A TEN-YEAR STRATEGY TO IMPROVE LUNG CANCER SURVIVAL RATES - OCTOBER 2016
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A ten-year strategy to improve
lung cancer survival rates
october 20162 25 by 25 3 25 by 25
Membership and acknowledgements The CAG is also supported by leading
patient and clinical group members,
About the UKLCC
including: The United Kingdom Lung Cancer
The UKLCC’s Clinical Advisory Group is a panel of senior Coalition (UKLCC) — the country’s
——British Lung Foundation
clinicians, each representing particular specialities involved largest multi-interest group in lung
——Macmillan Cancer Support cancer — is a coalition of the UK’s
in the care of lung cancer patients, from the time of first ——Roy Castle Lung Cancer Foundation leading lung cancer experts, senior NHS
suspicion of the diagnosis through to palliative care. ——Tenovus Cancer Care professionals, charities and healthcare
companies.
——British Thoracic Society
Through our campaigning activity we
The members of the group are: ——National Lung Cancer Forum
aim to:
for Nurses
——The Primary Care Respiratory Society ——Raise political awareness of lung
cancer
Dr Andrew Wilcock Dr Michael Snee ——Raise the general public’s awareness
Clinical Reader in Palliative Medicine Consultant Clinical Oncologist, of lung cancer — and especially
and Medical Oncology, Nottingham Leeds Teaching Hospitals NHS Trust encourage earlier presentation and
University Hospitals NHS Trust symptom recognition
Professor Mick Peake (Chair) ——Empower patients to take an active
Ms Carol Stonham MBE Honorary Consultant and Senior part in their care
Prescribing Nurse Practitioner, Lecturer in Respiratory Medicine,
——Improve lung cancer services
Minchinhampton Surgery, University Hospitals of Leicester;
in the UK
Gloucestershire Clinical Lead for Early Diagnosis,
National Cancer Registration and
Dr Clive Mulatero Analysis Service, Public Health
Consultant in Medical Oncology, England
St James’ Institute of Oncology,
Leeds Mr Naidu Babu
Consultant Thoracic Surgeon,
Dr Dean Fennell Birmingham Heartlands Hospital
Chair, Thoracic Medical Oncology,
University of Leicester & Leicester Mr Richard Steyn
University Hospitals NHS Trust Consultant Thoracic Surgeon;
Divisional Director - Surgery,
Dr Ian Williamson Heart of England NHS Foundation
Consultant Respiratory Physician, Trust; Honorary Associate Professor,
Assistant Medical Director for Cancer University of Warwick and Chair
Services Aneurin Bevan University of the UKLCC
Health Board
Dr Robert Rintoul
Dr Jason Lester Consultant Chest Physician,
Consultant Clinical Oncologist, Department of Thoracic
Velindre Cancer Centre Oncology, Papworth Hospital
NHS Foundation Trust
Dr John Reynolds
Consultant Radiologist, Dr Steve Holmes
Birmingham Heartlands Hospital General Practitioner, The Park A ten-year strategy to
Professor Keith Kerr
Medical Practice, Shepton Mallet,
Somerset
improve lung cancer
Consultant Pathologist,
Aberdeen Royal Infirmary Dr Wendy Anderson
Contact details survival rates
Consultant Respiratory Physician, The UKLCC is keen to work with all
Ms Lavinia Magee Antrim; Northern Ireland Lung interested organisations and bodies
Nurse Consultant, Thoracic Cancer Co-Lead to improve the quality and outcomes
Oncology, Papworth Hospital of lung cancer treatment and care.
NHS Foundation Trust
For more information about our work
and our partners, please visit our
Professor Michael Lind
website or contact our secretariat.
Professor of Medical Oncology,
University of Hull www.uklcc.org.uk4 25 by 25 5 25 by 25
Contents Introduction
For the last ten years, lung cancer has consistently been
Introduction 05 the UK’s biggest cancer killer1,2. In 2014 alone, it was the
cause of almost 35,900 deaths3, which is more than breast4
How to meet a new UK survival ambition 06 and bowel cancers combined5. The UKLCC was set up in
A UK snapshot: Tackling barriers to survival 07 2005 with the founding ambition to tackle poor lung cancer
survival outcomes and, specifically, to double five-year
Principles to achieve by 2025 10 survival by 2015.
In response to the growing need to address cancer as a whole, nations across
England: Meeting the 25 by 25 survival ambition 12 the UK have undertaken efforts over recent years to help support improvements
in long-term survival. Following this, estimates now suggest that the UKLCC’s
Scotland: Meeting the 25 by 25 ambition 16 founding ambition to double five-year survival has effectively been met in England6,
with improvements also seen in Scotland7, Wales8 and Northern Ireland9.
Wales: Meeting the 25 by 25 survival ambition 20 However, whilst significant improvements have been made, there is still an urgent
need for more to be done. Lung cancer is not prioritised as it should be compared
with other common cancer types, quality of patient outcomes highly varies10 and
Northern Ireland: Meeting the 25 by 25 ambition 24 whilst long-term survival across the UK has significantly improved, rates still fall
behind in comparison with other developed countries11.
Conclusion 28 We know more needs to be done, and we know we need to aim higher to secure
better outcomes for patients.
The 25 by 25 ambition
The UKLCC is calling for a drastic improvement in care
for those with lung cancer across the UK in order to raise
five-year survival rates to 25% by 2025
To determine how to meet this ambition, the UKLCC sought to explore not just
the existing evidence but also the opinions of those who face up to lung cancer
every day, launching a number of surveys across the UK within the lung cancer
community.
Based on this insight, this report contains a series of UK-wide principles
to improve five-year survival rates and meet The 25 by 25 ambition.
These principles, aimed across the patient pathway, are set out in three key
phases up to 2025. Subsequent chapters of this report then set out tailored
recommendations for each UK nation for immediate delivery, laying paths
to success unique to each individual health service.
It is time for the community to redouble efforts to do the very best
for people affected by lung cancer.
The NHS is facing massive financial pressures and resource strain, but there are
also unprecedented opportunities offered by new national structures, local and
regional autonomy and a drive for effective ‘whole person’ care.
A lung cancer diagnosis should not be a death sentence and we hope
that those across UK Governments and health services can support the UKLCC’s
25 by 25 ambition and see its key recommendations implemented across the UK.6 25 by 25 7 25 by 25
How to meet a new UK A UK snapshot:
survival ambition: 50% of patients and carers
consider surviving lung cancer
Tackling barriers to survival
surveying the lung for more than five years to be
achievable
cancer clinical and
patient community Current views on five Prevention:
In order to achieve its five-year survival ambition, Only 27% of patients saw their year survival: Behavioural risk factors
the UKLCC launched a series of UK-wide surveys doctor because they recognised Patients more optimistic still need to be significantly
that they were experiencing
to assess attitudes on long-term survival from across signs and symptoms of lung than doctors? addressed
the lung cancer community. cancer
50% of patients and carers now HCPs believe that a reduction in
This included a survey of 148 healthcare professionals (HCPs)* from across consider surviving lung cancer for smoking rates is the second most
the composition of a multi-disciplinary team (MDT) — specialist nurses, more than five years to be achievable important factor, after early
pathologists, radiologists, oncologists, surgeons and respiratory physicians diagnosis, for improving five-year
— trained in treating lung cancer. Alongside this, we surveyed 102 patients survival rates in lung cancer
and carers from across the UK on their experiences of care and attitudes On a scale of how achievable five-year
towards survival. 65% of HCPs believe early- survival is, 65% of HCPs considered
We also conducted a poll of over 1,000 GPs working in primary care at the stage diagnosis to be the most five-year survival difficult to achieve GPs believe that improved access to
forefront of detecting and referring suspected cases, and canvassed their important factor for improving and 15% completely unachievable smoking cessation services would
views on what improvements need to be made to tackle poor survival. five-year survival rates have the second biggest impact, after
public awareness campaigns, on
Our aim was that, by listening to the views of the lung cancer community and There is an urgent need to meet the expectations improving lung cancer survival rates
utilising the latest evidence and data across the UK, we could begin to identify of those affected by lung cancer. Of those polled,
the necessary steps to combat the country’s biggest cancer killer — steps nearly half of patients and carers described surviving
which will stand the test of time. lung cancer for more than five years as “achievable”. Tobacco use is the most important preventable cause
This chapter summarises the key results from the surveys undertaken. Such optimism, when current five-year survival rates are of lung cancer in the UK. While we know there are a
These have then been used in parallel with the most recent evidence to identify estimated at only 16% at their highest in the UK6, shows proportion of patients who have never smoked who
the overarching principles which need to be taken across the UK to improve 43% of patients waited over that patients have the determination and belief to fight have developed lung cancer, the majority of cases are
survival both now and in the future. one month for initiation of lung cancer for longer. This also reflects the value of preventable, with 86% of cases caused by smoking
treatment after a diagnosis was recent public awareness and patient group campaigns alone14. However, whilst also reducing the number of
confirmed by their clinician in demonstrating that lung cancer is survivable if caught cases, the risk of total mortality and rate of recurrence
early and treated effectively. However, in sharp contrast, of lung cancer is also substantially lower in smokers
the majority of HCPs described surviving for over five who manage to quit smoking following diagnosis of
years as “difficult to achieve” and some as “completely early stage lung cancer or small cell lung cancer15.
unachievable”. These views may be formed partly by
Whilst rates of smoking-related lung cancers reflect
recent cuts to funding for key services related to lung
historical smoking trends, more needs to be done to
cancer such as smoking cessation12, increasing strains
support local services, such as those for smoking
on diagnostic capacity and ill-resourced MDTs
cessation, to reduce future incidence and to improve
— demonstrating that more needs to be done to support
the survival of patients who are newly diagnosed14.
services to meet ambitions for long-term survival.
*All mentions of HCPs refer to secondary and tertiary care clinicians so as to distinguish those
polled in the HCP survey from the GP poll, which exclusively surveyed primary care clinicians.8 25 by 25 9 25 by 25
National screening: Awareness: Referral and diagnosis: Treatment and variation:
Could screening make Lack of awareness amongst More needs to be done to Regional inequalities in
the difference? patients of the signs and improve prompt referral care and under-prioritisation
symptoms of lung cancer, and early diagnosis to ensure of MDTs must become
52% of HCPs believe that a national and when to see their doctor, treatment is delivered as central areas of focus for
screening programme for lung cancer is still a core issue quickly as possible improvement
should be introduced
Lack of awareness amongst patients of the signs and
symptoms of lung cancer, and when to see their doctor,
65% of HCPs believe early-stage 52% of HCPs BELIEVE THAT A lack
We know from international examples that screening is still a core issue
diagnosis to be the most important of capacity and resource presents
is an effective way to increase early identification. factor for improving five-year one of the greatest challenges to
For example, a study in the US showed a 20% reduction survival rates their MDT for improving lung cancer
in lung cancer specific mortality using low spiral CT 51% of GPs believe that patients not
survival rates
screening tools16. Positive steps are also being taken knowing when to visit their doctor is
in the UK, with local initiatives such as UKLS17 and the greatest challenge to ensure a Prompt access to investigative
ECLS18, which assess screening techniques and the timely referral and an early diagnosis testing and quick referral of 84% of HCPs believe regional
benefits of introducing screening across the country. suspected cases were identified as the inequalities in health and care
It is therefore encouraging that our findings show greatest barriers to rapid diagnosis services have a major-moderate
Only 27% of patients saw their doctor
that clinicians agree with the growing evidence base impact on lung cancer survival rates
because they recognised that they
that screening is an effective way to enable early
were experiencing signs and symptoms 36% of patients surveyed waited over
diagnosis and have the desire to see such an initiative
of lung cancer one month for a definitive diagnosis
implemented as a means of improving survival. However, 61% of HCPs believe a standardised
a decision is unlikely to be made until the UK national after an initial suspicion of lung lung cancer pathway for their
screening committee makes a recommendation based cancer was made by their doctor and nation would improve lung cancer
on the results of the NELSON trial. 32% of GPs and 35% of HCPs identified 17% waited over two months survival rates
public awareness campaigns as the
There is a need now for these local initiatives to make most important factor for improving
further efforts to share their findings in a way that works early-stage diagnosis 43% of patients waited over one
towards a nationally funded programme, whilst the More needs to be done to ensure that there is quick and
month for initiation of treatment equitable access to diagnosis and treatment across the
results of the NELSON trial are still pending. after a diagnosis was confirmed by UK and to ensure that MDTs, which are a crucial part
Only 50% of patients and carers had their clinician of delivering this, have sufficient capacity and resource
heard of public awareness campaigns
in order to do so. A standardised lung cancer pathway
for lung cancer
within each UK nation was identified by HCPs as a way
Detecting cancer early and initiating treatment as to improve survival rates and this may further assist in
quickly as possible following a diagnosis of lung cancer combatting local variation rates. If HCPs believe they
40% of patients did not know that
are imperative for improving survival rates. The NHS in can do better for all patients by implementing new
chest pain, weight loss and tiredness
England has set a waiting time standard of two weeks standards of care such as these, the benefits of doing
are possible symptoms of lung cancer
between urgent referral and hospital appointment so must be assessed and implemented by policymakers
to test for lung cancer and has also committed to and health service leaders. Alongside this, such
the standard that treatment starts no more than investments must be supported by increased investment
Both patients and clinicians need to be aware of the 31 days after a treatment plan is agreed19 — with similar in prevention and awareness, particularly in areas where
signs and symptoms of lung cancer to ensure patients standards set across the UK. However, as the results incidence rates are at their highest, to reduce the risk
are diagnosed as early as possible. Polling GPs, as well of our survey show, lung cancer patients are still waiting of further perpetuating regional inequalities in care and
as HCPs, allowed us to ask those working with patients a significant period of time before receiving a clear outcomes.
early on in the pathway what the greatest barriers in diagnosis and starting treatment. We also know from the
achieving this are, and how they can be overcome. latest statistics that across the UK, cancer waiting times
However, our findings suggest that a lack of awareness vary and the targets which are set by nations are often
from patients on the symptoms themselves, and when missed20,21,22,23.
to see their doctor, still act as major barriers to early
presentation.
Similarly, whilst it is positive that half of patients with
lung cancer are aware of public awareness campaigns,
one of the main channels to raise awareness, we need
to invest more in these campaigns to ensure that they
reach more patients, at the right time.10 25 by 25 11 25 by 25
Principles to achieve by 2025:
Implementing lasting change
Using the insights from these surveys, the UKLCC has developed a comprehensive set
of UK-wide principles which are phased for immediate, medium, and long term delivery
towards 2025. These principles address key areas of improvement across the patient
pathway, and are aimed to transform the way lung cancer services are delivered in order
to drastically improve survival and meet the UKLCC’s 2025 survival ambition.
The following chapters of this report draw on the below principles marked for immediate
delivery over 2016-18 and set tailored recommendations for England, Scotland, Wales and
Northern Ireland that are necessary for achieving the UKLCC’s survival ambition.
PHASE 1: 2016-2018 PHASE 2: 2019-2022 PHASE 3: 2023-2025
Fundamental steps to meeting a new ambition Maximising improvements to continue to improve survival Securing the 25 by 25 ambition
PRINCIPLE PRINCIPLE
17 18
PRINCIPLE PRINCIPLE PRINCIPLE PRINCIPLE PRINCIPLE PRINCIPLE PRINCIPLE PRINCIPLE
1
Governments across the UK
2
UK governments to prioritise
3
Public health bodies across
4
UK governments should
5
Health organisations and UK
11
UK-wide taskforce set-up
12
Ring-fence budgets
13
Each nation to introduce UK-wide working group Official standard set for
to prioritise the improvement public health initiatives and the UK to commit to the invest in local screening governments to commission involving those across the for smoking cessation a national screening to be established by UK 60% of those in at-risk
of lung cancer survival in any prevention services, both adoption of annual public pilots, and continue to national clinical audits or lung cancer community, services and improve programme for lung public health bodies to work groups being screened as
future plans or strategies locally and nationally with an awareness campaigns, build an evidence base in performance measures and led by the UKLCC, to set public health initiatives/ cancer for at risk groups, with the European Public part of national screening
relevant to the delivery of aim to reduce and combat the funded nationally, which are anticipation of the NELSON of referral services, which out renewed nation-specific programmes and following the results of Health Alliance. This group programme for lung cancer
broader health, respiratory number of lung cancer cases focused on raising awareness trial results include the assessment recommendations for improving prevention services, which local initiatives and the to examine and learn from
and/or cancer services of the signs and symptoms of of effectiveness of referral five-year survival based on focus on reduction in NELSON trial best practice public health
lung cancer guidelines for suspected learnings from existing European smoking rates, aligning initiatives across Europe with
cancer, with target working groups (such as Cancer with current national the aim of lowering smoking
recommendations of how Benchmarking Partnership and guidance and initiatives rates in line with tobacco free
these can be improved the European Lung Foundation) ambition of 5% by 2035
and in line with European best
practice and standards. UK
governments to commit to
taskforce recommendations for
achievement by 2025
2016 2017 2018 2019 2020 2021 2022 2023 2024 2025
PRINCIPLE PRINCIPLE
19 20
PRINCIPLE PRINCIPLE PRINCIPLE PRINCIPLE PRINCIPLE PRINCIPLE PRINCIPLE PRINCIPLE
6
Invest in existing bodies,
7
The National Cancer Institute
8
National Institute for Health
9
All MDTs should be
10
Upon diagnosis all MDTs
14
Annually renew public awareness
15
Pilot the use of national
16
Commit to ensuring that Target cancer waiting times All UK governments commit
including NHS England’s Lung to offer research funding Research to work with UK responsible for designing should ensure patients have campaigns, focused on raising lung cancer pathways data collection, analysis across individual nations in to having five-year survival
Cancer Clinical Reference towards projects aimed nations to launch a pilot data their own diagnosis pathway access to a lung cancer awareness of the signs and in each devolved nation, and application matches the UK being consistently met rates for lung cancer among
Group (CRG) and Public at developing cost-benefit programme to assess and following initial referral. clinical nurse involved in all symptoms of lung cancer at a aimed at improving the best in Europe as a by over 90% of patients the top 15 performing
Health England’s Lung assessments of diagnostic address local variation for They should also ensure aspects of a patient’s care, two-month minimum, setting a survival outcomes and means of improving lung countries in Europe
Cancer Site-Specific Clinical tools for lung cancer, with the lung cancer treatment, with that suspected cases are and have a dedicated chest minimum target to increase the overall experiences of cancer outcomes and
Reference Group (SSCRG), objective of creating targeted the aim of every part of the dealt with by a respiratory physician and a thoracic number of those diagnosed at the care experience of care
and initiatives to improve and recommendations to improve UK having sufficient resource physician with a special surgeon present as core earliest stage to 40%
optimise referral, diagnostic rapid diagnosis from point of and quality treatment to interest in lung cancer and are members for all meetings
and treatment pathways 3 initial suspicion deliver above the European assessed at a dedicated rapid
survival average by 2025 access clinic12 25 by 25 13 25 by 25
England:
Meeting the 25 by 25
survival ambition
Lung cancer is the second most common cancer in
England and is by far the biggest cancer killer overall,
causing over 28,000 deaths in 2011 alone24.
With one of the lowest survival ——Over 93% of patients are discussed However, despite this, we know These recommendations are actions
outcomes of any cancer type, the at an MDT level, a key way to that overall outcomes are still poor to maintain momentum around
UKLCC has welcomed efforts to date ensure patients receive the highest in comparison to other cancer prevention and awareness, and
to improve long-term survival. In the quality treatment and have a good types, and the UKLCC is concerned explore additional steps which can
five-year cancer strategy published experience of care10 Active treatment Five-year that such positive momentum to be taken to ensure that patients
by the Independent Cancer Taskforce,
it was noted that survival for lung
As a result of such improvements for lung cancer survival tackle this may be under threat.
For example, in only a year, active
present as early as possible. As well
as this, they include utilising existing
in care, long-term survival for lung
cancer remains low, with 9,900
cancer in England has significantly has fallen from estimated to have treatment for lung cancer has fallen bodies and initiatives to optimise
lung cancer avoidable deaths each from 60.2% to 57.6% and there is the diagnosis, referral and treatment
year due to health inequalities25.
improved with recent estimates 60.2% to 57.6%10 increased to 16%6 still a high level of variation against pathway, as well as steps to tackle
even now suggesting that five-year
The strategy sets out a number the national average (15.4%) for the still unacceptable levels of
survival may have increased to
of recommendations in the report, NSCLC surgery10. Further, whilst variation that occur in England,
16%, and would appear to be directly
four specific to lung cancer, focusing reform to the original Cancer Drugs and throughout the UK.
correlated with the increase in
on screening, awareness campaigns, Fund (CDF) model was welcomed,
surgical resection rates6.
access to molecular diagnostics and there is uncertainty regarding the
national clinical audits for critical effectiveness of the new model
cancer services. proposed and the subsequent impact
this will have on patient’s access
Encouragingly since the strategy’s
publication in 2015, several efforts 16% 24,000 people a The percentage to critical treatment. In addition,
the £23 million Radiotherapy
have been made to deliver against
its recommendations and improve year in England of lung cancer Innovation Fund launched in 2013
demonstrated how targeted service
long-term survival for lung cancer:
receive a lung patients receiving upgrades could be undertaken in
Five year survival
——Public Health England introduced
a chest symptoms awareness (2013 predicted)6 cancer diagnosis anticancer a short space of time.
As well as this, smoking cessation
campaign in 2016, which included at a late stage3 treatment varied services, which are essential to
lung cancer and ran for four
months (July - October)26 by hospital trust prevent cases from occurring in
the first place, and to ensure those
——Whilst the UK National Screening 35% from 32% to 83% diagnosed who smoke have the best
Committee are yet to make a
decision on lung cancer until in 201410 chance of survival, are under serious
threat, with 40% of local authorities
the results from the NELSON in England thought to be cutting their
trial are published, local One year survival budgets to such services12.
screening initiatives, such as the
(2013)29 Below is a series of immediate
United Kingdom Lung Cancer
Screening (UKLS) trial, have been Access to a lung recommendations for England
to improve five-year survival in line
commissioned by the Department
of Health’s Technology Assessment
cancer nurse 1st with the UKLCC’s 25 by 25 ambition.
Programme, showing positive specialist varied These are informed by the most
recent evidence and data as well as
results in 2016 to support the
case for a national programme17
from 33.7% to 100% Lung cancer is the on the basis of our survey findings.
across England in biggest cancer
201410 killer in England2414 25 by 25 15 25 by 25
PHASE 1
Fundamental steps to meeting a new ambition: 2016-2018
Recommendations:
1 3 5 7 9
A national cancer implementation group With almost 24,000 people a year in England The Department of Health uses the NICE The Lung Cancer CRG publishes a multitude of resources Tackling variation was identified as one of the key
was set up in 2016 to oversee the delivery receiving a lung cancer diagnosis at a late stage, urgent referral guidelines34 as a key resource which can aid efforts to optimise pathways, however is priorities within the report by the Independent Cancer
of the five-year cancer strategy published it is essential to focus on efforts which support to refer patients as quickly as possible. not formally integrated into NHS England’s body of work37. Taskforce. Given the importance of timely, appropriate,
in 201525. Further to this, they have early presentation31. Public Health England ran a However, currently it is difficult to measure In particular, the group recently published the lung cancer treatment as early on in the lung cancer pathway, it is
recently published an implementation new awareness campaign in 201626 following the whether the guidelines are fully adopted service specification or ‘whole cancer pathway’ essential that efforts are taken to tackle this barrier.
plan which tracks progress against the success of previous campaigns on the signs and locally and their current effectiveness for for England38. Having an established pathway was As our survey shows, 84% of secondary/tertiary HCPs
plan to date30. symptoms of lung cancer, which saw an increase lung cancer, and more broadly how referral supported in the results of our HCP survey, with 60% believe regional inequalities in health and care have an
in the number of urgent referrals for suspected pathways can best be improved. Alongside believing that a standardised pathway would improve impact on lung cancer survival rates. For example,
The Cancer Implementation
lung cancer of 30% during that period compared this there are, however, existing innovation survival rates. The work of the CRG will become in England the percentage of lung cancer patients
Group should work with NHS
with the previous year32. However, this campaign programmes such as Accelerate, Coordinate, increasingly important now that there is no dedicated receiving anticancer treatment varied by hospital trust
England to ensure that the specific
has so far been focused on respiratory conditions Evaluate (ACE)35, which are exploring clinical reference group for thoracic surgery39. from 31.6% to 83.2% in 201410.
recommendations for lung cancer
as a whole rather than on lung cancer specifically. innovative approaches to achieving rapid
from the report of the Independent NHS England should consider how to integrate the Lung The Department of Health should work with the National
diagnosis, including referral pathways.
Cancer Taskforce are delivered as a Following the results of the most recent national Cancer CRG within existing frameworks and support the Institute for Health Research and the National Lung
priority within the group’s programme awareness campaign, Public Health England The Department of Health should implementation of the CRG whole lung cancer pathway. Cancer Audit to launch a pilot data programme to assess
— and also ensure that lung cancer is should commit to introducing dedicated public commission an annual national audit, and address local variation for lung cancer treatment.
appropriately prioritised in delivering awareness campaigns for lung cancer annually structured on the findings from the ACE
against the wider recommendations. and set a new target to double the percentage programme’s assessment of NHS England’s
of people diagnosed at stage I of the disease in referral routes, to assess cancer referral in
the next five years. England for the most common cancer types
including lung.
PREVENTION AWARENESS PRESENTATION REFERRAL DIAGNOSIS TREATMENT
2 4 6 8 10
As identified by the UKLCC survey, The Department of Health currently do not As in recommendation 5, there are already Evidence shows that the number of those diagnosed at Despite the majority of patients in England being
smoking cessation services are one of commission a national screening programme existing initiatives and bodies which are an early stage is key to improving survival rates. It is also discussed at an MDT level, only 77.5% had access to a
the key ways to improve survival, not for lung cancer following the 2006 negative looking to optimise the referral, diagnostic and crucial, however, that there is sufficient capacity to deal lung cancer nurse specialist in 2014, worse still this varies
only by preventing cases from arising in recommendation from the UK National Screening treatment pathways. The ACE programme, as with increasing demands in order to deliver against this from 33.7% to 100% across the country10. More needs
the first place, but by improving survival Committee33. This, however, is due to be reviewed well as looking at referral, is examining overall ambition. Cancer services are under significant strain, in to be done to enhance MDTs and the core roles within
outcomes for those newly diagnosed who following the results of the NELSON trial. In the lung cancer diagnostic pathways and plans particular radiology and medical oncology, with the total them, which have a significant impact on both a patient’s
currently smoke through helping them to meantime, the UK Health Technology Assessment to support six pilots in England to trial new number of CT scans, for example, having doubled in the experience of care and their overall outcomes.
quit as soon as possible — however such programme funded the UK Lung Cancer one-stop diagnostic pathways36. past 10 years40,41.
The Department of Health should work with
services are threatened by cuts in local Screening Trial (UKLS)17. This trial screened at
The Department of Health should utilise The Department of Health should work with the National commissioners to ensure local MDT structures and
budgets12. risk individuals from trusts participating in the
the recommendations from the ACE Cancer Institute to offer research funding towards processes are in line with those recommended in
programme, and successfully identified individuals
The Department of Health should programme to optimise the referral, projects aimed at developing cost-benefit assessments the Lung Cancer CRG’s whole lung cancer pathway,
at an early stage of the disease, 80% of whom
work with local authorities to ring- diagnostic and treatment pathway for lung of diagnostic tools for lung cancer, ensuring that immediately prioritising the elements highlighted
were eligible for surgical interventions17.
fence budgets for smoking cessation cancer (as recommended above). diagnostic services are optimised and not put under in Principle 9 of this report. As well as this it should
services, to ensure these do not come The UK National Screening Committee should strain. In the immediate term, commissioners should ensure that all patients have access to a lung cancer
under threat amidst increasing budget consider evidence from local initiatives already take the necessary steps to ensure there is adequate clinical nurse involved in all aspects of their care,
pressures. undertaken, such as UKLS and ECLS, amidst diagnostic capacity to meet the demand of clinicians as recommended in Principle 10.
its review of the effectiveness of lung cancer and patients.
screening. Alongside this, the UK Health
Technology Assessment programme should
continue investment in local lung cancer
screening pilots to build an evidence base
for a national programme.16 25 by 25 17 25 by 25
Scotland:
Meeting the 25 by 25 ambition
In 2014 alone, there were 4,117 deaths caused by lung cancer,
representing over a quarter of all cancer related deaths7 and
resulting in the poorest survival outcomes of any other cancer
type in Scotland.
The UKLCC has welcomed steps of symptoms and therefore It is clear that positive steps have In order to make the next steps
in Scotland to tackle inequalities, encourage early diagnosis. been taken over the last few years to improve five-year survival for
improve prevention, and ultimately The latest statistics also show to improve outcomes for patients. lung cancer and meet the UKLCC’s
improve outcomes for those
diagnosed with cancer. Most
that the percentage of lung cancer
patients diagnosed at the earliest
Lung cancer has The percentage of However, we know that momentum
needs to be maintained in order to
25 by 25 ambition, a number of
recommendations for Scotland have
recently Scotland published a new stage has increased by 24.7% since the poorest all patients seen deliver substantive improvements been set out below based on the
plan for cancer services, Beating its launch45 against current survival statistics and UKLCC’s survey findings and the most
Cancer: Ambition and Action42, which ——NHS Scotland has supported a
survival by a lung cancer consistently deliver a high standard recent data and evidence.
positively had a strong focus on screening study, ECLS, which is outcomes of any clinical nurse of care. For example, the number
Overall, these focus on ensuring
improving early stage diagnosis and trialling a new blood test called of patients discussed at MDT level
preventing cases from arising in the Early CDT-Lung, to test whether other cancer type has increased by has slightly decreased from 97.4%
that lung cancer is appropriately
prioritised in the future and that the
first place. However, despite being
the biggest cancer killer in Scotland,
small lung cancers can be detected in Scotland7 80.9% in 2013 to in 201346 to 93.6% in 201410 and
long-term survival still falls behind
Scottish government and relevant
before they cause any issues organisations continue to undertake
there were no dedicated actions amongst those who are at risk18 84.2% in 201410 the best performing countries
efforts to ensure those with lung
in the plan for lung cancer. Quality in Europe.
With regards to treatment itself: cancer are treated in a way that
Performance Indicators (QPIs) were
ensures their chances of surviving
also published in 2012 to support ——The percentage of all patients seen
for as long as possible.
commitments against specific by a lung cancer clinical nurse has
tumour groups, first seen in increased by 80.9% in 201346 to
Better Cancer Care: An Action Plan43, 84.2% in 201410 9.8%
and these are updated annually. ——The percentage of NSCLC patients
Further to this, there are 13 dedicated receiving surgery has also
QPIs for lung cancer, including
indicators related to MDT meetings,
increased from 15.7% in 201346
to 21.7% in 201410 and NSCLC Patients Five year survivaL
pathological diagnosis and surgical
resection in non-small cell lung
patients at stage I or II having discussed at MDT (2007-2011)7
surgery has increased from 45.5%46
cancer. to 63.1%10 during the same period level decreased
The Scottish Government has from 97.4% in
introduced a number of measures 31.5%
on prevention in line with a national 201346 to 93.6%
ambition to ensure patients present in 201410
as early as possible in order to have
the best chance of survival: One year survival
——The Scottish Government has (2007-2011)7
placed a large amount of resource
on supporting a reduction in
smoking rates, most recently
evidenced in the publication of
Creating a tobacco-free generation Lung cancer
in 201344 represents over 4,117 deaths
——The Detect Lung Cancer Early
programme was launched in 2013, 25% of all cancer caused by lung
aiming to improve awareness related deaths7 cancer in 2014718 25 by 25 19 25 by 25
PHASE 1
Fundamental steps to meeting a new ambition: 2016-2018
Recommendations:
1 3 5 7
The Scottish Government published the latest cancer Despite marginally meeting its ambition to increase The Scottish Government use the Scottish urgent referral Variation in outcomes exists in Scotland as does throughout
strategy Beating Cancer: Ambition and Action42 in 2016. diagnosis for lung cancer patients at the earliest stage guidelines47 to facilitate appropriate referral between the UK, with mortality rates varying by up to 20% across the
However, whilst the UKLCC welcomed the actions and (stage I) by 25% by 2015 when first launched, it is still very primary and secondary care for patients with suspected three different regions in Scotland in 20147.
recommendations, we were disappointed that there were no positive that Detect Lung Cancer Early increased this number cancer. However, as with the NICE guidelines, it is difficult to
The Scottish Government should work with the National
dedicated actions for lung cancer. to 24.7%45. measure whether the guidelines are fully adopted locally and
Institute for Health Research to launch a pilot UK data
their effectiveness in improving lung cancer care specifically.
The Scottish Cancer Taskforce should publish annual The Scottish Government should continue to invest programme to assess and address local variation for lung
Existing innovation programmes such as ACE35 aim to
reports to assess progress made in delivering the in the Detect Lung Cancer Early programme and set a new cancer treatment.
explore innovative approaches to achieving rapid diagnosis,
ambitions set out in Beating Cancer: Ambition and Action early-stage diagnosis ambition for the next five years.
including new referral pathways.
and set targeted recommendations accordingly.
The Scottish Government should commission an annual
national audit, or work with other UK bodies as part of
the National Lung Cancer Audit in order to assess cancer
referral in Scotland for the most common cancer types
including lung, and provide targeted recommendations
on how the pathway can be improved and whether the
Scottish urgent referral guidelines need to be updated
as a result.
PREVENTION AWARENESS PRESENTATION REFERRAL DIAGNOSIS TREATMENT
2 4 6 8
The Scottish Government should continue to promote Scotland has made great progress in investing in local The national standard from decision to treat until first Whilst positive that the percentage of patients discussed
smoking cessation services, following the publication of programmes to demonstrate the value of lung cancer treatment for all cancers is 31 days7. However the UKLCC’s at MDT level has increased from 86.1% to 97%48 from
Creating a tobacco-free generation44 and most recently screening and current initiatives consider the cost- survey found that from the lung cancer patients surveyed, 2008 to 2013, this has now decreased to 93.6% in the last
Beating Cancer: Ambition and Action42, both to prevent future effectiveness of current screening methods versus the 43% waited over one month to initiate treatment after a year alone10. As an essential part of high quality care for
cases, and to improve survival for those who smoke and possible alternatives. diagnosis was confirmed. More needs to be done to optimise all patients, the relevant organisations need to work with
have recently been diagnosed with lung cancer. treatment as well as referral and diagnostic pathways in Trusts to ensure that MDTs are utilised to the greatest
NHS Scotland should establish local screening initiatives,
order to achieve the best outcomes possible for patients. degree possible.
The Scottish Government should commit to providing utilising the £5 million announced in Beating Cancer:
As well as QPIs, there are other existing programmes such
adequate resources in order to meet its ambition of Ambition and Action42 for addressing health inequalities. Healthcare Improvement Scotland should work with
as ACE which consider referral and overall lung cancer
reducing prevalence of smoking to 5% or less in Scotland Trusts to ensure at a minimum that 95% of patients
diagnostic pathways that can be utilised in Scotland.
by 2034, as set out in Beating Cancer: Ambition and are discussed at MDT level in line with the standard
Action, and also commit to reviewing progress against NHS Scotland should explore the possibility of outlined in the lung cancer quality performance indicator.
meeting this ambition annually. introducing a pilot ACE programme in Scotland following The Scottish Cancer Taskforce in their review of the QPI
the initial results in England. The Scottish Cancer for lung cancer should include the recommendations for
Taskforce should also conduct an assessment of the MDTs outlined in Principle 9 of this report to optimise
current QPIs for lung cancer and publicly consult on survival at the point of treatment.
a refreshed set of standards.20 25 by 25 21 25 by 25
Wales:
Meeting the 25 by 25 survival ambition
Over recent years, significant steps have been taken in Wales to improve outcomes
for those diagnosed with lung cancer. With the worst survival outcomes in
comparison to any other cancer type, accounting for almost 22% of all cancer
deaths in 201349, the Welsh Government have identified lung cancer as one
of five national cancer priority areas and in 2014 made the first necessary steps
to improve survival outcomes for Wales’ biggest cancer killer.
Most significantly, lung cancer was ——Welsh Government and Macmillan However, despite improvements, By utilising both the existing
a core focus of the Together for Cancer Support launched the gaps still exist, leading to patients evidence, and the results from our
Health: Cancer Delivery Plan, and second cancer patient experience not always receiving the best care UK-wide survey, the UKLCC have
has featured in the last two annual survey in July 2016 to gain insight possible. For example, over 10% set out specific recommendations
action plans which support its into people’s experiences of cancer Over 10% of lung only 12% of of lung cancer patients still do not across the patient pathway for Wales,
implementation. In the 2014 annual care, what is working and what cancer patients patients across have access to a clinical nurse tailored from the UK principles, in
report, it was noted that there was a areas need to improve, and to specialist (88.0% in 2014) and order to take the necessary next
need to focus on improving outcomes better understand the clinical and still do not Wales diagnosed regional variation is still high10. Most steps to improve long-term survival
for patients by exploring awareness
campaigns and improving access
non-clinical needs of people with
cancer in Wales55
have access to at stage I49 worryingly, a significant proportion
of men and women diagnosed with
in Wales.
This includes ensuring that lung
to curative treatments, research ——Since 2014, 99.6% of patients have a clinical nurse lung cancer still present at a late
cancer remains a focus for the Welsh
and stratified medicine initiatives50. been discussed at MDT level, which stage of the disease (III or IV), with
In the 2015 annual report, lung is a key way to ensure that patients specialist10 only 12% of patients across Wales
Government and local health boards
in the refresh of the strategic Wales
cancer similarly remained one of the have the best possible experience diagnosed at stage I, immediately
Cancer Delivery Plan 2016 -2020,
five national priorities for the cancer and care10 reducing their chances of long-term
health board annual reports and
implementation group, with the report ——Treatment levels have also 99.6% of patients survival49. Compounding this, the
intermediate term plans. In particular,
focusing on increasing access to key increased with the number number of NSCLC patients receiving
workers and introducing a second of people with NSCLC stage have been chemotherapy ranged from 33.3% to
relevant health bodies should
continue to shine a spotlight on the
patient experience survey51. IIIB/IV and PS 0-1 receiving
chemotherapy increasing from
Lung cancer discussed at MDT 87.5% across health boards in 201410.
signs and symptoms of lung cancer,
The UKLCC has welcomed efforts
to deliver against these ambitions
56.4% between 2011 and 201346 causes 22% of all level10 Whilst significant improvements have
been made, more urgently needs
which we know from our survey is
essential in order to improve survival
to 61.1% in 201410
to improve long-term survival.
——A number of regional cancer cancer deaths in to be done to improve long-term rates, and make the necessary
These have included focusing on survival with Wales ranked 28th out additional steps to ensure patients
early diagnosis and making positive
diagnostic work programmes Wales49 the 29 countries assessed in the last present as early as possible.
have been undertaken across
steps to ensure that patients’ quality European wide comparison study58. Crucially, whilst the Welsh
Wales, such as the Cwn Taf Early
of care and treatment is optimised Government has already made great
Stage Cancer Diagnosis Model56
and equitable across Wales: steps early on in the patient pathway,
——The ‘One Wales’ interim
——NHS Wales launched a new public it needs to now also increase
commissioning process was 6.6% efforts to ensure that patients are
awareness campaign, ‘Be Clear introduced to facilitate equitable
on Cancer’, to help raise awareness access to treatments deemed
28 referred, diagnosed and have the
of the signs and symptoms of lung best course of treatment initiated
effective for cohorts of patients
cancer running from July - August which do not have a positive Wales ranked Five-year survival as quickly as possible. Alongside
such improvements, it remains
201652. Previous campaigns had technology appraisal from the (2002-2006)59
only focused on the risk factors National Institute for Health and 28th out the fundamental to tackle variation
across Wales.
of lung cancer, such as Stop
Smoking Wales53
Care Excellence57
29 countries
——The Lung Cancer initiative was assessed in the 26.5%
launched in South Wales with
the aim to increase survival for last European
lung cancer patients, with later
ambitions to introduce the initiative
comparison One-year survival
across the whole of Wales in 201754 study58 (2006-2010)6022 25 by 25 23 25 by 25
PHASE 1
Fundamental steps to meeting a new ambition: 2016-2018
Recommendations:
1 3 5 7 9
Lung cancer has been a named priority in the last two Wales currently has national screening programmes for Wales have National Cancer Standards, The Together for Health annual Wales has made substantial steps
annual reports of the Together for Health: Cancer Delivery breast, bowel and cervical cancers61. However, despite including standards for lung cancer, report for 201550 announced the to ensure that almost all patients
Plan. The current plan runs until 2016, and as such causing more deaths than breast and bowel combined49, which were originally introduced in establishment of a cancer innovation are discussed at MDT level (99.6%),
will be refreshed by the Welsh Government’s Cancer there is no screening initiative available for lung cancer. 2005 as a means to demonstrate best pathway programme, with the first however access to specialist nurses
Implementation Group. Similarly, local health board The Welsh Government will consider the introduction of practice in care and treatment64. flagship programme dedicated to lung still varies from 39.1% to 99% across
cancer delivery plans, which were developed as part of the such a programme following advice from the UK National cancer. The programme aims to learn the country10.
The Welsh Government should carry
recommendations in Together for Health, also run up until Screening Committee and the Welsh Screening Committee, from existing and new improvement
out a public consultation on the The Welsh Government should work
2016, and will be due to be re-assessed and updated. both of which are awaiting for evidence from the NELSON projects in order to reduce the
current National Cancer Standards to ensure there is necessary support
trial. The Welsh Government stated that it will consider new inequality of care and outcomes.
In order to build on the momentum already made, for Wales, and commit to updating at a local level for MDTs, ensuring
evidence as soon as it becomes available62. In the meantime,
it is essential that lung cancer remains a priority in the them based on the recommendations The Welsh Government should that their structures are in line with
the results from existing local screening trials should be
new iteration of the national and local cancer delivery provided. commit to delivering against the those recommended in Principle 9
evaluated and new local programmes in the immediate term
plans. The Welsh Government and local health boards recommendation to introduce a of this report. Further to this,
should be introduced.
should also commit to publish annual reports and action flagship innovation pathway for lung it should ensure that all patients have
plans against the new plan/(s) which tracks progress Health and Care Research Wales should fund a local cancer, and publish a timeline of when access to a lung cancer clinical nurse
of delivery. screening initiative to build the evidence base for lung the results of the pathway will be involved in all aspects of their care,
cancer screening programmes, utilising evidence from published. as recommended in Principle 10.
the results of existing local lung cancer screening studies
in the UK, such as UKLS and ECLS, when making future
recommendations for lung cancer.
PREVENTION AWARENESS PRESENTATION REFERRAL DIAGNOSIS TREATMENT
2 4 6 8
NHS Wales positively ran a national Be Clear on Cancer Both the Welsh Government and the Department of Health The UKLCC’s survey identified that In Wales, as across the UK, there is
campaign from July - August 201652, and such efforts promote the use of the NICE urgent referral guidelines63 access to investigative tests and still a significant amount of regional
need to be continued. as a key resource for patients with suspected cases of referral are still the greatest delays to variation in access to treatment, which
cancer. However, currently it is difficult to measure whether rapid diagnosis, with 36% of patients we know impacts overall outcomes.
Following the results of the Be Clear on Cancer campaign,
the guidelines are fully adopted locally and their current surveyed waiting over one month For example, the proportion of NSCLC
NHS Wales and Public Health Wales should commit to
effectiveness for lung cancer specifically. Alongside this, for a definitive diagnosis after initial patients who had surgery across Wales
refreshing this campaign annually at a national level.
there a number of diagnostic pathways across Wales suspicion of cancer and 17% waiting in 2014 varied by over two-fold (8.7-
Local health boards should also outline specific measures
assessing new innovative ways to optimise early diagnosis over two months. Attempts to rectify 19.6%)10.
to promote this campaign locally or introduce separate
and referral in response to new evidence from Denmark56. delays in diagnosis are underway in
initiatives to raise awareness of the signs and symptoms The Welsh Government should
Wales through The Outcomes Focused
of lung cancer. The Welsh Government should assess findings from new work with the National Institute for
Partner Project which has a specific
cancer diagnostic models being implementing in Wales, Health Research and National Lung
aim to improve the lung cancer
such as in Cym Taf, in order to update existing referral Cancer Audit to launch a pilot data
diagnostic pathways65.
guidelines. programme aimed at assessing and
The Welsh Government should addressing local variation for lung
commit to delivering a review of cancer treatment.
cancer diagnostic services in Wales,
as stipulated in the Together for
Health annual report for 2015, with a
focus on lung cancer diagnosis.24 25 by 25 25 25 by 25
Northern Ireland:
Meeting the 25 by 25 ambition
Lung cancer causes more than one in five of all cancer-related
deaths, is the biggest cancer killer in Northern Ireland66 and
presents an average of 1,165 cases a year67.
In 2011, there was a renewed focus Over the last few years the UKLCC Furthermore, and despite efforts Below are the recommendations for
on cancer services in the publication has welcomed initial efforts to tackle to improve diagnosis at an earlier Northern Ireland, aimed at combatting
of the Service Framework for Cancer these identified challenges: stage, 50.9% of cases from 2010- poor survival in lung cancer, alongside
Prevention, Treatment and Care66. ——In 2015, the Public Health Agency 2014 involved the latest stage of the the UK principles, to meet The 25 by 25
This set out specific standards (PHA) launched the ‘Be Cancer Access to lung Access to lung disease (stage IV)67, which results in ambition. Northern Ireland has identified
of care for different cancer types, Aware’ campaign, created to cancer key cancer key a far poorer chance of survival than tackling prevention and encouraging
including lung, focusing on smoking raise awareness of the signs and when a diagnosis is made at early diagnosis as key priorities.
prevention, appropriate use of CT symptoms of cancer, with a phase workers has worker has an earlier stage. As such, the recommendations below
Scans in suspected cases and
radiotherapy. Prevention was also
for lung cancer specifically71
——The publication of the cancer
dropped 20%73 decreased from Overall it is difficult to definitively
are aimed at building on these initial
first steps and setting new ambitions
track progress in all areas of care as
a core focus in Transforming Your patient experience survey was 60% to 40% from there has not been a comprehensive
for the future. They are also aimed at
Care68, a review of health and social also welcomed, as it acts as a creating a renewed focus on giving
care services published in 2011, key way to help improve services 2014 to 201573 assessment of services since 2007,
patients the best chance of survival
and Northern Ireland has been unable
which highlighted that around and patients’ overall experience from the point of seeing their doctor
to submit data for the National Lung
340,000 people aged 60 and over of care72 — optimising referral, diagnostic and
Cancer Audit. Positively, however, a
smoke, and proposed measures Whilst there have been some positive treatment pathways.
new audit is underway and is due for
to introduce further controls on steps identified, gaps in care and publication in 2016.
tobacco usage68. Similarly, in services were highlighted in the most
Making Life Better, a 10-year public recent peer review of lung cancer
health strategy published in 2014, services, which tracked adherence
preventing smoking was a key focus against Commissioning for Quality
in improving health and wellbeing69. and Innovation (CQUIN) measures. 10.5%
One of the first main assessments of Northern Ireland performed well 2,400 avoidable 45% of lung
current care was in Monitoring care against measures for MDT review and deaths each year cancer cases
of lung cancer patients in Northern adherence to clinical guidelines and
Ireland, published in 2009, which treatment pathways. However, the due to smoking68 are discovered Five year survival
compared the lung cancer care percentage of lung cancer patients
having access to a key worker has
when patients (2005-2009)67
received by patients during 1996
and 2001. The report found positive decreased from 60% to 40% from visit Accident and
2014 to 2015 and no MDT meeting
improvements including patients
presenting earlier, use of more was recorded as meeting a quorum Emergency66 34.8%
complex imaging and increased of 95% or more as recommended73.
equality of service access and In line with priorities to reduce
increased referral rates. However, smoking rates, it is encouraging that
a significant proportion of patients Northern Ireland has kept this as a One year survival
were still being diagnosed at a late focus through promotion of smoking (2010-2013)67
stage, and subsequently survival cessation services, and has reported
rates were still poor70. As such, the against progress annually. Whilst it
report recommended efforts to was welcomed in the most recent
promote earlier diagnosis, through publication by PHA that 21,779
better recording of disease stage and people set a quit date through such Biggest cancer 50.9% of cases
increased surgical, radiotherapy or services, this in fact represented a
decrease of 5,091 (19%) on the same
killer in Northern diagnosed at
chemotherapy treatment.
period in 201574. Ireland66 late-stage67You can also read
