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 2016
2                                                                                                              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.uk
4                                                      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 clinic
12                                                                                             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 England24
14                                                                                                                                         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 20147
18                                                                                                                    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)60
22                                                                                                                  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-stage67
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