Lung cancer is the biggest cause of premature death in Greater Manchester. The Multi-Disciplinary Lung Cancer Team, led by Dr Richard Booton at the North West Lung Centre, Wythenshawe Hospital, has therefore spent the last two years dedicated to transforming its lung cancer pathway.
This has involved the complete redesign of the specialist and complex service, to what is now known as the RAPID (Rapid Access to Pulmonary Investigation and Diagnosis) Programme.
Lung cancer diagnosis is complex and requires multiple tests. The current cancer pathway targets set a maximum waiting time of 62-days from patient referral to treatment – and also sets a target of 85% compliance. Yet, across the UK these targets are not being met.
The core aim of the RAPID Programme was therefore to speed up access to diagnostics, eliminate unnecessary delays, and improve the experience and quality of care for patients with suspected lung cancer – potentially resulting in improved survival. Our overarching vision was to provide the type of care we would expect for our own families and loved ones.
Central to the RAPID Programme is next-day access to CT imaging (following a referral for suspected lung cancer) – together with same-day hot reporting and clinical review. In patients that do not have lung cancer, this significantly reduces the anxiety of ‘not knowing’. For those in whom lung cancer is suspected we can immediately commence a protocolised investigation pathway consisting of test bundles. This requires a dedicated patient navigator to coordinate appointments from multiple departments – which involved a great deal of collaborative working and good communication. Daily percutaneous image guided biopsy and daily EBUS services maintain the ‘next day ethos’ of the service. We also undertake a daily virtual board round of all patients on the pathway so that any test results are viewed and timing of MDT discussion and follow-up is appropriately planned. However, setting up the Programme was not without its challenges. The Programme has no control over access to PET scanning and lack of PET provision on-site prevented same-day planning for necessary tests.
The introduction of the RAPID programme has dramatically enhanced the efficiency of the front-end of the lung cancer pathway. Prior to this, of those in the 2-week referral pathway, 0% of patients had their CT scan within four days; 27% had a CT scan within seven days and 74% within 14 days. Following the implementation of the RAPID Programme, 78% of patients now have their CT scan within four days; 92% within seven days and 99% within 14 days.
In addition, we have also shortened the diagnostic pathway for lung cancer such that 8%, 42%, and 77% of referrals are discussed at MDT – with completed investigations by day 7, 14 and 21, respectively. This compares with 0%, 8% and 17% prior to the introduction of the RAPID Programme. As a result, 40% of patients received surgery within 14 days of the MDT meeting and we are now working to establish appropriate working practices within thoracic surgery and medical oncology to improve this even further.
With 93% of patients now rating the service delivered through the RAPID Programme as eight out of ten or better, this has confirmed a real improvement in care and an accelerated service for the benefit of patients and their families.
For more information about the RAPID programme and its successes, read our Millimetres Matter report at: https://www.uklcc.org.uk/our-reports/ or contact Dr Matt Evison firstname.lastname@example.org or Dr Richard Booton email@example.com directly.
For the last ten years, lung cancer has consistently been the UK’s biggest cancer killer. 1,2 In 2014 alone, it was the cause of almost 35,900 deaths,3 which is more than breast4 and bowel cancers combined.5
The UK Lung Cancer Coalition (UKLCC) was set up in 2005 with the founding ambition to tackle poor lung cancer survival – and specifically to double five-year survival by 2015. As a result of efforts to improve long-term survival by the UK nations over recent years, estimates now suggest that the UKLCC’s original vision has effectively been met in England6 – with improvements also seen in Scotland,7 Wales8 and Northern Ireland.9
Yet, despite significant progress being made, it’s vital we do not become complacent. Compared to other major common cancers, lung cancer is still not prioritised as it should be – resulting in wide variations in care10 – and UK five-year survival rates fall severely behind other developed European countries.11
Consequently, our latest report, 25 by 25: a ten-year strategy to improve lung cancer survival rates, calls for a redoubling of effort by governments and the lung cancer community to improve outcomes for patients even further. As the title suggests, our latest ambition is to increase five-year lung survival rates across the UK to 25 per cent within the next decade. If achieved, from 2025 onwards this will result in at least 4,000 deaths prevented within five years of diagnosis each year – or over UK 11,000 deaths prevented per year overall
To determine how to meet this goal, 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 UK-wide surveys within the lung cancer community, as well as among patients.
Based on these insights, this report contains a series of UK-wide principles as well as specific set of actions to improve five-year survival rates in England, Northern Ireland, Scotland and Wales. Key recommendations include the establishment of a UK-wide taskforce in line with European best-practice; launching pilot data programmes to assess and address the significant variation in five-year lung cancer survival; a comprehensive audit to improve waiting times; and the introduction of UK-wide screening for all at-risks groups.
We hope very much that the launch of this report helps breathe new energy and enthusiasm into a cancer community which recognises that there is much more work to be done. A lung cancer diagnosis should not be a death sentence and we hope that governments, policy makers and health professionals in England, Scotland, Wales and Northern Ireland can support the UKLCC’s ‘25 by 25’ ambition.
Mr Richard Steyn
Chair of the UKLCC
Consultant Thoracic Surgeon and Associate Medical Director, Surgery, Heart of England NHS Foundation Trust.
1.Office of National Statistics, Cancer Incidence and Mortality, 2007-09, March 2012. Accessed September 2016 via: http:// webarchive.nationalarchives.gov.uk/20160105160709/http://www.ons.gov. uk/ons/rel/cancer-unit/cancer-incidenceand-mortality/2007-2009/cancer-incidenceand-mortality–tables-and-charts.xls
2.Cancer Research UK, Cancer Mortality for Common Cancers. Accessed September 2016 via: http://www.cancerresearchuk.org/ health-professional/cancer-statistics/mortality/common-cancers-compared#headingZero
3.Cancer Research UK, Lung Cancer Mortality Statistic., Accessed September 2016 via: http://www.cancerresearchuk.org/healthprofessional/cancer-statistics/statistics-bycancer-type/lung-cancer/mortality
4.Cancer Research UK, Bowel Cancer Statistics. Accessed September 2016 via: http://www.cancerresearchuk.org/healthprofessional/cancer-statistics/statistics-bycancer-type/breast-cancer
5.Cancer Research UK, Breast Cancer Statistics. Accessed September 2016 via: http://www.cancerresearchuk.org/healthprofessional/cancer-statistics/statistics-bycancer-type/bowel-cancer
6.Walters S, Benitez-Majano S, Muller P, et al., ‘Is England closing the international gap in cancer survival?’ Br J cancer, 4 S 2016, doi: 10.1038/bjc.2015.265. Accessed September 2016 via: http://www.nature.com/ bjc/journal/vaop/ncurrent/pdf/ bjc2015265a.pdf
7.ISD Scotland, Cancer Statistics. Accessed September 2016 via: http://www.isdscotland.org/Health-topics/cancer/cancer-Statistics/ Lung-cancer-and-Mesothelioma/#lung
8.Welsh cancer Intelligence and Surveillance Unit, Cancer in Wales 2001 -2014. Accessed September 2016 via: http://www.wcisu. wales.nhs.uk/opendoc/257912
9.Northern Ireland Cancer Registry, Lung, Trachea, Bronchus: Mortality 1993-2013. Accessed September 2016 via: http://www.qub. ac.uk/research-centres/nicr/cancerInformation/official-statistics/bySite/ lungTracheabronchus/
10.Royal College of Physicians, National Lung Cancer Audit (2014 audit period), 2015. Accessed September 2016 via: https://www.rcplondon.ac.uk/file/2280/ download?token=IdceLmHa
11.R De Angeli et al, ‘Cancer survival in Europe 1999–2007 by country and age: Results of EUROCARE-5—A population-based study’, Lancet Oncology 2014, 15(1), pp.23-34
Lung cancer is by far the UK’s biggest cancer killer, causing more deaths in males and females than breast and bowel cancer combined. Despite this, we know that lung cancer doesn’t get the prioritisation it deserves – receiving less than four per cent of all current UK cancer research funding.
With the UK in some instances still lagging behind our European counterparts in survival rates, we know that more can, and should be done to improve survival for those diagnosed with lung cancer – 1300 deaths from lung cancer alone could be avoided each year if the UK survival rates matched the European average.
The UK Lung Cancer Coalition (UKLCC) – the country’s largest multi-interest group in lung cancer – was established in 2005 with the primary goal to address this challenge, specifically to double five year survival rates for lung cancer by 2015 – and we are delighted that estimates now suggest that we have met this goal in England, with improvements also seen in Scotland, Wales and Northern Ireland.
The UKLCC has campaigned tirelessly with health professionals, health organisations, cancer networks, royal colleges, parliamentarians and governments to give people diagnosed with lung cancer new hope for survival. Through a variety of activities, including the publication of a number of ground-breaking UK reports – people with lung cancer in the UK are now far more likely to survive five years after being diagnosed with lung cancer than they were ten years ago. But we know that we can do better.
The UKLCC is now looking to set a new UK five year survival ambition for lung cancer and has launched a series of nationwide surveys to gather information from patients, carers and healthcare professionals on what can be done to ensure that people diagnosed with lung cancer have the best chance of survival.
We know that the key to setting this new ambition, is to hear the views of those with experience of lung cancer and those who care for such individuals, including carers and health care professionals. Wherever appropriate, we want to encourage people to fill in the survey and tell us what they think. We want their voices to be heard and, ultimately, set a new ambition for survival.
The survey is now available on our website and the results will be shared later this year. Please share this link http://www.uklcc.org.uk
Professor Mick Peake
Honorary Consultant and Professor of Respiratory Medicine,
University of Leicester
Clinical Lead, National Cancer Registration and Analysis Service (NCRAS),
Public Health England
Mr Richard Steyn
Consultant Thoracic Surgeon; Associate
Medical Director – Surgery, Heart of England NHS Foundation Trust
Honorary Associate Professor, University of Warwick & Chair of the UKLCC
Cancer Research UK, Cancer mortality for common cancers: Twenty most common causes of cancer death. Accessed April 2016 via: http://www.cancerresearchuk. org/health-professional/cancer-statistics/mortality/common-cancers-compared#heading-Zero
National Cancer Research Institute, Cancer research Spending in the UK 2002-2011: An overview of the research funded by NCRI Partners, 2013. Accessed April 2016 via:http://www.ncri.org.uk/wp-content/uploads/2013/11/2013-NCRI-cancer-research-spend-Uk-2002-2011.pdf
R De Angeli et al, ‘Cancer survival in Europe 1999–2007 by country and age: results of EUROCARE-5—a population-based study’, Lancet Oncology, 2014, 15(1), pp.23-34
Department of Health, Campaigns to promote earlier diagnosis of cancer (Gateway Ref: 16390), August 2011. Accessed April 2016 via: https:// www.gov.uk/government/uploads/ system/uploads/attachment_data/ file/215493/dh_128972.pdf
Walters S, Benitez-Majano S, Muller P, et al., ‘Is England closing the international gap in cancer survival?’ Br J Cancer, 4 April 2016, doi: 10.1038/bjc.2015.265. Accessed April 2016 via: http://www.nature.com/ bjc/journal/vaop/ncurrent/pdf/ bjc2015265a.pdf
ISD Scotland, Cancer Statistics. Accessed May 2016 via: http://www.isdscotland.org/Health-Topics/Cancer/Cancer-Statistics/Lung-Cancer-and-Mesothelioma/#lung
Welsh Cancer Intelligence and Surveillance Unit, Cancer in Wales 2001 -2014. Accessed April 2016 via: http://www.wcisu.wales.nhs.uk/ opendoc/257912
Northern Ireland Cancer Registry, Lung, Trachea Bronchus: Mortality 1993-2013. Accessed May 2016 via: http://www.qub.ac.uk/research-centres/nicr/CancerInformation/ official-statistics/BySite/ LungTracheaBronchus/
Our new ten year report tracks progress in lung cancer services, treatment and outcomes across the UK
The UK Lung Cancer Coalition (UKLCC) is today proud to publish Ten years on in lung cancer: the changing landscape of the UK’s biggest cancer killer. This milestone report marks the ten-year anniversary of our formation and is the first-ever assessmentof the progress in lung cancer services over the past decade – and across the four UK nations.
For the first time, this report evaluates the outcomes for lung cancer patients across the UK as a whole – setting a vision for the next ten years and highlighting the vital steps which must be taken to improve outcomes for lung cancer patients for the future.
Due to the efforts of governments, policy-makers and our own membership over recent years, it is important to acknowledge that, in general, lung cancer outcomes have improved across the UK in recent years. For example, in England, five-year survival rates have almost doubled from 2004 (9 per cent) to 2013 (16 per cent predicted). This has a strong correlation with the increase in the number of surgical resections for lung cancer, from an average of 3,220 up to 2005 to 6,713 in 2013.
However, despite this, lung cancer remains the UK’s biggest cancer killer. Lung cancer accounts for more than one in five (22%) of all UK cancer cases in men and women, which is more than breast, bowel bladder and uterine cancer combined. In 2012 alone, there were over 44,500 cases of lung cancer in the UK – and significant variations in care still exist. For example, in England and Wales, the percentage of patients seen by a nurse specialist varies from 36 per cent to 100 per cent. In Scotland,anecdotal evidence suggests there is variation in access to radiotherapy services across the nation, and access to new medicines in Northern Ireland is often perceived to be poor among specialists in the field.
In addition, ten years on, the UK has some of the worst survival rates in Europe. Currently: England ranks 26 out of 29 European countries in terms of five-year survival. Northern Ireland is ranked 19th; Scotland ranks 27th and Wales has the second worst five-year survival rate for lung cancer in Europe.
The UKLCC has welcomed efforts in recent years to prioritise lung cancer at a national level – but we still aren’t where we should be. Therefore, in this report, we are making specific calls to action to the various UK governments in order to ensure that lung cancer continues to be spotlighted and that patients receive the very best care they deserve.
To see these calls and read a full copy of the report, click here: www.uklcc.org.uk
Mr Richard Steyn
Chair of the UK Lung Cancer Coalition
Consultant thoracic surgeon and Associate Medical Director, surgery, Heart of England NHS Foundation Trust
New data recently published on Cancer Research UK’s local cancer statistics website (www.cruk.org/localstats) has revealed that 1,800 non small-cell lung cancer (NSCLC) patients in England may be missing out on life-saving surgery every year. Alarmingly, nearly half of these patients are not having operations despite receiving an early stage diagnosis – which is when surgery is more likely to be successful.
According to the National Lung Cancer Audit 2013, 4,500 people with NSCLC had major surgery last year. Experts believe that surgery is responsible for around half of the cases where cancer is cured – and plays a significant role in improving lung cancer survival.
It is important to note that surgery may not always be appropriate for every patient, for example, if the cancer has already spread, the patient decides they don’t want to undergo surgery, or if the patient is too unwell to undergo an operation. However, previous research has suggested that some older patients who are eligible for surgery are being overlooked because of their age.
Lung cancer is one of the hardest cancers to treat and it is vital that we remove any barriers so that those patients who might benefit from surgery are given this option.
Ahead of next year’s General Election, Cancer Research UK has launched a new campaign ‘Cross Cancer Out’ (www.cruk.org/crosscancerout) calling on all political parties to make access to treatment a key priority if they are serious about improving cancer care and aspiring to world class cancer survival rates.
The campaign will focus on a number of key commitments aimed at improving cancer survival in the UK. These include equal access to innovative radiotherapy, surgery and effective cancer drugs – including new targeted therapies; and continued support for campaigns to raise public awareness of the signs and symptoms of cancer in order to drive earlier diagnosis.
We hope parliamentarians get behind our campaign and help provide lung cancer patients with the treatment and care they deserve.
Head of Policy Development
Cancer Research UK
Cancer Research UK is a member of the UK Lung Cancer Coalition. www.uklcc.org
As the UK Lung Cancer Coalition (UKLCC), we recognise the importance and need to drive policy and service change not only in England – but across the UK nations.
Today, parliamentarians in Scotland, Northern Ireland and Wales will receive a report outlining the burden of lung cancer in their respective countries – using the latest data on patient outcomes and quality of care.
Lung cancer remains the biggest cancer killer in Scotland, Northern Ireland and Wales.1,2,3 It is responsible for approximately a quarter of all cancer deaths.1,2,3 The three nations have some of the worst five-year lung cancer survival rates in Europe.4
In Scotland, lung cancer still remains the most common cancer; in Wales lung cancer has increased in women by more than a third; and in NI lung cancer related death is five and a half times higher in the most deprived areas of the country than it is in the least deprived.5,3,2
To help improve lung cancer services and patient outcomes, the UKLCC is calling for parliamentarians and key policymakers to take specific actions in their respective countries. These include increasing public awareness of the signs and symptoms of lung cancer; scrutinising the lack of action by governments to improve cancer survival rates; and publishing performance figures on local lung cancer services.6,7,8
The UKLCC strongly believes that improvements in lung cancer services can only be achieved through co-ordination and collaboration within and between the UK nations.
To read the reports sent to officials and parliamentarians in Scotland, NI and Wales, click here.
Consultant Thoracic Surgeon, Birmingham Heartlands Hospital
Honorary Associate Professor University of Warwick
Chair of the UK Lung Cancer Coalition
1. ISD Scotland, Cancer incidence and mortality in Scotland by site/type of cancer, sex and year of diagnosis/registration of death: 2003-12. Available at: http://www.isdscotland.org/Health-Topics/Cancer/Cancer-Statistics/ accessed on 20 May 2014
2. Northern Ireland Cancer Registry, Number of cancer deaths and mortality rates by sex and year of death – Trachea, Bronchus & Lung (C33 C34), 2013
3. Welsh Cancer Intelligence and Surveillance Unit, Cancer in Wales. April 2014. http://www.wcisu.wales.nhs.uk/sitesplus/documents/1111/CANCERinWALESapril2014FINAL%28Eng%29.pdf
4. Cancer survival in Europe 1999-2007 by country and age: results of EUROCARE-5.December 2013
5. Cancer Research UK, Cancer incidence for common cancers, January 2014. Available at: http://www.cancerresearchuk.org/cancer-info/cancerstats/incidence/commoncancers/; accessed on 20 May 2014
6. State of the Nation: An overview of the impact and priorities for lung cancer in Wales. UK Lung Cancer Coalition, June 2014
7. State of the Nation: An overview of the impact and priorities for lung cancer in Scotland. UK Lung Cancer Coalition, June 2014
8. State of the Nation: An overview of the impact and priorities for lung cancer in Northern Ireland. UK Lung Cancer Coalition, June 2014
The United Kingdom Lung Cancer Coalition (UKLCC) is committed to providing a voice for lung cancer patients and carers, and ensuring that high quality, patient-centred services are readily accessible throughout the country.
To this end, in June and July of this year we undertook a nationwide survey to gather information about patient and carer experiences of lung cancer care and services. Without doubt, a key to improving patient outcomes is to understand what really matters to people living with lung cancer – and how their experience of living with lung cancer can be improved in the health and social care setting.
The results of our survey were sobering. Despite many respondents reporting a positive (in some cases ‘excellent’) experience of care, the findings revealed worrying discrepancies between what people expect from their local lung cancer services and the actual care and treatment they received.
Looking at a number of the survey’s key findings, for example, a large majority of respondents rated prompt access to hospital diagnostic tests as “very important”. However, only 54 per cent of those people surveyed said that this occurred through the care they, or the person they cared for, received, with only 64 per cent stating that they were referred in a timely manner.
In addition, although three quarters of the survey’s respondents described being given a care plan as “very important”, less than half (46 per cent) could confirm that they, or the person they cared for, had been offered a personalised plan with tailored treatment goals.
The general lack of support and information received by patients and carers – as well as ‘mixed levels’ of public and professional awareness about the disease – is also a concern For example, almost two-fifths (38 per cent) of respondents confirmed that they had either simply been notified that their cancer had spread or were explicitly not told about the extent to which the cancer had spread. Also, 40 per cent of respondents described the level of understanding of lung cancer demonstrated by their GP as “variable”, “not enough” or “not at all”.
These are just a number of the insights gleaned from the survey’s results, but the need to promote and embed a more patient-centred approach to lung cancer care is already very much apparent. Our new report,Putting patients first: Understanding what matters to lung cancer patients and carers’ makes a series of recommendations with such an objective in mind. These include ensuring that all lung cancer patients receive a personalised care plan and that care providers produce action plans setting out steps to improve experiences reported by patients.
We are working in partnership with policy-makers, and the NHS nationally and locally, so that all lung cancer patients in the UK can expect to receive the care and treatment that will make the biggest difference for them and their families.
To view the report in more detail, visit: www.uklcc.org
Consultant Thoracic Surgeon, Birmingham Heartlands Hospital
National Cancer Advisor & Chair of the UKLCC
Chair of the UK Lung Cancer Coalition
For the past three years, the British Lung Foundation (BLF) has been campaigning to introduce a ban on smoking in cars when children are present. Adults can make their own lifestyle choices but children often can’t and with approximately one in five children continuing to be exposed to second-hand smoke in a car, a ban is essential.
Children are particularly vulnerable to second-hand smoke as they have smaller lungs, faster breathing and less developed immune systems. This makes them more susceptible to respiratory illnesses such as asthma, bronchitis and reduced lung function and ear infections, triggered by passive smoking.
Many people do not realise that second-hand smoke in a car can rise to harmful levels even with the window open. Research shows that a single cigarette smoked in a moving car with the car window half open exposes a child in the centre of the back seat to around two-thirds of the average smoke-filled pub.
Government-run awareness raising campaigns are a welcome step, including the campaigns in April and May 2012 and again in June 2013. Yet these alone do not go far enough in achieving real behavioural change and protecting children from second-hand smoke in the car. Children still report being exposed to smoke either in their family car or in someone else’s. Children are often too scared to ask adults to stop smoking . In a BLF-commissioned survey, only 31% of children have asked their parents to stop smoking in a car, with 34% reporting feeling too frightened or embarrassed to do so.
A comparative case which shows the success of introducing legislation alongside awareness campaigns is seatbelt use in cars. After legislation was introduced alongside awareness campaigns, seatbelt wearing rates increased in the UK from 25% to 91%. It is only with a ban alongside awareness raising campaigns, that we will be able to protect as many children as possible from the dangers of second hand-smoke in cars.
Similar bans have already been introduced in 4 US states, 10 of 13 Canadian provinces, 7 of 8 Australian states, and in five countries, including South Africa (for children under 12) and Cyprus.
We need to ensure that the UK government introduces a ban on smoking in cars with children. This autumn, there is a real opportunity to do this via an amendment to the Children and Families Bill.
Actors David Harewood and Linda Robson have lent their voices to two online videos in support of the British Lung Foundation’s smoking in cars campaign.
In a break from their previous acting roles, the two videos see both actors providing voices for toddlers, highlighting the need to give a voice to one in five children in the UK who are regularly exposed to the potentially dangerous concentrations of second-hand smoke in cars.
Read more about how you can support the BLF’s campaign on smoking in cars with children here.
Lung cancer patients can now check information about the care they are accessing, after the launch of a new interactive online map. The Lung Cancer Smart Map, which shows patients how treatment and care, in their area compares against government targets, was launched recently by one of the UK Lung Cancer Coalition’s key members, the Roy Castle Lung Cancer Foundation.
The Smart Map includes the latest regional data from a range of measures recorded in the National Lung Cancer Audit (NCLA). It compares local real-world hospital data to the nationally recommended standards of care.
Hospitals have made consistent progress in treating lung cancer since the NLCA audit began in 2004 but there is still significant room for improvement and it is hoped that sharing this information will accelerate future positive change.
The Smart Map can also encourage improvements in timely referral from primary care. It includes local data from the National Cancer Intelligence Network’s (NCIN) “Routes to Diagnosis” study which showed that lung cancer patients who are diagnosed via a managed referral rather than an emergency admission have improved outcomes.
Please click on the following link to view the map: http://bit.ly/12smaPW
Jesme Fox (Mrs)
Roy Castle Lung Cancer Foundation