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Survival rates up: But still ‘unacceptable’ variation in lung cancer care say uk experts

First ‘Ten years on’ report tracks how far lung cancer outcomes and services have progressed over last decade

The UK Lung Cancer Coalition (UKLCC) is today (29th October) calling on the Department of Health and NHS England to urgently tackle the ‘unacceptable’ variations in lung cancer care.  Despite ‘significant’ improvements in survival and incidence rates, people with lung cancer still face huge inequalities when accessing lung cancer treatments and services – as a result of their age, socio-economic status or where they live.1

“While the predicted five year survival rate of patients diagnosed in England in 2013 is now almost double (16%) what it was ten years ago (9%), UK survival rates compare poorly with other major cancers and lag seriously behind our European counterparts,” says Dr Mick Peake, clinical lead for the National Cancer Intelligence Network (NCIN), and chair of the UKLCC’s clinical advisory group which authored the report.  “Put simply: ten years on we are not where we should be.”

According to the UKLCC’s report Ten years on in lung cancer: the changing landscape of the UK’s biggest cancer killer:-

·         Five-year survival rates for breast cancer are still up to ten times higher than lung cancer five-year survival rates in England and Wales 1,2

·         The proportion of people with early stage lung cancer varies from 33 to 63 per cent across England and Wales and rates for chemotherapy vary from 46 to 63 per cent

·         Patients receiving active treatment under the age of 65 in England is 77 per cent, compared to 20 per cent for people over 80 – nearly four times higher

·         The number of patients assigned a lung cancer clinical nurse specialist still varies significantly across England and Wales from 36 to 100 per cent

·         The number of patients being diagnosed with advanced  lung cancer varies from 11 to 76 per cent in England

·         The number of men diagnosed with lung cancer in the UK has decreased by  11 per cent – yet increased in women by 17 per cent over the last ten years                                                                                                                                                        

To address these disparities and ensure delivery of the highest quality lung cancer care, the UKLCC is pressing policy makers to ensure that lung cancer is appropriately prioritised in the implementation of the new five year cancer strategy. The UKLCC wants GP contracts to prioritise early diagnosis of lung cancer. It also wants to see an increase the number of lung cancer specialist nurses; an emphasis on the benefits of a national lung cancer screening programme; and work with commissioners to ensure patients receive access to the latest molecular diagnostic tests.  The re-instigation of the Be Clear on Cancer lung cancer awareness campaign is also imperative.

“Up to 89% of lung cancer cases are preventable across the UK,” says Mr Richard Steyn, chair of the UK Lung Cancer Coalition, and consultant thoracic surgeon and associate medical director, surgery, Heart of England NHS Foundation Trust. “Awareness of the signs and symptoms of lung cancer is key to early diagnosis and better patient outcomes. Yet patients in the UK are diagnosed with more advanced disease than many other countries. In England around 40 per cent of people with lung cancer first reach specialist care via an emergency admission to hospital,” he adds.

Lung cancer remains the UK’s biggest cancer killer; it kills over 35,000 people each year, which is more than breast, bowel, bladder and uterine cancer combined.3 The disease accounts for nearly a quarter of all UK cancer deaths (22 per cent) and one in seven (13%) of all new UK cancer cases.4 It is reported that four people die from lung cancer in the UK every hour (someone every 15 minutes).5 Despite, being labelled a ‘smoker’s disease’, one in eight people with lung cancer have never smoked.6

Robert Peston, the BBC economics editor recently appointed political editor by ITV – whose wife died of lung cancer – said: “Although lung-cancer survival rates in Britain are improving, they remain unacceptably poor, compared with much of the rest of the rich world. Much more money is needed for research, diagnosis and awareness campaigns.”

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For further information

Please contact Lynsey Conway on 07778 304233

Note to editors:

The publication of Ten years on: The Changing Landscape of the UK’s biggest cancer killer marks the 10th anniversary of the UKLCC’s formation and is the first UK report to assess progress in lung cancer services, treatment and outcomes over the last decade.  It provides detailed reviews each of the four UK nations, together with a list of specific requests for action.

The UKLCC is the UK’s largest multi-interest group in lung cancer and was established to help bring lung cancer out of the political, clinical and media shadow and improve one-year and five-year survival rates – which has been achieved.  Its membership includes leading lung cancer experts, senior NHS professionals, charities and healthcare companies.  Its charity members are the British Lung Foundation, Tenovus Cancer Care, Cancer Research UK, Macmillan Cancer Support, Marie Curie Cancer Care, Roy Castle Lung Cancer Foundation, and Cancer Black Care. Please visit www.uklcc.org.ukfor more information and details of all the UKLCC partners.

The UKLCC and its members are committed to improving outcomes for lung cancer patients throughout the whole of the UK.  By working in partnership with policy-makers, service commissioners and providers, and healthcare professionals, to improve the collection of data on the performance of services and sharing examples of good practice, we hope to continue to drive improvements in standards of care across the country

References

1.        Ten years on in lung cancer: the changing landscape of UK’s biggest cancer killer. Report by UK Lung Cancer Coalition. October 2015. Accessible at: www.uklcc.org

2.        Cancer Research UK, accessed at: http://www.cancerresearchuk.org/health-professional/cancer-statistics/survival/common-cancers-compared#heading-Zero

3.        Cancer Research UK mortality statistics accessed at: http://www.cancerresearchuk.org/health-professional/cancer-statistics/mortality/common-cancers-compared#heading-Zero

4.        Cancer Research UK statistics accessed at http://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/lung-cancer?script=true#heading-Zero

5.        Cancer Research UK statistics accessed at: http://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/lung-cancer/mortality#undefined

 

6.        Be clear on canceraccessed at: http://www.nhs.uk/be-clear-on-cancer/lung-cancer/about

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 killerThis 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

UK experts demand re-instigation of ‘shelved’ lung cancer awareness campaign

Clinicians working in the front-line of UK lung cancer services have today (21 July 2015) written an open letter to the Secretary of State for Health, the Rt Hon Jeremy Hunt MP, demanding clarity on the future of the Be Clear on Cancer lung cancer awareness campaign.1

Despite a nationwide DH funded campaign in 2012 – which resulted in raised public awareness of persistent cough as a key lung cancer symptom, more patients being urgently referred by their GPs, and an increase in the number lung cancers diagnosed2 – the Government has neglected to announce a follow-up.

“We are disappointed that the Department of Health does not appear to be building on the success of its own nationwide lung cancer awareness initiative, and that the campaign seems to have been shelved,” says Mr Richard Steyn, Chair of the UK Lung Cancer Coalition (UKLCC) and Consultant Thoracic Surgeon and Associate Medical Director, Surgery, at the Heart of England NHS Foundation Trust. 

Despite improvements in services in recent years, wide variations in lung cancer treatment and care continue to persist across the UK and treatment and survival rates lag behind other comparable countries in Europe.3,4 Patients in the UK are diagnosed with more advanced disease than many other countries with around 40% first reaching specialist care via an emergency admission to hospital – resulting in poorer outcomes.5

Earlier in 2015, the UKLCC provided recommendations for the Independent Cancer Taskforce’s just-published Five Year Cancer Strategy.6 It stated that improving awareness of the signs and symptoms of lung cancer, by maintaining funding for national awareness programmes, was vital to ensuring early diagnosis and treatment. 

“We are therefore calling on the new Government to re-instigate the campaign immediately – in order to encourage early diagnosis and save British lives,” added Mr Steyn. 

To access a full copy of the open letter, visit: www.uklcc.org.uk

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For further information:

Please contact Lynsey Conway on 07778 304233

Note to editors:

Lung cancer is the UK’s biggest cancer killer.7 There are over 35,000 deaths every year7 which amounts to a greater death toll than breast cancer, prostate cancer, bladder cancer, stomach cancer and leukaemia combined.8   It is reported that four people die from lung cancer in the UK every hour.7

In 2012, as part of the National Awareness and Early Diagnosis Initiative, the DH funded a campaign to raise public awareness of persistent cough as a lung cancer symptom – targeting those aged 50 or over.  The campaign encouraged those with the symptom to visit their GP.

Compared with the same time the previous year, the campaign, under the Be Clear on Cancer brand, resulted in the following positive outcomes2:-

·         Increase in public awareness of persistent cough as a lung cancer symptom (54% pre-campaign to 65% post campaign)

·         GP presentations for patients aged 50+with a cough increased by 63% during the 8 week campaign compared to the same weeks in 2011 – equivalent to three additional visits per practice per week

·         The number of urgent GP referrals for lung cancer increased by 32% during the campaign period

·         GP-referred chest X-rays (CXRs) increased by 19% in May-July 2012 compared with April 2012 – and GP-referred CT scans increase by 16% over the same period

·         9% increase in lung cancers diagnosed in the campaign period – most notably a 3% increase in the proportion of non-small cell lung cancer cases diagnosed at stage I

·         2% increase in surgical resections during the campaign

The UKLCC was founded in 2005 and is the UK’s largest multi-interest group in lung cancer.  Its membership includes leading lung cancer experts, senior NHS professionals, charities and healthcare companies.  Please visit www.uklcc.org.ukfor more information and details of all the UKLCC partners.

References:

1.        Open Letter from the Clinical Advisory Group members of the UK Lung Cancer Coalition: Available at www.uklcc.org.uk

2.        Ironmonger L et al.  An evaluation of the impact of large- scale interventions to raise public awareness of a lung cancer symptom. British Journal of Cancer. 2015; 112, 207-216

3.        National Lung Cancer Audit Report 2014. Report for the audit period 2013. Accessed  at: http://www.hscic.gov.uk/catalogue/PUB16019

4.        De Angelis R et al. Cancer survival in Europe 1999–2007 by country and age: results of EUROCARE-5 – a population based study..  The Lancet Oncology. 2014; 15 (1): 23-34

5.        Elliss-Brookes L et al.Routes to diagnosis for cancer – determining the patient journey using multiple routine data sets.  Br J Cancer. 2012, 107(8):1220-6

6.        Achieving World Class Cancer Outcomes: A Strategy for England 2015-2020; The Independent Cancer Taskforce. 19 July 2015. Accessed at: http://www.cancerresearchuk.org/sites/default/files/achieving_world-class_cancer_outcomes_-_a_strategy_for_england_2015-2020.pdf

7.        Figures from Cancer Research UK, accessed at:  http://www.cancerresearchuk.org/cancer-info/cancerstats/types/lung/mortality/

8.        Figures from Cancer Research UK accessed at: http://www.cancerresearchuk.org/cancer-info/cancerstats/mortality/cancerdeaths/#Twenty

Lung Cancer survival rates in England must ‘Match the best in Europe’ say experts

England has one of the worst survival rates in Europe

Lung cancer survival rates in England should ‘match the best in Europe’ in order to save lives, insists a group of senior clinicians from the UK Lung Cancer Coalition (UKLCC) today (2st March 2015). The call comes in response to a request from NHS England’s new independent cancer taskforce for expert input into its forthcoming five-year plan.  

“Despite improvements in care over the last ten years, lung cancer survival rates in England still lag significantly behind other European countries,” says Dr Mick Peake, chair of the UKLCC’s Clinical Advisory Group and clinicallead, National Cancer Intelligence Network and National Lung Cancer Audit. “Lung cancer remains England’s biggest cancer killer – accounting for over 28,000 deaths.1

Currently, England ranks 26 out of 29 European countries in terms of lung cancer survival data – one of the worst in Europe – with only 8.8 percent of people still alive five years after diagnosis, compared to a European average of 13 percent.2

“This is primarily a result of late diagnosis and wide variation in patient experience and access to treatment across the country,” adds Dr Peake. “Tackling these challenges has been made harder by the recent NHS reorganisation, which removed advice and support to NHS lung cancer services, such as changes to the role and funding of cancer networks.”

As well as welcoming a commitment by the cancer taskforce to improving lung cancer survival rates in England, the UKLCC is also urging investment in cancer support functions and improved staffing levels across the lung cancer pathway, most specifically in lung cancer nurse specialists. It also wants sustained funding for national lung cancer awareness programmes and promoting greater support for clinical research.  

“We know over 3500 lives could be saved in the UK if survival rates for lung cancer were to match the best in Europe,” says Mr Richard Steyn, Chair of the UKLCC and Consultant Thoracic Surgeon and Associate Medical Director, Surgery, at the Heart of England NHS Foundation Trust.

The UKLCC has welcomed the formation of the new, independent cancer taskforce announced by NHS England in January 2015.  Its remit is to develop a five-year action plan for cancer services that will improve cancer survival rates and ultimately save thousands of lives.

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For further information

Please contact Lynsey Conway on 07778 304233

Note to editors

The UKLCC was founded in 2005 and is the UK’s largest multi-interest group in lung cancer.  Its membership includes leading lung cancer experts, senior NHS professionals, charities and healthcare companies.  Its charity members are the British Lung Foundation, Tenovus, Cancer Research UK, Marie Curie Cancer Care, Roy Castle Lung Cancer Foundation, and Cancer Black Care.  Please visit www.uklcc.org.ukfor more information and details of all the UKLCC partners.

The UKLCC and its members are committed to improving outcomes for lung cancer patients throughout the whole of the UK.  By working in partnership with policy-makers, service commissioners and providers, and healthcare professionals, to improve the collection of data on the performance of services and sharing examples of good practice, we hope to drive improvements in standards of care across the country

References:

1.        Figures from Cancer Research UK accessed at:http://www.cancerresearchuk.org/cancer-info/cancerstats/types/lung/mortality/#source1

2.        Cancer survival in Europe 1999-2007 by country and age: results of EUROCARE-5. December 2013.

 

3.        What if cancer survival in Britain were the same as in Europe: how many deaths are avoidable? British Journal of Cancer, 2009 Dec 3; 101 (S2): S115-S124. Accessed at:  http://www.ncbi.nlm.nih.gov/pubmed/19956155 /

Improvements in MDT performance ‘too slow’ say experts

Poor progress in some areas of multidisciplinary team (MDT) working is hindering patient treatment and survival, says a new report launched today (18 December 2014) by lung cancer experts.1

According to the UK Lung Cancer Coalition (UKLCC), lung cancer MDTs are not performing well in some key areas and large numbers of patients are still not being diagnosed early enough.

“The number of patients being diagnosed with stage IIIB or IV lung cancer varies from 11 percent to 76 percent across England,” says Dr Mick Peake, Chair of the UKLCC’s Clinical Advisory Group and Clinical Lead, National Cancer Intelligence Network and National Lung Cancer Audit.  “Such a high variation cannot continue if lung cancer patients are to be given the best possible chances of receiving appropriate and effective treatment.”

As well as tracking progress made since the launch of the ‘TheDream MDT for lung cancer’ published in 2012 – the report maps out 12 new priorities for the future.*

“Nearly one-third of lung cancer patients have to see their GP three times or more  before being referred to hospital; a figure which has shown no improvement in the last year,” adds Dr Peake. “We are calling for GPs to ensure that patients with signs and symptoms of lung cancer are urgently referred through the two week wait pathway. The earlier we diagnose lung cancer, the more likely patients can be treated and survive.”

The comprehensive review collates views and insights from active lung cancer MDT members across the country and analyses data on MDT performance from the most recently published National Cancer Patient Experience Survey (NCPES), National Lung Cancer Audit (NLCA), and Lung Cancer Service Profiles (LCSP).

Lung cancer continues to be the UK’s biggest cancer killer.2 There are over 35,000 deaths every year2 which amounts to a greater death toll than breast cancer, prostate cancer, bladder cancer, stomach cancer and leukaemia combined.3   It is reported that four people die from lung cancer in the UK every hour.2

Despite improvements in services in recent years, wide variations in lung cancer treatment and care continue to persist across the UK and treatment and survival rates lag behind other comparable countries in Europe.4,5 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.,6

TheUKLCC’S vision is to double lung cancer survival during the next six to ten years, with the co-operation of health professionals, policy makers, local primary care organisations, the NHS and Government. 

“Multi-disciplinary teams are at the heart of delivering improved outcomes for lung cancer patients, yet some aspects of MDT working still require drastic improvement across the country,” says Mr Richard Steyn, Chair of the UKLCC and Consultant Thoracic Surgeon and Associate Medical Director, Surgery, at the Heart of England NHS Foundation Trust.

“Only through continual monitoring, evaluation and service improvement will all patients receive the treatment they both need and deserve.”

The UKLCC plans to undertake a further review of lung cancer MDTs in 2016 and annually thereafter.

For a copy of ‘A review of The Dream MDT: Measuring and improving high quality lung cancer outcomes’ please visit:  www.uklcc.org.uk

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Note to editors

The UK Lung Cancer Coalition (UKLCC) is the UK’s largest multi-interest group in lung cancer.  It believes that by applying the best standards already being demonstrated in the best lung cancer centres in Europe, 3,500 lives could be saved each year in the UK.

*The 12 recommendations outlined in the ‘Review of ‘The Dream MDT’:Measuring and improving high quality lung cancer outcomes’ are as follows:-

1.       MDTs should ensure the lung CNS to lung cancer patient ratio is adequate to allow CNSs to be a core part of the MDT and be available for diagnostic, treatment and end of treatment appointments for all patients

2.       GPs should ensure patients with signs and symptoms of lung cancer are urgently referred through the two week wait pathway, and proactively follow up with their patients to ensure they have received diagnostic tests and fully understand the information given to them

3.       GPs should be regularly informed as to where their patients are along the care pathway and GPs should work with the MDT to ensure patients are told why they have been referred and be provided with information about their condition and treatment options

4.       Patients with suspected lung cancer should be assessed at a dedicated rapid access clinic at the earliest possible opportunity. In addition, the diagnostic pathway should be designed by the MDT to encourage use of fewer, but higher value, tests to increase the likelihood that diagnosis and stage of the disease is assigned as quickly and effectively as possible

5.       Full and appropriate membership of the specialist team and their regular attendance at the meetings should be of paramount importance to each MDT

6.       MDTs should ensure patients are provided with written information about the type of cancer they have as soon as a diagnosis has been established and ensure the patient fully understands the information given to them and has an opportunity to ask any questions they may have

7.       All MDTs for lung cancer patients should have at least one thoracic surgeon (undertaking a minimum one full day thoracic operating, minimum one full MDT per week and a thoracic surgical outpatient clinic with CNS support) as a core member

8.       MDTs should work to ensure all patients are given appropriate treatment options before they begin their treatment regime and are fully involved in decisions about their care

9.       MDTs should ensure all lung cancer patients are given information about any possible side effects of treatment in an easy to understand format

10.    MDTs should always arrange a ‘stock-take’ meeting within a maximum of one month from the end of a patient’s treatment to assess their experience of the care pathway, determine any other treatment provision and provide assurances of possible next steps

11.   As a minimum, MDTs should routinely assess patients’ supportive and palliative care needs around the time of diagnosis, on completion of primary treatment, when there is significant deterioration of symptoms and when it becomes clear that a patient is nearing death. A particular focus should be on improving the information required by patients and carers to ensure there is appropriate ongoing support at home

12.   At each stage of the care pathway the MDT should assess if a patient is eligible for a clinical trial and, if so, ask the patient whether they would like to participate

References

1.        Review of ‘The Dream MDT’:Measuring and improving high quality lung cancer outcomes. UKLCC December 2014

2.        Figures from Cancer Research UK, accessed December 2014 at:  http://www.cancerresearchuk.org/cancer-info/cancerstats/types/lung/mortality/

3.        Figures from Cancer Research UK accessed December 2014 at: http://www.cancerresearchuk.org/cancer-info/cancerstats/mortality/cancerdeaths/#Twenty

4.        National Lung Cancer Audit Report 2014. Report for the audit period 2013. Accessed December 2014 at: http://www.hscic.gov.uk/catalogue/PUB16019

5.        Cancer survival in Europe 1999–2007 by country and age: results of EUROCARE-5 – a population based study. De Angelis R et al.  The Lancet Oncology.  2014; 15 (1): 23-34

6.        Routes to diagnosis for cancer – determining the patient journey using multiple routine data sets.  Elliss-Brookes L, McPhail S, Ives A, Greenslade M, Shelton J, Hiom S, Richards M. Br J Cancer. 2012, 107(8):1220-6      

For further information, please contact Lynsey Conway on 07778 304233

For further information about the UKLCC and its partners, visit www.uklcc.org.uk

NEARLY 2,000 LUNG CANCER PATIENTS MAY BE MISSING OUT ON LIFE-SAVING SURGERY

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.

Emma Greenwood

Head of Policy Development

Cancer Research UK

Cancer Research UK is a member of the UK Lung Cancer Coalition. www.uklcc.org

Lung Cancer – the state of the nations

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.

 

Richard Steyn

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

Report reveals half of lung cancer patients report care delays

REPORT REVEALS HALF OF LUNG CANCER PATIENTS FACE CARE DELAYS

‘Worrying’ void between patient expectation and experience, say experts

Nearly half (46%) of lung cancer patients report experiencing delays at some stage of their care – and only two thirds (64%) say they receive prompt referral to hospital – according to a national report published today (28 November) by leading lung cancer experts.1

Published by the UK Lung Cancer Coalition (UKLCC), and based on a nationwide survey to gather insights from lung cancer patients and carers, it uncovers ‘worrying’ discrepancies between what really matters to people living with lung cancer, current national targets, and the actual and care and treatment patients reported to receive. 

“Despite 95% of respondents citing ‘prompt referral to hospital’ as a priority – our survey revealed that there are still too many patients facing unacceptable care delays. This is putting lives at risk,” says consultant thoracic surgeon, and chair of the UKLCC, Mr Richard Steyn.  

In addition to care delays, the report also uncovers the ‘general lack of support and information’ received by patients and carers’ reported by survey respondents – as well as ‘mixed levels’ of public and professional awareness about the disease.   

“Only one in five (22%) of those patients surveyed reported to receive continuous support from a clinical nurse specialist; more than half were not provided with accurate information about their diagnosis (57.1%); and four out of ten respondents described their GPs’ understanding of lung cancer as ‘variable’, ‘not enough’ or ‘not at all’.  Despite, major improvements in lung cancer services in recent years, and many patients reporting a positive experience of care, these results are sobering,” he added.

As a result, the UKLCC has set out a series of practical recommendations for national and local health and social care organisations to help promote and embed a more ‘patient-centred approach’ to lung

cancer care. 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.  

“A key way to improve the lot of lung cancer patients is to really understand what matters most to them and continually track this against their actual care experiences. This is the main thrust of this report,” says Dr Mick Peake, consultant and senior lecturer in respiratory medicine, chair of the clinical advisory group of the UKLCC, and clinical lead, National Cancer Intelligence Network and National Lung Cancer Audit.    

Lung cancer continues to be the UK’s biggest cancer killer.2 There are almost 35,000 deaths every year,2 which amounts to a greater death toll than breast cancer, prostate cancer, bladder cancer and leukaemia combined.3   It is reported that four people die from lung cancer in the UK every hour.2

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. 

November is Lung Cancer Awareness Month

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Note to editors

The UKLCC was founded in 2005 and is the UK’s largest multi-interest group in lung cancer.  Its membership includes leading lung cancer experts, senior NHS professionals, charities and healthcare companies.  Its charity members are the British Lung Foundation, Cancer Research UK, Macmillan Cancer Support, Marie Curie Cancer Care, Roy Castle Lung Cancer Foundation, and Cancer Black Care.  www.uklcc.org.uk

The report: Putting patients first: Understanding what matters to lung cancer patients and carers’ is underpinned by a UK survey of lung cancer patients and carers’ undertaken by the UKLCC in June and July 2013.

The survey was available both online and in hard copy. The survey included 14 key questions on aspects of lung cancer, including awareness, diagnosis, treatment and support.  To help gather qualitative information about patients’ experiences, a number of free text boxes were provided to

afford respondents the opportunity to share any additional insights or examples from the care and treatment they experienced or observed.

In total, 432 responses were received from patients and carers across England, Scotland, Wales and Northern Ireland.  

References:

1                     Putting patients first: Understanding what matters to lung cancer patients and carers’.  UK Lung Cancer Coalition. November 2013

2                     Figures from Cancer Research UK, accessed October 2013 and available at: http://info.cancerresearchuk.org/cancerstats/types/lung/mortality/

3                     Figures from Cancer Research UK, accessed October 2013 and available at: http://info.cancerresearchuk.org/cancerstats/mortality/cancerdeaths/

Understanding what matters to lung cancer patients and carers

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

Richard Steyn
Consultant Thoracic Surgeon, Birmingham Heartlands Hospital
National Cancer Advisor & Chair of the UKLCC
Chair of the UK Lung Cancer Coalition

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Tel: 01675 477605
Email: info@uklcc.org.uk
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