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
Lung cancer nurse specialists provide a vital role in caring for lung cancer patients and their families – yet they are often overstretched and their roles are being squeezed.
The role of the lung cancer nurse specialist changed significantly after the publication of the Calman Hine Report in 1995, which urged cancer services to become more patient focused and more organised.
Today, nurse specialists are engaged in the various stages of lung cancer patient experience. Some meet patients at the point of a suspected lung cancer diagnosis – providing patients with valuable support and information at an early stage, as well as a consistent point of contact through what is an incredibly stressful and uncertain time. Some nurses are very visible throughout the treatment phase – while others focus on end of life care.
However, regardless of where in the patient journey the nurse specialist is tasked, the most significant part of their job is acting as the patient’s advocate. The lung cancer nurse specialist is pivotal in representing the needs of patients at key multidisciplinary team (MDT) meetings as well as within the wider community team.
Sadly not every lung cancer patient has access to a lung cancer specialist nurse. According to the UK Lung Cancer Coalition (UKLCC), there is only one lung cancer specialist nurse (in England) for every 122 people diagnosed – and lung cancer has the second lowest provision of cancer nurse specialists in the country. This can present major challenges as nurse specialists strive to provide quality information and support to newly diagnosed and existing patients.
The value of the lung cancer specialist nurse is unarguable. Recent research has shown that, where patients are seen by a lung cancer nurse specialist within a fully-functioning multidisciplinary team (MDT), patients are more likely to have a good experience of care and this can often lead to better patient outcomes.
Indeed, the lung cancer nurse is often instrumental in mobilising community services and is often involved with symptom management whilst the patient is undergoing tests. Regular telephone contact between the nurse specialist and the patient can help alleviate some of the anxiety in the treatment process. The lung cancer nurse specialist can also ensure that any further changes in care can be put in place prior to the involvement of the oncology or surgical team. This can optimise the patient’s chance of being considered for active treatment. Nurse specialists are also often vital in providing good quality follow-up clinics.
Yet lung cancer nurse specialists do not always receive the support and recognition they deserve – and there is a shortage of this valuable resource across the country. We need to put pressure on those who have influence to ensure the role of lung cancer nurse specialists is maintained and protected.
Macmillan Lead Lung Cancer Nurse
Today sees the launch of the next phase of Public Health England’s Be Clear on Cancer campaign which aims to make people aware of the symptoms of lung cancer and encourage them to visit their GP if they have had a cough for three weeks or more. The UK Lung Cancer Coalition (UKLCC) is highly supportive of this awareness initiative and we have been working with key stakeholders over the last eight years to encourage national campaigns such as this in order to help achieve our vision of doubling lung cancer survival.
Almost 24,000 people a year in England receive a lung cancer diagnosis when the disease is at a late stage – only around 15 per cent of cases are diagnosed at the earliest stage, when treatment is most likely to be successful.
Lung cancer is currently England’s biggest cancer killer, causing around 28,000 deaths each year and with around 33,800 people diagnosed. Those diagnosed at the earliest stage are five times more likely to survive lung cancer for at least five years than those diagnosed at a late stage.
One of the reasons behind England’s low early diagnosis rate is the public’s lack of awareness about the disease and its symptoms. New data shows:
- almost three-quarters (73 per cent) of people are unaware that lung cancer is England’s biggest cancer killer
- despite the fact that lung cancer is most common in people aged over 50, one in four people (26 per cent) think that all age groups are equally at risk of lung cancer
- 40 per cent of people are unaware that a cough that has lasted three weeks or more is a potential symptom of lung cancer.
These figures show that more needs to be done to raise awareness of the signs of lung cancer and ultimately save more lives.
Despite improvements in lung cancer services in recent years, the UKLCC is acutely aware that wide variations in lung cancer treatment and care continue to persist across England and the UK and survival rates lag behind other comparable countries in Europe. To note, patients in the UK are diagnosed with more advanced disease than many other countries and almost 40% first reach specialist care via an emergency admission to hospital.,
TheUKLCC’S vision is to double lung cancer survival during the next eight to ten years, with the co-operation of health professionals, policy makers, local primary care organisations, NHS and Government. By applying the best standards already being demonstrated in the best cancer centres in Europe, we could save 3,500 lives each year
The Be Clear on Cancer campaign will see adverts – featuring real GPs – on TV, print and radio from today until mid-August. Face-to-face events will also take place in a number of shopping centres. To find out more about the campaign, visit www.gov.uk/phe
Mr Richard Steyn
Consultant Thoracic Surgeon, Associate Medical Director – Surgery, Heart of England NHS Foundation Trust
Honorary Associate Professor, University of Warwick
It is commonly acknowledged that lung cancer patients get a raw deal when compared to other cancer patients. Despite accounting for more than a fifth of all UK cancer deaths, lung cancer receives less than four per cent of all current UK cancer research funding. And despite improvements in services in recent years, wide variations in lung cancer treatment and care continue to persist across the UK. For a number of reasons, outcomes remain poor – with survival rates lagging seriously behind other comparable EU countries.
Since its formation, the UK Lung Cancer Coalition has worked tirelessly with health professionals, NHS trusts, cancer networks, Royal Colleges, parliamentarians and Government to help reduce the terrible death toll of lung cancer. It has been a major driver in encouraging hospitals to submit data to the National Lung Cancer Audit to help drive up best-practice and improve standards of care for patients. It has published a number of ground-breaking, high-profile, national reports into lung cancer. However, there is still much more to be done.
Our latest initiative – in partnership with our charity, health professional and health company members – is a nationwide survey to gather information about patient and carer experiences of lung cancer care and services. Without doubt, the key to improving patient outcomes is to help us understand what really matters to people living with lung cancer – and how their experience of living with lung cancer could be improved. Wherever appropriate, we want to engage current patients – or the friends and family who care for them – to fill in the survey and tell us what they think. We want their voices to be heard and ultimately reach our goal of helping to double UK lung cancer survival.
The survey is now available on our website and the results will be shared later this year. Please share this link www.uklcc.org.uk.
Dr Mick Peake
- Chair, Clinical Reference Group, UK Lung Cancer Coalition (UKLCC)
- Consultant and Senior Lecturer in Respiratory Medicine, Glenfield Hospital, Leicester
- Clinical Lead, National Cancer Intelligence Network and National Lung Cancer Audit