1 Bowel cancer: a vision for 2020 beatingbowelcancer.org
2 02 beatingbowelcancer.org A vision for 2020 To produce Bowel cancer: a vision for 2020 we listened to the people that matter most: people with bowel cancer and their families. We built ambitions for the future based on their experiences. We also consulted expert clinicians and others involved in treatment and care. Bowel cancer: a vision for 2020 is the resulting plan of action. It illustrates how by 2020, we can all set out to beat cancer through earlier diagnosis, better treatment, care and support. We are also grateful for the input of the following people and organisations to produce this vision: Professor Sean Duffy, National Clinical Director for Cancer for NHS England Mr Michael Machesney, Chair of the Colorectal Clinical Reference Group The Association of Coloproctology of Great Britain and Ireland Bowel Cancer UK The British Society of Gastroenterology. Our vision is UK-wide. These ambitions focus on England. We will develop versions for Scotland, Wales and Northern Ireland.
3 beatingbowelcancer.org 03 Introduction Every half an hour in the UK someone dies of bowel cancer (1). It s the second biggest cancer killer (2). Survival rates for bowel cancer are lower in the UK than in many other European countries and there is variation in the quality of care, depending on where you re treated (3). Positive improvements are happening all the time in bowel cancer diagnosis, treatment and care. But we need to do better. Bowel cancer can be beaten if we act to diagnose more people early and we deliver the best possible care and treatment. We need to make sure bowel cancer is diagnosed earlier. When diagnosed at stage 1, more than nine out of 10 (97%) people survive for five years or more. At stage 4, this drops to less than one in 10 (7%) (4). As well as improving survival rates, we need better support for people with bowel cancer before, during and after treatment. It s not just about how long people live but how well they live, including at the end of their lives. We have an opportunity to make bowel cancer a rare cancer killer, with more lives saved, and ensure better care for every bowel cancer patient. To make this a reality we need work together. The NHS, government, doctors, nurses and health professionals, charities, scientists, researchers, and the public, can all join together. If diagnosed at stage 1 97% of people survive for five years or more. If diagnosed at stage 4 7% of people survive for five years or more.
4 04 beatingbowelcancer.org Ambitions to beat bowel cancer By 2020, there is a real opportunity to see: 9,000 more LIVES * SAVED Better care for every PATIENT * If every Clinical Commissioning Group in England achieved the stage distribution of the current best then our ambition of saving 9,000 lives would be achieved by This suggests that, by 2020, over 3,000 extra people will be living for at least five years after diagnosis. The 9,000 figure is derived from assuming a steady rate of improvement towards this goal across five years. Data adapted from: Incisive Health, Saving lives, averting costs, September 2014.
5 beatingbowelcancer.org 05 There are five key ambitions that will help make this happen: One million more people screened No one with symptoms turned away Best treatment for every patient More bowel cancer nurses Support for everyone after treatment
6 06 beatingbowelcancer.org Ambition 1: One million more people screened If it hadn t been for the screening test, I wouldn t be here. I d urge anyone who receives it to take part, even if you feel well. It really could be a life-saver. Joy, bowel cancer patient Bowel cancer screening saves lives. It helps to detect the early stages of cancer, often before any symptoms are showing. So we need to make sure screening is offered to everyone who is eligible for it and that they choose to take part. At the moment only six in 10 people who get sent a screening test complete it (5). We want to increase the numbers of people being screened, so they re more in line with breast and cervical cancer screening programmes. If that happened, and 75% of eligible people took part, another one million people would be screened (6, 7, 8). How will this be achieved? Make sure more people take the opportunity to be screened We need to raise awareness of the importance of screening, particularly in communities where not many people currently take part. The invitation to take part in screening needs to clearly show the benefits. We want to see GP practices follow up with people who are eligible but haven t been screened. Expand the age range for people who are offered screening Those aged 50 and over in England need to be offered the Faecal Immunochemical Test (FIT). Research shows that more people who are offered this type of screening (which only requires one poo sample) have chosen to take part, than with the original Faecal Occult Blood test (FOBt) (which requires three samples). Better, more accurate tests, including bowel scope, need to be rolled out as widely as possibly. To make this happen, we also need more people being trained to carry out these investigations.
7 beatingbowelcancer.org 07 Ambition 2: No one with symptoms turned away I had to beg for my doctor to send me for tests and it was only when I managed to get a locum doctor to listen to me that they sent me to the hospital. Then I had to wait another six weeks to get a colonoscopy. Responder to our patient survey If diagnosed early nine out of 10 cases of bowel cancer can be treated successfully. Early diagnosis means symptoms need to be spotted and investigated promptly. At the moment, around a quarter of people with bowel cancer are diagnosed after being admitted to accident and emergency departments, at a point when cancer is likely to be more complex and difficult to treat (9). How will this be achieved? More investigation of bowel cancer symptoms GPs need to be empowered to refer patients for tests as soon as they suspect cancer. Everyone who has clear symptoms of bowel cancer should be referred for investigation within two weeks. People with concerning symptoms that don't fulfil the urgent referral criteria should still be able to access a range of tests. Nearly a third of people with suspected symptoms had to see their GP more than twice before they were referred for tests (10). This needs to change. Better use of testing This includes: the roll out of straight to test pathways, where patients are given the option to refer themselves for cancer tests, booking appointments directly with a hospital or testing unit ahead of seeing a GP the time it takes for a definitive diagnosis of bowel cancer to be measured and assessed GPs and other health professionals to be held more accountable for early diagnosis.
8 08 beatingbowelcancer.org Ambition 3: Best treatment for every patient It s so important that every bowel cancer patient is given the best available treatment for them. What s right for one patient s condition will not necessarily be right for another. After my 1st and 2nd line treatments didn t work for me, I received some of the most innovative, targeted cancer treatments available and they have made a huge difference to my quality of life. Most importantly, they have given me precious extra years with my wife and young daughters. Ben Ashworth, bowel cancer patient Along with later diagnosis, less effective treatment is the other major cause of poorer bowel cancer survival rates in England, compared with the rest of Europe. For example, access to laparoscopic (keyhole) surgery varies depending on where you live. It s being used in around 45% of cases in the East Midlands Cancer Network, compared to almost 68% in the London Cancer Network (11). In a recent study, the UK ranked seventh out of 13 countries on the use of cancer drugs that were licensed in the last five years (12), suggesting that not enough people are getting the latest and most effective treatments. There s also evidence to suggest that older people are less likely to receive radical surgery or radiotherapy than younger people (13). It s vital that, as well as being diagnosed as early as possible, bowel cancer is treated using the most effective drugs and therapies.
9 beatingbowelcancer.org 09 How will this be achieved? More information, evidence and analysis Heath service data needs to be analysed and applied so that current and future patients can benefit. More information on patient survival by stage of cancer needs to be developed, tested and published to help us measure how effective clinical teams are being. Peer reviews for primary and secondary care teams that perform either extremely badly or extremely well, focusing on clinical decisions (rather than processes and organisational issues) need to be encouraged. More informed choice for patients There needs to be more information published on the quality of bowel cancer treatment and care and outcomes, written in a clear and accessible way that anyone can understand. More than eight out of 10 people affected by bowel cancer (87.4%) who responded to our survey said more information about individual hospitals and clinicians would help them decide where and how they were treated. 9 OF TEN OUT More than nine out of 10 said they d be happy for data about their diagnosis, care and experience to be collected and shared if it meant improving things for others.
10 10 beatingbowelcancer.org Ambition 4: More bowel cancer nurses My nurse Sarah has been brilliant throughout. She has briefed me at every stage of my treatment, helping me to face the future and make sense of good news and bad. Garth, bowel cancer patient Specialist bowel cancer nurses make a vital difference to treatment and care. Their skills and expertise can help make sure patients have shorter stays in hospital and fewer complications after surgery. They can help people to manage their condition themselves, reducing the need for hospital appointments, emergency admissions and consultants time, which saves healthcare providers time and money. At the moment, almost one in 10 patients are not given the name of a specialist bowel cancer nurse (14). One in five who were, reported it was not easy to contact them (15). This can be improved. Not only would the impact on patients be huge, but it s estimated that the benefits of having specialist nurses could save as much as 27 million a year by reducing the number of hospital beds taken up with emergencies (16).
11 beatingbowelcancer.org 11 How will this be achieved? Provide extra support and more partnership working This ambition is about more than just appointing new clinical nurse specialists. These are some other things we need: Clinical nurse specialists in the community potentially supporting people with a range of different cancers. Digital support making contact easier and ensure the best use of nurses time. Partnerships with charities for example Beating Bowel Cancer has a national nurse-led helpline, the only one in the UK, which could provide extra support. As well as providing a nurse specialist, people with bowel cancer need to have support from health and social care professionals, such as district nurses and carers. More accountability There needs to be 95% of bowel cancer patients, across all hospitals, reporting that it was easy to contact their named clinical nurse specialist. A measure needs to be put in place to make sure this is happening.
12 12 beatingbowelcancer.org Ambition 5: Support for everyone after treatment "When I found out I had cancer I was desperate for information. I saw Beating Bowel Cancer s 'Bowel Cancer Voices' online and they very quickly put me in touch with another patient. We spoke about how cancer affects you and your family, about having a stoma and the likely effects of chemotherapy. He told me it was years since his operation and he showed me how successful the treatment could be. After our chat, I felt so much better. Indeed, every time I spoke to someone else who had been diagnosed with cancer, I felt better." John, Bowel Cancer Voice The impact of bowel cancer doesn't end when treatment stops. Many people are left with pain, exhaustion, anxiety and problems relating to sexual function, continence and poor nutrition. There s also the financial impact of cancer lots of people have to stop working during treatment. Many people, particularly those with more advanced cancer, will continue to receive treatment for many years. Many people feel abandoned once their treatment is over and they stop having regular contact with the hospital and health professionals. Getting the right support after treatment is vital. It can help people to reduce their risk of cancer coming back, for example if they get the right information on nutrition and exercise. Support can help people stay independent, know when to ask for help with physical or mental health problems, and how to spot signs that cancer has come back. It can help get people back to their day-to-day lives quicker, and where possible, return to work. Adequate, tailored support is also vital for patients at the end of their life.
13 beatingbowelcancer.org 13 Almost one in three people with cancer experience an average loss of income of 860 a month (17). How will this be achieved? Evidence the benefits If post-treatment support is to be taken seriously we need a way to measure its impact and outcomes, as well as a way to assess services and how they perform. NHS England is developing Patient Centred Outcome Measures, where patients work with health professionals to identify the goals most important to them. We need to see these applied to bowel cancer as soon as possible, across the UK, including for people at the end of their life. Offer a guarantee The NHS should offer a rehabilitation guarantee. This would mean bowel cancer patients were guaranteed information on national charities and peer support groups, medical follow up tailored to their needs, and advice on returning to work.
14 14 beatingbowelcancer.org Paying for these ambitions Achieving these goals needs investment, at a time when the NHS is facing serious financial pressure. The government made a commitment in its election manifesto to provide worldleading cancer services and that will require funding. Delivering these ambitions can also save money. For example: If every Clinical Commissioning Group in England achieved the same level of early diagnosis as the current best, costs of over 34 million could be averted (19). That s enough to fund 950 clinical nurse specialists for a year (18). We need to see more analysis of the cost-benefits of taking action to beat bowel cancer. Those whose lives are saved will continue to be productive members of society. Better treatments will keep patients in work for longer, improving their own wellbeing and allowing them to continue to contribute. Working together There is an opportunity, by 2020, to save 9,000 more lives and give better care and support to every bowel cancer patient. Those we spoke to while compiling this report agreed. Now is the time to make this happen, to unite around these ambitions and transform bowel cancer outcomes by To help us achieve these ambitions, visit beatingbowelcancer.org
15 beatingbowelcancer.org 15 References 1) Cancer Research UK, Incidence Statistics, Number of New Cases of bowel cancer, Crude and European Age-Standardised (AS) Incidence Rates per 100,000 Population, ) Cancer Research UK, Number of Deaths from bowel cancer, Crude and European Age-Standardised (AS) Mortality Rates per 100,000 Population, ) EUROCARE-5, Cancer survival in Europe by country and age: results of EUROCARE- 5 a population-based study, December ) Cancer Research UK, Bowel cancer survival by stage at diagnosis, December ) Hansard, 1 Apr 2014 Col.562W 6) Based on 50% of year olds currently participating in bowel cancer screening and 25% additional people aged being screened, using ONS, mid-2013 population estimates, September ) Health and Social Care Information Centre, Breast Screening Programme, England, Statistics for , February ) Health and Social Care Information Centre, Cervical Screening Programme, England, Statistics for , November ) National Cancer Intelligence Network, Routes to Diagnosis briefing, November ) Quality Health, National Cancer Patient Experience Survey 2014, September ) Health and Social Care Information Centre, National Bowel Cancer Audit Report, ) RAND Corporation, International variation in drug usage An exploratory analysis of the "causes" of variation, ) National Cancer Intelligence Network, Older people and cancer, June & 15) Quality Health, National Cancer Patient Experience Survey 2014, September ) Frontier Economics, One to one support for cancer patients, December ) Macmillan Cancer Support, Cancer s hidden price tag, March ) Calculation based on an average annual cost of a clinical nurse specialist of 35,725 taken from NICE, Support for commissioner and others using the quality standard on breast cancer, September ) Data adapted from: Incisive Health, Saving lives, averting costs, September 2014
16 Bowel cancer: a vision for 2020 is published by the charity Beating Bowel Cancer. Beating Bowel Cancer is the support and campaigning charity for everyone affected by bowel cancer. We provide vital practical and emotional help on the phone, digitally and face to face. We re proud to run the UK s only nurse-led specialist helpline for bowel cancer, which patients call a lifeline. If you have any questions or comments about this publication, or would like information on the evidence used to produce it, please write to us, or 9,000 more LIVES SAVED Better care for every PATIENT To help us achieve these ambitions visit beatingbowelcancer.org Beating Bowel Cancer Harlequin House I 7 High Street I Teddington I Middlesex I TW11 8EE beatingbowelcancer.org Registered Charity Nos (England & Wales) SC (Scotland)