Survey
* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project
* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project
The Rich Picture Dave, 75, living with head and neck cancer Understanding the numbers, needs and experiences of people affected by cancer About this ‘Rich Picture’ This document is a collation of the key available evidence about the numbers, needs and experiences of people affected by cancer. Our aim is that the insight within this document will summarise the numbers, needs and experiences of people affected by cancer for Macmillan staff, cancer care professionals, volunteers and other interested parties. It includes data specific to the particular group who are the focus of this Rich Picture, as well as more generic information about all people affected by cancer where specific data are not available or where the information applies to all groups of people with cancer. The Rich Picture is intended to be accessible to both clinical and non-clinical cancer support staff. Therefore the language and facts included are intended to cater for information needs of both groups. We have included references to other documents to help with interpretation of some facts included, and a Jargon Buster of some technical terms is included in Appendix A. The information could be valuable in many ways: • Adding weight and evidence to negotiations with partners and commissioners • Providing evidence to support campaigning • Enabling more effective marketing • Inspiring and engaging supporters to give and do more • Providing some insight into the lives of people with cancer This document is not intended to •B e a comprehensive collation of all evidence on the group affected by cancer who are the focus of this Rich Picture • Suggest or recommend that specific action should be taken For simplicity, the year to which the data in this document relate and the sample size is not always shown in the main sections, however this is shown in the original data linked from the references section. If you are short on time, a quick read of the summary on pages 2 and 3 will give you a brief outline of the rest of the content of this comprehensive document. This ‘Rich Picture’ is one of a suite of documents. To access these documents please visit http://www.macmillan.org.uk/Richpictures or for further information please contact [email protected] The legal bit The information contained in this document is a summary of selected relevant research articles, papers, NHS data, statistics and Macmillan-funded research. This document intends to summarise in a broad sense the numbers, needs and experiences of people with cancer, it is not an exhaustive systematic review that follows strict scientific community rules governing such types of review. However we have compiled the information using broad quality assessment criteria to ensure that the information presented in this document is largely representative and unbiased. It is worth noting that people with cancer have a very wide range of experiences; therefore the information presented here may not reflect the experiences or profile of everyone within the category presented. Macmillan or any other organisation referenced in this document claim no responsibility for how third parties use the information contained in this document. We have endeavoured to include all the major data available to us as of July 2014, but a document of this nature (essentially a summary of a large body of evidence) inevitably goes out of date. Macmillan has sought external validation of this document from clinical experts and we aim to regularly update the content of this document. There may be data that have been released that does not appear in this document and Macmillan is under no obligation to include any particular data source. Any medical information referred to in this document is given for information purposes only and it is not intended to constitute professional advice for medical diagnosis or treatment. Readers are strongly advised to consult with an appropriate professional for specific advice tailored to your situation. The Rich Pictures are licenced under a Creative Commons Attribution-NonCommercial-Share Alike 4.0 International Licence. Users are welcome to download, save, or distribute this work and make derivative works based on it, including in foreign language translation without written permission subject to the conditions set out in the Creative Commons licence. Contents Guidance on referencing this document You are free to use any of the data contained in this document, however when quoting any factual data that do not belong to Macmillan, it is best practice to make reference to the original source – the original sources can be found in the References section at the back of this document on page 58. Other related information for people affected by cancer This document is designed to summarise the numbers, needs and experience of people with cancer. It is not designed specifically with people affected by cancer in mind, although some people within this latter group may find the information contained here helpful. People affected by cancer may find our information booklet ‘Understanding head and neck cancers’ (MAC11632) more helpful: Understanding head and neck cancers MAC11652 All these titles are available in hard-copy by calling our Macmillan Support Line free on 0808 808 00 00 (Monday to Friday, 9am–8pm), or by ordering online at www.be.macmillan.org.uk. A wealth of other resources are also available, all produced by Macmillan Cancer Support and available free of charge. Contents OTHER RELATED INFORMATION FOR MACMILLAN STAFF Macmillan staff may also wish to use this Rich Picture document in combination with other connected documents, such as the Impact Briefs or the Macmillan Communications Platform. You may wish to select evidence from more than one source to build a case for support, add weight to your influencing, or to engage and inspire Macmillan’s supporters. A range of evidence that may be helpful to you is summarised here. Please note that any hyperlinks active below may not work for non-Macmillan staff. Case Study Library People affected by cancer Contains stories and quotes from real-life examples of people affected by cancer who have been helped by Macmillan. Professionals/Services Contains specific examples of our services across the UK, and the impact they are having. Comms Platform Rich Pictures Impact Briefs Describes how to communicate with people affected by cancer. Describe the numbers, needs and experiences of key groups within the 2.5 million people with cancer. Generically describe what our services do, and the impact they have on people affected by cancer. Local Cancer Intelligence A local overview of the essential data on the changing burden of cancer in your area, including prevalence, survival, patient experience and comparisons across clinical commissioning groups. Routes from Diagnosis Results from the first phase of the Routes from Diagnosis study, including outcome pathways, survival rates, inpatient costs and morbidities associated with breast, lung, prostate and brain cancers. For further information about any of the above, please contact a member of Macmillan’s Evidence Department, or contact [email protected]. Contents Contents 1 Summary of people living with head and neck cancer 2 What is head and neck cancer? 4 Macmillan’s aims and outcomes 6 Key facts and stats 8 The cancer journey 24 Needs and experiences – Diagnosis 26 Needs and experiences – Treatment 34 Needs and experiences – Survivorship (post-treatment) 40 Needs and experiences – Progressive illness and end of life 44 Lifestyle and perceptions 50 References 58 Appendix A – Jargon buster 65 Contents Summary of head and neck cancer The rich picture on people with head and neck cancer summary of people living with head and neck cancer Key stats Diagnosis Treatment Head and neck cancer is the seventh most commonly diagnosed cancer and an average of 31 people receive a head and neck cancer diagnosis every day in the UK.(3a, 3b, 3c, 3d) 20% of people with head and neck cancer felt that their health deteriorated whilst they were waiting for their first hospital appointment.(32) Most head and neck cancers are treated by surgery, radiotherapy or a combination of both. Plastic or reconstructive surgery is also often needed for patients with these cancers.(39) Around 62,530 people were living with head and neck cancer in the UK in 2010.(4) Head and neck cancers cause over 3,300 deaths per year in the UK.(6a, 6b, 6c) Head and neck cancer is much more common in men than in women. Oral cancer, the most common form of head and neck cancer, causes more deaths in males than females at a ratio of 2:1.(17) Head and neck cancer is the seventh most common type of cancer in the UK. 2 Weight loss is a common phenomenon in head and neck cancer patients at diagnosis.(31) There are still significant delays in the diagnosis of head and neck cancer. This is because patients are often poorly educated about symptoms.(34) 81% of patients who are undergoing treatment for head and neck cancer experience pain.(52) Treatment for head and neck cancers can cause problems with eating, swallowing, breathing and speech.(23) 83% of cancer patients (not specifically head and neck cancer) are, on average, £570 a month worse off as a result of a cancer diagnosis.(13) 70% of people needing emotional support with head and neck cancer felt that they were definitely given enough emotional support from hospital staff during treatment.(57) Diagnosis of head and neck cancer may be delayed by poor patient education about its symptoms. Treatment for head and neck cancer can cause pain, and problems with eating and swallowing. Contents Survivorship End of life Lifestyle & perceptions Treatment for head and neck cancers often has permanent effects on basic activities like breathing, speaking, eating and drinking.(23) 457,000 people (not just those with cancer) need good palliative care services every year in England, but around 92,000 people are not being reached.(75) Asian women have an increased risk of cancer of the mouth compared to those of White or Black ethnic origin.(19) Patients with head and neck cancer have been found to be more frequently distressed than patients with other cancers.(66) Oral dysfunction, loss of appetite, deteriorated social functioning and high levels of anxiety are barriers for head and neck cancer patients to return to work after treatment.(62) Those who are older, male, from ethnic minorities, not married, lacking in home care or socio-economically disadvantaged are all less likely to access community palliative care services.(83) The most common symptoms experienced by more than half of people during their last two weeks of life include shortness of breath, pain, and confusion.(77) High levels of self-consciousness of appearance have been found amongst patients with head and neck cancer.(65) Death of a partner has been shown to be a trigger for claiming income support.(80) Patients with head and neck cancer may be self-conscious of their appearance. 92,000 people who require good palliative care are not being reached. 3 Media reports on head and neck cancer clearly focus on the causes of the disease. The most frequently cited words include ‘alcohol’ and ‘drinking’.(89) Elderly people reliant on state support are wellrepresented amongst people being treated for head and neck cancer.(86) Contents Summary of head and neck cancer Understanding the numbers, needs and experiences of people affected by cancer What is head and neck cancer? The rich picture on people with head and neck cancer introduction to head and neck cancer What is head and neck cancer?(1) Cancer can occur in any of the tissues or organs in the head and neck. There are over 30 different places in which cancer can develop in the head and neck area. The most commonly diagnosed head and neck cancers are: • Cancers of the Oral Cavity • Oropharyngeal cancer • Cancer of the ear • Cancer of the salivary gland • Cancer of the eye • Cancer of the voice box (larynx), • Cancer of the thyroid gland About 90% of head and neck cancers are of a type called squamous cell carcinoma. These start in the cells that form the lining of the mouth, nose, throat or ear, or the surface layer covering the tongue. In rarer instances, head and neck cancers can also develop from other type of cells: • Lymphomas develop from the cells of the lymphatic system. • Adenocarcinomas develop from cells that form the lining of glands in the body. • Sarcomas develop from the cells which make up muscles, cartilage or blood vessels. • Melanomas start from cells called melanocytes, which give colour to the eyes and skin. 4 There are a number of risk factors that can increase the chance of developing head and neck cancer. These are: • Gender – Head and neck cancers are more common in men than women. • Age – Head and neck cancers are more common in older people. • Smoking • Drinking alcohol • Long periods of exposure to the sun • A poor diet • Exposure to chemicals • Human papilloma virus Want to know more? Macmillan produces a wealth of information about what head and neck cancer is, its causes, symptoms and treatment. Macmillan staff can refer to reference (1) on page 58 for where you can find this information, or if you’re affected by cancer, call our Macmillan team on the number below, or visit our website. Almost one in two of us will get cancer. For most of us it will be the toughest fight we ever face. And the feelings of isolation and loneliness that so many people experience make it even harder. But you don’t have to go through it alone. The Macmillan team is with you every step of the way. Call the Macmillan team free on 0808 808 0000 (Monday to Friday, 9am-8pm) or visit www.macmillan.org.uk Contents What is head and neck cancer? ‘I had a very, very full life. I absolutely loved my work. I was heavily involved in my rugby club, I actually made the programme and printed the programme every week. Then when I was diagnosed and I started my chemo I still went down, I still did the programmes. But, after the second session I stopped going down because I was losing my hair, I couldn’t eat, I couldn’t swallow. I lost over six and a half stone in two months. In my down moments I thought, I’ll never do this. I’ll never do this. But, then I would tell myself, you’ve got to try and do it, you must do it.’ Dave, 75 5 Contents The rich picture on people with head and neck cancer Macmillan’s aims and outcomes Macmillan’s aIMS AND outcomes Macmillan’s aims and outcomes – and how they are different for people with head and neck cancer The estimated total number of people living with cancer in the UK in 2015 is almost 2.5 million. Assuming that all existing trends in incidence and survival continue cancer prevalence is projected to increase to 4 million in 2030. Particularly large increases are anticipated in the oldest age groups and in the number of long term survivors. By 2040 77% of all cancer survivors will be at least 65 years old and 69% of cancer survivors will be at least 5 years from diagnosis.(2) How is this different for people with head and neck cancer? Macmillan is carrying out work internally to ‘baseline’ the 9 Outcomes, and we hope to be able to show how the 9 Outcomes vary for different groups. This document will be updated when this work is complete, and the information used to help focus our efforts to reach those most in need of support. Macmillan’s ambition is to reach all of these people and help improve the set of 9 Outcomes you can see opposite. Remember, certain groups will identify more or less strongly with the various Outcomes. Around 62,530 people were living with head and neck cancer in the UK in 2010, based on people living up to 20 years post a cancer diagnosis.(4) 6 Contents The 9 Outcomes for people living with cancer 7 I was diagnosed early I understand, so I make good decisions I get the treatment and care which are best for my cancer, and my life Those around me are well supported I am treated with dignity and respect I know what I can do to help myself and who else can help me I can enjoy life I feel part of a community and I’m inspired to give something back I want to die well Contents Macmillan’s aims and outcomes Understanding the numbers, needs and experiences of people affected by cancer The rich picture on people with head and neck cancer Key facts and stats THE facts on head and neck cancer This section presents some of the key stats and facts relating to people with head and neck cancer. You may benefit from referring to the jargon buster on page 65 for details on some of the terms used in this section. Please note that incidence and mortality data on all cancers exclude non-melanoma skin cancer. 31 people are diagnosed with head and neck cancer every day (3a, 3b, 3c, 3d) 62,530 people were living with head and neck cancer in the UK in 2010, based on people living up to 20 years post a cancer diagnosis.(4) 85% of men live for more than one year following a diagnosis of laryngeal cancer, one of the most common types of head and neck cancer.(5) 66% of men live more than five years after their laryngeal cancer diagnosis. Survival rates for other head and neck cancers are not available.(5) 9 people die every day of head and neck cancer in the UK (6a, 6b, 6c) 8 Contents How many people get head and neck cancer per year? (incidence)(3a, 3b, 3c, 3d) Cancer incidence, UK, 2012, top 10 cancer sites 51,079 Breast Lung 44,486 Prostate 43,436 41,854 Colorectal Malignant Melanoma 13,497 Non-Hodgkin Lymphoma 12,879 Head & Neck Bladder Kidney Uterus 11,152 10,702 9,524 8,617 Head and neck cancer is the seventh most commonly diagnosed type of cancer, with over 11,000 new cases of head and neck cancer being diagnosed every year. 9 Contents Key facts and stats Understanding the numbers, needs and experiences of people affected by cancer Key facts and stats The rich picture on people with head and neck cancer How many people die from head and neck cancer per year? (mortality) (6a, 6b, 6c) Mortality, UK, 2012, top 10 cancer sites 35,392 Lung Colorectal 16,198 11,732 Breast 10,841 Prostate 8,672 Pancreas 7,705 Oesophagus Bladder Stomach 5,244 4,759 Non-Hodgkin Lymphoma 4,687 Ovary 4,136 Head and neck 3,387 Head and neck cancers cause over 3,300 deaths in the UK every year. 10 Contents How many people are currently living with head and neck cancer? (prevalence)(4) People were living with head and neck cancer in the UK in 2010, based on people living up to 20 years post a cancer diagnosis. 62,530 11 Contents Key facts and stats Understanding the numbers, needs and experiences of people affected by cancer Key facts and stats The rich picture on people with head and neck cancer What are the key stats for England? See data on incidence, mortality and prevalence for England How many people get head and neck cancer per year in England? (incidence)(3a) 8,916 new cases of head and neck cancer diagnoses in England in 2012. How many people die from head and neck cancer per year in England? (mortality)(6b, 9) 2,712 head and neck cancer deaths in England in 2012. How many people are living with head and neck cancer in England? (prevalence)(4) 50,359 people were living with head and neck cancer in England in 2010, based on people living up to 20 years post a cancer diagnosis (1991 and 2010). *Age-Standardised Rates are used to eliminate the variation in the age structures of populations to allow for fairer comparisons between incidence and mortality rates in different areas (in this case in the four different UK nations). The Age-Standardised Rate is a rate that has been weighted using a standard population (in this case the European Standard Population) to control for differences in populations. Age-Standardised incidence and mortality rates have been expressed here as rates per 100,000 head of population. What is the age-standardised* rate of incidence of oral cancer in England?(17) 8.6 new cases of oral cancer diagnoses in England in 2011 per 100,000 heads of population What is the age-standardised* rate of mortality from oral cancer in England?(22) 2.4 cases of oral cancer deaths in England in 2011 per 100,000 heads of population 12 Contents What are the key stats for Scotland? See data on incidence, mortality and prevalence for Scotland How many people get head and neck per year in Scotland? (incidence)(3c) 1,315 new cases of head and neck cancer diagnoses in Scotland in 2012. How many people die from head and neck cancer per year in Scotland? (mortality)(6c) 422 head and neck cancer deaths in Scotland in 2012. How many people are living with head and neck cancer in Scotland? (prevalence)(4) 7,094 people were living with head and neck cancer in Scotland in 2010, based on people living up to 20 years post a cancer diagnosis (1991 and 2010). *Age-Standardised Rates are used to eliminate the variation in the age structures of populations to allow for fairer comparisons between incidence and mortality rates in different areas (in this case in the four different UK nations). The Age-Standardised Rate is a rate that has been weighted using a standard population (in this case the European Standard Population) to control for differences in populations. Age-Standardised incidence and mortality rates have been expressed here as rates per 100,000 head of population. What is the age-standardised* rate of incidence of oral cancer in Scotland?(17) 11.8 new cases of oral cancer diagnoses in Scotland in 2011 per 100,000 heads of population What is the age-standardised* rate of mortality from oral cancer in Scotland?(22) 3.8 cases of oral cancer deaths in Scotland in 2011 per 100,000 heads of population 13 Contents Key facts and stats Understanding the numbers, needs and experiences of people affected by cancer Key facts and stats The rich picture on people with head and neck cancer What are the key stats for Wales? See data on incidence, mortality and prevalence for Wales How many people get head and neck cancer per year in Wales? (incidence)(12) 610 new cases of head and neck cancer diagnoses in Wales in 2012. How many people die from head and neck cancer per year in Wales? (mortality)(17) 169 head and neck cancer deaths in Wales in 2012. How many people are living with head and neck cancer in Wales? (prevalence)(4) 3,366 people were living with head and neck cancer in Wales in 2010, based on people living up to 20 years post a cancer diagnosis (1991 and 2010). *Age-Standardised Rates are used to eliminate the variation in the age structures of populations to allow for fairer comparisons between incidence and mortality rates in different areas (in this case in the four different UK nations). The Age-Standardised Rate is a rate that has been weighted using a standard population (in this case the European Standard Population) to control for differences in populations. Age-Standardised incidence and mortality rates have been expressed here as rates per 100,000 head of population. What is the age-standardised* rate of incidence of oral cancer in Wales?(17) 10.1 new cases of oral cancer diagnoses in Wales in 2011 per 100,000 heads of population What is the age-standardised* rate of mortality from oral cancer in Wales?(22) 2.3 cases of oral cancer deaths in Wales in 2011 per 100,000 heads of population 14 Contents What are the key stats for Northern Ireland? See data on incidence, mortality and prevalence for Northern Ireland How many people get head and neck cancer per year in Northern Ireland? (incidence)(3d) 311 new cases of head and neck cancer diagnoses in Northern Ireland in 2012. How many people die from head and neck cancer per year in Northern Ireland? (mortality)(3c) 84 head and neck cancer deaths in Northern Ireland in 2012. How many people are living with head and neck cancer in Northern Ireland? (prevalence)(4) 1,709 people were living with head and neck cancer in Northern Ireland in 2010, based on people living up to 20 years post a cancer diagnosis (1991 and 2010). **Age-Standardised Rates are used to eliminate the variation in the age structures of populations to allow for fairer comparisons between incidence and mortality rates in different areas (in this case in the four different UK nations). The Age-Standardised Rate is a rate that has been weighted using a standard population (in this case the European Standard Population) to control for differences in populations. Age-Standardised incidence and mortality rates have been expressed here as rates per 100,000 head of population. What is the age-standardised* rate of incidence of oral cancer in Northern Ireland?(17) 9.3 new cases of oral cancer diagnoses in Northern Ireland in 2011 per 100,000 heads of population What is the age-standardised* rate of mortality from oral cancer in Northern Ireland?(22) 2.6 cases of oral cancer deaths in Northern Ireland in 2011 per 100,000 heads of population 15 Contents Key facts and stats Understanding the numbers, needs and experiences of people affected by cancer Key facts and stats The rich picture on people with head and neck cancer What proportion of people survive head and neck cancer? (survival)(5) Relative 5-year survival estimates, 2007–2011, by gender, England Testes 97.1% Melanoma 85.5% 92.1% Breast 85.0% Hodgkin Lymphoma 82.4% 86% Prostate 81.7% Uterus 77.4% Cervix 67.3% Larynx 66.1% Non-Hodgkin Lymphoma 62.4% 68.5% Bladder 58.6% 49.1% Rectum 57.1% Male 59.9% Colorectal 56.5% Female 57.8% 16 Contents Unfortunately, research on the survival rates for all types of head and neck cancer has not yet been carried out. However, we do have 5-year survival rates for laryngeal cancer, the second most common type of head and neck cancer. This data is only available for men due to the relatively low number of women who get laryngeal cancer. Of the 21 most common cancer types, laryngeal cancer is placed eighth in the rankings of 5-year survival in England. 17 Contents Key facts and stats Understanding the numbers, needs and experiences of people affected by cancer Key facts and stats The rich picture on people with head and neck cancer How many people live beyond one year of their head and neck cancer diagnosis? (5) Unfortunately, research on one-year survival rates for the majority of head and neck cancer has not yet been carried out. However, we do have one-year survival rates for laryngeal cancer, the second most common type of head and neck cancer. This data is only available for men due to the relatively low number of women who get laryngeal cancer. Age-standardised relative survival estimates, 2007-2011, by gender, England Testis 98.1% Melanoma 96% 97.9% 95.8% Breast 93.1% Prostate 89.9% Uterus Larynx 85% 83.7% Cervix 79.9% Rectum 79.4% 77.4% Non-Hodgkin lymphoma 80.1% 78% Bladder 67.2% 75.9% Colorectal Men 74.7% Lung 31% Women 35.4% 18 Contents How do UK survival rates compare internationally? Specific data is not readily available on head and neck cancer survival rates to compare the UK internationally, although data for all cancers (not just head and neck cancer) does show that survival rates in England are improving overall. Compared to the latest international data, however, England has lower overall one-year and five-year cancer survival rates than many countries including Canada, Australia, Sweden and Norway. This suggests there is more we can do to improve survival for people with cancer in the UK.(16) What are the major demographic variations in incidence, mortality, prevalence and survival for head and neck cancer? Gender The lifetime risk of developing oral cancer in the UK is estimated to be 1 in 84 for men and 1 in 160 for women.(17) Laryngeal cancer is much more common in males than in females. In the UK there were 1,932 new cases diagnosed in males in 2011. This compares with 428 cases in females – giving a male:female ratio of almost 5:1.(18) Ethnic background Asian women are significantly much more likely to get cancer of the mouth than White or Black women. Age-standardised rates for Asian people ranged from 4.0 to 7.1 per 100,000, and were significantly higher than the age-standardised rates of 3.4 to 3.6 per 100,000 for White people for all ages. Rates for the Black community were significantly lower than either of the other two groups, ranging from 1.2 to 2.9 per 100,000.(19) 19 Age Oral cancer incidence is strongly related to age. For men, incidence rates increase sharply from around age 40-44 and peak at ages 60-69, before falling in the over 70s age group. Agespecific oral incidence rates increase much more gradually for women, from around age 40-44, but peaking in the 85+ age group. In the UK between 2009 and 2011, an average of 71% of male oral cancer cases and 59% of female oral cancer cases were diagnosed in the 50-74 age group. This is significantly higher than the average incidence of oral cancer in people aged 75 and over, with 15% of cases in men and 29% in women.(17) Laryngeal cancer is rarely diagnosed in people younger than 40, but incidence rises steeply thereafter, peaking in people aged 65-69. Nearly three quarters of cases (74%) occur in people over the age of 60.(18) As for most cancers, survival is better for younger than older people with cancers of the oral cavity, oropharynx and tongue. The five-year survival rates for laryngeal cancer in men in England between 2007 and 2011 ranged from 76% in the 15-49 age group, to 71% in the 50-59 group and 56% in the 80-99 group.(5) Social background Oral cancer incidence is strongly associated with social deprivation. This is reflected in statistics for all head and neck cancer types. The most recent England-wide data for 2000-2004 shows age-standardised incidence rates for head and neck cancer are around 130% higher (more than double) for men living in more deprived areas compared with the least deprived, and more than 74% higher for women. Similar results have also been published for Northern Ireland and Wales. A study in Scotland for 2005-2009 shows a slightly larger deprivation gap, with agestandardised incidence rates being three times higher in the most deprived population.(17) Contents Key facts and stats Understanding the numbers, needs and experiences of people affected by cancer Key facts and stats The rich picture on people with head and neck cancer What are the geographical ‘hotspots’ for head and neck cancer incidence, mortality and survival? (21) The maps reflect Oral Cancer data (excluding part of the lip and the hard palate) as this is the most common type of head and neck cancer. Oral cancer incidence, UK, 2007-2009 Low Medium High High Important note These maps show only the broad patterns of variation in incidence and mortality. Access to the very detailed and accurate data at the cancer network and strategic health authority level is via the Oxford cancer intelligence unit, head and neck cancer e-atlas, http://www. ociu.nhs.uk/data/eAtlas/atlas. html or Macmillan staff can contact Macmillan’s Health data team. The maps reflect Oral Cancer data (excluding part of the lip and the hard palate) as this is the most common type of head and neck cancer. Details of other types of head and neck cancer are available on the link above. Oral cancer is most common in the North West of England and South Scotland. It is less common in Wales and the South of England. 20 Contents Oral cancer mortality, UK, 2008-2010 Low Medium High High Important note These maps show only the broad patterns of variation in incidence and mortality. Access to the very detailed and accurate data at the cancer network and strategic health authority level is via the Oxford cancer intelligence unit, head and neck cancer e-atlas, http://www. ociu.nhs.uk/data/eAtlas/atlas. html or Macmillan staff can contact Macmillan’s Health data team. The maps reflect Oral Cancer data (excluding part of the lip and the hard palate) as this is the most common type of head and neck cancer. Details of other types of head and neck cancer are available on the link above. Oral cancer mortality rates are generally higher in West Scotland, Northern Ireland and the North of England compared with the rest of the UK. Survival Unfortunately, data is not available on the survival rates for head and neck cancers. 21 Contents Key facts and stats Understanding the numbers, needs and experiences of people affected by cancer Key facts and stats The rich picture on people with head and neck cancer What are the major trends? (Incidence/mortality/prevalence or survival) Oral cancer incidence rates have increased in Britain since the mid-1970s, with most of this increase occurring since the late 1980s for both sexes. In the last decade (between 2000-2002 and 2009-2011), European age-standardised incidence rates have increased by 32% and 33% for men and women, respectively.(17) The age-standardised incidence rates for laryngeal cancer in Great Britain are very different for males and females. For males, the incidence rate rose from just under 6 per 100,000 in the late 1970s to a peak of 6.9 per 100,000 in 1988. This rate slightly dropped to 6.4 per 100,000 in early 2000s, and decreased even further from 2002 onwards to 5.0 per 100,000 in 2011. The rate for females has remained close to 1 per 100,000 population throughout the past decades.(18) The overall age-standardised mortality rate for oral cancer has remained fairly stable between 1971 and 2011, with rates at 3.6 and 1.5 per 100,000 in 2011 for males and females, respectively. However, the all-ages oral cancer mortality figure masks a variation in age-specific trends. Mortality rates among men aged 80 and over have fallen by more than 65%, while rates in those aged 70-79 have also fallen by 65% since 1971. By contrast, for men aged 50-59 there has been an increase of 93%. For younger men the rate has remained stable.(22) 22 Contents Key facts and stats Understanding the numbers, needs and experiences of people affected by cancer ‘The diagnosis was a bombshell – I am a lifelong non-smoker, I drink alcohol in very small amounts, and I have a history of eating well. I had no symptoms resulting from the primary tumour - no pain, no difficulty swallowing.’ Prina, 52, North West 23 Contents The rich picture on people with head and neck cancer The cancer The cancer journey journey We know that everyone with cancer has different experiences at different times of their cancer journey. However, most people will go through one or more of the four stages of the ‘cancer journey’. The following pages summarise what we currently know about the needs and experiences of people with head and neck cancer at these stages. 24 Contents A typical ‘cancer journey’ showing four key stages: Diagnosis Treatment What happens to me when I’m diagnosed with cancer? What can I expect when I’m being treated for cancer? •People often show signs and symptoms that may be caused by cancer, and a GP can refer patients for tests to find out more. •Cancer can be treated in different ways depending on what type of cancer it is, where it is in the body and whether it has spread. •Screening aims to detect cancer at an early stage or find changes in cells which could become cancerous if not treated. However, screening is not yet available routinely for head and neck cancer. •Different cancer types can have varying treatment regimes, and treatment is personalised to each patient. •However, screening can only pick up some cancers, and we know that some people have their cancer diagnosed at a late stage – this can have a huge effect on their chances of survival. Survivorship* Progressive illness and end of life If I complete my treatment for cancer, what next? If my cancer is incurable, what might I experience? •An increasing number of people survive their initial (or subsequent) cancer treatments, and often have rehabilitation and other needs post-treatment. •Progressive illness includes people with incurable cancer, but not those in the last year of life. Many of these people have significant treatment-related illnesses. •We also know they need support to be able to self-manage. •End of life generally means those in the last year of life. Needs often get greater as the person moves closer to death. •Many people in this stage experience long-term or late effects of their cancer, and/or their cancer treatment. *While Survivorship relates to the time both during and post-treatment, as illustrated by the Recovery Package (p41), this section largely highlights the post-treatment needs and experiences of people living with cancer. 25 Contents The cancer journey Understanding the numbers, needs and experiences of people affected by cancer The cancer journey – Diagnosis The rich picture on people with head and neck cancer needs and experiences diagnosis What are the top 3 signs and symptoms General awareness of cancer signs and of head and neck cancer? (23) symptoms is lower in men, those who are There are over 30 different areas of the head and neck where cancer can develop so signs and symptoms vary. Some of the most common include: 1.Hoarseness persisting for more than six weeks 2.Ulceration of the mouth persisting for more than three weeks 3.Oral swellings persisting for more than three weeks How good are we at early diagnosis? How aware are people of signs and symptoms? How aware are GPs of signs and symptoms? Head and neck cancers are often diagnosed late, because they can lack any specific symptoms, and patients often present having developed a second primary tumour affecting their respiratory system, for example in the lungs.(24) Because head and neck cancers are relatively rare, the average GP would only expect to see a new case about once every six years.(23) We were unable to find any specific research into GP awareness of signs and symptoms of head and neck cancer. younger, and from lower socio-economic status groups or ethnic minorities.(25) The most commonly endorsed barriers to seeking medical help with potential cancer symptoms are: difficulty making an appointment, worry about wasting the doctor’s time and worry about what would be found. Emotional barriers are more prominent in lower socio-economic groups and practical barriers (eg ‘too busy’) are more prominent in higher socio-economic groups.(25) Low cancer awareness contributes to delay in presentation for cancer symptoms and may lead to delay in cancer diagnosis.(26) How well does screening work for head and neck cancer? There is no national screening programme for any form of head and neck cancer and it is unlikely that such a programme will be established in the near future. Screening has been considered for oral cancer but as it is relatively rare the pick-up rate would be very low. There is also little evidence to show that screening would be beneficial for the population as a whole. More research is needed, particularly on screening members of high risk groups.(92) Patients with cancer in the UK tend to present with more advanced disease and have poorer survival rates than many of their European counterparts. The most likely explanations are either late presentation by patients or late onward referral by GPs.(25) 26 Contents ‘I was diagnosed with a tumour in one of my tonsils and was told I’d be having a scan that same afternoon. My first thought was that I really didn’t have time as I had a business meeting. My second thought was perhaps I’ll never be able to work ever again.’ Mark, 58 27 Contents The cancer journey – Diagnosis Understanding the numbers, needs and experiences of people affected by cancer The cancer journey – Diagnosis The rich picture on people with head and neck cancer How is head and neck cancer diagnosed?* (Routes to diagnosis)(27) Routes to diagnosis, 2006-2010, England Oral Larynx Emergency Emergency 6% 11% GP referral GP referral 27% 40% Two Week Wait Two Week Wait 31% 33% Other** 35% Other** 15% * Does not add up to 100% due to rounding. **‘Other’ includes inpatient, outpatient, and unknown routes. 11% of people newly diagnosed with cancer of the larynx, and 6% of people diagnosed with cancer of the oral cavity are diagnosed via the emergency route. This is significantly lower than the average for all cancers (23%), although patients with head and neck cancers tend not to be diagnosed early. 28 Contents How many head and neck cancer patients had to see their GP more than twice before they were diagnosed? (28) More than two GP visits, 2013, UK Brain/Central Nervous system 39% Haematological 37% Sarcoma 36% Other 35% Lung 32% Upper Gastro-Intestinal 32% Colorectal 31% Gynaecological 28% Head and Neck 26% Prostate 24% Urological 22% Skin Breast 10% 8% 26% of people newly diagnosed with head and neck cancer had to see their GP more than twice before they were diagnosed compared with 8% of breast cancer patients, and 10% of skin cancer patients. 29 Contents The cancer journey – Diagnosis Understanding the numbers, needs and experiences of people affected by cancer The cancer journey – Diagnosis The rich picture on people with head and neck cancer How does stage at diagnosis relate to probable survival rates? The impact of Stage at diagnosis on survival – head and neck cancer The staging of the different types of head and neck cancers are all slightly different.(29) Most types of cancer have 4 stages, numbered from 1–4. Stage 1 Stage 2 Stage 3 Stage 4 Usually means a cancer is relatively small and contained within the organ it started in. Usually means the cancer has not started to spread into surrounding tissue, but the tumour is larger than Stage 1. Sometimes Stage 2 means that cancer cells have spread into lymph nodes close to the tumour. This depends on the type of cancer. Usually means the cancer is larger. It may have started to spread into surrounding tissues and there are cancer cells in the lymph nodes in one area. Means the cancer has spread from where it started to another body organ. This is also called secondary or metastatic cancer. The later the stage at diagnosis, the poorer the chances of survival – in other words early diagnosis and treatment of head and neck cancer saves lives. 30 Contents How long do people with head and neck cancer have to wait to be referred? (30) According to recent data for England, 95% of patients with suspected head and neck cancer were seen by a specialist within 2 weeks of referral. This is in line with the average of 94% for all cancers. 31 Contents The cancer journey – Diagnosis Understanding the numbers, needs and experiences of people affected by cancer The cancer journey – Diagnosis The rich picture on people with head and neck cancer Financial and medical needs needs Physical Pain, mouth sores, loss of appetite and swallowing problems are reasons for the observed weight loss in head and neck cancer patients even before treatment has started.(31) Not specific to people with head and neck cancer 20% of people with head and neck cancer felt that their health deteriorated whilst they were waiting for their first hospital appointment. This is compared to 6% of patients with breast cancer and 6% of patients with malignant melanoma.(32) An estimated 30% of people with cancer experience a loss of income as a result of their cancer, with those affected losing, on average, £860 a month. Additional costs and loss of income arise at different points in the cancer journey, but these figures show the financial strain that a cancer diagnosis can place on many families.(13) 83% of people with cancer are financially worse off because of their diagnosis.(13) A 2012 survey found that 33% of people affected by cancer stopped working either permanently or temporarily.(13) 32 Contents Emotional and information psychological needs needs Practical and There are still significant delays in the diagnosis of head and neck cancer. In a 2011 study, people with oral and oropharyngeal cancer said that they lacked knowledge about this type of cancer, and therefore did not report to the doctor earlier.(34) 60% of head and neck cancer patients say they were given written information about the type of cancer that they had, and that it was easy to understand. This compares to 71% of cancer patients overall.(35) The way the diagnosis of head and neck cancer is given and the availability of information and support at this point is of the utmost importance to patients. However, a survey carried out by the National Cancer Alliance contains examples of insensitive communication by doctors, and the resulting distress for both patients and their partners.(23) Not specific to people with head and neck cancer Not specific to people with head and neck cancer Cancer affects people physically, emotionally and financially. However, the emotional effects are often the most neglected and last the longest even after treatment is finished.(37) A significant proportion of newly-diagnosed patients undergoing cancer treatment have unmet needs. The most common needs include information needs, physical needs and psychological needs. The level of unmet needs is highest after diagnosis and at the start of treatment, and decreases over time.(10) Although a certain amount of emotional distress is common, particularly around the time of a diagnosis, around half of all people with cancer experience levels of anxiety and depression severe enough to adversely affect their quality of life.(37) The strongest preference for information at diagnosis is information about prognosis. However, there are also many other information needs such as side effects of treatment, impact on family and friends, altered body image, self care and risks of family developing the disease.(11) 33 Contents The cancer journey – Diagnosis Understanding the numbers, needs and experiences of people affected by cancer The cancer journey – Treatment The rich picture on people with head and neck cancer needs and experiences TREATMENT Most head and neck cancers are treated by surgery, radiotherapy or a combination of both. Plastic or reconstructive surgery is also often needed for patients with these cancers.(23) What treatments do head and neck cancer patients get? Surgery Surgery is one of the main forms of treatment for head and neck cancers. The part of the mouth or throat that is affected may be removed depending on the exact location of the tumour.(39) The percentage of head and neck cancer patients treated within NHS hospitals in England with a record of major surgical resection varies depending on the site. Of all head and neck cancers, oral cavity cancer (71.4%) has the highest percentage of major surgical resections, whereas hypopharynx cancer (42.1%) shows the lowest proportion.(40) Radiotherapy Radiotherapy is an intensive form of treatment that uses high-energy rays to kill cancer cells. Head and neck cancers account for around 5% of all radiotherapy episodes in England (2009-2010). There were 6,499 radiotherapy episodes and 151,858 radiotherapy attendances for head and neck cancers.(41) A study from the Oxford cancer intelligence unit suggests that in England almost half (47.4%) of head and neck cancer patients diagnosed between 2006 and 2008, received radiotherapy.(41) 34 External beam radiotherapy is the most common way of giving radiotherapy to the head and neck area, but some cancers can also be treated by implanting radioactive material into the tumour and leaving it for several days. This is known as internal radiotherapy, or interstitial radiotherapy.(42) Chemotherapy Chemotherapy, a combination of anti-cancer drugs, is normally given at the same time as radiotherapy. This is known as chemo-radiation. Chemotherapy may also be given before chemoradiation treatment, which is known as induction chemotherapy. Very occasionally chemotherapy is given before surgery to shrink the tumour and make it easier to remove.(7) Biological therapy Biological therapies use substances that are produced naturally in the body to destroy cancer cells. Biological therapies like monoclonal antibodies and cancer growth inhibitors are sometimes used to treat head and neck cancers, and are mainly given as part of cancer research trials.(15a) Photodynamic therapy Photodynamic therapy (PDT) uses a combination of laser light of a specific wavelength and a lightsensitive drug to destroy cancer cells. In early stage cancer of the head and neck PDT may be used to try to cure the cancer and is usually given as part of research trials. PDT can sometimes be used to shrink an advanced cancer to reduce symptoms, but it cannot cure an advanced cancer.(15c) Contents How many head and neck cancer admissions are there and how many head and neck cancer patients stay in hospital (and for how long)? In total, there were over 27,492 admissions to NHS hospitals in England (emergency and non-emergency) for head and neck cancers during 2012-13.(43) The median length of stay for head and neck cancer patients who were admitted was between 1-5 days (depending on the specific type of head and neck cancer) in 2012-13.(43) Research has shown that for all cancers (not head and neck specifically), those who are newly diagnosed or near end of life are much more likely to spend time in hospital.(45) What can a person with head and neck cancer expect from a typical treatment regime? Cancers affecting the head and neck are uncommon so people with this type of cancer are usually treated in specialist hospitals. This can mean that patients need to travel to receive treatment. Treatment for most forms of head and neck cancer has permanent effects on organs essential for normal activities like breathing, speaking, eating and drinking. As a result, many patients facing treatment require expert support before, during, and after treatment. Many are likely to need rehabilitation over a sustained period.(23) Head and neck cancers present special challenges because of the complexity of the anatomical structures and functions affected. A variety of professionals are involved in treating patients with these cancers, as part of a multidisciplinary team (MDT), including oral and maxillofacial surgeons or ear, nose and throat (ENT) surgeons, speech and language therapists, dietitians, and dentists or oral hygienists.(23) Surgery is one of the main forms of treatment for head and neck cancers, along with radiotherapy and chemotherapy. Very small cancers can often be treated with a simple surgical operation with no need to stay in hospital overnight. If the cancer is larger, surgery will often involve a hospital stay and an operation under general anaesthetic.(39) Sometimes the surgery may involve more than one part of the head and neck, and may cause scarring on the face or neck. Some people may need to have plastic or reconstructive surgery to their face.(39) Radiotherapy for head and neck cancers is usually given in combination with chemotherapy. This is known as chemo-radiation. This may be used instead of, or after surgery. Combined treatment is thought to be more effective than using either chemotherapy or radiotherapy alone. However, radiotherapy may sometimes be used alone if a person is not fit or well enough to have chemo-radiation.(44) 35 Contents The cancer journey – Treatment Understanding the numbers, needs and experiences of people affected by cancer The cancer journey – Treatment The rich picture on people with head and neck cancer How many people with head and neck cancer have access to a head and neck Clinical Nurse Specialist (CNS)? (46) There are currently 134 head and neck cancer nurse specialists in England, who make up 6% of all Clinical Nurse Specialists in England. Macmillan’s internal data suggests that we had (as of June 2014) 122 Macmillan head and neck cancer nurse posts across the UK.(47) 84% of people with head and neck cancers were given the name of a Clinical Nurse Specialist who would be in charge of their care. This is compared to 93% of people with breast cancer.(48) What does this mean for patients? Patients with a Clinical Nurse Specialist are more likely to be positive about their care and treatment than patients without a Clinical Nurse Specialist. This is particularly the case with regards to verbal and written information, involvement, information on financial support and prescriptions, discharge information and post discharge care and emotional support.(49) Research suggests that clinical nurse specialists can influence head and neck cancer treatment through emphasis on symptom management, stopping tobacco and alcohol intake, and on patient and family education and care coordination.(50) 36 What other health conditions do people with head and neck cancer have? How does this affect their treatment, survival, long-term effects or experiences? Patients who present with some of the most common head and neck cancers often have underlying health problems, linked to smoking and alcohol consumption. Co-morbidities linked to smoking and alcohol can complicate how these cancers are managed, as fitness to undergo treatment can be a key issue in determining treatment options. Continuing to smoke and drink during and after treatment can also have an impact on recovery, and long-term survival.(23) Macmillan has produced an ‘Impact Brief on Clinical Nurse Specialists ’. This is an evidence review, which more fully sets out how our CNSs use their skills and expertise in cancer care to provide technical and emotional support, coordinate care services and inform and advise patients on clinical as well as practical issues, leading to positive patient outcomes. The paper, along with other Impact briefs, is available via the Macmillan website, at www.macmillan.org.uk/servicesimpact Contents ‘During treatment I fell to just under 8 stone, lost all sense of taste, ate my last meal and then was reliant on the peg tube. Most of the skin around my neck blistered and burnt from the radiotherapy and I was on morphine to ease the pain.’ Edward, 50 37 Contents The cancer journey – Treatment Understanding the numbers, needs and experiences of people affected by cancer The cancer journey – Treatment The rich picture on people with head and neck cancer Financial and medical needs needs Physical Pain is commonly experienced by patients with head and neck cancer. Evidence suggests around 50% of head and neck patients report pain before starting treatment, increasing to 81% of patients who are undergoing treatment.(52) Treatment for head and neck cancers can cause problems with eating, swallowing, breathing and speech.(23) A study involving patients undergoing surgery and radiotherapy for oral cancers demonstrated that increasing supervision by a dietician reduced the incidence of severe weight loss during and after treatment.(23) A 2013 study of people with head and neck cancer found that weight loss of more than 10% during and directly after radiotherapy has a significant impact on social eating, social contact, and quality of life.(36) 58% of head and neck cancer patients who said it was necessary said that hospital staff gave them information about how to get financial help or any benefits they might be entitled to. This compares to 54% of cancer patients overall.(53) A 2012 survey found that a change in the type of food presented a notable financial cost to 21% of people with head and neck cancer.(38) Not specific to people with head and neck cancer The most common cost that people living with cancer face is getting to and from their hospital appointments. The cost of getting to and from appointments affects 69% of people with cancer and costs them, on average, £170 a month.(13) 24% of cancer patients say that they were not told by hospital staff that they could get free prescriptions, and that they would have liked to know about this.(61) Costs associated with outpatient appointments hit almost three-quarters (71%) of people living with cancer, and over a quarter (28%) incurred costs for inpatient appointments.(13) 33% of people with cancer spend an additional £24 a month on household fuel bills as a result of their cancer and/or its treatment.(13) 38 Contents Emotional and information psychological needs needs Practical and Treatment for head and neck cancer can have severe side effects. It is therefore important that patients should be educated about adverse effects of treatment before it begins, so that they know what problems may be anticipated, when they are likely to occur, how to minimise their impact and how long they may be expected to last.(23) 70% of people needing emotional support with head and neck cancer felt that they were definitely given enough emotional support from hospital staff during treatment. This is compared to 73% of people with haematological cancer and 74% of people with skin cancer.(57) 65% of head and neck cancer patients say they were given written information about their operation and that it was easy to understand. This compares to 74% of cancer patients overall.(55) Amongst all cancer patients the overall prevalence of psychological distress is 25% among those who are undergoing, or have just finished, cancer treatment.(56) Not specific to people with head and neck cancer Not specific to people with head and neck cancer 10% of people with cancer are not given enough information about their condition and treatment, while 2% are given too much.(54) 39 Contents The cancer journey – Treatment Understanding the numbers, needs and experiences of people affected by cancer The rich picture on people with head and neck cancer The cancer journey – Survivorship needs and experiences Survivorship (post-treatment) Why are cancer survivors (all cancer survivors; not just head and neck cancer survivors) not catered for properly by the current system? •One in six people (17%) who were diagnosed with cancer more than 10 years ago have not been visited at home by a friend or family member for at least six months.(68) The current system for cancer patients after the end of treatment concentrates on medical surveillance, and looking for recurrence. However we know that this does not address people’s needs: Cancer survivors have greater health needs than the general population •39% who completed treatment in 2009/10 say that no health or social care professional talked them through the needs they might have.(90) • 94% experience physical health condition problems in their first year after treatment.(59) •78% of people with cancer have experienced at least one physical health condition in the last 12 months which can occur as a result of cancer or its treatment.(59) •62% of people with cancer have experienced at least one of the psychological conditions that can occur as a result of cancer and its treatment.(59) •40% of people with cancer with emotional difficulties had not sought medical help or other support.(67) •23% of people with cancer lack support from friends and family during treatment and recovery.(68) 40 •90% of cancer survivors have visited their GP and 45% visited a specialist doctor in the last 12 months. This compares with 68% and 15% of the wider population.(91) •Recent studies have shown that less than 25% of cancer patients have received a holistic needs assessment and a care plan. Both of these are essential in providing personalised care for cancer patients and their carers.(91) Macmillan and NHS England are working to implement personalised support for all cancer survivors The National Cancer Survivorship Initiative (NCSI) was a partnership between the Department of Health, Macmillan and NHS Improvement. NCSI reports were produced in 2013, including ‘Living with and beyond cancer: Taking Action to Improve Outcomes’, which informs the direction of survivorship work in England, to support commissioners, health service providers and others to take the actions necessary to drive improved survivorship outcomes. Contents The document was followed by: ‘Innovation to implementation: Stratified pathways of care for people living with or beyond cancer: A “how to’ guide”’. The documents set out what has been learned about survivorship, including interventions that have been tested and are ready to be spread across England, and could make an immediate difference to people affected by cancer. These include: A key intervention which is the ‘Recovery Package’ consisting of: •Structured Holistic Needs Assessment and care planning, •Treatment Summary to provide good communication to primary care including information about treatment, and the potential short-and long-term consequences. •Education and support events, such as Health and Wellbeing Clinics, which give patients information about lifestyle choices, signs and symptoms of recurrence, getting back to work, benefits and financial support. •The Cancer Care Review carried out by the GP six months following a diagnosis of cancer Further key interventions include: •Offering appropriate information including information about work support needs onwards referral to specialist vocational rehabilitation services and financial support •Offering advice on physical activity, weight management and how to access appropriate programmes. Copyright © Macmillan Cancer Support 2013 Permission granted for use as seen, this notice must remain intact in all cases. All rights reserved. 41 Contents The cancer journey – Survivorship Understanding the numbers, needs and experiences of people affected by cancer The cancer journey – Survivorship The rich picture on people with head and neck cancer Financial and medical needs needs Physical Treatment for head and neck cancers often has permanent effects on basic activities like breathing, speaking, eating and drinking. Patients undergoing any type of treatment often need specialist support and many need rehabilitation over a sustained period.(23) Oral dysfunction, loss of appetite, deteriorated social functioning and high levels of anxiety are barriers for head and neck cancer patients to return to work after treatment.(62) Head and neck cancer patients often face a number of physical, emotional and social issues linked to changing eating habits.(58) Among cancer patients the main barrier to accessing benefits is a lack of knowledge about benefit entitlement. This outweighs factors such as the perceived stigma of benefits and concerns about benefit fraud. Some people affected by cancer do not know that they can claim benefits even when they have completed initial treatment.(60) Not specific to people with head and neck cancer 33% of all people living with cancer find participation in vigorous activities very difficult or report not being able to do them at all, while 16% find performing physical activities very difficult.(59) 42 Not specific to people with head and neck cancer Contents Emotional and information psychological needs needs Practical and Of those patients who said they needed it, only 56% of head and neck cancer patients said they were definitely given enough care and help from health or social services after leaving hospital.(64) For head and neck cancer patients information on the chances of recurrence, radiotherapy, and how surgery might affect functions such as speaking or eating are key areas of information.(65) Not specific to people with head and neck cancer Many cancer outpatients feel that their information needs are not being met. The most common areas of complaint are the lack of genetic information and information about lifestyle changes, and help with worries about spread or recurrence.(63) High levels of self-consciousness of appearance have been found amongst patients with head and neck cancer.(65) Patients with head and neck cancer have been found to be more frequently distressed than patients with other cancers.(66) A study in England found that one-third of head and neck cancer patient respondents reported substantial problems with sexual interest and enjoyment, and one-quarter reported problems with intimacy.(69) Not specific to people with head and neck cancer 23% of people living with cancer report poor emotional well-being.(59) Emotional and psychological long-term side effects of cancer and its treatment include depression, anxiety and post-traumatic stress disorder (PTSD).(67) In the year following diagnosis, around 1 in 10 people living with or beyond cancer experience symptoms of anxiety and depression so severe that they need specialist psychological or psychiatric services.(37) 43 Contents The cancer journey – Survivorship Understanding the numbers, needs and experiences of people affected by cancer The rich picture on people with head and neck cancer The cancer journey – Progressive illness and end of life needs and experiences progressive illness and end of life What health data do we have on head and neck cancer patients with progressive illness? There is currently no specific data on head and neck cancer patients with progressive illness. How many head and neck patients are at the end of life? There is currently no specific data on how many head and neck cancer patients are at end of life. What is the impact of giving patients palliative care? How many cancer deaths there are in each setting? Data on place of death is not available broken down by cancer type. However for all cancers, we know that cancer deaths in England & Wales account for 90% of all deaths in hospices, 39% of all deaths at home, 23% of all deaths in hospital, 18% of all deaths occur in care homes, 19% of all deaths in communal establishments and 23% of all deaths elsewhere.(6b) For further information, visit the National Council for Palliative Care website, www.ncpc.org.uk The National Institute for Clinical Excellence (NICE) has defined supportive and palliative care for people with cancer. With some modification the definition can be used for people with any life-threatening condition: “Palliative care is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is the achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.”(71) 44 Contents How many cancer deaths there are in each setting?*(73) Hospital 38% Home (own residence) 30% Hospice 18% Care and nursing home 13% *Does not add up to 100% due to rounding. 45 Contents The cancer journey – Progressive illness and end of life Understanding the numbers, needs and experiences of people affected by cancer The cancer journey – Progressive illness and end of life The rich picture on people with head and neck cancer To what extent do cancer patients die in the place of choice? A recent survey found that 73% of people who died from cancer would have liked to have spent the last weeks and days of their life at home (20). However, only 30% of those who die from cancer actually die at their home or own residence (6b). 46 Contents ‘With my husband’s prognosis it’s so important that he gets as good a quality of life as possible…without Macmillan’s advice and help we would never have managed to claim the benefits we did and for that we are so grateful.’ Jane, 58, carer for her husband who has terminal head and neck cancer. 47 Contents The cancer journey – Progressive illness and end of life Understanding the numbers, needs and experiences of people affected by cancer The cancer journey – Progressive illness and end of life The rich picture on people with head and neck cancer Financial and medical needs needs Physical For head and neck patients with late stage disease, good nursing care and palliative measures to help them eat and breathe are crucial.(23) Not specific to people with head and neck cancer 457,000 people (not just those with cancer) need good palliative care services every year in England, but around 92,000 people are not being reached.(75) Various symptoms are very common in advanced cancer, with patients experiencing an average of 13 symptoms on admission to hospital.(76) The most common symptoms experienced by more than half of people during their last two weeks of life include shortness of breath, pain, and confusion.(77) Not specific to people with head and neck cancer “According to a 2010 Macmillan report, 36% of all people with terminal cancer did not claim the benefits they were entitled to. This amounts to over £90m.(78)” People with a terminal diagnosis who wish to travel may have their travel insurance cover refused by insurance companies, or be offered cover at prohibitively high premiums, stopping them from fulfilling their wishes.(79) The death of a partner has been shown to be a trigger for claiming income support.(80) Anxiety about financial insecurity is common in the days and weeks after a partner has died, but uncertainties can extend into the first or second year after death.(81) A study on financial impact has revealed that, after a partner’s death, the number of women feeling financially worse off doubled from 24% to 48%. The number of men who felt worse off also increased from 19% to 30% as a result of their partner’s death.(8) 48 Contents Emotional and information psychological needs needs Practical and Not specific to people with head and neck cancer Not specific to people with head and neck cancer Cancer patients and their families often want information about how long they may have to live after hearing that their cancer is terminal. However, 31% of doctors tend to overestimate the survival times of terminally ill cancer patients.(82) Cancer patients approaching death suffer more psychological distress.(56) Those who are older, male, from ethnic minorities, not married, lacking in home care, or socio-economically disadvantaged are all less likely to access community palliative care services.(83) 83% of people say they are scared of dying in pain, while 67% say they are scared of dying alone, and 62% are scared of being told they are dying.(84) Amongst all cancer patients receiving palliative care the overall prevalence of psychological distress is 59%.(56) A survey by Macmillan of people who have received a cancer diagnosis found that 57% would like to spend the last weeks and days of their life at home. This rose to 73% if all their concerns, which included access to round the clock care, about dying at home were addressed. Only 1% of respondents would choose to die in hospital.(85) 49 Contents The cancer journey – Progressive illness and end of life Understanding the numbers, needs and experiences of people affected by cancer Lifestyle and perceptions The rich picture on people with head and neck cancer lifestyle and percePtions This section attempts to give an indication of the typical profile of people living with head and neck cancer, although we know that there is huge variation within the population. This section also provides insight into perceptions about head and neck cancer. What is the profile of the average person living with head and neck cancer? There is some dissimilarity in the profile of the average person living with different types of head and neck cancer. Both cancer of the oral cavity and laryngeal cancer, the two most common types of head and neck cancer, can affect men and women, but both are more common in men. There are more new cases of oral cancer in men than women at a ratio of 2:1(17), and in new cases of laryngeal cancer there is a male to female ratio of almost 5:1.(18) Asian women are much more likely to be affected by cancers of the mouth than women of White or Black ethnic origin. Comparable data is not available for other types of head and neck cancer.(19) Oral cancer incidence is strongly related to age, though the patterns by age are quite different for men and women. Oral cancer is most common in men between the ages of 60-69, before falling in the over 70s, whilst in women it is most common in those aged over 85.(17) Laryngeal cancer is rarely diagnosed in people younger than 40, but incidence rises steeply thereafter, peaking in people aged 70-74.(18) 50 Contents What is the demographic breakdown/ In addition to the above, there are two Types market segmentation of the 62,530 within Group J (Claimants Cultures) and (86) head and neck cancer patients? Group K (Upper Floor Living) who are We have analysed England hospital episode statistics and compared this to the general population to see which MOSAIC* groups and types are more prevalent amongst head and neck cancer patients attending hospital. We believe the correlations seen in England will be broadly similar to those seen in the other three UK nations, and so this insight could be applied UK-wide. Amongst head and neck cancer patients, the following MOSAIC* group shows significantly greater than average representation: Group L: Elderly Needs (elderly people reliant on state support): People in Group L are usually pensioners who may be struggling with the responsibility of looking after the family house and garden. Most of these people are in their 70s, 80s or 90s. Most of them are on low pension incomes. They tend to live in various types of home, including nursing homes, sheltered accommodation, their own family home, or a down-sized property. In addition to Group L, the following MOSAIC* group shows greater than average representation amongst head and neck cancer patients: also well-represented amongst head and neck patients: • Group J, Type 42: Worn Out Workers • Group K, Type 47: Deprived View What are the typical leisure activities/ where they shop/what media they consume/what they do? (86) • Group L: Elderly Needs: People in this group tend to be less physically active. Watching TV is popular as is shopping in charity shops. They tend to lack familiarity with IT, so most of the people in this group receive information from watching TV and daily newspapers, and most are not using the internet. • Group E: Active Retirement. Holidays, cruises and dining out for those who are well-off. Reading books, doing crosswords, knitting and looking after grandchildren are also popular activities. They tend to read national daily newspapers every day. *For more detail and definitions see www.experian.co.uk/business-strategies/ mosaic-uk-2009.html Group E: Active Retirement (active elderly people living in pleasant retirement locations): People in Group E are mostly people aged over 65 whose children have grown up and who, on retirement, have decided to move to a retirement community among people of broadly similar ages and incomes. Most of these people have paid off their mortgages on their family home and now live in a bungalow or country cottage. For some, the move to a rural or coastal location is an opportunity to make a new start and explore new places. Most people in this group will have the benefit of a company pension and many will have access to savings. Others may be on lower state pensions, and may struggle with rising utility bills. 51 Contents Lifestyle and perceptions Understanding the numbers, needs and experiences of people affected by cancer Lifestyle and perceptions The rich picture on people with head and neck cancer What are people affected by head and neck cancer saying about their lives both before and after a cancer diagnosis? Before: ‘I didn’t know it was there, I just had a bit of a sore throat every now and again. I just got on with it and took pain killers.’ Samantha, 39, Northern Ireland. ‘I started to notice what felt like a bit of food trapped at the back of my mouth. I looked in my mouth in the mirror and I could see a little white bobble at the back of my throat. I went to my doctor and initially they treated me for tonsillitis, giving me antibiotics. Nothing changed and I went backwards and forwards to the doctors for about 5 weeks before they referred me to an ear, nose and throat specialist.’ David, 52, South West. 52 Contents After: ‘When this happens to you and you look at yourself in the mirror you wonder what on earth you are going to do… There is a future. Yes, it’s life-changing but it’s not the end of the world.’ Philip, 63, London. ‘After treatment it was a shock to be a healthy person again. I struggled to motivate myself and found that I didn’t have courage to be independent again.’ Laura, 37, South East. ‘It’s just nice to speak to people who’ve been in similar situations. When you have a hard day and can’t do something, it’s good to hear it can and does get better. Other people’s stories can be inspirational.’ Sophie, 33, North East. 53 Contents Lifestyle and perceptions Understanding the numbers, needs and experiences of people affected by cancer Lifestyle and perceptions The rich picture on people with head and neck cancer How does people’s fear of head and neck cancer compare to actual survival rates? A 2011 study by Cancer Research UK surveyed people’s fear of certain cancer types. However, head and neck cancer was not included in the research. Instead of showing the results of that research, we devote this page to a different set of results from the same survey which examined how people’s fear of cancer compares to other feared diseases. How much do people fear cancer? (87) I don’t fear getting any condition/disease 10% Don’t know/prefer not to say 8% Diabetes 1% HIV 2% Multiple sclerosis 2% Heart disease 3% Stroke 5% Motor neurone disease 7% Alzheimer’s 25% Cancer 54 35% Contents Understanding the numbers, needs and experiences of people affected by cancer 55 Lifestyle and perceptions 35% of people in the UK fear cancer more than other life-threatening conditions, such as Alzheimer’s, stroke and heart disease. Contents Lifestyle and perceptions The rich picture on people with head and neck cancer What our head and neck cancer online Macmillan Community members are saying…(88) How the media* portrays head and neck cancer…(89) *UK national daily newspapers Note: these ‘word clouds’ give greater prominence to words that appear more frequently in the source text. 56 Contents Understanding the numbers, needs and experiences of people affected by cancer Lifestyle and perceptions What does this mean? What do we want to change in terms of people’s perceptions? Macmillan hosts online discussions on its website; we have analysed the frequency of words used in the discussions relating to head and neck cancer compared to the frequency of words used in UK media articles where head and neck cancer is the subject. The results are summarised here: • The media reports on head and neck cancer clearly focus on the causes of the disease. The most frequent words include ‘alcohol’ and ‘drinking’. Interestingly, neither of these words appear in the online community word cloud. • The online community instead concentrates on the emotional and physical side effects of head and neck cancer and its treatment. Words such as ‘shock’, ‘positive’, ‘horrific’ and ‘strong’ show something of the emotional rollercoaster which faces people living with cancer. • The terms ‘mum’ and ‘family’ feature prominently in the online community discussions, probably referring to loved ones who have head and neck cancer. The online community may include many family members who are carers and rely on this community for support that is not readily available elsewhere. 57 Contents References The rich picture on people with head and neck cancer Quotes The quotes on pages 23, 27, 37, 47, 52 and 53 are real quotes from people with head and neck cancer or their carers, however we have changed their names to protect their identity. The quote and photo on page 5 is from a Macmillan head and neck case study who has kindly agreed to be featured in this publication. References References 1. Macmillan Cancer Support. Cancer Information section on head and neck cancers. http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Headneck/Aboutheadneckcancers/ Headneckcancers.aspx (Accessed September 2014) 2. Prevalence in 2015 estimated from Maddams et al. (2012). Prevalence in 2030 and 2040 taken directly from Maddams J, Utley M and Møller H. 2012. Projections of cancer prevalence in the United Kingdom, 2010–2040. British Journal of Cancer. 2012; 107: 1195-1202. (Scenario 1 presented here) 3a. Office of National Statistics. Cancer Registration Statistics. 2012. http://www.ons.gov.uk/ons/rel/vsob1/ cancer-statistics-registrations--england--series-mb1-/no--43--2012/rft-cancer-registration-statistics.xls (Accessed September 2014) 3b. ISD Scotland. Cancer Incidence in Scotland 2012. http://www.isdscotland.org/Health-Topics/Cancer/ Publications/data-tables.asp?id=1233#1233 (Accessed September 2014) 3c. Welsh Cancer Intelligence and Surveillance Unit. Incidence Trends. 2012 http://www.wcisu.wales.nhs.uk/ officical-statistics-exel-files-of-trend (Accessed September 2014) 3d. Northern Ireland Cancer Registry. Cancer Data 2012. http://www.qub.ac.uk/research-centres/nicr/ CancerData/OnlineStatistics (Accessed September 2014) 4. Personal Communication: NCIN. 2014. Macmillan-NCIN work plan. Segmenting the cancer survivor population: by cancer type, 20-year prevalence at the end of 2010, UK. Data sourced and presented in collaboration with the Welsh Cancer Intelligence and Surveillance Unit, Health Intelligence Division, Public Health Wales, the Information Services Division Scotland and the Northern Ireland Cancer Registry. The analysis is based on patients diagnosed with cancer between 1991 and 2010 in England, Wales and Scotland, and between 1993 and 2010 in Northern Ireland. To ensure that patients, rather than tumours, were counted, only the first diagnosed tumour (excluding non-melanoma skin cancer) of each cancer type in each patient was included in the analysis. The numbers in this analysis may not agree with those published elsewhere due to slight differences in methodologies, periods of observation, datasets, and rounding. 5. Office for National Statistics. Cancer Survival in England: Patients diagnosed 2007–2011 and followed up to 2012. http://www.ons.gov.uk/ons/publications/re-reference-tables. html?edition=tcm%3A77-320365 (Accessed September 2014) 58 Contents 6a. Northern Ireland Cancer Registry. Cancer Data 2012. http://www.qub.ac.uk/research-centres/nicr/ CancerData/OnlineStatistics (Accessed September 2014) 6b. Office for National Statistics and London School of Hygiene and Tropical Medicine. Mortality statistics. Deaths registered in England and Wales 2012. http://www.ons.gov.uk/ons/rel/vsob1/mortality-statistics-deaths-registered-in-england-and-wales--series-dr-/2012/dr-tables-2012.xls (Accessed September 2014) 6c. ISD Scotland. Cancer Mortality in Scotland 2012. http://www.isdscotland.org/Health-Topics/Cancer/ Publications/data-tables.asp?id=1233#1233 (Accessed September 2014) 7. Macmillan Cancer Support. Chemotherapy for head and neck cancer. http://www.macmillan.org.uk/ Cancerinformation/Cancertypes/Headneck/Treatingheadneckcancers/Chemotherapy.aspx (Accessed September 2014) 8. Corden A, et al. Death of a partner. Bereavement Care. 2010. 29(1): 23-28. 9. Welsh Cancer Intelligence and Surveillance Unit. Mortality Trends. http://www.wcisu.wales.nhs.uk/ officical-statistics-exel-files-of-trend (Accessed September 2014) 10. Puts MTE, et al. A systematic review of unmet needs of newly diagnosed older cancer patients undergoing active cancer treatment. Support Care Cancer. 2012. 20:1377-1394. 11. Tariman J, et al. Information needs priorities in patients diagnosed with cancer: a systematic review. J Adv Pract Oncol. 2014. 5(2): 115-122. 12. Welsh Cancer Intelligence and Surveillance Unit. Incidence Trends. http://www.wcisu.wales.nhs.uk/ officical-statistics-exel-files-of-trend (Accessed September 2014) 13. Macmillan Cancer Support. Cancer’s Hidden Price Tag: Revealing the Costs Behind the Illness. 2013. http://www.macmillan.org.uk/Documents/GetInvolved/Campaigns/Costofcancer/Cancers-HiddenPrice-Tag-report-England.pdf (Accessed September 2014) 14a. Northern Ireland Statistics and Research Agency. Cancer mortality 2011. http://www.nisra.gov.uk/ archive/demography/publications/annual_reports/2011/Table6.4_2011.xls (Accessed July 2013) 14b. Northern Ireland Cancer Registry. Cancer Incidence 2011. Personal communication from the Northern Ireland Cancer Registry. 15a. Macmillan Cancer Support. Biological or targeted therapies. http://www.macmillan.org.uk/ Cancerinformation/Cancertreatment/Treatmenttypes/Biologicaltherapies/Biologicaltherapies.aspx (Accessed September 2014) 15b. Cancer Research UK. Laryngeal Cancer Survival Statistics. http://www.cancerresearchuk.org/cancerinfo/cancerstats/types/larynx/survival/ (Accessed September 2014) 15c. Macmillan Cancer Support. Photodynamic Therapy (PDT). http://www.macmillan.org.uk/ Cancerinformation/Cancertreatment/Treatmenttypes/Othertreatments/Photodynamictherapy.aspx (Accessed September 2014) 15d. Cancer Research UK. Laryngeal Cancer Mortality Statistics. http://www.cancerresearchuk.org/cancerinfo/cancerstats/types/larynx/mortality/ (Accessed Sept 2013) 16. The King’s Fund. How to improve cancer survival: Explaining England’s relatively poor rates. http://www.kingsfund.org.uk/document.rm?id=9149 (Accessed September 2014) 17. Cancer Research UK. Oral Cancer Incidence Statistics. http://info.cancerresearchuk.org/cancerstats/ types/oral/incidence/ (Accessed September 2014) 59 Contents References Understanding the numbers, needs and experiences of people affected by cancer References The rich picture on people with head and neck cancer 18. Cancer Research UK. Laryngeal Cancer Incidence Statistics. http://info.cancerresearchuk.org/ cancerstats/types/larynx/incidence/ (Accessed September 2014) 19. NCIN. Cancer Incidence and Survival by Major ethnic group. England, 2002-2006. www.ncin.org.uk/ view?rid=75 (Accessed September 2014) 20. Macmillan Cancer Support. February 2010 online survey of 1,019 UK adults living with cancer. Survey results have not been weighted. 21. Oxford Cancer Intelligence Unit. United Kingdom head and neck cancer E-atlas. http://www.ociu.nhs. uk/data/eAtlas/atlas.html (Accessed September 2014). 22. Cancer Research UK. Oral Cancer Mortality Statistics. http://www.cancerresearchuk.org/cancer-info/ cancerstats/types/oral/mortality/ (Accessed September 2014) 23. National Institute for Clinical Excellence. Guidance on Cancer Services: Improving outcomes in head and neck cancers. The Manual. 2004. http://www.nice.org.uk/guidance/csghn/resources/improvingoutcomes-in-head-and-neck-cancers-the-manual2 (Accessed September 2014) 24. Cancer Research UK. Breath test could identify head-and-neck cancer patients. http://www. cancerresearchuk.org/about-us/cancer-news/press-release/breath-test-could-identify-head-and-neckcancer-patients (Accessed September 2014) 25. Robb K, et al. Public awareness of cancer in Britain: a population-based survey of adults. Brit J Cancer. 2009. 101:518-23 26. Austoker J, et al. Interventions to promote cancer awareness and early presentation: systematic review. Brit J Cancer. 2009. 101:31-39 27. National Cancer Intelligence Network. Routes to Diagnosis. http://www.ncin.org.uk/view?rid=2645 (Accessed September 2014) 28. NHS England. Cancer Patient Experience Survey 2013. Q1. http://www.quality-health.co.uk/resources/ surveys/national-cancer-experience-survey/2013-national-cancer-patient-experience-survey-reports/ (Accessed September 2014) 29. Macmillan Cancer Support. Staging of head and neck cancers. http://www.macmillan.org.uk/ Cancerinformation/Cancertypes/Headneck/Symptomsdiagnosis/Staging.aspx (Accessed September 2014) 30. NHS England. Provider based Cancer Waiting Times for Q1 2014-15. http://www.england.nhs.uk/ statistics/2014/08/29/provider-based-cancer-waiting-times-for-q1-2014-15/ (Accessed September 2014) 31. Kubrak C, et al. Nutrition impacts symptoms: key determinants of reduced dietary intake, weight loss, and reduced functional capacity of patients with head and neck cancer before treatment. Head Neck. 2010. 32(3): 290-300. 32. NHS England. Cancer Patient Experience Survey 2013. Q4. http://www.quality-health.co.uk/resources/ surveys/national-cancer-experience-survey/2013-national-cancer-patient-experience-survey-reports/ (Accessed September 2014) 33. Macmillan Cancer Support/RDSi. Telephone survey of 1,137 people affected by cancer:942 patients, 195 carers. Fieldwork conducted Nov 2005-Feb 2006. 34. Rogers SN, et al. Reasons for delayed presentation in oral and oropharyngeal cancer: the patients perspective. Brit J Oral Max Surg. 2011. 49(5): 349-353. 60 Contents 35. NHS England. Cancer Patient Experience Survey 2013. Q14. http://www.quality-health.co.uk/resources/ surveys/national-cancer-experience-survey/2013-national-cancer-patient-experience-survey-reports/ (Accessed September 2014) 36. Languis JAE, et al. More than 10% weight loss in head and neck cancer patients during radiotherapy is independently associated with deterioration in quality of life. Nutr Cancer. 2013. 65(1): 76-83. 37. National Institute for Health and Clinical Excellence. Supportive and Palliative care: The manual. http://guidance.nice.org.uk/CSGSP (Accessed September 2014) 38. Rogers SN, et al. Patients’ perception of the financial impact of head and neck cancer and the relationship to health related quality of life. Brit J Oral Max Surg. 2012. 50(5): 410-416. 39. Macmillan Cancer Support. Surgery for head and neck cancer. http://www.macmillan.org.uk/ Cancerinformation/Cancertypes/Headneck/Treatingheadneckcancers/Surgery.aspx (Accessed September 2014) 40. Oxford Cancer Intelligence Unit. Major surgical resections in England: head and neck cancers. http://www.ncin.org.uk/view?rid=1393 (Accessed September 2014) 41. National Cancer Action Team. RTDS Annual Report 2009-2010. https://www.gov.uk/government/ uploads/system/uploads/attachment_data/file/215528/dh_128868.pdf (Accessed September 2014) 42. Oxford Cancer Intelligence Unit. Travel times and distances to radiotherapy centres for head and neck cancer patients in England (2006-8). www.ncin.org.uk/view?rid=1217 (Accessed September 2014) 43. The Health and Social Care Information Centre. Hospital Episode Statistics, Admitted Patient Care – England, 2012-13. http://www.hscic.gov.uk/article/2021/Website-Search?productid=13264&q=Admi tted+Patient+Care&sort=Relevance&size=10&page=1&area=both#top (Accessed September 2014) Please note admission figures have been calculated using the ICD codes Macmillan have used when estimating prevalence for head and neck cancer (ICD C00-14 and C30-32), which excludes some ICD codes that are included by other organisations. 44. Macmillan Cancer Support. Radiotherapy for head and neck cancer. http://www.macmillan.org.uk/ Cancerinformation/Cancertypes/Headneck/Treatingheadneckcancers/Radiotherapy.aspx (Accessed September 2014) 45. Maddams J, et al. Levels of acute health service use among cancer survivors in the United Kingdom. Eur J Cancer. 2011. 47(14): 2211-2220. 46. Centre for Workforce Intelligence. Cancer CNS census. 2011. http://www.cfwi.org.uk/2014-adultcancer-specialist-nurse-census/at_download/attachment4 (Accessed September 2014) 47. Macmillan Cancer Support. Internal UK.PS@Mac data. 48. NHS England. Cancer Patient Experience Survey 2013. Q21. http://www.quality-health.co.uk/resources/ surveys/national-cancer-experience-survey/2013-national-cancer-patient-experience-survey-reports/ (Accessed September 2014) 49. NHS England. Cancer Patient Experience Survey 2013. http://www.quality-health.co.uk/resources/ surveys/national-cancer-experience-survey/2013-national-cancer-patient-experience-survey-reports/ (Accessed September 2014) 50. Kagan SH. The influence of nursing in head and neck cancer management. Curr Opin Oncol. 2009. 21(3):248-253 61 Contents References Understanding the numbers, needs and experiences of people affected by cancer The rich picture on people with head and neck cancer References 51. Piccirillo JF. Importance of comorbidity in head and neck cancer. Laryngoscope. 2000. 110:593-602. 52. Epstein JB, et al. A systematic review of orofacial pain in patients receiving cancer therapy. Support Care Cancer. 2010. 18(8): 1023-1031. 53. NHS England. Cancer Patient Experience Survey 2013. Q27. http://www.quality-health.co.uk/resources/ surveys/national-cancer-experience-survey/2013-national-cancer-patient-experience-survey-reports/ (Accessed September 2014) 54. NHS England. Cancer Patient Experience Survey 2013. Q67. http://www.quality-health.co.uk/resources/ surveys/national-cancer-experience-survey/2013-national-cancer-patient-experience-survey-reports/ (Accessed September 2014) 55. NHS England. Cancer Patient Experience Survey 2013. Q34. http://www.quality-health.co.uk/resources/ surveys/national-cancer-experience-survey/2013-national-cancer-patient-experience-survey-reports/ (Accessed September 2014) 56. Gao W, et al. Psychological distress in cancer from survivorship to end of life care:Prevalence, associated factors and clinical implications. Eur J Cancer. 2010. 46 (11): 2036-2044 57. NHS England. Cancer Patient Experience Survey 2013. Q60. http://www.quality-health.co.uk/resources/ surveys/national-cancer-experience-survey/2013-national-cancer-patient-experience-survey-reports/ (Accessed September 2014) 58. McQuestion M, et al. The changed meaning of food: Physical, social and emotional loss for patients having received radiation treatment for head and neck cancer. Eur J Oncol Nurs. 2011. 15(2): 145-151. 59. Elliott J, et al. The health and well-being of cancer survivors in the UK: findings from a populationbased survey. Brit J Cancer. 2011. 105: S11-S20. 60. Moffatt S, et al. “Done more for me in a fortnight than anybody done in all me life.” How welfare rights advice can help people with cancer. BMC Health Serv Res. 2010. 10:259. 61. NHS England. Cancer Patient Experience Survey 2013. Q28. http://www.quality-health.co.uk/resources/ surveys/national-cancer-experience-survey/2013-national-cancer-patient-experience-survey-reports/ (Accessed September 2014) 62. Verdonck-de Leeuw IM, et al. Employment and return to work in head and neck cancer survivors. Oral Oncol. 2010. 46(1): 56-60 63. Morrison V, et al. Common, important, and unmet needs of cancer outpatients. Eur J Oncol Nurs. 2012. 16(2):115-123 64. NHS England. Cancer Patient Experience Survey 2013. Q56. http://www.quality-health.co.uk/resources/ surveys/national-cancer-experience-survey/2013-national-cancer-patient-experience-survey-reports/ (Accessed September 2014) 65. Picker Institute and The Healing Foundation. Information for people living with conditions that affect their appearance. 2007. http://www.pickereurope.org/assets/content/pdf/Project_Reports/HF_ report_3_-_survey_-_FINAL_with_HF_logo_2.pdf (Accessed September 2014) 66. Singer S, et al. Predictors of emotional distress in patients with head and neck cancer. Head Neck. 2012. 34(2): 180-187. 67. Macmillan Cancer Support. Throwing light on the consequences of cancer and its treatment. 2013. http://www.macmillan.org.uk/Documents/AboutUs/Research/Researchandevaluationreports/ Throwinglightontheconsequencesofcanceranditstreatment.pdf (Accessed September 2014) 62 Contents 68. Macmillan Cancer Support. Facing the Fight Alone. 2013. http://www.macmillan.org.uk/Documents/ AboutUs/Newsroom/Isolated_cancer_patients_media_report.pdf (Accessed September 2014) 69. Low C, et al. Issues of intimacy and sexual dysfunction following major head and neck cancer treatment. Oral Oncol. 2009. 45(10): 898-903. 70. Schwartz LH, Ozzahin M, Zhang CN, Tonboul E, et al. Synchronous and metachronous head and neck carcinomas. Cancer. 1994. 74(7):1933-1938. 71. The National Council for Palliative Care. Palliative care explained. http://www.ncpc.org.uk/palliativecare-explained (Accessed September 2014) 72. Macmillan Cancer Support. Palliative and End of Life Care Framework. http://www.macmillan.org. uk/Documents/AboutUs/Health_professionals/Palliativeandendoflifecareframework.pdf (Accessed September 2014) 73. Office for National Statistics. National Bereavement Survey (VOICES) 2012. http://www.ons.gov.uk/ ons/rel/subnational-health1/national-bereavement-survey--voices-/2012/stb---national-bereavementsurvey-2012.html#tab-Place-of-Death (Accessed September 2014) 74. Macmillan Feb 2010 online survey of 1,019 people living with cancer. Respondents were sourced from Macmillan’s database of people affected by cancer in the UK who have agreed to take part in research. Survey results are unweighted. 75. Hughes-Hallett T, et al. Independent Palliative Care Funding Review. 2011. http://www.dh.gov.uk/prod_ consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_133105.pdf (Accessed September 2014). 76. Spichiger E, et al. Symptom prevalence and changes of symptoms over ten days in hospitalized patients with advanced cancer: A descriptive study. EJON. 2011. 15(2): 95-102. 77. Kehl KA, et al. A Systematic Review of the Prevalence of Signs of Impending Death and Symptoms in the Last 2 Weeks of Life. Am J Hosp Palliat Care. 2013. 30(6): 601-616. 78. Macmillan Cancer Support. Cancer patients lose out on millions of unclaimed benefits. http://www. macmillan.org.uk/Aboutus/News/Latest_News/CancerPatientsLoseOutOnMillionsOfUnclaimedBenefits. aspx (accessed September 2014) 79. Macmillan Cancer Support. Getting travel insurance when you have been affected by cancer. http://www.macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Practicalissues/Travel/ Gettingtravelinsurance.aspx (Accessed September 2014). 80. Shaw A, et al. Moving Off Income Support: Barriers and bridges. http://webarchive.nationalarchives. gov.uk/20130128102031/http:/research.dwp.gov.uk/asd/asd5/rrep053.pdf (Accessed September 2014) 81. Corden A, et al. Economic Components of Grief. Death Studies. 2013. 37(8): 725-749. 82. Gwilliam B, et al. Prognosticating in patients with advanced cancer – observational study comparing the accuracy of clinicians’ and patients’ estimates of survival. Ann Oncol. 2013. 24(2): 482-488. 83. Walshe C, et al. Patterns of Access to Community Palliative Care Services: A Literature Review. J Pain Symptom Manage. 2009. 37(5): 884-912 84. NHS National End of Life Care Programme. What do we know now that we didn’t know a year ago? http://www.endoflifecare-intelligence.org.uk/resources/publications/what_we_know_now (Accessed September 2014) 63 Contents References Understanding the numbers, needs and experiences of people affected by cancer References The rich picture on people with head and neck cancer 85. Macmillan Feb 2010 online survey of 1,019 people living with cancer. Respondents were sourced from Macmillan’s database of people affected by cancer in the UK who have agreed to take part in research. Survey results are unweighted. 86. Macmillan Cancer Support analysis, July 2012. Data was extracted from Hospital Episode Statistics (HES) database for the NHS financial year 2010/11 at episode level for all types of cancer, excluding C44 (other malignant neoplasms of skin). The data covers England only, but it is assumed that the patterns seen in England will be broadly similar in the other UK nations. The earliest hospital admittance was taken for each person within the NHS 2010/11 financial year. MOSAIC UK profiles were created for hospital admittances for people living with each of the top 10 cancer types (and a further profile for all other cancers combined, ie the rarer cancers) and compared to the base population. Base population (ie population of England) was population at the end of [December 2008 – to confirm]. HES records where the age of the patient was not recorded were removed from all analyses. Only records with a valid MOSAIC Type were analysed, however the number of these was small, and limited largely to data on people aged 0-14. MOSAIC profiles are built from 440 data elements, collated by Experian Ltd. For further details, visit www.experian.co.uk/business-strategies/mosaicuk-2009.html 87. Cancer Research UK. People Fear Cancer More Than Other Serious Illnesses. http://www. cancerresearchuk.org/about-us/cancer-news/press-release/people-fear-cancer-more-than-otherserious-illness (Accessed September 2014) 88. Macmillan Cancer Support. 2012. Word cloud created on wordle.net from Macmillan’s online community from the 30 most recent posts listed under “recent group activity for the head and neck cancer” group, on 16 August 2012) 89. Macmillan Cancer Support/Factiva. 2012. Word cloud formed from an analysis on 16 August 2012 using www.wordle.net of the 100 most recent UK national daily newspaper articles where the key words of “head and neck cancer”, “throat cancer” or “mouth cancer” appeared at least once. The most frequent words are shown in larger fonts than less frequent words. Dates ranged from 6 February 2012 to 16 August 2012. UK national daily newspapers included: The Metro, The Times, The Daily Mail, The Mirror, The Sun, The Daily Express, The Guardian, The Telegraph and The Independent. 90. Macmillan Cancer Support/YouGov online survey of 1,740 UK adults living with cancer. Fieldwork conducted 26 July–9 August 2010. Survey results unweighted. 91. National Cancer Survivorship Initiative. Assessment and care planning. http://www.ncsi.org.uk/whatwe-are-doing/assessment-care-planning/ (Accessed September 2014) 92. The Cochrane Collaboration. Screening programmes for the early detection and prevention of oral cancer. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004150.pub4/abstract (Accessed September 2014) 93. Macmillan Cancer Support. Radiotherapy for head and neck cancer. http://www.macmillan.org.uk/ Cancerinformation/Cancertypes/Headneck/Treatingheadneckcancers/Radiotherapy.aspx (Accessed September 2014) 94. 64 Macmillan-NCIN work plan. Segmenting the cancer survivor population. www.ncin.org.uk/ view?rid=2493 (Accessed September 2014). The analysis is based on patients diagnosed with cancer between 1991 and 2010. To ensure that patients, rather than tumours, were counted, only the first diagnosed tumour (excluding non-melanoma skin cancer) in each patient was included in the analysis. Anyone who died or left the country in the period, or were aged over 99 at diagnosis or over 105 at the end of 2010, were removed from the study. The numbers in this analysis may not agree with those published elsewhere due to slight differences in methodologies, periods of observation, datasets, and rounding. Contents appendix a jargon buster Not sure of some of the terms used in this document? Our handy jargon buster should help you out. (i) Health data terms Incidence: When we talk about ‘cancer incidence’ we mean the number of people who are newly diagnosed with cancer within a given time-frame, usually one calendar year. The data can be ‘cut’ in a number of ways, for example by cancer type (breast, prostate, lung, colorectal, etc) or by gender, age, etc. The latest data we have is for 2012, and we know that over 300,000 people are newly diagnosed with cancer in the UK every year. Incidence can sometimes be given as a rate (per head of population). Mortality: When we talk about ‘cancer mortality’ mean the number of people who die from cancer within a given time-frame, usually one calendar year. The latest data we have is for 2012, and we know that over 150,000 people die from cancer in the UK every year. Mortality can sometimes be given as a rate (per head of population). Prevalence: When we talk about ‘cancer prevalence’ we mean the number of people who are still alive and who have had, within a defined period, a cancer diagnosis. It equates to the number of people living with cancer. Any prevalence figure is for a snapshot (set point in time). The latest snapshot we have was made in 2015, and we estimate that there are 2.5 million people living with cancer in the UK. Some data are only available and presented for 20-year prevalence (i.e. anyone with a cancer diagnosis within a 20 year period). Prevalence can sometimes be given as a rate (per head of population). Cancer statistics often use one-year or five-year survival rates. Relative survival (the standardised measure used) is a means of accounting for background mortality and can be interpreted as the survival from cancer in the absence of other causes of death. Survival rates do not specify whether cancer survivors are still undergoing treatment after the time period in question or whether they are cancer-free (in remission). (ii) Other terms Co-morbidities: This means either the presence of one or more disorders (or diseases) in addition to a primary disease or disorder, or the effect of such additional disorders or diseases. Curative treatment: When we talk about curative treatment for someone with cancer, we talk about treatments intended to cure the cancer; this usually mean the removal of a cancerous tumour. It works best on localised cancers that haven’t yet spread to other parts of the body, and is often followed by radiotherapy and/or chemotherapy to make sure all cancerous cells have been removed. Palliative treatment: Palliative treatment is only used to ease pain, disability or other complications that usually come with advanced cancer. Palliative treatment may improve quality of life and mediumterm survival, but it is not a cure or anti-cancer treatment. However palliative treatment can be given in addition to curative treatment in order to help people cope with the physical and emotional issues that accompany a diagnosis of cancer. For further support, please contact [email protected] Survival: When we talk about ‘cancer survival’ we mean the percentage of people who survive a certain type of cancer for a specified amount of time. 65 Contents Appendix A – Jargon buster Understanding the numbers, needs and experiences of people affected by cancer Notes The rich picture on people with head and neck cancer Notes 66 Contents Understanding the numbers, needs and experiences of people affected by cancer Full suite of the Rich Pictures This document is one of the twenty in the full suite of Rich Pictures summarising the numbers, needs and experiences of people affected by cancer. See a full list below: Overarching Rich Picture The Rich Picture on people with cancer (MAC15069) The Rich Pictures on cancer types The Rich Picture on people living with cervical cancer The Rich Picture on people living with breast cancer The Rich Picture on people living with prostate cancer The Rich Picture on people living with lung cancer The Rich Picture on people living with cancer of the uterus The Rich Picture on people living with non-Hodgkin lymphoma The Rich Picture on people living with rarer cancers The Rich Picture on people living with malignant melanoma The Rich Picture on people living with head & neck cancer The Rich Picture on people living with colorectal cancer The Rich Picture on people living with bladder cancer (MAC13846_11_14) (MAC13838_11_14) (MAC13839_11_14) (MAC13848_11_14) (MAC13844_11_14) (MAC13843_11_14) (MAC13847_11_14) (MAC13841_11_14) (MAC13845_11_14) (MAC13840_11_14) (MAC13842_11_14) The Rich Pictures on age groups The Rich Picture on people of working age with cancer The Rich Picture on children with cancer The Rich Picture on older people with cancer The Rich Pictureon teenagers and young adults with cancer (MAC13732_14) (MAC14660_14) (MAC13668_11_14) (MAC14661_14) Other Rich Pictures The Rich Picture on people at end of life The Rich Picture on carers of people with cancer The Rich Picture on people with cancer from BME groups The Emerging Picture on LGBT people with cancer (MAC13841_14) (MAC13731_10_14) (MAC14662_14) (MAC14663_14) All these titles are available in hard-copy by calling our Macmillan Support Line free on 0808 808 00 00 (Monday to Friday, 9am–8pm), or by ordering online at www.be.macmillan.org.uk. A wealth of other resources are also available, all produced by Macmillan Cancer Support and available free of charge. 67 Contents When you have cancer, you don’t just worry about what will happen to your body, you worry about what will happen to your life. How to talk to those close to you. What to do about work. How you’ll cope with the extra costs. At Macmillan, we know how a cancer diagnosis can affect everything. So when you need someone to turn to, we’re here, because no one should face cancer alone. We can help you find answers to questions about your treatment and its effects. We can advise on work and benefits, and we’re always here for emotional support when things get tough. Right from the moment you’re diagnosed, through your treatment and beyond, we’re a constant source of support to help you feel more in control of your life. We are millions of supporters, professionals, volunteers, campaigners and people affected by cancer. Together we make sure there’s always someone here for you, to give you the support, energy and inspiration you need to help you feel more like you. We are all Macmillan. For support, information or if you just want to chat, call us free on 0808 808 00 00 (Monday to Friday, 9am–8pm) or visit macmillan.org.uk Code: MAC13845_11_14 ©Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Contents