ACHIEVING WORLD-CLASS CANCER OUTCOMES - A STRATEGY FOR ENGLAND 2015-2020 - Report of the Independent Cancer Taskforce - Cancer Research UK
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ACHIEVING WORLD-CLASS CANCER OUTCOMES A STRATEGY FOR ENGLAND 2015-2020 Report of the Independent Cancer Taskforce
2 CONTENTS EXECUTIVE SUMMARY 4 1. THE CURRENT LANDSCAPE OF CANCER IN ENGLAND 7 2. AMBITIONS AND PERFORMANCE METRICS 12 2.1 CANCER INCIDENCE 12 2.2 CANCER SURVIVAL 12 2.3 PATIENT EXPERIENCE AND QUALITY OF LIFE 13 2.4 UNDERPINNING METRICS 13 3. PRINCIPLES 16 4. HOW SHOULD WE REDUCE THE GROWTH IN THE NUMBER OF CANCER CASES? 17 4.1 LIFESTYLE AND AWARENESS 17 4.2 SMOKING 18 4.3 OBESITY AND OVERWEIGHT 19 4.4 ALCOHOL 20 4.5 UV RADIATION EXPOSURE 20 4.6 HPV INFECTION 21 4.7 DRUGS TO PREVENT CANCER 21 4.8 LIFESTYLE-BASED SECONDARY PREVENTION 22 4.9 OCCUPATIONAL EXPOSURES 22 5. HOW SHOULD WE IMPROVE SURVIVAL? 23 5.1 SCREENING 23 5.2 EARLY DIAGNOSIS 26 5.3 TREATMENT 34 5.4 MOLECULAR DIAGNOSTICS 39 5.5 ENHANCING TREATMENT SERVICE DELIVERY 41 5.6 SPOTLIGHT ON TARGET GROUPS 42 5.7 EARLY ACCESS TO PALLIATIVE CARE AND AHP SERVICES 45 5.8 RESEARCH AND INNOVATION 45 6. HOW SHOULD WE IMPROVE EXPERIENCES OF CARE, TREATMENT AND SUPPORT? 48 6.1 MEASURING PATIENT EXPERIENCE 48 6.2 INCENTIVISING CONTINUOUS IMPROVEMENT IN PATIENT EXPERIENCE 50 6.3 STAFF EXPERIENCE 50 6.4 SHARED DECISION-MAKING 50 6.5 DIGITAL COMMUNICATION 51 6.6 WORKFORCE COMMUNICATION SKILLS 52 6.7 ROLE OF CLINICAL NURSE SPECIALISTS 52 6.8 CANCER SUPPORT GROUPS 53
3 ACHIEVING WORLD-CLASS CANCER OUTCOMES A STRATEGY FOR ENGLAND 2015-2020 7. HOW SHOULD WE IMPROVE THE QUALITY OF LIFE OF PATIENTS AFTER TREATMENT AND AT THE END OF LIFE? 54 7.1 LIVING WITH AND BEYOND CANCER 54 7.2 MEASURING QUALITY OF LIFE 55 7.3 COMMISSIONING SERVICES FOR PEOPLE LIVING WITH AND BEYOND CANCER 56 7.4 FOLLOW-UP PATHWAYS 57 7.5 CANCER REHABILITATION 58 7.6 DEPRESSION 58 7.7 PROVISION OF CARE IN THE COMMUNITY 59 7.8 SUPPORTING PEOPLE WITH CANCER TO RETURN TO WORK 59 7.9 END OF LIFE AND PALLIATIVE CARE 60 8. HOW SHOULD WE IMPROVE THE EFFICIENCY AND EFFECTIVENESS OF DELIVERY AND DRIVE IMPLEMENTATION? 62 8.1 COMMISSIONING 63 8.2 LOCAL IMPROVEMENT ARCHITECTURE 65 8.3 NATIONAL QUALITY STANDARDS 66 8.4 QUALITY ASSESSMENT 67 8.5 WORKFORCE 68 8.6 CANCER DATA AND INTELLIGENCE 72 8.7 RESPONSIBILITY FOR IMPLEMENTING THE STRATEGY 73 8.8 NATIONAL ACCOUNTABILITY 74 8.9 VALUE FOR MONEY 74 8.10 BEYOND 2020 74 9. HOW MUCH WILL IT COST? 75 9.1 COSTS DRIVEN BY GROWTH IN DEMAND, INFLATION AND NEW TECHNOLOGY 75 9.2 SPECIFIC INITIATIVES IN THE STRATEGY – COSTS INCLUDED IN BASELINE 75 9.3 SPECIFIC INITIATIVES IN THE STRATEGY – INCREMENTAL ANNUAL COSTS 76 9.4 SPECIFIC INITIATIVES IN THE STRATEGY – INCREMENTAL CAPITAL COSTS 77 9.5 COST SAVINGS – CONTRIBUTION TO THE FUNDING AND EFFICIENCY GAP 77 ANNEX A: METHODOLOGY AND ACKNOWLEDGEMENTS 79 ANNEX B: GLOSSARY AND ABBREVIATIONS 81 ANNEX C: REFERENCES 87
4 EXECUTIVE SUMMARY Over the next five years, we can improve Over the last ten years, we have been able radically the outcomes that the NHS delivers to fill critical gaps in our knowledge about for people affected by cancer. This report cancer. We have begun to understand its proposes a strategy for achieving this. intricacies better as well as the short and long term impacts it can have on patients. It includes a series of initiatives across the This has enhanced our ability to address patient pathway. These emphasise the these impacts and deliver improved importance of earlier diagnosis and of living outcomes for patients, their carers and their with and beyond cancer in delivering families, as well as limit the burden that outcomes that matter to patients. The report cancer places on society. recognises that no two patients are the same, either in their cancer or their health However, the number of people diagnosed and care needs. At its heart, it sets out a and living with cancer each year will vision for what cancer patients should continue to grow rapidly, even with major expect from the health service: effective improvements in prevention. The primary prevention (so that people do not get reasons for this are our ageing population cancer at all if possible); prompt and and our success in increasing survival. This accurate diagnosis; informed choice and will place significant additional demand on convenient care; access to the best effective health and social care services. Cancer treatments with minimal side effects; always survival in England has improved knowing what is going on and why; holistic significantly over the last 15 years. More than support; and the best possible quality of life, half of people receiving a cancer diagnosis including at the end of life. It is crucial that will now live ten years or more. But our patients are treated as individuals, with mortality rates are higher than they could compassion, dignity and respect be. In addition, unacceptable variability throughout. The strategy seeks also to exists in access to and experience of care harness the energy of patients and across different areas, sub-groups of the communities and encompass their population and cancer types. There is much responsibilities to the health service. This we could do to improve patient experience means taking personal ownership for and long-term quality of life, and to make preventing illness and managing health; our care more patient-centred. getting involved in the design and optimisation of services; and providing The Independent Cancer Taskforce has knowledge as experts through experience. consulted widely to determine how the NHS can deliver a step-change in outcomes. It For the NHS, there is the opportunity to has identified where opportunities exist for deliver the vision set out in the Five Year improvement, and how resources can be Forward View (FYFV). Because of the strong used differently and in a more targeted way. evidence base that exists, cancer is uniquely Realising the potential will require a broad placed to be an early exemplar. Success in set of approaches, including more delivering the aspirations of this strategy will integrated pathways of care and increased depend on devolved decision-making, investment. It will need the active agility, and new models of care, within a involvement of a range of individuals and framework of national standards and organisations beyond the NHS. Many of ambitions. In turn, this will be reliant on these approaches will deliver benefits not research and intelligent use of data to drive just for cancer patients, but for people with a continuous improvement, as well as a “test range of other conditions. They will also and learn” approach in areas where the deliver financial savings in the medium to evidence of what works is immature. It will long term. also be reliant on the culture and attitude of health care professionals in embracing This report encompasses a large number of partnership working with patients, seeing recommendations. However, we propose them as equals in decisions about their that the six strategic priorities over the next treatment and care. five years should be:
5 ACHIEVING WORLD-CLASS CANCER OUTCOMES A STRATEGY FOR ENGLAND 2015-2020 • Spearhead a radical upgrade in follow-up care will be in place for the prevention and public health: The NHS common cancers. A national quality of should work with Government to drive life measure should be developed by 2017 improvements in public health, including to ensure that we monitor and learn a new tobacco control strategy within the lessons to support people better in living next 12 months, and a national action well after treatment has ended. We also plan on obesity. We should aim to reduce recommend that CCGs should adult smoking prevalence to less than commission appropriate End of Life care, 13% by 2020 and less than 5% by 2035; in accordance with the NICE quality standard, and taking into account the • Drive a national ambition to achieve independent Choice Review and earlier diagnosis: This will require a shift forthcoming Ambitions; towards faster and less restrictive investigative testing, quickly responding to • Make the necessary investments patients who present with symptoms, by required to deliver a modern high- ruling out cancer or other serious disease. quality service, including: We recommend setting an ambition that by 2020, 95% of patients referred for testing o Implementing a rolling plan to replace by a GP are definitively diagnosed with linear accelerators (linacs) as they cancer, or cancer is excluded, and the reach 10-year life and to upgrade result communicated to the patient, within existing linacs when they reach 5-6 four weeks. Delivering this will require a years; significant increase in diagnostic o Working to define and implement a capacity, giving GPs direct access to key sustainable solution for access to new investigative tests, and the testing of new cancer treatments, building from the Cancer Drugs Fund; models which could reduce the burden o Rolling out a molecular diagnostics and expectation on GPs; service which is nationally- commissioned and regionally • Establish patient experience as being delivered, enabling more personalised on a par with clinical effectiveness and prevention, screening and treatment; safety: We have the opportunity to o Implementing plans to address critical revolutionise the way we communicate workforce deficits and undertaking a with and the information we provide to strategic review of future workforce cancer patients, using digital needs and skills mix for cancer. The technologies. From the point of cancer priority deficit areas to address should diagnosis onwards, we recommend be radiology, radiography and giving all consenting patients online endoscopy for diagnosis; and clinical oncology, medical oncology and access to all test results and other clinical nurse specialists for treatment communications involving secondary or and care; tertiary care providers by 2020. We should o Supporting a broad portfolio of cancer also systematise patients having access research. to a Clinical Nurse Specialist (CNS) or other key worker to help coordinate their • Overhaul processes for commissioning, care. We should continue to drive accountability and provision. We improvement through meaningful patient recommend setting clearer expectations, experience metrics, including the annual by the end of 2015, for how cancer Cancer Patient Experience Survey, which services should be commissioned. For should be embedded in accountability example, most treatment would be mechanisms; commissioned at population sizes above CCG level. By 2016, we should establish • Transform our approach to support Cancer Alliances across the country, people living with and beyond cancer: bringing together key partners at a sub- We recommend accelerating the roll-out regional level, including commissioners, of stratified follow up pathways and the providers and patients. These Alliances “Recovery Package”. The aim should be should drive and support improvement that by 2020 every person with cancer will and integrate care pathways, using a have access to elements of the Recovery dashboard of key metrics to understand Package, and stratified pathways of
6 variation and support service redesign. We should also pilot new models of care and commissioning. For example, the entire cancer pathway in at least one area should have a fully devolved budget over multiple years, based on achieving a pre-specified set of outcomes. The National Audit Office has estimated cancer services cost the NHS approximately £6.7bn per annum in 2012/13. The Five Year Forward View projections indicate that this will grow by about 9% a year, implying a total of £13bn by 2020/21. The recommendations set out in this report will cost an estimated £400m per annum, of which approximately £300m per annum may already be included within the FYFV baseline projections. However, in the medium term, implementation of these recommendations should contribute substantially in excess of £400m per annum to the projected £22bn funding gap. If the NHS is successful in implementing the initiatives and ambitions outlined in this strategy, we expect that the most significant benefits will be: • An additional 30,000 patients per year surviving cancer for ten years or more by 2020, of which almost 11,000 will be through earlier diagnosis; • A closing of the gap in survival rates between England and the best countries in Europe and elsewhere; • Better integration of health and social care such that all aspects of patients’ care are addressed, particularly at key transition points; • Cancer patients feeling better informed, and more involved and empowered in decisions around their care; • A radical improvement in experience and quality of life for the majority of patients, including at the end of life; • A reduction of the growth in the number of people being diagnosed with cancer; • A reduction in the variability of access to optimal diagnosis and treatment and the resulting inequalities in outcomes; • Significant savings which can be re- invested to cope with increases in demand and to achieve further improvements in outcomes.
7 ACHIEVING WORLD-CLASS CANCER OUTCOMES A STRATEGY FOR ENGLAND 2015-2020 1. THE CURRENT LANDSCAPE OF CANCER IN ENGLAND Every two minutes someone in England will are increasing our age-standardised risk. be told they have cancer. Half of people These changes place increasing demands born since 1960 will be diagnosed with on the health system, alongside demands cancer in their lifetime1 (see Figure 1), with resulting from the changing nature of other that proportion continuing to rise. The good conditions. As noted in the FYFV, long-term news is that cancer survival is at its highest health conditions – rather than illnesses ever2, with significant improvements made amenable to a one-off cure – now consume over the last 15 years. More than half of 70% of the health service budget. people receiving a cancer diagnosis will now live ten years or morei2. This progress has been driven by improvements in our New cancer patients diagnosed knowledge of how to treat and control 400,000 s case cancer, combined with the commitment of new NHS staff to deliver transformative care. o je cted 300,000 Pr ses New ca Lifetime risk of cancer 55% 200,000 100,000 50% 0 45% 2000 2010 2020 2030 Year of diagnosis 40% Figure 2: Incidence projection4 Cancer is the biggest cause of death from 35% illness or disease in every age group, from the very youngest children through to old 1930 1940 1950 1960 age, with mortality significantly higher in Year of birth men than in women. Death rates in England Figure 1: Lifetime risk of cancer1 have fallen by more than a fifth over the last 30 years and by 10 per cent over the last A total of 280,000 individuals are now decade5. They are expected to continue to diagnosed with cancer in a year, a number fall, with a drop of around 17% by 20306 (see which has been growing by around 2% per Figure 3). But 130,000 people still die from annum3 (see Figure 2). Around half of these cancer each year – a number that has diagnoses will be of the most common remained relatively constant as incidence cancers – breast, lung, prostate, and has increased. There also remain groups of colorectal – and the other half will be of rare patients for whom outcomes and quality of or less common types. Incidence is life are particularly poor. Survival has expected to reach over 300,000 diagnoses in improved significantly in some types of 2020, and more than 360,000 in 20304. The cancer, notably malignant melanoma, rise is due partly to the ageing and growth of breast, testicular and prostate cancers. the population, a result of the overall success However, in lung, pancreas and of the healthcare system, such that people oesophageal cancers and most brain are less likely to die early from other tumours, survival has remained stubbornly conditions, such as cardiovascular disease. low to date. But the rise in cancer diagnoses is also in part driven by shifts in our lifestyles, which i Age-standardised ten-year survival from all cancers is now above 50%
8 Fig 4 - Deprivation.pdf 1 16/07/2015 10:14 Actual and Projected Number of Deaths, UK Avoidable Cancer of 300 Lung unknown Larynx 650 primary M Liver ale 250 1,600 650 Rate per 100,000 Per Stomach Others so ns 200 Fem ale 1,400 Oesophagus 150 1,200 Bowel 0 770 1970 1980 1990 2000 2010 2020 2030 Bladder Year 11,700 730 Figure 3: Cancer mortality projections – actual and projected number of deaths, persons, UK6 Bladder Cancer of We see significant variation in survival Lung unknown 520 primary outcomes for patients across England. For Others example, one year survival in some CCGs is 1,700 more than 10% higher than in others7. This Oesophagus variability cannot be explained solely by correlation with deprivation levels. It can be 1,100 quantified across a number of indicators. For Stomach example, there is around a two-fold 1,000 difference in the proportion of cancers Bowel diagnosed at an early stage8. 860 Health inequalities across England mean 9,900 Liver 600 there is potentially avoidable variation in survival outcomes9 (see Figure 4). There would be around 15,300 fewer cases and Figure 4: Yearly excess cancer cases and 19,200 fewer deaths per year across all deaths attributed to deprivation9 cancers combined9 if socio-economically deprived groups had the same incidence rates as the least deprived . More than half People in the UK with a cancer diagnosis of the inequity in overall life expectancy between social classes is linked to higher smoking rates among poorer people. 2 3.4 The combination of improvements in survival million million and detection, and a growing and ageing (projected) population has resulted in an estimated 2 million people living in England who have had a cancer diagnosis. This represents an 2010 2015 2020 2025 2030 increase of 0.3 million in the last five years10 and the number is projected to rise to 3.4 million in 203010 (see Figure 5). Of people Figure 5: Projections of cancer prevalence in living with cancer, prostate is the most England, 2010 – 203010 prevalent type in men and breast in women. Patient experience of hospital treatment has been measured systematically for the last four years and been positive overall. However, this masks considerable variability, with older and younger patients, those from BME groups, those with less common
9 ACHIEVING WORLD-CLASS CANCER OUTCOMES A STRATEGY FOR ENGLAND 2015-2020 cancers and those in some parts of the country such as London all reporting lower With no other levels of satisfaction11. Furthermore, patients long-term across the country report that poor conditions (LTCs) communication is the aspect of care most in need of improvement, both in terms of the 30% information they are given about their With 1 other LTC diagnosis and treatment options, and in the level of compassion and empathy they 22% receive. With 2 other LTCs Historically, there has been less focus on the 18% care received by patients after their initial treatment. We know that patients who have With 3+ other LTCs been diagnosed with cancer have a greater risk of being diagnosed with cancer again in the future. Many of the treatments we use 29% can have long-term physical and mental health consequences, which result in a high proportion of individuals requiring Figure 6: Proportion of people with cancer in subsequent health and social care support, the UK living with other long-term conditions12 and there are also practical impacts for patients such as loss of income. Our lack of Many patients have inadequate care attention to these issues may result in poorer support or may be carers themselves. quality of life for patients and increased Therefore, it is imperative to take a holistic pressure on their carers, as well as inefficient and individual perspective in considering use of scarce resources. the after-treatment care and support that patients need. Not doing so can have Many patients treated for a primary cancer multiple adverse consequences, not least will also develop secondary or metastatic exacerbating the “bed-blocking” problem cancer, which can often be incurable. which bedevils NHS secondary care services. Nevertheless, these patients may live for many years with the disease, and they For too many people, cancer remains a should be given the treatment and support disease from which they will die. Evidence they need to live for as long and as well as shows that many of these people are not possible, managing their cancer effectively experiencing the care they would like at the as a chronic condition. end of their lives. Around three in four people The experience and quality of life that with cancer would prefer to die at home with patients have through and beyond the right support and with their friends and diagnosis and treatment is equally as family around them, rather than in a hospital important as clinical effectiveness and or hospice13. However, less than a third are safety. Because the majority of cancer able to exercise that choice at present. We patients are over the age of 65, it is also the also know that just one in five people with case that many have multiple morbidities. It cancer who die at home have complete is estimated that 70% of cancer patients pain relief all the time in the last three have at least one other long-term condition months of life, compared with just under two- that needs managing and over a quarter thirds of those with cancer who die in a have at least three other such conditions12 hospice14. (see Figure 6). Despite international surveys15 ranking the NHS highly on the basis of overall performance in health and efficiency, this is not true of cancer outcomes, in which we lag considerably behind countries of similar wealth. Some aspects of our delivery – such as screening and vaccine uptake, and smoking cessation services – are admired across the world, but this is not reflected in
10 our survival rates. We have amongst the effective treatments. Neither do we have the lowest levels of cancer incidence of rich optimal capacity and configuration of countries, but amongst the highest levels of resources to support patients beyond their mortality16. This situation has persisted since initial treatment. researchers began collating these data systematically in the 1990s. There is now Lung cancer 5-year survival changes, 1995-1999 to 2005-2007 strong evidence that late diagnosis and sub- optimal access to treatment – particularly for 0% 5% 10% 15% 20% patients with more advanced disease - are Canada the key drivers for these poorer clinical Australia outcomes.17-21 Sweden The most up-to-date published international Norway comparisonsii show that relative survival during 1995-2007 improved for breast, Denmark colorectal, lung and ovarian cancer patients UK* cancer Lung cancer 22 Breast in all jurisdictions 5-year . However, survival changes, 1995-1999the gap in to 2005-2007 5-year survival changes, 1995-1999 to 2005-2007 survival between Lung cancer the highest performing Breast cancer 0% 5% 10% 15% 20% 70% 75% 80% 85% 90% countries 5-year (Australia, survival changes,Canada 1995-1999and Sweden) to 2005-2007 5-year survival changes, 1995-1999 to 2005-2007 Canada Sweden and the lowest (England, Northern Ireland, Bowel cancer Australia Australia 0% 5% 10% 15% 20% 70% 75% 80% 85% 90% Wales and Denmark) remains largely Canada 5-year survival changes, 1995-1999 to 2005-2007 Sweden unchanged, Sweden except for breast cancer, where Canada 45% 50% 55% 60% 65% Australia the UK is narrowing the gap22 (see Figure 7). Australia Australia MoreNorway recently, the survival gap has also Norway Sweden Canada started to close in stomach and rectal Canada Denmark Denmark Norwayaccording to as yet unpublished cancers, Norway UK* Sweden UK* data. But it remains significant in lung and Denmark Denmark colon cancers. Here there is also evidence Lung cancer Norway 5-year survival changes, 1995-1999 to 2005-2007 of aUK* worse stage distribution at diagnosis UK* Denmark 0% 5% 10% 15% 20% than comparator countries, i.e. cancers are Bowel more cancer on average at the time of advanced Ovarian Canada UK* cancer 5-year survival changes, 1995-1999 to 2005-2007 5-year survival changes, 1995-1999 to 2005-2007 diagnosis. Australia Bowel cancer 45% 50% 55% 60% 65% Ovarian cancer 25% 30% 35% 40% 45% 5-year survival changes, 1995-1999 to 2005-2007 *5-year UK includes SwedensurvivalEngland, changes,Northern Ireland 1995-1999 and Wales to 2005-2007 Australia Treatment differences play a more Canada signifi cant role45%than anticipated Canada 50% 55% at the 60% time65% Norway Norway 25% 30% 35% 40% 45% Australia Canada these international comparisons were Denmark Sweden Australia Canadawith survival within stage being initiated, Norway poorerNorway in England too (particularly for more UK* UK* Sweden Australia advanced Denmarkbreast and ovarian cancers). Denmark AcrossNorway Europe, cancer survival for older UK* peopleUK* (75 and above) tails off markedly Denmark Denmark Bowel cancer compared with survival for younger age UK* (e.g. 55-64) 23. In 2012, one year 5-year survival changes, 1995-1999 to 2005-2007 groups * UK includes England, Northern Ireland and Wales survival was 57% and 77% in these groups 45% 50% 55% 60% 65% respectively 23 . Australia * UK includes England, Northern Ireland and Wales Canada Over the last several years, the growth in demand for cancer services has not been Sweden met by an associated growth in capacity. Norway There are significant workforce deficits, Denmark particularly in diagnostic services, oncology, and in specialist nursing support. These UK* shortfalls result in severe bottlenecks in the diagnostic process, suboptimal care in * UK includes England, Northern Ireland and Wales certain parts of the country, and an inability to deliver newer, evidence-based and cost- Figure 7: Age standardised ﬁve-year survival trends, 1995 – 2007, by cancer and country22 ii Comparisons are with countries that also have universal health coverage and comprehensive cancer registration
11 ACHIEVING WORLD-CLASS CANCER OUTCOMES A STRATEGY FOR ENGLAND 2015-2020 Finally, commissioning of cancer services has become highly fragmented and, partly as a result, insufficiently accountable. CCGs consistently report that they have neither the expertise nor the time adequately to commission complex cancer services, many of which are changing rapidly as research drives progress. Until recently, CCGs had little role in the commissioning of diagnostic services, and some still do not. Pathways are neither optimised for patients nor for use of resources. Furthermore, there is a lack of hard accountability when providers or commissioners fail to meet national targets, as demonstrated by hospitals missing the 62- day wait standard for over a year24. In conclusion, there may be much to celebrate since the first NHS Cancer Plan was published in 2000, but there remains much more to do.
12 2. AMBITIONS AND PERFORMANCE METRICS This strategy focuses on the outcomes which some less common cancers or those with the matter most to patients and society. This is poorest outlook, will offer greater scope for not only about improving survival. We also gains than others. This strategy focuses on need to ensure that we reduce the incidence three ambitions related to survival: of cancer and improve patients’ experience and quality of life. • Increase in 5 and 10-year survival. Surviving for ten years following a cancer 2.1 CANCER INCIDENCE diagnosis is far more meaningful for patients than one or five years. Many Much could be done to slow the rise in the experts believe it should be possible that, numbers of patients being diagnosed with by 2034, 3 in 4 patients in England cancer each year. Increasing incidence diagnosed with cancer will survive at least places a considerable burden on the NHS. 10 years following their diagnosis, But it also places a huge burden on patients compared with 50% now, benefitting and their families, as they undergo intensive around 150,000 patients per year. By 2020, and sometimes debilitating treatment. We 57% of patients should be surviving ten recommend focusing attention on two key years or more. ambitions in this area: • Increase in one-year survival, with a • We will start to see a discernible fall in reduction in CCG variation. Surviving age-standardised incidence and a one year after diagnosis is clearly a pre- reduction in the number of cases linked requisite for long term survival and data is to deprivation. As noted above, overall available much sooner, which enables incidence has been rising, and we have commissioners and providers to track also seen an increase (5%) in age- progress. Furthermore, one-year survival standardised incidence rates over the last trends, alongside staging data, will ten years. Prevention efforts take time to specifically enable us to assess progress feed through in to incidence, beyond a on earlier diagnosis. We propose that five-year timeframe, but setting an one-year survival should reach 75% by ambition that is measured and reported 2020 for all cancers combined, compared on will keep the focus on these efforts, so with 69% now. Reducing variability will be that we see the benefits in the longer term. a key driver of overall improvement at a population level. Whilst it is implausible • By 2020, adult smoking rates will have that variability can be eliminated entirely, fallen much further. Smoking remains by raising survival across CCGs towards the far the largest modifiable risk factor for highest levels being delivered today cancer, responsible for around 60,000 should be possible. new cases per year in England25.This strategy sets a specific ambition that adult • Reduction in survival deficit for older smoking rates should fall to 13% by 2020, people. Recent international comparison and that rates in routine and manual data suggests that the deficit in survival is workers should fall to 21%. even greater for older people than it is for younger age groups for some types of cancer. Moreover, if we are to narrow the gap with other countries overall, we will 2.2 CANCER SURVIVAL also need to do so with older patients. Achieving improvements in survival will require a combination of earlier detection and diagnosis, better treatment and access to treatment, improved access to data and intelligence and reductions in variability around the country. Some cancer types, e.g.
13 ACHIEVING WORLD-CLASS CANCER OUTCOMES A STRATEGY FOR ENGLAND 2015-2020 2.3 PATIENT EXPERIENCE AND 2.4 UNDERPINNING METRICS QUALITY OF LIFE Many of the metrics proposed above are The NHS needs to move to a more patient- only available after a considerable time lag. centred service in line with the aspirations set Therefore it is essential that we also have a out in the FYFV, with a change in the series of supporting metrics, which will relationship between patients and enable commissioners and providers to professionals. It is therefore appropriate to have more rapid feedback on the impact of have ambitions that reflect this shift. In interventions and more timely intelligence addition, we need to transform our on the likely trajectory against the ambitions approach towards supporting people to live set out above. These metrics should also be well outside hospital and to return to their a key focus for Cancer Alliances, as the lives as far as possible after treatment has main vehicles for local service improvement ended. To achieve this requires a significant (see section 8.2). focus on measuring and improving people’s quality of life. For some areas, we do not yet Recommendation 1: NHS England, working have reliable measures, so these will need to with the other Arms Length Bodies, should be developed over the coming years: develop a cancer dashboard of metrics at the CCG and provider level, to be • Continuous improvement in patient reported and reviewed regularly by experience with a reduction in Cancer Alliances. The following metrics variation. In the latest Cancer Patient should be included as a minimum: Experience Survey (CPES), 89% of patients said overall their care was excellent or CCG Dashboard: very good11. It is quite likely that patient expectations will increase in coming • Proportion of patients referred by a GP years, so that maintaining or improving on with symptoms receiving a definitive this level of satisfaction will require cancer diagnosis or cancer excluded considerable effort. Some patient groups, within 2 and 4 weeks, with a target of such as those with rare and less common 50% at 2 weeks and 95% at 4 weeks by cancers, report less satisfactory 2020 experience. In addition, some areas of the country score poorly on patient • Proportion of diagnoses through satisfaction measures and we should emergency presentation expect these areas to deliver significant improvement in the coming years. CPES • Proportion of cancers diagnosed at should continue to evolve and should be stage 1 or 2, with a target of 62% by repeated every year, with patient 2020 for cancers staged, and an satisfaction measured for every hospital increase in the proportion of cancers and CCG. staged • Continuous improvement in long-term • Screening uptake, with an ambition of quality of life. We want people with 75% for FIT in the bowel screening cancer to lead healthy, fulfilled and programme by 2020 productive lives, as far as is possible, whether they have completed treatment • One-year survival or are living with an advanced and incurable form of the disease. To this end • Proportion of patients meeting cancer the strategy proposes the development of waiting times targets: target of 96% a national metric of quality of life, meeting 31 day target and 85% meeting underpinned by a robust approach to 62 day target measurement, which will incentivise the provision of better aftercare interventions, • CPES data as well as more informed choice at the point of diagnosis. • Proportion of patients with patient- agreed written after-treatment plan, with a target of 95% by 2020
14 • Under-75 mortality • Over-75 indicator (to be developed) • Further patient experience and quality of life measures as they are developed, e.g. Patient Reported Outcome Measures (PROMs) • Proportion of people who die who had a personalised end of life care plan Provider Dashboard: • Proportion of patients meeting cancer waiting times targets: target of 96% meeting 31 day target and 85% meeting 62 day target • CPES data • Data from clinical audits • Further patient experience and quality of life measures as they are developed, e.g. PROMs • Proportion of cancer patients participating in research Figure 8 is an illustration of how the ‘cancer dashboard’ for a CCG might be presented, including many of the metrics above. Where data are available we would expect them to be broken down across different cancer types and equality groups on request. The dashboard would be generated by the National Cancer Intelligence Network in conjunction with NHS England. For people who die from cancer, we need to incentivise the system to ensure these individuals experience a “good” death, with their preferences taken in to account. A good deal of end of life care is provided outside the NHS and suitable metrics have been proposed in the Choice Review.
15 ACHIEVING WORLD-CLASS CANCER OUTCOMES A STRATEGY FOR ENGLAND 2015-2020 Figure 8: Example ‘dashboard’ of metrics Figure 8: Example 'dashboard' of metrics
16 3. PRINCIPLES Certain principles are central to the context quality standards and appropriate and successful implementation of this population sizes. strategy: • Systems of external accountability: • One-size fits no-one: No two patients are Many different organisations at local and the same, either in their cancer or in their national level deliver services to prevent needs. We must strive towards greater cancer and to treat and support cancer stratification and personalisation of patients. Individual care pathways can approaches. Critical to this will be systems span several of these organisations. A and processes which capture the needs system of external accountability is and circumstances of individual patients therefore necessary, both at local and and their carers, and the recognition and national levels, to ensure cross- acceptance by doctors and other health organisational issues are appropriately care professionals of the patient as an considered and resolved. equal partner in their care. • Research and data as drivers of • Co-design: It is clear that fragmentation continuous improvement: Substantial of care is a reality for patients across opportunities exist to reduce variation and many health and social care pathways. to drive progress through intelligence and Putting the patient at the heart of the re- innovation. All parts of the health service design of services for cancer (and other must embed a culture in which data and long-term conditions) will require a will intelligence are seen as drivers of and determination that must be realised. improvement and that research and This principle should be embedded in controlled data access are viewed as a every aspect of the cancer journey, to core responsibility. ensure that services are responsive to patients’ needs. • Agility: The pace of progress in all aspects of cancer means that we need • Pre- and post- treatment are as processes and systems that are agile and important as treatment: This strategy adaptable. Agility will enable the rapid places considerable emphasis on the spread of cost-effective innovations. prevention and earlier diagnosis of Furthermore, this strategy takes a “test and cancer, as well as on living with and learn” approach in many areas, beyond cancer, and end-of-life care. recognising that we don’t know all the answers to the many different challenges • Individual responsibility and self- we face, and we need to try different management: We need to facilitate and solutions and evaluate them carefully empower people to take their share of before national roll-out. responsibility for staying healthy and where appropriate enable them to • Cancer as an exemplar for other manage their health and care needs. conditions: Many aspects of cancer services are relevant for other conditions. • Devolved decision-making, within Equally, a large proportion of cancer national standards and ambitions: patients have one or more other long- Cancer services (and the NHS more term conditions. Cancer is uniquely broadly) are too extensive for all decisions placed to drive forward the vision set out to be made nationally. Local or regional in the FYFV. We should learn what works for decision-making unlocks creativity and cancer, and ensure we apply lessons as innovation, provides a vehicle for quickly as possible to other areas. Cancer clinicians and patients to drive service care should also take opportunities to development, and enables appropriate learn from other conditions. consideration of local circumstances (e.g. rural geographies). However, local decision-making must be within a national framework of agreed service
17 ACHIEVING WORLD-CLASS CANCER OUTCOMES A STRATEGY FOR ENGLAND 2015-2020 4. HOW SHOULD WE REDUCE THE GROWTH IN THE NUMBER OF CANCER CASES? supported in making appropriate lifestyle Chapter Summary choices. This is important not only for cancer but a variety of other potentially avoidable • More than 4 in 10 cases of cancer are conditions such as cardiovascular disease, caused by aspects of our lifestyles which diabetes and dementia. we have the ability to change. Tobacco remains the main risk factor, followed by The figures for England are stark. Despite obesity being widely acknowledged as having the best smoking cessation services in the world, • We need to continue to raise awareness nearly one in five adults still smokes. A third of the impact risk factors have on our of people drink too much alcohol. A third of health, especially in selected populations, men and half of women don’t get enough and support people to make changes exercise. Almost two thirds of adults are overweight or obese. Our young people • Efforts to tackle smoking rates should have the highest consumption of sugary soft continue at pace, with the ultimate aim of drinks in Europe26. reaching 5% in adults by 2035 • Vaccination and chemo-prevention will 4.1 LIFESTYLE AND AWARENESS play an increasing role An estimated 4 in 10 cases of cancer could • With increasing numbers of people be prevented, largely through modifying surviving their primary cancer, we need a aspects of our lifestyles which we have the stronger focus on preventing secondary ability to change27. The main risk factors cancers include tobacco, weight, diet, alcohol consumption, UV exposure and lack of sufficient physical activity (see Figure 9). There is much more we could do to ensure These are supplemented by other exposures, that people are engaging with health and such as air pollution, occupational risks, community services early enough to shift infections (including Human Papilloma Virus focus onto preventing rather than treating and viral hepatitis B and C) and radiation. disease. The ability of our National Health Service to deliver the care required now and Awareness needs to start early. The in the future is entirely dependent on the progression of children through school health of our nation. We will not be able to presents an opportunity to influence lifestyle sustain comprehensive health and social behaviours, including through children care coverage unless we take more being able to influence their families. concerted action on prevention. Rising Information on healthy lifestyles could be numbers of cancer cases that could be packaged with more tailored content prevented should be seen as unacceptable. relating to common signs and symptoms of It is within our control to prevent many cases cancer and other conditions. Early of cancer and we should seize this awareness would also provide young opportunity. This will require fundamentally people with the confidence to make best resetting the social contract within society, use of primary care services in later life, for such that individuals take more responsibility example in how to have constructive for their own health. It will also require conversations about their health. stronger leadership from Government, healthcare providers, and local organisations, so that individuals are
18 and diseases. Increased risk of cancer can Lifestyle factors be a powerful driver of change for many individuals, but there are low levels of KEEP awareness of the links between many risk A factors and cancer. HEALTHY BE SMOKE FREE WEIGHT Health and Wellbeing Boards (HWBs) can EAT FRUIT continue to play a valuable role as & VEG facilitators to encourage local government, local health services, communities and DRINK charities to work together to develop local LESS strategies, taking a cross-disease approach, ALCOHOL to address major social and environmental T LESS determinants of ill health. An important part EA SA LT T A HIGH BE EAT LESS EABRE DIET FI of local strategies will be health promotion initiatives to raise awareness and help SU T NS R PROCESSED MA VE & RED MEAT I BE ACT individuals make healthier choices around risk factors including smoking, alcohol, diet and physical activity. Partners should work Other factors together to ensure that local approaches are tailored to the local community, and appropriately target specific groups in which M IN I certain cancer types are particularly M Y N TI RT E S M IS E A H PENT O N MINIMISE MINIMISE RISKS AT WORK CERTAIN INFECTIONS BR prominent (e.g. prostate cancer, triple- negative breast cancer for BME groups). D such a IF E A S T F E EE s ON M I N ra -ray P O S SIB L M C TI IS E A I yx R A DI su s B& HP ch a do s a s b e sto s ar na ss H n d un nece V, tis .P ti ylo pa He Each time a person interacts with the health r i, E B V, HIV, service is an opportunity to encourage a Figure 9: Preventable cancer risk factors conversation about healthy lifestyles. Making ‘every contact count’ is an essential Subject to evaluation of pilots being culture shift that needs to be embraced by undertaken by Teenage Cancer Trust and everyone in the NHS who has contact with others, NHS England and Public Health the public and has the opportunity to have a England should consider the evidence base conversation to improve health. for rolling out a cancer education programme to all secondary schools to raise awareness of healthy lifestyles and cancer 4.2 SMOKING symptoms. Smoking rates have halved in Great Britain The health of the nation is not solely the over the last 35 years, declining steadily responsibility of NHS organisations; we need since the 1970s (see Figure 10). Current rates to harness efforts across local government, for all adults in England are at 18.4%28 employers and the wider community to although rates vary by age. This remarkable tackle prevention. Many local approaches change is principally down to governments are already in place or are being adopting a comprehensive and consistent developed. However, there is now a need for approach, both in supporting smokers to greater urgency, with concerted action to quit and in discouraging and denormalising focus on cancer. Local organisations are smoking in society as a whole. Indeed, we best-placed to determine which have not yet seen the benefit of measures combination of initiatives across education, introduced in the last Parliament, some of housing, planning and healthcare would which are still to be implemented. deliver the most impact, and which should be led through workplace health and wellbeing initiatives. A local approach also enables occupational risk factors in specific geographies to be taken into account. It is important to note that most risk factors are relevant to a number of different illnesses
19 ACHIEVING WORLD-CLASS CANCER OUTCOMES A STRATEGY FOR ENGLAND 2015-2020 Cigarette smoking prevalence (%) It is imperative that we maintain a focus to 100% drive down smoking rates further and target those groups with the worst outcomes to reduce health inequalities. For hard to reach 80% groups, evidence suggests that smoking cessation services and taxation are the 60% interventions which make the biggest difference. High quality smoking cessation services, coupled with Government action 40% male s on marketing and taxation, mean that we female should be optimistic that further declines are s 20% possible in the years ahead. New technologies such as e-cigarettes offer additional means to help people quit. Public 0% 1974 1980 1990 2000 2010 Health England and Government should Year carefully monitor the research programme initiated by Cancer Research UK, in Figure 10: Cigarette smoking prevalence conjunction with PHE, to understand better (%), Great Britain29 the use and safety of e-cigarettes in reducing tobacco consumption. But smoking still kills. 18.4% of the population equates to more than 8m adults; up to two- Adult smoking rates have been declining by thirds of long term smokers will die as a result around 0.7% per year over the last 10 years29. of their smoking if they do not quit30. Smoking If we maintain the current trajectory, we remains the leading cause of preventable would therefore be at 15% by 2020. We death and disease in England, responsible recommend being more ambitious than this. for around one in six deaths of adults aged The Government’s existing tobacco control 35 and over in 201331. It remains the largest plan comes to an end in 2015. A recent preventable cause of cancer, with an report by ASH sets out some of the steps we estimated 19% of cancer cases and more should consider next36. than a quarter of cancer deaths in the UK linked to exposure to tobacco smoke25, 32. Recommendation 2: Government should Around 60,000 cases per year could be work with Public Health England and NHS prevented if tobacco smoke exposure was England to publish a new tobacco control eliminated25. There is growing evidence that plan within the next 12 months. The smoking not only impacts cancer risk but ambition should be to reduce adult also response to treatment. There is also a smoking prevalence to less than 13% by strong financial rationale to continue to 2020 and less than 5% by 2035, and tackle smoking. The estimated total cost of reduce smoking among routine and tobacco use to society in England is £13.8 manual workers to 21% by 2020. The plan billion per year33, compared with revenue should include a full range of actions, from tobacco in 2013/14 of £7.6 billion34. such as a tobacco industry levy, a tax escalator, payment based incentives to Smoking throws into sharp focus the ensure smoking cessation services are challenge we face in England to tackle strengthened and a focus on groups health inequalities. Smoking prevalence is where smoking rates remain high, higher amongst people with lower incomes including social marketing campaigns (23% of individuals in the lowest income where appropriate. It should highlight the band, compared to just 11% amongst those importance of NHS action in primary and who earn £40,000 or more29). In addition, secondary care, in particular among smoking is relatively widespread amongst those with long-term conditions. people with mental health problems; an estimated 42% of tobacco in England is used by people with mental health issues35. 4.3 OBESITY AND OVERWEIGHT Smoking related inequalities also exist by gender, sexual orientation, and level of Obesity represents a critical challenge to the education. NHS, and its impact on the health of our nation is growing in significance. England is
20 amongst the worst performers on obesity in Western Europe. The proportion of the Recommendation 3: Public Health population that is overweight increased from England should work with the Government 58 per cent to 67 per cent in men and from and a wide range of other stakeholders to 49 per cent to 57 per cent in women between develop and deliver a national action 1993 and 201337 (see Figure 11). Sixteen per plan to address obesity, including a focus cent of boys and 15% of girls aged 2 to 15 on sugar reduction, food marketing, fiscal are obese37. The proportion of children who measures and local weight management are obese doubles while they are at primary services. Within this there should be a school. Less than one in ten are obese when strong focus on children. Implementation they enter reception class, but by the time of the programme should be supported by they reach year six, nearly one in five are PHE, aligned with the physical activity obese. A programme of work should be strategy ‘Everybody active, every day’. undertaken to evaluate the curriculum in primary schools and how lifestyle factors and behavioural changes are 4.4 ALCOHOL communicated. Alcohol consumption has more than Overweight and obesity prevalence (%) doubled in the UK since the 1950s39, 40. 70% Excessive alcohol consumption leads to around 12,800 UK cases of cancer each year s le and is linked to several different types of Ma cancer41. As little as one standard drink a ns day can increase the risk of a number of so 60% cancers. Consumption clearly has wide- r Pe Fe males reaching impacts beyond cancer, including increasing the risk of other health conditions, and to date much of the focus has been on 50% these wider societal issues. Awareness amongst the public of the links between alcohol and cancer specifically is low, with only a third identifying it as a risk factor. 40% Therefore there is an opportunity for a comprehensive alcohol strategy to 1995 2000 2005 2010 acknowledge the risk of cancer to help drive Year behaviour change. PHE has undertaken a rapid evidence review of alcohol harm and Figure 11: Obesity and overweight prevention and is writing a report to prevalence (%), England Government which will outline possible policy solutions. These statistics presage significant problems for the future in the form of cancer and other Recommendation 4: The PHE report should illnesses. An estimated 5% of cancer cases in form the basis for the development of a the UK each year are linked to excess national strategy to address alcohol bodyweight - 17,000 cases a year across consumption, possibly including measures bowel, womb, oesophageal, pancreatic, to tackle price, marketing, availability, kidney, liver, gallbladder and post- information on products and social menopausal breast cancers38 – as well as marketing campaigns to raise awareness. being linked to other conditions such as diabetes. Obesity can also have an impact on survival once a person has developed cancer because certain ‘life-saving’ 4.5 UV RADIATION EXPOSURE treatments, including surgery, may not be UV exposure is linked to one frequently lethal available to patients. Unlike tobacco, there cancer, malignant melanoma, which is has to date not been coordinated and increasing in incidence. It is now the fifth concerted action taken to address obesity, most common cancer type in England, and it is essential that this now becomes a responsible for 1,900 deaths per year42. priority. Continued action on UV exposure therefore
21 ACHIEVING WORLD-CLASS CANCER OUTCOMES A STRATEGY FOR ENGLAND 2015-2020 remains important to prevent more cases of Recommendation 5: By December 2016, this cancer. There are a number of simple PHE should determine the level at which actions that individuals can take to reduce HPV vaccination for boys would be cost- their exposure to UV radiation, but where effective. JCVI should make a final certain populations continue to need decision by 2017. Assuming a cost- support is in making healthy choices related effective price can be achieved, national to sunbeds. In those areas where sunbed use roll-out should take place by 2020. remains high, local strategies can helpfully include measures to limit over-exposure to UV radiation. Health and Wellbeing Boards 4.7 DRUGS TO PREVENT CANCER provide a forum to bring together local partners to ensure, through the joint Strategic The use of drugs to prevent cancer Needs Assessment (JSNA) process, that (including secondary cancers) is strategies are tailored to the needs of the increasingly likely to play a key role, local community and are appropriately particularly to prevent breast cancers in targeted to high-risk groups. specific groups of women. Tamoxifen is indicated for five years for pre-menopausal women at high risk and either tamoxifen or 4.6 HPV INFECTION aromatase inhibitors, e.g. anastrazole, for post-menopausal women at high risk, e.g. HPV is one of the most common sexually those who have a strong family historyiii44. transmitted infections. Persistent infection However, there is currently considerable with high-risk HPV types can lead to the variability in uptake and adherence of these development of cervical, other rare ano- medicines, given the long period over which genital cancers and some cancers of the they are taken. A more systematic approach head and neck. to making these drugs available could significantly improve outcomes. The HPV vaccine is currently offered routinely to females aged 12 to 13 years and the Recommendation 6: NHS England should programme’s primary aim is to reduce the work through CCGs to ensure that GPs are incidence of cervical cancer in women. The appropriately prescribing chemo- HPV vaccination programme in England has preventive agents to reduce the risk of been one of the most successful in the world, invasive breast cancer where their use is with more than 86% of year 8 girls receiving established through NICE guidelines. all three doses43 and early indications of a reduction in HPV 16/18 infections43. Since Approximately 5% of colorectal cancers September 2014, the programme has have a genetic hereditary basis45. Some switched to a two-dose schedule. The patients with these cancers have hereditary success of this programme needs to be non-polyposis colorectal cancer (HNPCC) or sustained and built upon. Men who have sex Lynch Syndrome. A randomised controlled with men are a group at high risk for HPV trial has shown that the long term use of infection, and will benefit much less from the daily aspirin by individuals known to harbour herd protection effects of the adolescent these genetic mutations can substantially female programme. Expanding the reduce the incidence of subsequent vaccination programme to include this colorectal cancer46. group of men is under consideration currently by the Joint Committee of Recommendation 7: NHS England should Vaccination and Immunisation (JCVI). commission NICE to develop updated Assessment of the extension of HPV guidelines for the use of drugs for the vaccination to adolescent boys is ongoing prevention of breast and colorectal and as the benefits of HPV vaccination cancers. Updated guidelines should become better known, there is good reason consider the use of aromatase inhibitors to consider the effectiveness and cost- for untreated post-menopausal women at effectiveness of gender-neutral vaccination. high risk and the use of aspirin for individuals with HNPCC. Once these guidelines are published, CCGs should Use of tamoxifen or an aromatase inhibitor for five years in post-menopausal women at high risk has been shown to reduce the risk of invasive breast cancer by iii 50% or more, with the benefit extending to 20 years or more
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