated. Liaison with the palliative care
team is common; some LCNS roles even include
a palliative care specialism.

Survivorship
The LCNS is also in the best position to co-ordinate
a structured assessment of patients needs and plan
of future care once treatment is completed. Patients
should be given a treatment summary documenting
the care provided and highlighting signs and
symptoms of recurrence and the consequences
of treatment (DH 2013).
If problems occur patients should know how
to contact the team for advice, and this will usually
involve contacting the LCNS. Many LCNSs also
run support groups which, while time-consuming,
can be a great source of ongoing mutual support
for patients and carers given their complex needs
(NLCFN/RCLCF 2013).

Cost savings

Evidence shows that LCNSs can contribute to cost
savings for the NHS. White (2010) provides examples
of good practice initiatives by LCNSs and MDTs
in reducing length of inpatient stay, which are
supported by the DH (2010).
For example, the Sherwood Forest Hospitals NHS
Foundation Trust reduced the average length of stay
for lung cancer patients by 25 per cent (White 2010).
A recurring admission patient alert system was
developed where lung cancer nurse specialists
were issued with Blackberry handheld devices that
gave an instant alert of admission. The success of
this approach was implemented across the trust
and won an award at the 2007 Medical Futures
Innovation Awards.
A study in Manchester (NCAT 2010b) found that
service improvements along the cancer pathway
led by lung and breast CNSs could save about
10 per cent of cancer expenditure. In another
example, LCNSs in London delegated administrative
tasks and adopted a proactive case management
approach, which resulted in a drop in admissions for
non-acute problems from four to 0.3 a month and
represented a significant return on investment in
nurse posts (Baxter and Leary 2011).
Macmillan Cancer Support (2011) reported
that CNSs have been shown to represent good value
for money by reducing the number of emergency
admissions, length of hospital stay, number of
follow-up appointments and number of medical
consultations, and by providing support to enable
people to be cared for and die in their place of choice.
Alamy
The case studies highlighted in the NLCFN/
RCLCF (2013) report also show that LCNSs can
increase productivity and efficiency by managing
treatment side effects and symptoms and preventing
costly unplanned hospital admissions. Nurse-led
services also free up consultants time and empower
patients to self-manage some symptoms, making
additional efficiency savings.
Despite these improvements, evidence is
emerging that LCNSs are not always able to fulfil
their role because of hospital pressures on other
services. A survey undertaken by the NLCFN (2011)
found that 10 per cent of LCNSs were being asked
to work on wards to ease staffing pressures. LCNSs
potentially open up bed occupancy, so it is not
cost effective for them to work on wards. The
goodwill of LCNSs in working overtime unpaid has
been reported by Leary et al (2008), who found
that on average LCNSs worked an additional
6.5 hours a week. The Royal College of Nursing
(2010) recognised that specialist nursing posts
often come under threat during times of financial
austerity despite evidence that patients value the
services they offer.
Implications for practice
The NLCFN/RCLFC (2013) report provides insights
into the role and effect of the LCNS in the disease
pathway. The report aims to help all LCNSs
show evidence for their role and it can also be

CANCER NURSING PRACTICE November 2013 | Volume 12 | Number 9 21

 Art & science | patient care
used by other CNSs working in similar cancer
pathways. The evidence for the influence of CNSs
on patient experience and on treatment uptake is
particularly compelling.
Conclusion
This article has examined the complex and varied
roles of LCNSs and their contribution to the delivery
of high quality care across all stages of the patient
pathway. LCNSs part in improved NHS productivity
and efficiency can also be demonstrated, which
poses a challenge to all lung cancer teams to identify
how they can develop LCNS services.
The figure of just over half of patients with
lung cancer having an LCNS present at diagnosis
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Acknowledgements
Jesme Fox, medical director,
Roy Castle Lung Cancer
Foundation; Kim Bowles and
Diana Borthwick, National
Lung Cancer Forum for
Nurses; and MHP Health
Mandate health consultancy
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None declared
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