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CANCER DATA: EMPOWERING YOU TO ACT A guide for Members of Parliament Where to find the cancer data that matters to your constituents and how you can use it to take action 2 This toolkit has been created to help you access the cancer data that tells you about your local cancer services, allowing you to scrutinise their performance and compare them to the national average. As well as making it easy to find these data, we have suggested a number of ways that you can take action in both Parliament and in your local area. Armed with the best data and suggested actions, we are aiming to put you in a position to improve outcomes and experiences for local cancer patients and their families. 3 Contents About this toolkit pages 4-6 What can you do? pages 7-9 Where you can find local cancer data pages 10-17 • • • • • • • Incidence Prevalence Mortality Survival Patient experience Waiting standards Screening and vaccination About the Cancer Campaigning Group pages 18-20 Contact details pages 21-22 4 About this toolkit: why local data matters Why local data matters About this toolkit: purpose This toolkit is designed to help you access local cancer data, so you can assess the quality of cancer services in your area, and work together with partners to identify ways to improve these services. For example, if your area has high incidence of cancer, it may require specialist prevention or public awareness programmes. To help with this, we have suggested a number of actions you can take. Ultimately, effective use of local data, driving action, has the power to improve outcomes and experiences for patients and their families. Where can you find cancer data? A wealth of cancer data exists, but it is held in a number of different places. This includes: Public Health England (PHE), the Health and Social Care Information Centre (HSCIC), the National Cancer Intelligence Network (NCIN) and the Office for National Statistics (ONS). Further details Most of the data we refer to in this toolkit are available at clinical commissioning group level, but where this is not the case, we have outlined how to access the most local data available. Not all of the data are available for children and young people: the age range of the data has been made clear within each section. Further, in line with the work of the Cancer Campaigning Group, the toolkit is focused on England only. Some UK-wide statistics have been used where these are the only available statistics. 5 Accessing data: some considerations It is not always straightforward to access data. The specific type of data you may be interested in might be difficult to find, of low quality, not publicly available or not routinely collected by the NHS. For example, for members of the public to access data from datasets which contain information about radiotherapy and chemotherapy, special requests must be made to the bodies that govern it. This is important to protect patient data. Furthermore, data can also be hard to reach for specific patient groups, such as children and young people; BME patients; and those with rarer cancers. Despite being hard to find, it’s important to consider such subgroups when analysing where variations occur. We believe that the NHS should aim to produce high quality data that is as transparent and accessible as possible, as there are huge benefits to promoting public understanding of services and their performance. 6 Cancer in context: why should you act? The number of people living with cancer is projected to double from two million in 2010 to four million by 20301 Cancer is one of the diseases people are most scared of4 60 per cent of new UK cancer cases are diagnosed in people aged 65+2 Cancer is responsible for one in four deaths in the UK3 UK cancer outcomes still lag behind the best in Europe5 Cancer is the most common cause of nonaccidental death in children and young people6 What can you do? 8 What can you do? The data signposted to in this toolkit empowers you to scrutinise the performance of cancer services in your local area so that you can take action. Locally The following chapter includes specific actions that you can take in response to each dataset. The overarching actions set out here can be framed around any, or all, of the datasets that follow. In Parliament • Write to the chief executive of your local clinical commissioning group and hospital trust to ask what is being done to improve cancer outcomes • Examine the local statistics outlined to compare local performance against the national average • Meet with local patient groups to ask about their experiences of local cancer services • Seek meetings with all local partners to collaborate in helping to improve local cancer services • Table parliamentary questions on the performance of your local services • Highlight case studies of effective local services in parliamentary debates • Where performance requires improvement, write to the Secretary of State for Health and ask what steps are being taken at a national level to support local services • Meet with local and national partners to explore how they can work together to improve cancer outcomes 9 What can you do? Not all services for cancer patients are commissioned locally. Constituents who have rarer cancers and children and young people with cancer are likely to access specialised services, which are commissioned by NHS England, as well as those commissioned by your local NHS. This list of specialised conditions can be found here. We have included some suggestions for action you might take on behalf of these constituents. • Table parliamentary questions on the performance of specialised services • Highlight case studies of constituent experience of specialised services in parliamentary debates • Where performance requires improvement, write to the Secretary of State for Health and NHS England to ask what steps are being taken at a national level to improve NHS cancer care • Meet and work with your NHS England Regional Teams to encourage action to improve cancer services that they are responsible for 10 Where you can find local cancer data 11 Incidence Why do incidence data matter? Incidence data tells you the number of new cases of cancer diagnosed in your area, within a specific timeframe. Higher cancer incidence could be a linked to a range of risk factors7, for example smoking. Incidence data helps to assess the burden of cancer in your area and whether cancer prevention and public health programmes are needed. What incidence data are available? The latest incidence data available for England are available at both clinical commissioning group level and local authority level for all cancers. At clinical commissioning group level, incidence data are available for 2012. At local authority level, incidence data are available for 2010-2012. These data are agestandardised, which means that the statistics are adjusted to take into account the age range of the population in question. This makes it fairer to compare one area against another. Where can I access incidence data? Questions to consider: • How does the cancer incidence rate in my local area compare to the national average? Why is my area below/above the national average? • What public health programmes are being run to try and help prevent cancers from occurring? Incidence data for local authorities can be accessed via the HSCIC indicator portal, here. Once within the portal, search for “incidence of all cancers” and follow the first option. Incidence data for clinical commissioning groups can be accessed via Local Cancer Intelligence. It can also be accessed via the Cancer Commissioning Toolkit, here. 12 Prevalence Why do prevalence data matter? Prevalence data tells you the total number of people who are living with cancer in a given area, in contrast with incidence data, which tells you the number of new cases in a given time period. Prevalence data are important as they demonstrate an increasing number of people living with cancer, who may have different care or treatment needs from those who are newly diagnosed with cancer. What prevalence data are available? The latest prevalence data available for England at clinical commissioning group level shows the number of people living with cancer in 2010 who were diagnosed between 1991 and 2010. In addition, Local Cancer Intelligence contains projections on the 20year cancer prevalence for your local clinical commissioning group. Where can I access prevalence data? The HSCIC also has data on cancer prevalence for the financial year 2013/14, outlining the number of cancer patients for each clinical commissioning group as a percentage of the total number of patients. Prevalence data for clinical commissioning groups can be accessed via Local Cancer Intelligence, which includes projections on the 20-year cancer prevalence for your local clinical commissioning group. Questions to consider: • What is the trend for the number of people living with cancer in my local area? • What services are in place to ensure that people living with (and beyond) cancer have the right amount of social and emotional support, as well as access to appropriate treatments? HSCIC data on cancer prevalence for 2013-14 can be accessed via the indicator portal, here . Once within the portal, search for “prevalence of all cancers” and follow the first option. 13 Mortality Why do mortality data matter? Cancer mortality measures the number of people who have died from cancer in a given period of time. Age-standardised mortality data are important as they help to establish how effective local cancer services are at helping cancer patients to prolong life. Significant regional variation exists in the most recent data, with the best performing clinical commissioning group having 106.9 deaths from cancer per 100,000 people, and the worst performing having 2439.4 deaths per 100,000 people. What mortality data are available? Cancer mortality data are available at clinical commissioning group level, for all cancers (excluding non-melanoma skin cancer) for the years 200812. This data is age-standardised, which means that the statistics are adjusted to take into account how many old or young people are in the population in question. The data are also available at local authority level for 2012. Questions to consider: • How does the cancer mortality rate in my local area compare to the national average? Why is my area below/above the national average? • Are patients in my area receiving the best possible treatment to enable them to live for as long as possible? Where can I access mortality data? Mortality data for clinical commissioning groups can be accessed via Local Cancer Intelligence. It can also be accessed here, via the Cancer Commissioning Toolkit. Mortality data are available at local authority level via the HSCIC indicator portal, here. Once within the portal, search for “mortality of all cancers” and follow the third option. 14 Survival Why do survival data matter? What survival data are available? One-year survival data are widely considered to be very important as a proxy measure of early diagnosis8. This means that areas with a high one-year survival figure are diagnosing patients early enough to give them a good chance of longterm survival. The All-Party Parliamentary Group on Cancer has campaigned for greater scrutiny of one-year survival data for this reason9. One-year survival data are available for 2012 at individual clinical commissioning group level. These data are updated annually. These data are age-sex standardised, which means they are adjusted to account for changes over time in the profile of cancer patients by age, sex and type of cancer. Five-year survival data provide an understanding of how successful England’s cancer services are at helping people to beat cancer for the longer-term. For this reason, five-year survival figures are often used to compare cancer outcomes in the UK with other countries10. Five-year survival data are only available at NHS Area Team level, for six types of cancer, for those diagnosed between 2004 and 2008, followed up to 2013. Where can I access survival data? One-year survival data for adult cancer patients are available at clinical commissioning group level and can be accessed here, via the ONS. Five-year survival data at NHS Area Team level for six specific cancers are available here, via the ONS. Questions to consider: • What does the one-year survival rate say about levels of early diagnosis in my local clinical commissioning group? • What steps are being taken to encourage early diagnosis in my local clinical commissioning group? • How are those living with and beyond cancer in my local area being supported? 15 Patient experience What patient experience data are available? Why do patient experience data matter? While clinical outcomes are very important, patient experience of care is also crucial. This is especially true of cancers that are harder to cure, where clinical outcomes are likely to be poorer. Patient experience data helps to measure and assess the quality of patient care at your local provider(s) on a wide range of issues, including patients being involved in decisions about their own care, receiving the right information, having access to appropriate nurse specialists and rating their overall care as ‘excellent’ or ‘very good’11. Patient experience data are now being used in a buddying scheme, where highly performing trusts will help to share best practice and accelerate the adoption and spread of new ways of working with other trusts. The Cancer Patient Experience Survey (CPES) has been running since 2010, and has reported four times. The CPES measures the experience of cancer patients over the age of 16 by collecting answers to approximately 70 questions each year. Data are available at trust or foundation trust level and are also available for a number of specific cancers, as well as for all cancers combined. An annual report on CPES data is also available. CPES is not due to report in 2015 due to the contract for the survey being re-tendered, however, it is expected to report again in 2016. There is currently no CPES for cancer patients under the age of 16 or their parents. Where can I access patient experience data? CPES data is available here. The most recent annual report is available here. Macmillan’s CPES league tables are available here, and information on the newly established CPES buddying scheme can be seen here. Questions to consider: • In which areas of the CPES does my local trust perform well? In which areas does my local trust perform poorly? • How are local NHS leaders working to improve patient experience? • Has my local trust improved its CPES scores since 2010? If not, why? 16 Waiting standards Why do waiting standard data matter? Waiting standard data makes it easy to see whether your local area has persistent and unacceptable delays in patient care. Shorter waiting times help to ease patient anxiety and in best cases, can lead to earlier diagnosis, quicker treatment, a lower risk of complications, enhanced patient experience and improved cancer outcomes12. Where can I access waiting standard data? Clinical commissioning group profiles in the Public Health England Cancer Commissioning Toolkit, available here, contain quarterly updated statistics on the six waiting standards. What waiting standard data are available? Data are available on a number of waiting standards for all cancers at clinical commissioning group level, updated on a quarterly basis. Each of the waiting standards is detailed below: • Two week wait performance – the number of patients seeing a specialist within two weeks after being referred with suspected cancer by their GP • 31 day standard performance (first treatment) – the number of patients starting first treatment within 31 days of diagnosis • 31 day standard performance (subsequent treatment) – the number of patients starting subsequent treatment within 31 days • 62 day standard performance (first treatment) – the number of patients waiting a maximum of 62 days to begin their first treatment following urgent referral for suspected cancer from their GP • 62 day standard performance (screening) – the number of patients waiting a maximum of 62 days to begin their first treatment following referral from an NHS cancer screening service • 62 day standard performance (upgrade) – the number of patients starting first treatment following a consultant’s decision to upgrade a patient’s priority Questions to consider: • Are any of the waiting standards outlined being missed in my local area? If so, how long has it been since they were last met? • What action is being taken to address unacceptable delays in waiting standards? 17 Screening and vaccination Why do screening and vaccination data matter? What screening and vaccination data are available? Screening for cancers can save lives. For example, the breast cancer screening programme is estimated to save 1,300 lives a year13. Similarly, HPV (human papilloma virus) vaccination plays a significant role in helping to prevent cancer. As such, ensuring that all eligible persons are being screened and vaccinated is crucial. The NHS Screening Programme currently runs three national screening programmes, for breast, cervical and bowel cancers. Data are available routinely for both the breast and cervical screening programmes, but not for the bowel screening programme. Screening and vaccination coverage can vary, and data can demonstrate such inequalities. For example, some London local authorities have significantly lower HPV coverage than the national average. For both the breast and cervical programmes, data is available at the PCT (Primary Care Trust) level for coverage as a per cent of total eligible women. These data are available for the 2012-13 financial year, and are updated annually. Data are also available on the coverage of HPV vaccination for 2013-14, which is broken down by both PCT and local authority. These data are updated annually. Where can I access screening and vaccination data? Breast cancer screening data is available via the Health and Social Care Information Centre (HSCIC) here. Cervical cancer screening data is available via the HSCIC here. HPV vaccination data is available via Public Health England here. Questions to consider: • Is everyone that is eligible for a vaccine or screening test in my local area receiving the appropriate test/vaccine? • If applicable, why is uptake of screening programmes/vaccines particularly low in my area? • What steps are being taken by local NHS leaders to encourage greater uptake of screening and vaccination? About the Cancer Campaigning Group 19 About the Cancer Campaigning Group The Cancer Campaigning Group is a coalition of around 60 national cancer-related charities We represent service providers, research, advocacy and campaigning groups We were founded in 2002 to campaign for an update to the 2000 NHS Cancer Plan Our aim is to campaign for improved cancer policy and services in the areas of: public health and prevention; early diagnosis; treatment and services; survivorship; commissioning; and research We have eleven corporate sponsors that support our work We currently focus our activities in England only Our Cancer: Shifting Gears report In 2014, we developed a headline policy report, Cancer: Shifting Gears – bringing England’s cancer outcomes in line with the best in Europe. We called on the new Government to name cancer as a priority for the NHS and to deliver three urgent actions: A five-year strategic plan for improving cancer with an annual update Continued improvement in the scope and scale of data collection, using data to drive improvements in research and commissioning The design and delivery of integrated cancer services that are coordinated around the needs of patients Our report also includes our vision for how to build upon and protect progress made in cancer for the long-term in the areas of: prevention and public health; screening; awareness and early diagnosis; treatments services and commissioning; survivorship; and research. 20 21 How to contact us If you would like further details on any of the information in this toolkit, or would like to contact the Cancer Campaigning Group for any other reason, please do not hesitate to get in touch via [email protected] Do please follow us on Twitter on @_CCG, where throughout 2015, we are tweeting out key facts from our Shifting Gears report. This toolkit has focused on statistics for all cancers. However, our 60 strong membership are experts in their own areas of cancer, with some focusing on specific cancer, and others on a specific demographic of people. To contact any of our individual members, please click on the logos overleaf to be taken to their website, where you can find their contact details. 22 Our members 23 Our supporters 24 References 1 Maddams J et al. ‘Cancer prevalence in the United Kingdom: estimates for 2008’. British Journal of Cancer 2009; 101:541-7. Avaliable online via: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2720244/ 2 Cancer Research UK, Cancer incidence by age, January 2014. Avaliable online via: http://www.cancerresearchuk.org/cancerinfo/cancerstats/incidence/age/ 3 Cancer Research UK, Cancer statistics: key facts – all cancers combined, May 2014. Available online via: http://publications. cancerresearchuk.org/downloads/Product/CS_KF_ALLCANCERS.pdf 4 YouGov, Cancer Britons most feared disease, August 2011. Available online via: https://yougov.co.uk/news/2011/08/15/cancer-britons-most-feareddisease/ 5 Macmillan Cancer Support, UK Cancer Survival Rates “Stuck in the 1990s” says Charity, March 2015. Available online via: http://www.macmillan.org.uk/Aboutus/News/Latest_News/UKCANCERSURVIVALRATESSTUCKINTHE1990SSAYSCHARITY.aspx 6 Cancer Research UK, Cancer Stats Report: Teenage and young adult cancer, 2013. Available online via: http://publications.cancerresearchuk.org/publicationformat/formatstats/tya-report.html 7 NHS Choices, Reducing your risk of cancer, September 2014. Available online via: http://www.nhs.uk/conditions/Cancer/Pages/Introduction.aspx 8 National Cancer Intelligence Network, Awareness & Early Diagnosis. Available online via: http://www.ncin.org.uk/cancer_type_and_topic_specific_work/topic_specific_work/awareness_early_diagnosis 9 APPG on Cancer, Cancer across the Domains: A vision for 2020, December 2014. Available online via: http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/APPG/A-vision-for-2020-report.pdf 10 Macmillan Cancer Support, UK Cancer Survival Rates “Stuck in the 1990s” says Charity, March 2015. Available online via: http://www.macmillan.org.uk/Aboutus/News/Latest_News/UKCANCERSURVIVALRATESSTUCKINTHE1990SSAYSCHARITY.aspx 11 Quality Health, Cancer Patient Experience Survey 2014 National Report, September 2014. Available online via: https://www.quality-health.co.uk/resources/surveys/national-cancer-experience-survey/2014-national-cancer-patient-experience-survey/2014-nationalcancer-patient-experience-survey-national-reports/688-2013-national-cancer-patient-experience-survey-national-report-pdf/file 12 NHS England, Statistics on Waiting Times for Suspected and Diagnosed Cancer Patients Q1 2014-15 Key Points – Provider Based. Available online via: http://www.england.nhs.uk/statistics/wp-content/uploads/sites/2/2014/08/Cancer-Waiting-Times-commentary-Q1-2014-15-provider-based-data.pdf 13 NHS Choices, Breast Cancer Screening, January 2015. Available online via: http://www.nhs.uk/Conditions/breast-cancer-screening/Pages/Why-itsoffered.aspx