Cancer in the East Midlands December 2016

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1 December 2016

2 About Public Health England East Midlands Public Health England exists to protect and improve the nation s health and wellbeing, and reduce health inequalities. We do this through world-class science, knowledge and intelligence, advocacy, partnerships and the delivery of specialist public health services. We are an executive agency of the Department of Health, and are a distinct delivery organisation with operational autonomy to advise and support government, local authorities and the NHS in a professionally independent manner. Public Health England East Midlands covers the local authority areas of Derby City, Derbyshire County, Nottingham City, Nottinghamshire County, Leicester City, Leicestershire County, Rutland County, Lincolnshire County and Northamptonshire County. The population of the area in 2014 was over 4.6 million people. Public Health England Wellington House Waterloo Road London SE1 8UG Tel: Facebook: Prepared by: Rebecca Elleray, senior analyst PHE Local Knowledge and Intelligence Service for the East Midlands For queries relating to this document, please contact: Rebecca.elleray@phe.gov.uk Crown copyright 2016 You may re-use this information (excluding logos) free of charge in any format or medium, under the terms of the Open Government Licence v3.0. To view this licence, visit OGL or psi@nationalarchives.gsi.gov.uk. Where we have identified any third party copyright information you will need to obtain permission from the copyright holders concerned. Any enquiries regarding this publication should be sent to Rebecca.elleray@phe.gov.uk. Published December 2016 PHE publications gateway number:

3 Foreword In July 2015, an Independent Cancer Taskforce published Achieving world class cancer outcomes: a strategy for England The report proposes a strategy to radically improve the outcomes the NHS delivers for people affected by cancer through a set of 96 recommendations to the health system. The Taskforce estimates 30,000 lives can be saved each year by 2020 through prevention, earlier diagnosis and better treatment and care. As part of the implementation process, NHS England and the Cancer Clinical Network are committed to working with key stakeholders to establish a Cancer Alliance. This non-statutory body will improve pathways of care across organisation boundaries to ensure better patient outcomes. The importance of data and knowledge to support the shaping of the vision for the Cancer Alliance will be essential to deliver world-class cancer services for all patients in England. Louise Walker Head of Cancer Alliance and Diagnostics East Midlands Clinical Networks & Senate 3

4 Contents About Public Health England East Midlands 2 Foreword 3 At a glance 5 Cancer incidence and mortality 6 Lifestyle risk factors 14 Screening coverage 21 How are patients diagnosed? 27 Staging 30 Survival 33 Place of death 35 Key points 37 Appendix 39 Glossary 45 References 46 4

5 At a glance Key facts in 2014, 150,000 people in the East Midlands were living with cancer, beyond their diagnosis and treatment and is estimated to increase by 111,000 by the year 2030 in 2014, 26,000 new cases of cancer were diagnosed in the East Midlands in 2014, there were 12,000 deaths from cancer in the East Midlands Improvements in cancer outcomes in the East Midlands significant improvements in one-year and five-year survival for the main cancer sites of lung, colorectal and breast underpinning these improvements, particularly for cervical, breast, and colorectal cancers, is the impact of early stage diagnoses for patients who have presented through the cancer screening programmes and the HPV vaccination programme Areas where targeted action is required to improve outcomes include planning and resource for the continued increases in the number of new cases of cancer and the number of people living with and beyond cancer, across the region for our biggest cancer killer, lung cancer, the route of diagnosis remains primarily emergency presentations. This increases the risk of late-stage diagnosis and poorer long term survival outcomes common lifestyle-related risk factors (drinking at increased or high risk levels, smoking, obesity, poor diet and physical inactivity) for cancer remain higher in some areas of the East Midlands region compared to national averages, driving the potential for future continued increases in new cases of cancer. Tackling these risk factors and reducing the number of people engaging in them could help to slow the growth of cancer incidence in future years across all of these outcome areas, there remain inequalities across the East Midlands. These inequalities encompass social deprivation, ethnicity, and access to early diagnosis and treatment in rural and coastal areas 5

6 Note on methods maps are shaded according to the national range of values and grouped using Jenk s natural breaks method a. The lower tier local authorities and the CCGs have been labelled by area code and these can be looked up using the tables in the Appendix. Bassetlaw CCG and Tameside and Glossop CCG have been included in the maps as they cover parts of the East Midlands PHE Centre region but constitute a different NHS commissioning region. For all maps, the areas are shaded light for lower and darker for higher values, rather than indicating judgements of worse or better tables A1 and A2 in the appendix provide the area code to name lookup for both local authority and CCG maps Cancer incidence and mortality In 2014, there were over 26,000 new cancers diagnosed in the East Midlands and almost 12,000 deaths from cancer. Over the past 10 years the incidence of all cancers has increased significantly, both in the East Midlands and England as a whole, while the rate of deaths from cancer has significantly decreased. 1 Nearly two thirds of cancer diagnoses occur in the over-65s and one third in people aged 75 and over. 2 Generally, older age groups are currently the fastest-growing population group and so the number of cancer cases will naturally increase as cancer is a disease strongly associated with age. In 2014, there were estimated to be over 150,000 people in the East Midlands either living with cancer or beyond their diagnosis and treatment for cancer (prevalence). 3 The number of people living with and beyond cancer is estimated to increase significantly over the next 20 years, partly because of the ageing population and increasing incidence but also because of increasing survival from cancer. By 2030, it is estimated there will be as many as 261,000 people in the East Midlands living with and beyond cancer (Figure 1), a potential increase of 75% (111,000 cases) by a Geospatial Analysis A Comprehensive Guide, 3rd edition; ; de Smith, Goodchild, Longley 6

7 Figure 1, 20 year prevalence and future estimates by scenario: all cancers, East Midlands Scenario 1: assumes people will continue to get and survive cancer at increasing rates in line with recent trends (except for prostate cancer), and the general population will continue to grow and age. Scenario 2: assumes people will continue to get cancer at the rate they do today, and that survival rates will remain as they are. The estimates are therefore driven by a growing and ageing population only. The rate of cancer incidence in the East Midlands in 2014 was not significantly different to the England average at 601 new cancers per 100,000 population compared to 608 in England as a whole. 1 There was significant variation in the rate of incidence of all new cancer cases by local authority within the East Midlands, from 510 cases per 100,000 population in Charnwood to 734 per 100,000 in Bolsover (Figure 2). The rates in Bolsover, Corby, Bassetlaw, East Lyndsey, and Nottingham were significantly higher than the national average (Nottingham was significantly higher than the national average but in the second highest group nationally on the map below). All of the areas in the East Midlands coloured with the palest red are significantly lower than the national average. 7

8 Figure 2, Age standardised incidence for all cancers, rate per 100,000 population, East Midlands,

9 The East Midlands mortality rate in 2014 was similar to the England mortality rate at 282 per 100,000 population (Figure 3) compared to 281 in England as a whole. 1 There was also significant variation in mortality rates within the region from 225 deaths per 100,000 population in Rutland to 367 deaths per 100,000 population in Bolsover. Compared to the national average, Bolsover, Mansfield, Corby, Gedling, Ashfield, Bassetlaw and Nottingham all have rates significantly higher (Nottingham was significantly higher than the national average but in the second highest group nationally on the map below). Rutland, North Kesteven, Hinckley and Bosworth, East Northamptonshire, Harborough, Rushcliffe and North East Derbyshire all have significantly lower mortality rates compared to the national average. Figure 3, Age-standardised rate of mortality for all cancers, per 100,000 person population, East Midlands,

10 Figure 4 shows the number of new cases of cancer and the number of deaths from cancer by disease type and gender in For women, the greatest number of new cancer cases were breast cancer, and for men, prostate cancer. Lung cancer had the highest number of deaths for both men and women and the second highest number of new cases. Colorectal cancer was the third commonest in terms of both new cases and deaths for men and women. In 2014, there were more deaths from liver cancer in women than there were new cases. Figure 4, Number of new cases and deaths from cancer, East Midlands,

11 Figure 5 shows the change in the average annual number of new cases of different types of cancer over the last 10 years in the East Midlands by gender. 1 There were increases in the number of most cancer types over this time, but the greatest increase in the number of new diagnoses were for prostate cancer with almost 1,200 more cases being diagnosed on average in the years than in This may be due to increased testing for prostate cancer through the PSA blood test. There have been substantial increases in the numbers of lung cancers diagnosed, particularly in women, with an additional 426 more lung cancers being diagnosed in women in the years compared to Colorectal cancers have also seen an increase of around 600 cases in both men and women over the 10-year period, some of which may be due to the introduction of the Bowel Cancer Screening Programme in England, which began operating in 2006 with full roll out by The number of uterine cancers also increased by an average of 210 more cases; this is likely due to increasing obesity rates among women, a key risk factor for uterine cancer, as well as fewer hysterectomies being carried out. Figure 5, Change in the average annual number of new cases of different types of cancer between and , East Midlands Prostate Breast Colorectal Lung Skin NHL Leukaemia Kidney Uterus Liver Pancreas Oral Oesophagus Mesothelial Brain and CNS Cervix Hodgkin's Bladder Ovary Stomach Female Male 11

12 Incidence and mortality by deprivation For some cancer types, incidence and mortality rates are strongly associated with the level of socio-economic deprivation experienced by that area. 4 Figure 6 and Figure 7 show incidence and mortality rates in the most deprived and least deprived quintiles across the East Midlands for men and women. a Cancer types are shown if there was a statistically significant difference in the rates between the most deprived and least deprived quintiles. Of note: the incidence rates of prostate, breast, and skin cancers were significantly higher in the least deprived groups in the East Midlands compared to the most deprived groups. However, mortality rates from these cancers, for the least deprived, are not significantly higher lung, liver and stomach cancers have significantly higher incidence rates in the most deprived groups compared to the least deprived groups for both sexes, with the rates of lung cancer incidence in the most deprived groups being more than double those of the least deprived group oral cancers had significantly higher incidence among men living in the most deprived quintile women diagnosed living in the most deprived quintile had a significantly higher incidence of cervical cancer compared to women living in the least deprived quintile the rate of mortality from pancreatic cancer was significantly higher among men living in the most deprived quintile compared to the least deprived quintile, although incidence was not significantly different although breast cancer incidence was significantly higher among women living in the least deprived areas, there was no significant difference in mortality rates a Indices of multiple deprivation 2010, within region quintiles 12

13 ASR per 100,000 population ASR per 100,000 population Cancer in the East Midlands Figure 6, Incidence of cancer in the most deprived and least deprived groups by cancer type, males (blue bars) and females (red bars), East Midlands, 2012 to Most deprived quintile Most affluent quintile Most deprived quintile Most affluent quintile 0 Lung Prostate Skin Oral Stomach Liver Lung Breast Skin Cervix Stomach Liver Figure 7, Mortality from cancer in the most deprived and least deprived groups by cancer type, males (blue bars) and females (red bars), East Midlands, 2012 to Most deprived quintile Most affluent quintile Most deprived quintile Most affluent quintile Lung Stomach Oral Pancreas Lung Stomach 13

14 Lifestyle risk factors Figure 8 shows the prevalence in the East Midlands of key lifestyle risk factors of smoking, drinking alcohol at an increasing and higher risk level, obesity, eating less than five portions of fruit and veg a day (poor diet) and physical inactivity. These risk factors are significantly associated with an increased risk of cancer as well as other long term conditions. Smoke Drinking at increasing or higher risk Obese Poor Diet Physically Inactive 19% 20% 26% 47% 29% Figure 8, Prevalence of risk factors in East Midlands Smoking is by far the biggest preventable cause of cancer and accounts for more than one in four UK cancer deaths, and nearly one in five cancer cases. Smoking causes more than four in five cases of lung cancer and increases the risk of 15 other cancers. 6 In the East Midlands 19% of adults were current smokers in The map in Figure 9, below, shows this data at local authority level. Alcohol is one of the most well-established causes of cancer, 8 yet awareness of this link among the general population has been found to be poor 9 It has been classified as a Group 1 carcinogen since Cancers of the mouth, oesophagus, colorectal, liver, larynx and breast have all been shown to be related to alcohol. 10 In 2014, the Health Survey for England found that 20% of adults drink more than 14 units per week (increasing or higher risk drinking). 11 Estimates of alcohol consumption are not currently available at local level, although this information is expected in the near future. The map in Figure 10, below, shows the age-standardised incidence rate of alcohol related cancers. It is thought that more than one in 20 cancers in the UK are linked to being overweight or obese. 12 Research has shown many types of cancer are more common in people who are overweight or obese. These include two of the most common types of cancer; breast and colorectal cancers, and three of the most difficult to treat; pancreatic, oesophageal and gallbladder cancers. 12 In , more than a quarter of adults were classed as obese in the East Midlands, significantly higher than the England average of 24%. 11 The map in Figure 11, below, shows the prevalence of obesity among adults at local authority level. 14

15 An estimated 5% of cancer cases in the UK are attributed to eating too little fruit and vegetables. Upper aero-digestive tract cancers (oral cavity and pharynx, oesophageal, and larynx) have the highest proportions of cases linked to inadequate fruit and vegetables intake as well as colorectal cancer. A further 3% of cases are attributed to eating any red meat and processed meat, a further 2% to eating too little fibre and less than 1% to eating too much salt. 13 In 2015, almost half (47%) of the population of the East Midlands did not eat the recommended five portions of fruit and vegetables a day, similar to the national average 14 (note: this is the inverse of the Public Health Outcomes Framework indicator). Figure 12, below, shows the proportion of adults who reported that they did not eat the recommended five portions of fruit and vegetables a day at local authority level. In The European Health Report in 2012 the World Health Organization estimated that eliminating physical inactivity would result in 22% to 33% less colon cancer and 5% to 12% less breast cancer. 12 In 2015 in the East Midlands, 29% of adults are classed as inactive, similar to the national average. 14 The map in Figure 13, below, shows the proportion of adults who are as physically inactive at local authority level. Health checks The NHS Health Check programme is a national prevention programme to identify people at risk of developing vascular diseases: heart disease, stroke, diabetes, kidney disease or vascular dementia. Everyone in England aged between 40 to 74 years will be invited for a NHS Health Check once every five years if they do not have a previous diagnosis of vascular disease. The checks are designed to assess a patient s risk of developing vascular disease and give them personalised advice on how to reduce it. It is estimated that one in five people who go for a NHS Health Check will be highlighted as at risk of developing a vascular disease in the near future. The risk factors for vascular disease are similar to the risk factors for cancer. If people s behaviour around smoking, alcohol consumption, maintaining a healthy weight through exercise and a healthy diet can be influenced through the health checks programme, then it could help to reduce cancer incidence. Between 2013/14 and 2015/16, 29% of the eligible population had received a health check in the East Midlands, higher than the national average of 27%, However, across the region this ranges from 20% in Nottingham to 56% in Leicester. 15

16 Smoking In 2014, the overall smoking prevalence in the East Midlands was 19%. Smoking prevalence varied significantly across the East Midlands at almost one in three (32%) in Corby to less than one in 10 (7%) in Rushcliffe (Figure 9). Smoking prevalence was significantly higher than the national average in Corby, Nottingham, Hinckley and Bosworth and Leicester. Figure 9, Smoking prevalence (%) in adults (aged 18+) in East Midlands,

17 Alcohol In there were estimated to be almost 5,600 alcohol related cancers in the East Midlands. 15 Rates of alcohol related cancers have increased significantly since in the East Midlands, in line with England, from 35 per 100,000 person population to 38 per 100,000 person population. There was variation in the rate of alcohol related cancers within the East Midlands with rates ranging from 34 cancers per 100,000 population in Charnwood compared to 43 per 100,000 in Corby. However, this variation was not statistically significant and there were no areas that had a significantly higher rate than the national average. Figure 10, Age-standardised incidence rate of all alcohol-related cancer, per 100,000 person population (aged 16+) East Midlands, 2012 to

18 Obesity In , over one in four adults in the East Midlands were obese. Seventeen of the 40 local authorities in the East Midlands had significantly higher rates of obesity compared to the national average. The proportion of adults estimated to be obese varied significantly across the region, from nearly one in three people in Mansfield (32%) to one in five people in Rushcliffe (19%), (Figure 11). Figure 11, Proportion of adults estimated to be obese (adjusted, %), East Midlands, 2012 to

19 Poor Diet In 2015, in the East Midlands, 47% of adults reported that they had not eaten the recommended five portions of fruit and vegetables on a usual day. Although this is similar to the national average, there is significant variation across the region. The highest proportion not meeting recommendations is 59% in Corby and the lowest is in Rutland at 37% (Figure 12). Corby, Leicester, Nottingham, Bolsover and Northampton all have significantly higher proportions that do not eat the recommended five portions of fruit and vegetables. The proportions are significantly lower than the national average in Rutland, South Northamptonshire and Newark and Sherwood. Figure 12, Proportion of adults who reported that they had not eaten the recommended five portions of fruit and vegetables on a usual day (%), East Midlands,

20 Physical inactivity In 2015, in the East Midlands 29% of adults are classed as inactive. The proportion of adults estimated to be physically inactive ranged from just over one in three (35%) in South Holland to one in five (20%) in Harborough (Figure 13). The proportion of adults classed as being physically inactive was significantly higher than the national average in North West Leicestershire, Mansfield, Nottingham, Leicester, East Lindsey, Bolsover, Wellingborough and South Holland. Figure 13, Proportion of adults estimated to be physically inactive, achieving less than 30 minutes physical activity per week (%), East Midlands,

21 Screening coverage In 2015 just over three-quarters (76%) of eligible women in the East Midlands had received cervical screening within the last three-and-a-half years or five years (dependant on age) and 80% of eligible women had received breast screening in the last three years. Sixty per cent of the eligible population had received bowel screening in the last two-and-a-half years. Screening coverage was significantly higher in the East Midlands than the England average for all three cancer screening programmes (Figure 14). 16 The proportion of eligible women receiving their cervical screening within three-and-ahalf and five years decreased by 2% between 2009/10 and 2014/15. This is in line with national trends. Coverage of the bowel screening programme has improved by almost a fifth since 2009/10. However, this increase is partly due to the roll out of the bowel screening programme not being complete until the end of Figure 12, Screening uptake in East Midlands in 2014/15 and change in screening uptake 2009/10 to 2014/15 16 Breast Bowel Cervix 18% -2% 76% 60% 76% 21

22 Overall, 76% of women had been screened for breast cancer in the East Midlands in 2015/16 (three year coverage). There was significant variation in breast cancer screening coverage across the region from 71% in NHS Leicester City CCG to 82% in NHS East Leicestershire and Rutland CCG (Figure 15). The majority of CCGs within the region had significantly higher coverage of the breast screening programme compared to the national average. However, Nottingham CCG was lower but not significantly and Leicester CCG was significantly lower than the national average of 72%. 17 Figure 13, Females aged 50-70, screened for breast cancer in last 36 months (three-year coverage, %) East Midlands, 2014/

23 A similar picture is seen for bowel screening coverage. Overall coverage for the East Midlands was 60%, but this varied significantly from 45% in NHS Leicester City CCG to 67% in NHS Rushcliffe (Figure 16). The majority of CCGs had a higher bowel screening coverage rate than the national average of 58%, with the exceptions being Corby CCG, Nottingham CCG and Leicester CCG which were significantly lower. 16 Figure 14, Persons aged 60-69, screened for bowel cancer in last 30 months (2.5 year coverage, %), East Midlands, 2014/

24 There was also significant variation in terms of cervical cancer screening uptake. The average for the East Midlands is 76% and varies from 68% in NHS Leicester City CCG to 83% in NHS Rushcliffe CCG (Figure 17). All CCGs with the exception of NHS Leicester City CCG and Corby CCG had a higher screening coverage than the England average (74%). 17 Figure 17, Females aged 25-64, attending cervical screening within target period (3.5 or 5.5 year coverage, %), East Midlands, 2014/

25 Figure 18 shows screening coverage for the three cancer screening programmes by deprivation quintile of GP practices within the East Midlands. There was significant variation by deprivation quintile for all screening programmes, with people living in the most deprived quintiles being significantly less likely to take up screening than those living in the least deprived quintiles. Cervical screening showed the least difference by deprivation, with a 9% gap in coverage between those registered with GP practices in the most and least deprived areas; bowel cancer showed the greatest difference with an 18% gap in coverage between the most and least deprived. There may be other factors which influence cancer screening uptake, including ethnic and cultural differences between populations, however, these are difficult to measure at the present time. Figure 18, Screening uptake by deprivation quintile of practice, East Midlands, 2014/

26 Human Papilloma Virus (HPV) vaccination The HPV vaccine protects against the two high-risk HPV types 16 and 18 that cause over 70% of cervical cancers. Vaccination coverage is the best indicator of the level of protection a population will have against vaccine preventable communicable diseases. In the UK, all year old girls (school year eight) are offered HPV vaccination through the national HPV immunisation programme. Previous evidence shows that highlighting vaccination programmes encourages improvements in uptake levels. 17 Reduction in the prevalence of vaccine type HPV infection in young women is an early indication of the impact of the HPV immunisation programme and a necessary outcome if the subsequent impact on cervical cancer incidence is to be realised. A recent study shows that there has been a reduction in the prevalence of HPV 16/18 in sexually active young women in England following the introduction of the immunisation programme. 18 Overall, uptake of the vaccination is significantly better than the England average (87%), at over 90% of girls aged 12 to 13 having received at least one dose of the vaccine in 2014/15. However, there is significant variation across the region. The uptake in Derbyshire is significantly lower than the national average at 84% and significantly higher than both the national and regional averages in Northamptonshire at 94% and Leicestershire at 96%. 17 Figure 15, the proportion of year olds girls that have received one dose of the HPV vaccination, by upper tier local authority, 2014/

27 How are patients diagnosed? Figures 20 to 23 show the proportion of patients in the East Midlands diagnosed by broad route of diagnosis (sourced from the PHE NCRAS routes to diagnosis workbooks). 19 Either their cancer was detected through: screening (where a screening programme is available for that cancer type) the two week wait route urgent referral for a suspected cancer a GP referral other than two week wait an emergency presentation there are other routes such as other outpatient, inpatient elective, death certificate only registration and unknown routes, but these are not presented here as they constitute a small proportion of routes to diagnosis for these cancer sites They also show the relative one-year survival for patients diagnosed via that route in England. Also included are the proportions of patients that were diagnosed through each route that were also diagnosed at stage one or two disease in England in Tables showing the breakdown by stage for each route to diagnosis are available in the Appendix tables A3-A6. In around a third (31%) of breast cancer patients in the East Midlands were diagnosed through screening and 47% through the two week wait route. The one-year survival of these patients was very good at 100% for screen detected patients and 97% for patients diagnosed through the two-week wait route, which reflects the large proportion of patients diagnosed with an early stage of disease (87% and 69%, respectively). Four per cent of breast cancer patients were diagnosed through the emergency route and one-year survival for this group is much poorer, at 53%. This is reflected in the much lower proportion of early stage disease that is diagnosed through this route (15%)(Figure 20). Figure 16, Breast cancer proportion of diagnoses by route in East Midlands, , proportion of cases diagnosed by route that were stage 1 or 2 disease, England, 2013 and one-year survival in England, Breast % diagnosed % early stage (1+2) 1 year survival Screened Two Week Wait GP Referral Emergency presentation 31% 47% 11% 4% % 87% 87% 69% 57% 15% 15% 100% 97% 93% 53% 27

28 The highest proportion of prostate cancers (40%) in the East Midlands was diagnosed through the two week wait route, while 32% were diagnosed through GP referral. A lower proportion of cases diagnosed through the two-week wait route were diagnosed at an early stage compared to the GP referral route. This may reflect the more symptomatic patients being diagnosed through the two week wait as an urgent referral for a suspected cancer. One-year survival was very good for these groups (98% for both routes), again reflecting the higher proportions of early stage disease. Nine percent of patients were diagnosed through the emergency route and survival for this group was much poorer, at 57%, reflecting the much lower proportion of early stage disease, at 17% (Figure 21). Figure 21, Prostate cancer proportion of diagnoses by route in East Midlands, , proportion of cases diagnosed by route that were stage 1 or 2 disease, England, 2013 and one-year survival in England, Prostate Two Week Wait GP Referral Emergency presentation % diagnosed % early stage (1+2) 1 year survival 40% 32% 9% % 58% 17% 17% 98% 98% 57% For colorectal cancer in , 7% of patients in the East Midlands were diagnosed through screening and 30% were diagnosed through the two week wait route (Figure 22). One-year survival for screen detected colorectal cancer was 97% compared to 82% for one-year survival through the two week wait route. This is likely to be due to screen detection finding early stage tumours which may not be symptomatic and therefore would not have been diagnosed through any other route and is reflected in the higher proportion of early stage cancers detected through screening compared to other routes (59%). Almost a quarter (24%) of colorectal cancer patients in the East Midlands were diagnosed through an emergency route and their one-year survival was almost half that of those patients diagnosed through screening (49%). The proportion of early stage tumours detected this way is also around half that of the screening route at 26% 28

29 Figure 22, Colorectal cancer proportion of diagnoses by route in East Midlands, , proportion of cases diagnosed by route that were stage 1 or 2 disease, England, 2013 and 1-year survival in England, Colorectal % diagnosed % early stage (1+2) Screened Two Week Wait GP Referral Emergency presentation 7% 7% 30% 25% 24% % 41% 43% 26% 1 year survival The highest proportion of new diagnoses of lung cancer in the East Midlands comes through the emergency route, with 36% of lung cancers diagnosed this way (Figure 23). Around 31% of patients were diagnosed through the two week wait route and 20% through GP referral. One-year survival was poor, even for managed routes, at 43% for the two week wait route. For the patients diagnosed via the emergency route, one-year survival is just 13%. Despite route to diagnosis, lung cancer is much less likely to be diagnosed with an early stage compared to the other cancers (22% for two week wait to 11% for emergency presentation), and this is driving the much worse one-year survival. This suggests that raising awareness of the symptoms of lung cancer among at-risk groups and encouraging them to visit their GP is key to earlier diagnosis of the disease. Encouraging at-risk groups to take-up their health checks may also increase contact between at-risk individuals and primary care that could lead to more early stage disease getting picked up through this route. Figure 23, Lung cancer proportion of diagnoses by route in East Midlands, , proportion of cases diagnosed by route that were stage 1 or 2 disease, England, 2013 and one-year survival in England, Lung 97% 82% 80% 49% Two Week Wait GP Referral Emergency presentation % diagnosed % early stage (1+2) 1 year survival 31% 20% 36% 36% 22% 28% 11% 11% 43% 41% 13% Emergency hospital presentations of new patients with cancer correlates closely with poor one-year survival rates and may provide an indicator for the extent of late stage diagnoses in a population

30 Staging Figure 24 shows the proportion of all cancer patients who were diagnosed at an early stage (stage one or two) by cancer type in the East Midlands in Nearly three quarters (71%) of breast cancer patients were diagnosed at an early stage, around half of prostate cancers (49%), over a third (34%) of colorectal cancers and a fifth of lung cancers (20%). Figure 24, Proportion of all tumours diagnosed at an early stage (stage 1 or 2) by cancer type, East Midlands, Breast Colorectal Lung Prostate 71% 34% 20% 49% Figure 25 shows survival by stage for England. It shows that, for all the main cancer types, one-year survival for cancers at stage one and stage two was significantly greater than survival at stage four. Even for lung cancer, where survival is generally poor, one-year survival for stage one cancers was around 87%; this compares with stage four cancers, where one-year survival was less than 20%. Figure 25, one-year survival by stage and cancer type, England,

31 Cancer in East Midlands Figure 26, Proportion of all staged cases diagnosed at early stage (1 & 2), breast, colorectal and lung respectively East Midlands, There was some variation across the East Midlands in the proportion of all staged cases that are diagnosed with an early stage of disease by cancer site. However, care needs to be taken when interpreting this as the completion of stage data also varies across the region and may mean that there is an underreporting of early stage disease as illustrated in Figure 27. Tables of the number of cases by stage and CCG are available in Appendix tables A7-A9 a) breast cancer b) colorectal cancer c) lung cancer 31

32 Table 27, proportion of missing stage data for breast, colorectal and lung cancers, respectively, a) breast cancer b) colorectal cancer c) lung cancer 32

33 Cancer in East Midlands Survival Figures 28 and 29 show one-year and five-year relative survival for the three main cancer types for men and women in the East Midlands, and the percentage change in one-year survival between and Lung cancer had the poorest one-year and five-year survival rates in both men and women; one-year survival was 30% for men and 35% for women and five-year survival was 7% for men and 8% for women. Lung cancer survival in the East Midlands was similar to the England average. For colorectal cancer, one-year survival for both men (78%) and women (73%) was significantly lower than the England average (77% and 74% for men and women respectively). Five-year survival for males with colorectal cancer was also significantly lower than the national average, 52% compared to an England average of 54%. All cancers presented showed an improvement in one-year survival between and , with the greatest improvement in lung cancer. Figure 28, Change in one-year relative survival (between and ), one-year relative survival ( ) and five-year relative survival ( ) by cancer type for females in the East Midlands 1 Females Change in 1- year survival 1-year survival year survival Breast Colorectal Lung 1% 3% 6% 96% 73% 35% 84% 53% 8% Figure 29, Change in one-year relative survival (between and ), one-year relative survival ( ), and five-year relative survival ( ) by cancer type for males in the East Midlands 1 Males Prostate Colorectal Lung Change in 1- year survival 1-year survival year survival % 5% 3% 95% 78% 30% 81% 52% 7% 33

34 Cancer in East Midlands Figure 30, one-year survival index (%) for breast, colorectal and lung cancer respectively by CCG, East Midlands, There was significant variation across the region in the one-year survival for all three cancers breast cancer ranged from 93.6% in Mansfield and Ashfield CCG to 97.8% in Leicestershire County and Rutland CCG colorectal cancer ranged from 68.2% in Leicester City (lowest nationally) to 81% in Rushcliffe CCG lung cancer ranged from 30% in Corby CCG to 39% in South Lincolnshire CCG a) breast cancer b) colorectal cancer c) lung cancer 34

35 Percentage (%) Cancer in East Midlands Place of death Reviewing data across the entire patient pathway is extremely important as a holistic approach is needed to improve outcomes. This includes looking at prevention efforts, through diagnosis and treatment to end of life care. Commissioned by Dying Matters, NatCen Social Research interviewed 2,145 adults in Britain on their attitudes to dying as part of the 2012 British Social Attitudes survey. The survey found that although 70% of the public say they are comfortable talking about death, most have not discussed their end of life wishes or put plans in place. Of the people asked, only 7% said they would prefer to die in hospital, compared to two-thirds (67%) who would prefer to die at home. 22 Figure 31 shows the place of death for cancer patients from the East Midlands who died This is presented alongside preferred place of death for England from the 2012 British Social Attitudes survey. 22 Twenty seven per cent of patients died at a private home while a further 7% died in a nursing or care home, which may also be considered their home. Thirty nine per cent of cancer patients died in hospital. Around 5% of cancer patients in the East Midlands died in a hospice. Figure 31, Place of death for cancer patients in East Midlands, and Preference for England, Preference Place of death Hospice Hospital Somewhere else Private home Care or Nursing home Unknown Don't mind 35

36 There remain many other factors that can influence patient experience during end of life care, and therefore the above information only paints a small part of the picture. Acknowledging this fact, in July 2016 the government published a set of commitments in response to the review of choice in end of life care (Figure 32). The response also included an intent to publish benchmarking information on quality and choice in end of life care. Figure 32, Our commitment to you for end of life care: the government response to the review of choice in end of life care, July 2016 Our commitment to you is that, as you approach the end of life, you should be given the opportunity and support to: have honest discussions about your needs and preferences for your physical, mental and spiritual wellbeing, so that you can live well until you die make informed choices about your care, supported by clear and accessible published information on quality and choice in end of life care; this includes listening to the voices of children and young people about their own needs in end of life care, and not just the voices of their carers, parents and families develop and document a personalised care plan, based on what matters to you and your needs and preferences, including any advance decisions and your views about where you want to be cared for and where you want to die, and to review and revise this plan throughout the duration of your illness share your personalised care plan with your care professionals, enabling them to take account of your wishes and choices in the care and support they provide, and be able to provide feedback to improve care involve, to the extent that you wish, your family, carers and those important to you in discussions about, and the delivery of, your care, and to give them the opportunity to provide feedback about your care know who to contact if you need help and advice at any time, helping to ensure that your personalised care is delivered in a seamless way 36

37 Key points This report gives an overview of the cancer landscape across the East Midlands, to support local discussion and benchmarking. Continued improvements in areas such as screening uptake, the proportion of cancers diagnosed at an early stage, and increases in one- and five-year survival are required to maintain progress across the region. Continued action is needed to tackle lifestyle related risk factors for cancer such as smoking, obesity, physical activity and alcohol use. Targeted interventions may be required among specific populations such as areas with higher levels of deprivation. The data in this report suggests: more people than ever are being diagnosed with cancer each year and incidence rates in the majority of cancers are increasing. Some cancers in particular are increasing at greater rates than others, for example lung cancer in females. Very few cancers have decreasing numbers of new cases (stomach cancer being the main example). In general there is large variation in cancer incidence within the region the number of people living with cancer and beyond their cancer (cancer prevalence) is growing and will continue to grow over the coming years. This is due to a number of factors including an ageing population, but also higher rates of early diagnosis and better treatments, meaning that more people are surviving cancer than ever before both one-year and five-year survival from cancer is increasing and improvements in early-stage diagnosis, treatments and other developments across the cancer pathway will help to ensure further improvements in survival over time. Critically, these factors will also contribute to people living with good health for many years after their cancer, something that will be extremely important as the prevalence of cancer grows although average screening rates in the East Midlands are significantly higher than those for England on the whole, there remains a significant proportion of the population who do not engage with screening services. Getting more people into the three national screening programmes, so more CCGs exceed the England average screening rates, while actively working to reduce variation across the region and between GP practices would help more people get an early stage diagnosis. This is particularly important for those in the most deprived groups, as this is where uptake is lowest 37

38 higher prevalence of lifestyle-related risk factors for cancer and poor screening uptake rates are often linked with higher levels of deprivation. There may also be links with ethnic and cultural factors, although these are largely unknown at the moment. Identifying groups at greater risk of engaging in risk factor behaviours and those less likely to engage with screening and other primary care services is one of the first steps in changing behaviours at population level. Interventions targeted at these groups should be evidence based and evaluated in order to promote wider roll-out for those people that do not survive their cancer it is important that we learn about their wishes and help to make provision for them to receive the care that s right for them towards the end of their life. As the population of older people grows, it is likely that more cancer patients will have a number of co-morbidities and so have multiple care needs. It will be important that services are available to care for such patients effectively across various locations. Finally, while we know there is disparity between people s preferences for place of death and where deaths actually occur, we do not have data to understand this in more detail 38

39 Appendix Table A 1. Lower Tier Local Authority Code to Name Look-up Key for maps 00FK Derby 00FN Leicester 00FP Rutland 00FY Nottingham 17UB Amber Valley 17UC Bolsover 17UD Chesterfield 17UF Derbyshire Dales 17UG Erewash 17UH High Peak 17UJ North East Derbyshire 17UK South Derbyshire 31UB Blaby 31UC Charnwood 31UD Harborough 31UE Hinckley and Bosworth 31UG Melton 31UH North West Leicestershire 31UJ Oadby and Wigston 32UB Boston 32UC East Lindsey 32UD Lincoln 32UE North Kesteven 32UF South Holland 32UG South Kesteven 32UH West Lindsey 34UB Corby 34UC Daventry 34UD East Northamptonshire 34UE Kettering 34UF Northampton 34UG South Northamptonshire 34UH Wellingborough 37UB Ashfield 37UC Bassetlaw 37UD Broxtowe 37UE Gedling 37UF Mansfield 37UG Newark and Sherwood 37UJ Rushcliffe 39

40 Table A 2. Clinical Commissioning Group Code to Name Look-up Key for map 03X 03Y 04E 04H 04J 04K 04L 04M 04N 04R 03V 04G 03T 03W 04C 04D 04Q 04V 99D 01Y 02Q NHS EREWASH CCG NHS HARDWICK CCG NHS MANSFIELD AND ASHFIELD CCG NHS NEWARK & SHERWOOD CCG NHS NORTH DERBYSHIRE CCG NHS NOTTINGHAM CITY CCG NHS NOTTINGHAM NORTH AND EAST CCG NHS NOTTINGHAM WEST CCG NHS RUSHCLIFFE CCG NHS SOUTHERN DERBYSHIRE CCG NHS CORBY CCG NHS NENE CCG NHS LINCOLNSHIRE EAST CCG NHS EAST LEICESTERSHIRE AND RUTLAND CCG NHS LEICESTER CITY CCG NHS LINCOLNSHIRE WEST CCG NHS SOUTH WEST LINCOLNSHIRE CCG NHS WEST LEICESTERSHIRE CCG NHS SOUTH LINCOLNSHIRE CCG NHS TAMESIDE AND GLOSSOP CCG NHS BASSETLAW CCG 40

41 Cancer in East Midlands Tables A3-A6, Distribution of presentation routes by tumour stage, 2013, England Lung Stage 1 Stage 2 Two week wait Confidence interval 13% 14% 9% 10% 26% 27% 45% 47% 5% 6% GP referral Confidence interval 19% 20% 8% 10% 19% 21% 38% 40% 12% 14% Other managed Confidence interval 20% 22% 8% 10% 19% 21% 36% 38% 13% 15% Emergency presentation Confidence interval 6% 7% 4% 4% 11% 13% 58% 60% 18% 19% Death certificate only & unknown Confidence interval 6% 10% 2% 5% 6% 10% 31% 37% 44% 51% All routes 13% 9% 27% 46% 5% 19% 9% 21% Stage 3 Stage 4 Stage unknown 37% 14% Confidence interval 13% 13% 7% 7% 18% 19% 47% 48% 13% 14% 9% 8% 3% 8% Breast Stage 1 Stage 2 Screen detected 20% 20% 39% 13% 7% 4% 12% 59% 18% 34% 47% 13% 7% 19% 47% 14% Confidence interval 61% 63% 24% 26% 4% 4% 1% 1% 8% 9% Two week wait Confidence interval 26% 27% 42% 43% 11% 12% 4% 5% 15% 16% GP referral Confidence interval 27% 29% 28% 31% 6% 8% 7% 9% 26% 29% Other managed Confidence interval 32% 38% 16% 20% 5% 8% 8% 11% 29% 34% Emergency presentation Confidence interval 8% 11% 14% 17% 6% 8% 31% 35% 33% 38% Death certificate only & unknown Confidence interval 24% 28% 21% 25% 4% 6% 2% 4% 41% 46% All routes 28% 29% Stage unknown 62% 25% 4% 1% 8% 27% 42% 12% 4% 15% 35% 18% Stage 3 Stage 4 9% 31% Confidence interval 37% 38% 33% 34% 8% 9% 5% 5% 16% 16% 7% 7% 26% 23% 5% 8% 27% 9% 16% 7% 33% 35% 3% 43% 37% 34% 8% 5% 16% 41

42 Colorectal Stage 1 Stage 2 Screen detected Confidence interval 32% 35% 24% 27% 26% 29% 7% 9% 5% 7% Two week wait Confidence interval 14% 15% 26% 28% 29% 31% 21% 23% 6% 7% GP referral Confidence interval 18% 20% 23% 25% 24% 26% 18% 20% 12% 14% Other managed Confidence interval 18% 21% 24% 26% 21% 24% 17% 20% 13% 15% Emergency presentation Confidence interval 5% 6% 20% 21% 21% 22% 31% 33% 20% 22% Death certificate only & unknown Confidence interval 9% 13% 13% 18% 16% 22% 14% 19% 36% 42% All routes 19% 24% Stage unknown 34% 25% 28% 8% 6% 14% 27% 30% 22% 7% 20% 25% Stage 3 Stage 4 25% 23% 11% 15% 19% 19% 19% 14% 5% 21% 21% 32% 21% 16% 13% 39% 15% 24% 26% 22% 13% Confidence interval 15% 16% 24% 25% 25% 26% 21% 22% 13% 14% Prostate Stage 1 Stage 2 Two week wait Confidence interval 24% 26% 19% 20% 20% 22% 20% 21% 13% 14% GP referral Confidence interval 35% 37% 22% 23% 15% 17% 9% 9% 16% 17% Other managed Confidence interval 35% 38% 15% 18% 12% 14% 10% 13% 22% 24% Emergency presentation Confidence interval 11% 13% 5% 6% 5% 7% 37% 41% 36% 39% Death certificate only & unknown Confidence interval 22% 27% 10% 14% 9% 13% 8% 11% 42% 47% All routes 25% 20% 21% 21% 14% 36% 22% 37% 16% Stage 3 Stage 4 16% 13% 24% 12% 11% Stage unknown 11% 23% Confidence interval 29% 30% 19% 19% 17% 17% 16% 17% 18% 19% 9% 16% 12% 5% 6% 39% 37% 9% 45% 29% 19% 17% 17% 18% 42

43 The data in tables A7 to A9 are publicly available 20 and has been deemed not to require disclosure control to number less than five. Table A7, Number of lung cancer cases by stage group, CCG, 2014 CCG Stage 1 Stage 2 Stage 3 Stage 4 No stage recorded All cases NHS Bassetlaw NHS Corby NHS East Leicestershire and Rutland NHS Erewash NHS Hardwick NHS Leicester City NHS Lincolnshire East NHS Lincolnshire West NHS Mansfield & Ashfield NHS Nene NHS Newark & Sherwood NHS North Derbyshire NHS Nottingham City NHS Nottingham North & East NHS Nottingham West NHS Rushcliffe NHS South Lincolnshire NHS South West Lincolnshire NHS Southern Derbyshire NHS West Leicestershire East Midlands Table A8, Number of lung cancer cases by stage group, CCG, 2014 CCG Stage 1 Stage 2 Stage 3 Stage 4 No stage recorded All cases NHS Bassetlaw NHS Corby NHS East Leicestershire and Rutland NHS Erewash NHS Hardwick NHS Leicester City NHS Lincolnshire East NHS Lincolnshire West NHS Mansfield & Ashfield NHS Nene NHS Newark & Sherwood NHS North Derbyshire NHS Nottingham City NHS Nottingham North & East NHS Nottingham West NHS Rushcliffe NHS South Lincolnshire NHS South West Lincolnshire NHS Southern Derbyshire NHS West Leicestershire East Midlands

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