cancer • campaigning • group white paper Beating Bowel Cancer • Bowel Cancer UK • Brain Tumour UK • Breakthrough Breast Cancer Breast Cancer Campaign • Breast Cancer Care • British Lung Foundation • Cancer Research UK Cancer Black Care • Cancerbackup • CLIC Sargent • James Whale Fund for Kidney Cancer Jo’s Trust Fighting Cervical Cancer • Kidney Cancer UK • Leukaemia Care • Leukaemia Research Orchid • Lymphoedema Support Network • Lymphoma Association • Macmillan Cancer Support Maggie’s Centres • Marie Curie Cancer Care • Myeloma UK • Ovacome • Pancreatic Cancer UK Roy Castle Lung Cancer Foundation • Samantha Dickson Brain Tumour Trust • Sue Ryder Care Teenage Cancer Trust • Tenovus • The Mouth Cancer Foundation • The Prostate Cancer Charity United Brain Tumour Campaign • World Cancer Research Fund getting it right for people with cancer: what the voluntary sector wants from the cancer reform strategy 1 Contents Getting it right for people with cancer: 2 What the voluntary sector wants from the Cancer Reform Strategy Executive Summary 4 Introduction 6 Key principles for Cancer Policy Chapter 1: Prevention 10 Raising awareness and changing behaviour Chapter 2: Involvement of and choice for people affected by cancer 12 Putting individuals in control 12 Healthcare professional staff 16 Services 18 Chapter 3: Research 21 Investing for the future Conclusion 24 Getting it right for people with cancer cancer • campaigning • group white paper About the Cancer Campaigning Group The Cancer Campaigning Group (CCG) was founded in 2002 and is a coalition of leading national cancer-related charities. The aim of the CCG is to campaign for the continued prioritisation of the prevention, treatment and research of cancers. The CCG is focused on communicating these messages to Government and Parliamentarians. The CCG’s campaigning strategy and activities are developed by a steering group of representatives from five member charities – Cancer Research UK, British Lung Foundation, Cancerbackup, Breast Cancer Campaign and Macmillan Cancer Support. Edelman Public Affairs provides the secretariat, including communications advice and support. Health policy expert Edmund Waterhouse was commissioned in November 2005 as the independent author of this document. The coalition and its work is supported by five pharmaceutical sponsors – AstraZeneca, GlaxoSmithKline, Pfizer, Roche and sanofi-aventis. However, these supporting organisations have no direct input into the editorial content of any CCG materials. The Cancer Campaigning Group ensures that all its relationships with supporter organisations comply with the ABPI Code of Conduct governing the relationship between patient groups and pharmaceutical companies. For more information about the CCG please see www.cancercampaigninggroup.org.uk or contact Pamela Dow on 020 7344 1506.Hilary Whittaker Michael Wickham Jenny Baker Beating Bowel Cancer Bowel Cancer UK Brain Tumour UK Jeremy Hughes Pamela Goldberg Christine Fogg Breakthrough Breast Cancer Breast Cancer Campaign Breast Cancer Care Dame Helena Shovelton Alex Markham Frank Chinegwundoh British Lung Foundation Cancer Research UK Cancer Black Care Joanne Rule Carole Easton Nick Turkentine Cancerbackup CLIC Sargent James Whale Fund for Kidney Cancer Getting it right for people with cancer: What the voluntary sector wants from the Cancer Reform Strategy Getting it right for people with cancer: what the voluntary sector wants from the Cancer Reform Strategy outlines the vision of a coalition of national cancer-related charities, working together to improve and save lives. It sets out ambitious yet realistic proposals for how to significantly reduce mortality rates and current inequities in cancer care, and create a service designed around the person throughout their cancer journey. The Cancer Campaigning Group believes that if these recommendations are implemented, more cancers will be prevented, and every person affected by cancer will receive high quality care, treatment, information and support. They will be equal partners in decisions about their treatment and care, from screening and diagnosis to end-of-life choices. Moreover, considerable improvements in outcomes could be achieved if resources are targeted and distributed more efficiently, using the tools available within the reformed NHS. The voluntary sector played a large and vital role in the development and delivery of the NHS Cancer Plan, and looks forward to using our expertise to make a positive contribution to the Cancer Reform Strategy, to make a difference for everyone affected by cancer. Signatures of Cancer Campaigning Group Chief Executives: 2 3 Pamela Morton Joan Thompson Tony Gavin Jo’s Trust Fighting Kidney Cancer UK Leukaemia Care Cervical Cancer Cathy Gilman Anita Wallace Melanie Burfitt Leukaemia Research Lymphoedema Support Lymphoma Association Network Judy Beard Laura Lee Tom Hughes-Hallet Macmillan Cancer Support Maggie’s Centres Marie Curie Cancer Care Eric Low Angus Somerville Louise Bayne Myeloma UK Orchid Ovacome Sue Ballard Mike Unger Angela Dickson Pancreatic Cancer UK Roy Castle Lung Samantha Dickson Brain Cancer Foundation TumourTrust Stephen Collinson Simon Davies Peter Searle Sue Ryder Care Teenage Cancer Trust Tenovus Vinod K Joshi John Neate Sue Farrington Smith The Mouth Cancer Foundation The Prostate Cancer Charity United Brain Tumour Campaign Kathryn Allen World Cancer Research FundExecutive Summary Background 1 This White Paper represents the culmination of a consultation exercise undertaken by the Cancer Campaigning Group (a consortium of national cancer-related charities). 2 In August 2006, following a series of seminars on cancer policy, the Group published a “Green Paper” consultation document, aimed at making the case for a second NHS Cancer Plan. By the end of November over 50 responses had been received. The views expressed in those responses are summarised in this White Paper. 3 On 30 November the Government announced its intention to produce a “Cancer Reform Strategy”. The Group welcomes that initiative, and hopes the views set out in this document will inform the Strategy. 4 The Green Paper put forward a number of founding principles on which a new cancer plan should be built, and proposed four pillars for action. The principles, slightly modified in the light of the comments received, are set out later in this document.The four pillars – prevention, treatment and care, information and support, research – are also carried forward with minor modification, chiefly to emphasise the focus on people. Cancer prevention 5 Wherever possible action should be taken to prevent cancer from developing, for example by addressing those lifestyle factors where research shows a link with cancer – in particular smoking, obesity, lack of exercise and alcohol. The Government has set out a range of measures to tackle these areas, and we consider these should be implemented as a matter of priority. 6 Because outcomes are usually strongly associated with early presentation, it is crucial that steps are taken to promote people’s awareness of the symptoms of cancer and when they occur to encourage them to consult a doctor or other healthcare professional as soon as possible. 7 Effective screening programmes are now well established for certain cancers.Where justified by research, these programmes should be extended, and new programmes introduced for different cancers. People with cancer 8 People with cancer need to have choice over and control of their treatment and care. They are individuals who have cancer and should be treated as such, not impersonally as patients with tumours. The views, experiences and levels of satisfaction of people with cancer, and of those around them, need to shape the services and the support which they receive. Supportive care also needs to be made widely available, in line with published guidance. The carers of people with cancer should also be given more information, help and support.We wish to see NICE’s guidance in respect of carers implemented in full across the country. 9 Children and young people with cancer need to be cared for and treated in environments which are appropriate to their age. 10 Different groups within society can experience difficulty in accessing health services, including cancer services. Sometimes the reasons are cultural, but often it is a lack of accessible information and support.Wherever such inequalities occur we wish to see action taken to narrow the gap – in cancer as for other areas of health. 11 Awareness and take-up of financial benefits, for people with cancer needs to be improved. 12 The quality and availability of information on cancer needs to be improved. As a minimum, information needs to be in different languages and in a form which is easy to understand. People who need it should be given culturally sensitive support and advice to act upon the information they are given, and to access services, as appropriate. Action also needs to be taken to overcome the cultural barriers which inhibit access to advice and to services. Healthcare professionals 13 Healthcare professionals should be given training and encouragement to help put people with cancer in control of their care and treatment. While we welcome the increase in the number of healthcare professionals entering cancer since the Cancer Plan was published, there are still shortages in certain areas such as nurse specialists and in some areas of radiotherapy.We wish to see the needs of cancer reflected as a priority in the development of the NHS’s widerworkforce strategy. Services 14 Further steps need to be taken to ensure that all people with cancer experience the service quality of the best. NICE guidance should be implemented swiftly and uniformly across the country, and new research which can improve outcomes needs to be fast-tracked into clinical practice. Wherever possible, waiting times for diagnosis and treatment should be shortened further. New opportunities for partnership between the statutory and voluntary sectors, for example in relation to the provision of palliative care, need to be taken.Where an individual’s care and treatment spans a number of different services and people, the transition should be seamless. 15 Tackling cancer requires a co-ordinated approach across Government: local authorities, health and social services, the voluntary sector and people with cancer need to develop more effective joint working. 16 Plans should be drawn up for further investment to improve the quality of the physical environment within which cancer care is given; and to provide for new and improved cancer equipment. Research 17 As the funding system for health research changes, it is imperative that cancer research not only remains a priority but is strengthened and improved, especially in relation to new drugs and therapies, and cancer genetics. 18 We are particularly keen to see more people with cancer participate in clinical trials; and to see more investment in research into the social welfare of people living with cancer, and those cancers which hitherto have received little research attention. 19 People with cancer in England would benefit from continued investment in the research and development infrastructure, to encourage innovation and progress. The role of Government 20 The Government is engaged in fundamental reform of the NHS. As these changes are implemented it is essential that the delivery of high quality services for people with cancer is maintained. It must be recognised that cancer is a cross-departmental challenge, and joineduu solutions need to be provided. 21 The Government has stated that there is little scope for additional investment in cancer or indeed other areas of healthcare. Accordingly we have indicated where improvements can be made with little or no extra resources in the short term.Within the substantial public funds invested in cancer care and treatment, we consider that existing resources can be redeployed more effectively, for example by shifting more care and treatment from acute services into the community and by coordinating care more effectively; and that these savings should be used to meet the areas of additional investment which we have identified in this document. Such investments decisions should however be set in the context of a longer-term strategy for investment in cancer. Conclusion 22 We are pleased that the Government has made a commitment to produce a Cancer Reform Strategy.We wish to help in its development in every way we can: through further partnership working between Government, the private sector and the voluntary sector, including through the Cancer Networks. 23 In the future, the Cancer Campaigning Group will continue to represent the voice of the voluntary sector in developing and implementing cancer policy reforms, with the aim of meeting the then Secretary of State Alan Milburn’s ambitious aim of making cancer care in England “the best in Europe”. The group envisages reviewing the Government’s progress in implementing the Strategy and making the results available to everyone with a stake in improving outcomes for people with cancer. 5 4needed, and how these should most appropriately be brought together in a unified and accessible form • Cancer Networks should have appropriate planning arrangements in place locally, including workforce and education and training strategies, to feed into local development plans • Strategic Health Authorities should ensure that Cancer Networks have the resources required for effective and sustainable performance • All networks should have – and should implement – agreed arrangements in place for monitoring progress against the targets for which they are responsible. Reform of the NHS 15 The National Audit Office noted the extent to which the environment of the NHS had changed, and was still changing, since the Cancer Plan was published. NHS Foundation Trusts were introduced in 2002; independent sector treatment centres shortly thereafter. Last year’s White Paper Our Health, Our Care, Our Say signalled a shift towards greater care and treatment in community-based facilities. 16 In addition, the Department of Health has issued a number of policy documents which herald major shifts in the way services are managed and delivered. People now have more choice over where they are treated, and can opt for an independent sector facility if they wish. Practice-based commissioning places the responsibility for deciding what is best for the person with cancer, and commissioning these services from the appropriate provider of health care services, within local primary care practices; payment by results introduced the concept of a tariff for specified courses of diagnosis and treatment, calculated by reference to national averages. 17 These amount to substantial reform of the way in which health services are delivered to patients, and the Cancer Plan needs to be reviewed and revised to reflect these fundamental changes. Context Key statistics about cancer 6 In England, 227,725 persons were diagnosed with cancer in 2003. Of that number, 112,867 were males, 114,858 were females. Four types – breast, lung, colorectal and prostate – accounted for over half of all new cases of cancer. 7 At any one time it is estimated that 2% of the population – equivalent to 1.2 million people in the UK – will have had a diagnosis of cancer, including approximately 172,000 with a breast cancer diagnosis, 77,000 colorectal cancer, 32,000 lung cancer, and 31,000 melanoma. 8 One in three of the population will develop cancer during their lifetimes, and one in four will die from the disease. The NHS Cancer Plan 9 The NHS Cancer Plan published in 2000 set out a 10-year programme of fundamental reform of cancer services in England. It included specific proposals for implementing the Government’s pledges (contained in the NHS Plan published a few months previously) of more staff and more equipment for cancer. It also proposed that Cancer Networks should be the vehicles for determining the delivery of cancer care by bringing together the organisations and healthcare professionals who plan and deliver cancer care and treatment for people with cancer. 10 The specific aims of the Cancer Plan were to: • Save more lives • Ensure that people with cancer get the right professional support and care as well as the best treatment • Tackle the health inequalites which mean that unskilled workers are twice as likely to die from cancer as professionals • Build for the future through investment in the cancer workforce, through strong research and through preparation for the genetics revolution, so that the NHS never falls behind in cancer again. Introduction Key principles for Cancer Policy 1 The Cancer Campaigning Group, founded in 2002, is a consortium of national cancer-related charities. The aim of the Group is to campaign for the continued prioritisation of the prevention, treatment and research of cancers. The Group is focused on communicating these messages to Government and Parliamentarians. 2 In November 2005 the Group launched a campaign calling for a second NHS Cancer Plan, and in early 2006 hosted a series of Westminster seminars on cancer policy. The outcomes and recommendations from the series, along with expertise from across the whole of the Group’s membership, informed a “Green Paper” consultation project, published in August 2006. 3 More than 50 written responses to the Green Paper were received. A list of respondents is available at www.cancercampaigninggroup.org.uk. In addition, comments were made through a number of meetings held to discuss the proposals contained in the Green Paper. This “White Paper” reflects the outcome of the entire consultation process. 4 On the 30th November 2006 the Government announced its intention to develop a Cancer Reform Strategy. The Group welcomes this initiative. The timing of the Green/White Paper project means that the Group is well placed to offer advice to the National Cancer Director, Professor Mike Richards, on a range of topics and priorities for inclusion in the Cancer Reform Strategy. 5 In particular this document aims to support Professor Mike Richards in drawing up his Cancer Reform Strategy by: • identifying and promoting those improvements which lie outside the remit of the Department of Health • articulating a long-term vision of cancer service provision • emphasising the importance of continued partnership working • setting out the priorities for immediate action. 11 In addition, in the introduction to the Cancer Plan, Alan Milburn (then Secretary of State for Health) said: "We have ambitious aims, to raise the level of our cancer services to the best in Europe". 12 The Cancer Plan contains a large number of specific targets and commitments. In the six years since publication it has proved largely successful. Mortality rates are falling and survival rates are improving (though with variations between different cancer sites). More generally: • Smoking trends are declining • The breast cancer screening programme has been extended • Access to cancer diagnosis and treatment has been speeded up • Specialist cancer teams have been established • Variations in access to cancer drugs have been reduced • Specialist palliative care services have been enhanced • More cancer specialists have been put in place • Diagnostic and treatment facilities for cancer have been modernised • The pace of research has been increased. 13 Over the same period Cancer Networks have achieved a great deal, in particular they have: • planned for the introduction of new cancer drugs across the network • developed plans for funding specialist palliative care • drawn up action plans for the development of cancer services in line with guidance from the National Institute for Health and Clinical Excellence • Facilitated the development of multidiscipplinar teams. 14 In 2005 the National Audit Office published The NHS Cancer Plan: a Progress Report. It considered the extent of progress against each of the targets and commitments in the Cancer Plan. Overall its assessment was positive (see above). It also made a number of recommendations, including: • The National Cancer Director should consider what changes to the cancer strategy are now 6 7Introduction Key principles for Cancer Policy Wider drivers of change 18 What is more, the demography of cancer is also changing. In future we can expect to see more cases of cancer; new methods of diagnosis and treatment are evolving, including those reflecting the genetics revolution; new drugs and new equipment are being developed, and new approaches to the management of cancer care and treatment. The findings from existing research programmes are being translated swiftly into clinical practice. 19 The expectations of people with cancer, and those close to them, are rising; they will rightly demand better services, which put them in control and at the centre of decisions about their care and treatment. Some healthcare professionals will need training and support to meet the expectations of the individual. 20 New reports have been – and are being – published which affect cancer. Some will be aimed specifically at cancer services, for example the King’s Fund report Future Trends and Policy Challenges for Cancer Services in England. Others, such as the Cooksey Review of Research Funding, have a broader span but will nonetheless affect the funding of research into cancer. And groups such as the All Party Parliamentary Group on Cancer will continue to help to influence policy on cancer, for example through their Britain Against Cancer conference. Cancer as a crossgoverrnmen challenge 21 Within Government, cancer tends to be seen as the responsibility of the Department of Health and its counterparts within the devolved administrations for Scotland,Wales and Northern Ireland. Yet it does in fact touch several other Departments, including: • The Office for Disability Issues, because people with cancer are included within the statutory definition of disability • The Department for Work and Pensions, because of the entitlements and eligibility to funding of cancer care and treatment, and the impact of the disease on national productivity • The Department for Trade and Industry, because of the innovation and international competitiveness of British-based healthcare industrial companies. The key principles for cancer policy 22 The Green Paper suggested that a new cancer plan should be built on a number of founding principles, and sought comments on them. 23 Following review, members of the Cancer Campaigning Group agreed on seven fundamental principles (opposite), upon which future cancer policy should be built and judged: 24 These principles are reflected in this White Paper. Pillars for Action 25 The Cancer Campaigning Group recommends that a new cancer plan should be based around a series of ‘pillars’, including prevention, treatment and care, information and support, and research. Improving the experience of the person with cancer, and their family and carers, should be at the centre of each of these policy areas. 26 In consultation the importance of improving outcomes was a strong theme.While obviously the best outcome for someone with cancer is a complete cure with no lasting side-effects, for many this is unrealistic. The goal of those suffering from lung cancer, for example, is further improvements in survival rates; for those with pancreatic cancer it is early detection and effective treatments; for others, it is reduced disability following treatment. In short, what constitutes an improved outcome differs according to the type of cancer. 27 Not surprisingly, therefore, there was strong support for action aimed at preventing cancer, and for raising awareness of symptoms and promoting early detection. This was one of the four pillars for action identified in the Green Paper. 8 9 Poor Survival Cancers: Diagnosis and Treatment Pancreatic cancer is the fifth most common cause of cancer death in Europe and USA, and the 7000 cases which present each year in the UK have a median survival of four to six months and a five year survival of less than 3%. Less than 10% of patients have their disease caught early enough for it to be removed surgically, though surgery offers the best chance of cure. Chemotherapy is offered to these – and fit inoperable – patients with a view to improving quality and quantity of life, but improvements in survival are urgently needed. A second cancer strategy should enable those cancers where progress has been slower to ‘catch up’ to those where the most significant improvements have been delivered. More research and improvements in standards, diagnosis, surgical techniques, concentration of surgery in high volume expert regional centres, availability and trials of more effective or new treatments, and greater availability of specialist nurses would improve the lives and survival chances of people affected by pancreatic cancer. Key Principles 1 Continued national leadership is essential to tackle a disease that affects us all 2 Greater efforts should be made to prevent cancer and to raise awareness of the disease in order to save and improve more lives and make best use of resources 3 Every person affected by cancer deserves high quality care, treatment, information and support, regardless of location, gender, ethnicity, age, financial status, literacy, religion, sexual orientation, disability or type of cancer 4 People with cancer and their carers should have the opportunity to be equal partners in decisions about their treatment and care 5 Cancer services should treat the person, not just the tumour, throughout the cancer journey 6 Policies should promote and support all aspects of cancer research, as the foundation for high quality cancer services 7 Resources should be allocated to ensure those cancers where progress has been slower can catch up with those where the most significant improvements have been delivered. benefits of people with cancer and their carers • The Department for Communities and Local Government, in respect of the role of local authorities in the provision of care and other local services, and the role of the Women and Equality Unit (WEU) • The Treasury, because of the impact of cancer on the national economy, both through thePriorities for prevention and public health 36 Through such initiatives people have become increasingly aware of the steps they can take to reduce the risk of cancer, but there is room for further improvement, and for long-term, sustained investment in disease prevention – a case powerfully made by Derek Wanless in his reports for Government on the future funding of health. The momentum behind the initiatives described above needs to be increased – and the range of activity extended. 37 Accordingly we recommend: • Continued support for measures to raise awareness about the links between lifestyle factors and cancer, and above all to support people in switching to healthier lifestyle choices, especially quitting smoking. In particular we wish to see more accessible and better information targeted at specific groups and cultures, and in different languages; better health education in schools; and well directed media campaigns • Campaigns to raise awareness and early recognition of symptoms of cancer. Primary care professional staff have a crucial role to play here, and this is addressed below • Action to reduce inequalities in cancer, for example through improved data collection and analysis (there is an important role here for the cancer registries), and programmes targeted at improving health literacy among those groups where there is the greatest need • Concerted, integrated, action across Government to tackle inequalities of all kinds and to promote healthier lifestyles and behaviours Chapter 1: Prevention Raising awareness and changing behaviour lntroduction 28 Action to improve prevention is imperative. Half of all cancers can be prevented by changes in lifestyle.While the link between smoking and cancer is now well understood, other risk factors such as obesity and alcohol misuse are less widely known. Inequalities 29 Furthermore, evidence shows that public awareness of some of the common symptoms is low, yet we know that early presentation and detection greatly increase an individual’s chances of survival. There are also clear inequalities (whether by socio-economic status, ethnicity, gender, geography, age, religion, sexual orientation, disability, or by cancer type) in cancer incidence and cancer prevention as in other areas of health; to date measures to narrow this inequalities gap have had limited success.We set out our views on tackling inequalities later in this document. Tackling smoking 30 Since publication of the first Cancer Plan much progress has been made in promoting good health, for example in tackling smoking. The forthcoming ban on smoking in enclosed public spaces introduced by the recent Health Act will bring significant benefits. Healthy eating and exercise 31 Similarly the White Paper Choosing Health, published in 2004, and the associated delivery plan published a year later, set out a number of steps aimed at promoting healthier diets and greater involvement in exercise. Understanding of the links between these lifestyle factors and cancer will be enhanced by the work of the National Prevention Research Initiative, backed by the National Cancer Research Institute. Screening 32 Significant improvements have also been made in cancer screening programmes, notably the extension of the breast cancer screening programme, and the introduction from July 2006 of the national bowel cancer screening programme in England. Skin cancer prevention 33 The national skin cancer prevention campaign, SunSmart, has been increasingly effective in preventing skin cancer and the early detection of symptoms. Early awareness 34 Equally important is improving people’s awareness of symptoms of cancer in their early stage. Early awareness of symptoms of cancer (where they exist: many cancers have no symptoms) would be of particular help to those with rare and poor survival cancers. A standard tool to measure public awareness for all cancers would be of great benefit. Cancer networks and prevention 35 Cancer Networks have already shown the value of taking a co-ordinated approach to the delivery of cancer services. By ensuring co-ordination between PCTs (in particular the Directors of Public Health), local authorities and the voluntary sector – as well as the Department of Health itself – they can deliver better cancer prevention and health promotion at local level. In particular they could support local implementation of such policies as “Smokefree NHS” and contribute to the development of the NHS “life checks” and “health MOTs”. 11 10 • In respect of cancer screening: a. measures are needed to improve take-up especially among black and minority ethnic groups. Better information, expressed in culturally sensitive ways and in different languages, should help to improve access b. wherever possible, existing screening programmes should adopt new technology to improve clinical effectiveness and reduce the invasiveness or discomfort of the experience for those being screened c. with an increasingly ageing population, capacity needs to be enhanced to ensure adequate screening services are available • Where research shows it would be effective, new screening programmes for additional types of cancer should be introduced • More research to establish evidence of effectiveness in: a. preventing cancer b. identifying as early as possible those symptoms which are strongly predictive of the disease c. determining when and how to intervene where genetic predisposition is indicated.sought regularly and systematically about the range, quality and delivery of the services they receive, and the results of such surveys should be published. As part of their performance assessment, providers of services should be held to account for implementing such changes as are indicated by this feedback. The willingness to respond to the views of those who use the service should influence the decisions of commissioners. Choice 46 Similarly, people with cancer should be given the means of exercising choice over their care and treatment. Choice requires information to be provided about the available options (including those which the individual wants or needs) and their implications; and support to enable each individual to make an informed decision -at the right time, and in a way which genuinely has a bearing on the services received. For example, many people with cancer who have become expert in self-management of their disease still need support to help them help themselves. Information 47 This means that people with cancer, and those around them, must have ready access to high quality information about their illness and the options for treatment which are open to them. Yet two reports in 2005 showed that this objective is far from being realised. The NAO Tackling Cancer report noted that four out of ten people with cancer are not receiving any information about their cancer; The Cancer Information Maze, a report by the ABPI and Cancerbackup, showed that nearly two thirds of people do not understand their diagnosis. 48 Rectifying this state of affairs must be an immediate priority. And the means of doing so is set out in the NHS Information Strategy, published in 2004. It proposes the introduction of information prescriptions (endorsed in Our Health, Our Care, Our Say), community-based navigators, information accreditation, training in communications for health professionals, and power questions. These initiatives need to be implemented forthwith. For people with cancer, the information prescription should contain information about the disease, its treatment and the support available (psychological, financial, social, practical); it should be available in a wide range of languages and be easy to use. The quality of services 49 Information about treatment can be found in the guidance produced by NICE. NICE publishes guidance in three main areas of health: • public health – guidance on the promotion of good health and the prevention of ill health for those working in the NHS, local authorities and the wider public and voluntary sector • health technologies – guidance on the use of new and existing medicines, treatments and procedures within the NHS • clinical practice -guidance on the appropriate treatment and care of people with specific diseases and conditions within the NHS. 50 NICE has a crucial role to play in ensuring access to cancer treatments for all. NICE guidance provides an excellent framework for developing high quality, responsive services. It is clear however that the extent to which NICE guidance is implemented is highly variable, including importantly in the availability and uptake of approved cancer drugs, and in the application of Improving Outcomes Guidance. There appears at present to be no effective mechanism for influencing the extent to which NICE guidance is implemented.Without such a mechanism the treatment delivered to people with cancer will continue to be subject to geographical and other inequalities. This is not acceptable. Accordingly we recommend that such a mechanism be developed and implemented as a priority. The implementation of NICE guidance could form part of a cancerspeccifi health check (see para 56). 13 Chapter 2: Involvement of and choice for people affected by cancer Putting individuals in control Introduction 38 Many of those commenting on the Green Paper emphasised the importance of recognising that people with cancer are individuals, with their own wishes and views; they are the ones most directly touched by the disease and should therefore control what happens to them. Where individuals make the final decision about their treatment and manage their own health care (whether in partnership with or based on the advice of health professional staff), there are often higher rates of satisfaction and better outcomes, as well as more appropriate and more cost-effective use of services. 39 Some people with cancer may need encouragement to raise their expectations of services, alongside information and support to voice their preferences, decisions and concerns. This will be particularly important in addressing the inequalities gap. 40 More should also be done to shape services around individuals. Many people with cancer find that they are referred from one hospital department to another, and from health to social care, with scant regard for the impact on them of this impersonal discontinuity of service. Medical records are often transferred at a slower pace, so the individual’s history has to be retold at each stage. This state of affairs needs to be reversed, so that services are organised for the benefit of the person with cancer, not the providers. In some areas a specialist link professional – often a nurse – is appointed to act as the individual’s point of contact throughout the cancer pathway; we consider that all individuals, wherever they live, should have access to such a link person. Children and young people 41 Children and young people with cancer are a special group whose requirements are different from those of adults. For example, all too often the symptoms of cancer in teenagers and young adults are not identified early enough, and are attributed to growing pains, sports injuries or other illnesses. 42 Guidance produced in 2005 by NICE states that 70% of young people do not receive treatment or support which recognises their specific physical or emotional needs. Yet the chances of recovery can improve by 15% where a young person is treated in facilities appropriate for his or her age. The seven existing Teenage Cancer Units in England are not enough: at least nine need to be established in order to enable all teenagers and young people to be treated in dedicated facilities. 43 Children and young people need to be cared for and treated in environments which are appropriate to their age. Decisions about their treatment should recognise that they are still growing; and that any negative side-effects (such as permanent disfigurement or impairment of function) may affect them disproportionately and persist throughout their lives. Families, friends and carers 44 The families, friends and carers of people with cancer are also affected by the disease, and greater account needs to be taken of the impact on them. The services which carers provide are all too often given a low priority – in stark contrast to the high value placed upon them by people with cancer.We think that all Cancer Networks should produce information setting out how carers are identified and what their rights are, along with advice on the financial support that may be available to them.We welcome the recommendations about carers which are contained in the Supportive and Palliative Care Guidance produced by NICE and wish to see them implemented in full across the country. And we welcome the Government’s proposal – in its White Paper Our Health, Our Care, Our Say – that each PCT should appoint a carers’ lead. Consulting people with cancer 45 In keeping with the principles set out in Our Health, Our Care, Our Say we recommend that the views of people with cancer should be 1259 Financial support is available for some of these costs. But in the National Audit Office survey, over three quarters of people with cancer said they were not given information about financial support. 60 People with cancer and those caring for them should not be disadvantaged financially simply because of their need for adequate and effective care and treatment. Consequently we consider that people with cancer: • Should be given information about the availability of financial support in a form which is easy to access and to understand, and at appropriate stages throughout their cancer journey • Should be exempted from hospital parking charges. 61 In addition, more vulnerable people with cancer – especially those who are terminally ill – should be given advice and support to help them take up benefit entitlements, including Disability Living Allowance and Attendance Allowance. 62 The current Department of Health review of the Hospital Travel Costs Scheme presents an opportunity to ensure people with cancer have fair access to it. Similarly, the Department’s internal review of prescription charging policy must ensure a fairer outcomes for people with cancer. Palliative and end of life care 63 Research by Marie Curie Cancer Care and YouGov has shown that most people would want to be cared for at home (64%) or in a hospice (23%) if they were terminally ill. Yet about half of people with cancer die in hospital, with fewer than a quarter (22%) achieving their wish to die at home. 64 There are many reasons for this. For example, a lack of 24 hour support in the community; and the need for better systems to record the choices of people with cancer. 65 In addition there are several other steps that would improve end-of-life care for people with cancer: • Provision of more information (see above) • The establishment of a continuing national training programme, supported by the roll out of the Gold Standards Framework, and Marie Curie’s Liverpool Care Pathway • Inclusion in the assessment of NHS bodies’ performance of the quality of care of the dying • For terminally ill people, prioritisation of the assessment of need and delivery of specialist equipment (through better co-ordination of health and social care) • Improved procedures for discharge from acute settings • Better support for carers through access to advice and bereavement services at all times. 66 Voluntary organisations provide the vast majority of specialist palliative care services: 80% of inpatient care, 70% of day care and 60% of home care – a subsidy to the Government worth £200 million a year. Under the terms of the Compact Code of Good Practice on Funding and Procurement, published in 2006 by the Department of Health and the Home Office, the Government made a commitment to full cost recovery in relation to services provided by the voluntary sector. If this is not done, the provision of these services will erode – at a time when demand is increasing.Accordingly, steps need to be taken as a matter of urgency to put in place full cost recovery in respect of these services. This could best be achieved through the extension of the existing tariff system, and long-term contractual arrangements. 67 We look forward to the publication of the Department of Health’s strategy for improving end-of-life care and hope to see the above suggestions incorporated into it. 15 Chapter 2: Involvement of and choice for people affected by cancer Putting individuals in control 51 NICE bases much of its guidance on quality and cost effectiveness.We are concerned that many new technologies are being turned down by NICE on the grounds of cost effectiveness, despite their positive impact on patients. Cost effectiveness decisions are based on the Quality Adjusted Life Year (QALY), a system of weighing up quantity and quality of life. This system does not give sufficient weight to quality of life, to drugs which extend life (but are not curative) and treatments for rarer cancers. Accordingly we believe that the system used for calculating the relative cost of a drug should be reassessed. 52 In addition, we think there is much to recommend the establishment of an ‘Innovations Fund’. Such a fund would ensure that resources were available to introduce – part way through the financial year – newly licensed cancer treatments and newly issued NICE guidance. It would also support the implementation of NICE guidance in the crucial first few months. 53 In general practice the Quality and Outcomes Framework provides financial rewards for GPs who improve the quality of the care they provide. As people live longer with cancer, the Framework will become increasingly important in determining the quality of cancer services provided in the community. This will in turn require significant extension of the Framework to include a wide range of key cancer indicators, and the quality of guidance around existing services. 54 In the meantime, there are several simple steps which GPs can take to improve the services they offer to people with cancer. In particular they should: • keep a register of “at risk” patients and those who have undergone treatment • undertake a review of an individual’s need for supportive care • provide more written information • direct people to appropriate advisers • monitor people who have undergone treatment in the past for any late effects. 55 We welcomed the targets set by Government for the time taken to be referred to a cancer specialist. Good progress has been made in achieving those targets. The Government’s 2005 manifesto commitment to go further in improving cancer waiting times is also very welcome.We wish to see that commitment turned into specific proposals, in relation to new targets for second and third line treatments (mainly radiotherapy, chemotherapy and surgery) and non-urgent referrals.We also favour targets for levels of satisfaction on the part of those using the service, and for tackling inequalities in all aspects of cancer care and treatment. 56 Other ways of improving the quality of services for people with cancer have been put forward. For example the All Party Parliamentary Group on Cancer has suggested that entitlements for people with cancer should be introduced, covering all aspects of care and treatment. Another possibility is the introduction of a Quality and Outcomes Framework for secondary care; a third is the introduction of a cancer-specific health check, perhaps to be carried out by the Healthcare Commission along the lines of its annual health check; a fourth is to revise the tariff to reward quality as well as activity. 57 These ideas, and others, need to be considered and evaluated in terms of their potential for driving up the quality of care and treatment for people with cancer. Financial support 58 People with cancer and their families face higher costs because of their needs for care and treatment. Such costs arise in a number of ways. For example, people with cancer (or those caring for them) may incur extra costs when travelling to receive treatment or advice; and hospitals now routinely charge for car parking. Extra costs may arise in respect of the supportive care required, in paying for prescription charges, or in obtaining drugs or treatment not available on the NHS, or simply through the added costs arising from disability caused by cancer treatment and its consequences. 14 Palliative Care and the Voluntary Sector The National Partnership Group for palliative care estimated last year that the state currently enjoys £200 million of ‘free’ care courtesy of the voluntary sector, while funding on average only 34% of its activities through PCTs and local commissioning.a standard tool to measure public awareness for all cancers should be developed and rolled out nationally. 73 There needs to be a systematic pooling of knowledge and experience – a single source of knowledge – which can be accessed from anywhere and at any time so that healthcare professionals can draw upon the latest available information about cancer.We understand that work is in hand to create such a resource, led by the NHS’s Director of Clinical Knowledge, Professor Sir Muir Gray.We support this initiative. Such a resource will minimise the risk of variability in clinical performance and therefore lead to better care and treatment. To help establish and maintain it will require healthcare professionals to record information as a matter of routine – for example during multidisciplinary team meetings. Multidisciplinary team working 74 People with cancer require a range of services to meet their personal, clinical and social needs. From their perspective it does not – and should not – matter who provides each element of service within that range. Their requirement is for continuity of care, regardless of organisational or professional boundaries. There is growing evidence that the co-ordination of care and treatment greatly improves the experience of people with cancer and reduces the sense of abandonment which many people feel once a period of active treatment comes to an end. Furthermore, as people with cancer live longer with the disease, it will become increasingly important to co-ordinate cancer care with the care and treatment of other diseases. 75 For that reason, the development of multidisciplinary specialist cancer teams has profoundly improved the effective treatment of people with cancer. Co-ordination of care requires members of the multidisciplinary team to work with professionals in primary care, social care, and in specialist and tertiary treatment teams, as well as alongside people from the voluntary sector and increasingly the private sector. Effective co-ordination of care, treatment, information and support should enable members of the multidisciplinary team to balance the competing demands on their time effectively, thus reducing duplication and therefore costs. 76 The shape of the current NHS workforce may itself be a barrier to the effective co-ordination of care. There would therefore be merit, building on Agenda for Change, in undertaking a national cancer workforce audit (covering the roles of non-clinical as well as clinical staff) to ensure that in future it is fit for purpose. 77 In particular, capacity within the radiotherapy workforce needs to be increased, and the skill mix within radiotherapy reviewed. For 15% of people with cancer, radiotherapy is the first treatment. For 40% of people with cancer radiotherapy forms part of their treatment – but there is evidence that the proportion should be higher, and anecdotal evidence that access to radiotherapy varies across the country. 17 Chapter 2: Involvement of and choice for people affected by cancer Healthcare professional staff Putting people in control 68 People with cancer often say that it is the tumour rather than the person that is being treated. They feel as if they are passive recipients, rather than being at the heart of decision-making about the care, treatment, information and support that they need. Yet they, with their families and carers, develop experience and a range of skills and expertise about cancer which should be properly recognised and taken fully into account when such decisions are made. 69 Some healthcare professionals already respect the right of the person with cancer to determine his or her care and treatment, but many do not. In addition to giving people the support to make informed choices, a change of culture is needed to enable healthcare professionals routinely to put people with cancer at the centre of decision-making. Healthcare professionals need appropriate information and dedicated training and support to make the shift, building on such courses as the communications skills programme for cancer doctors, nurses and other professional staff. Assessment of the performance of staff should include a measure of their responsiveness to the people they care for or treat. Knowledge management 70 Knowledge about the best care and treatment of people with cancer is constantly improving. There are many excellent healthcare professional staff in primary and secondary care who keep up to date with developments, who provide high quality treatment and who are alert to the possibility of cancer as a possible diagnosis even where the presenting symptoms are unclear. But there is a risk that knowledge and – importantly – awareness of cancer as a possible diagnosis are not evenly distributed across healthcare professionals. This risk is exacerbated by the erosion of “corporate memory”: in other words, experience is not effectively transferred from one situation to another because it is not recorded. 71 Cancers which affect only a relatively small number of people are caught in a selfperpettuatin cycle of low awareness and low resources, leading to late or no diagnosis. People with these cancers encounter difficulty in accessing appropriate and adequate information, care, treatment and support. Healthcare professionals may see people with rare cancers only very infrequently, making it harder for them to identify the cancer especially at early presentation. For these cancers the need for training and information is particularly important. 72 Health professionals also have a responsibility to recognise and detect all cancers at the earliest possible stage (while recognising that not all cancers can be detected), and this should be addressed as a priority in their education and training programmes. This would link with the proposal made earlier in this document that 16 Delays in Diagnosis Brain tumours are the commonest cause of death due to cancer in childhood, but UK children with brain tumours experience a symptom interval (time between first symptom and diagnosis) up to three times longer than children in North America and a number of European countries. The principal cause of delay in diagnosis is the failure (by primary and secondary care physicians) to include brain tumours in the differential diagnosis. Current NICE guidelines are limited by the endpoint (referral, not imaging), and being directed mainly at primary care. The Pathways Project funded by the Samantha Dickson Brain Tumour Trust has developed guidelines to aid rapid diagnosis of childhood brain tumours, and the next phase of the project is to publish and disseminate the guidelines, and evaluate their impact. Enhancing the Multi-Disciplinary Team Model The introduction of a Lung Investigation Day, held two days before each MDT meeting, has been central to improving the cancer service at Birmingham Heartlands Hospital. It enables the patient to see the chest physician, radiologist and nurse specialist and have all necessary tests on a single day. The day is co-ordinated by the specialist nurse, who also supports the patient and their family throughout the day. Test results can be obtained within a day and discussed by the MDT, leading to a swift diagnosis and treatment plan. Feedback from patients demonstrates that this new approach reduces anxiety, as they do not have to wait so long for a diagnosis and treatment. It is also more convenient, reducing the number of trips they need to make to the hospital for tests.Chapter 2: Involvement of and choice for people affected by cancer Services The physical environment for cancer care 78 Evidence shows that the nature of the settings in which people with cancer receive care and treatment has an impact on their sense of wellbeein and their responsiveness to treatment. While we welcome the improved quality and availability of cancer equipment heralded in the first Cancer Plan, further investment is now needed, for example to enhance radiotherapy capacity; and the same level of improvement has not been evident in the wider therapeutic environment. Consequently there are wide variations in the quality and standard of such facilities. 79 Such variability exacerbates geographical inequalities and may affect the individual’s response to care and treatment.We consider that the time is right for national standards to be set for the physical environment, and an audit undertaken to determine how far individual facilities fall short of those standards.We expect costed and timetabled plans to be drawn up, in consultation with people with cancer, for raising the quality of facilities up to the national standard, and for commissioners to consider the physical environment when commissioning services. Tackling inequalities 80 Inequalities in health are well documented, and affect people with cancer in just the same way as they affect others. They are expressed in terms of ethnicity, gender, disability, socioeconnomi group, geography, age, religion, sexual orientation, disability and type of cancer. Many of the measures aimed at narrowing the inequalities gap should therefore help people with cancer as much as they help others. 81 Inequalities – expressed through survival rates – also exist between different cancers. Survival rates currently vary widely: the five year relative survival for breast cancer has increased by an average of 6% every five years between 1986 and 1999 (five year survival is now nearly 80%). But there have been no real changes in five year survival rates for cancer of the oesophagus (latest figures show 8% five year survival). For cancers which are not preventable, such as many of the cancers which affect children, the priority must be to continue to invest in treatments to tackle these diseases. 82 For people with cancer, geographical inequalities are particularly marked, and there are considerable variations (some associated with affluence) in incidence and mortality between different SHAs. Mortality rates for breast cancer vary by 20% across Strategic Health Authorities in England: survival rates are lowest in the north and highest in the south. Similarly, for lung cancer there is a fourfold variation between the best and the worst survival rates, and disparities between urban and rural areas in terms of access to care, treatment and support. There are also huge regional variations in the availability of cancer drugs across England. 83 For black and minority ethnic communities, late presentation is a particular problem. To counter this, sustainable awareness and outreach services need to be developed. Cultural and religious differences, expressed for example through attitudes to hair loss, need to be taken into account. Above all, more information is needed about the incidence of cancer among black and minority ethnic groups and about mortality and survival rates. There is an important role here for the cancer registries. 84 We welcome the fact that people with cancer are included in the definition of disability from the point of diagnosis under the Disability Discrimination Act 2005. Research suggests however that people with other disabilities have poorer access to high quality services, poorer experiences and poorer outcomes, with higher rates of mortality. For example, people with learning disabilities are at higher risk from tumours of the oesophagus, stomach and gall bladder; but are less likely to be referred for treatment. The new Disability Equality Duty now in force, supported by appropriate training programmes for staff, should help to address these problems. 85 Men may be more reluctant than women to respond to health advice, whether in terms of cancer prevention or awareness of symptoms, and therefore may not seek early intervention. As a result, cancer mortality and survival rates for men are less good. This approach needs to be addressed, so that the lessons learnt and the successes achieved in tackling cancers more commonly associated with women can be replicated in tackling cancers which affect men. Commissioning services 86 Since publication of the first Cancer Plan in 2000, the NHS has been substantially reorganised, and further reform is currently being implemented. NHS Foundation Trusts have been established, the roles of PCTs have changed significantly and practice-based commissioning has been introduced, underpinned by a system of payment by results based on a tariff pricing mechanism, and a system of national regulation (independent of Government) by the Healthcare Commission, the Commission for Social Care Inspection and Monitor (the regulatory body for Foundation Trusts). Patient choice has been strengthened by such initiatives as ‘Choose and Book’, and in Our Health, Our Care, Our Say a move towards more community-based services has been heralded. 87 To deliver these profound changes will require huge commitment and energy across the NHS, and it will need substantial effort to maintain the focus on providing high quality services to people, including those with cancer. 88 Equally, it is crucial that those concerned with cancer services are responsive to the impact of these changes. So while we welcome in principle the policy of placing in primary care practices the responsibility for commissioning services, where they can best reflect the choices of local people, we are concerned to ensure that commissioning decisions are made responsibly, flexibly and on the basis of full knowledge of the options available. 18 19 Radiotherapy capacity in the UK A European survey has shown that the UK has only 53% of the required radiotherapy capacity, being on a par with the Czech Republic and Hungary. By contrast, Belgium, France and Sweden had over 90% of the radiotherapy machinery considered necessary for their populations Prostate Cancer Charter for Action A gender imbalance exists in cancer, as with other major diseases, which can be attributed to the reluctance of men to seek early intervention or respond to health warnings or awareness campaigns. The Prostate Cancer Charter for Action has been at the forefront of the campaign to tackle inequalities, and improve symptom awareness and early detection. In 2006 a groundbreaking pilot awareness programme on the prostate and its function began in Coventry, funded jointly by the Government and many of the signatories to the Charter for Action. It aims to gather evidence of what works in raising awareness amongst men, and evaluate the extent to which awareness-raising activity impacts upon the demands placed on NHS services. This approach represents a model for other collaborative awareness-raising initiatives, involving the NHS, voluntary sector and potentially some businesses.21 Chapter 2: Involvement of and choice for people affected by cancer Services 89 Similarly, we wish to see the tariff developed in a way which improves service quality. Fixed rate tariffs can create perverse incentives where the financial implications and best clinical practice do not coincide – for example, in relation to oral cancer therapies, where fewer outpatient visits are required, though a reduction in such visits reduces the income earned by the NHS Trust. Tariffs based on national average costs for existing treatments can discourage service providers from developing new and innovative ways of providing or organising treatment, care and support. Furthermore, there needs to be consistency regarding the services covered by the tariff.We note for example that plans for a tariff in palliative care have stalled, and that government funding for these services remains insufficient and unclear. 90 From the perspective of cancer services the reformed NHS should incentivise investment in up-to-date specialist equipment and improved facilities, for example through joint commissioning arrangements; and should ensure that there are no disincentives for providing high-cost drugs or services which are clinically indicated. This should help to tackle inequalities based on geography. There is scope here for strengthening partnerships across the voluntary sector, and between the voluntary sector, Government and the NHS. 91 At present there is little experience or expertise in commissioning at practice or PCT level, yet effective commissioning is at the very core of the reformed NHS.We note that the All Party Parliamentary Group on Cancer has recommended that Cancer Networks are well placed to commission cancer services for broad geographical areas and to plan for sustained improvements in cancer care, and we support this in principle. Commissioning: Patient Involvement The Audit, Information and Analysis Unit (AIAU) is supported by PCTs across the South East, to encourage participation from patients and the public, and provide equitable access to quality specialised services across organisations. The AIAU is accountable to the London Specialised Commissioning Group and is responsible for carrying out focused studies in specialised services, and developing actions plans for the implementation of recommendations. Its Advisory Board has two active patient/public representatives. The work of the Unit will help to influence the strategic direction for specialised services and support commissioners to make key decisions. Using AIAU findings, commissioners will be able to act jointly with Trusts to develop the quality of clinical practice where variations have been identified, improve patient access and address inequity in service provision. 20 Chapter 3: Research Investing for the future Introduction 93 Research is the foundation for effective cancer care and treatment, providing the essential evidence base for services and policy. As cancer research continues to develop new diagnostic techniques and improvements in treatment, and new more effective approaches to the delivery of services, the central priority must be to ensure that research results are translated into clinical practice as quickly, safely and effectively as possible – and in ways which serve to reduce inequalities. 94 The first Cancer Plan put in place a new, more effective platform for research. Through the National Cancer Research Institute, and the establishment of the UK Clinical Research Collaboration, collaboration and co-ordination in cancer research have increased significantly. The new partnership between Government, the voluntary sector and the private sector has transformed the way cancer research is coordinnated and this approach is increasingly being adopted for research into other diseases. Moreover, as a result of the work of the National Cancer Research Network, there has been a significant increase in the number of people with cancer who participate in clinical trials – up from 3% to 14%; and opportunities for participation continue to grow. 95 Meanwhile the wider context for health research has also changed. In 2006 the Government launched plans for implementing a new National Strategy for Health Research, based on a new, virtual, National Institute for Health Research. It also announced its intention to merge the (hitherto separate) funding of the Medical Research Council and the NHS Research and Development Programme. And the way in which funding is allocated to universities to support charity-funded research is also under review. 96 The establishment of the new National Institute provides a good opportunity to review the allocation of research funding, including variations in funding between different regions and the balance between academic research and the priorities of the pharmaceutical industry. England needs to remain an attractive place for investment by the pharmaceutical companies, while ensuring that the needs of people with cancer are paramount. Planning for a new generation of cancer drugs 97 A new generation of cancer drugs targeted at the specific abnormalities found in cancer cells is already becoming available, but these new treatments are costly and it is not yet clear how these costs will be met. This means that the role of NICE will become increasingly important in future. Pharmaceutical innovation needs to be encouraged, while at the same time striking a balance between access to optimal treatments and ensuring all people with cancer receive value for money from the limited budget currently available for cancer care. Genetics 98 Meanwhile, research into the genetic risks related to cancer, and the scope for preventing and treating cancer which this research brings, is progressing rapidly. In particular, research should help us to understand why some people develop cancer and why some respond better to treatment than others. Treatments tailored to fit each individual could reduce service costs, enabling investment to be made in other areas. As genetic tests for cancer become more widely available, plans – and budgets – need to be drawn up to ensure that the capacity to analyse the results can keep pace with demand. 99 As this research progresses, it is important that public confidence is maintained through for example communicating the difference between a genetic predisposition to cancer and the genetics of diagnosis, treatment and prognosis; and by improving risk awareness, especially among the “worried well”. 92 A substantial piece of work is needed to develop and provide appropriate tools for commissioning, whether at the level of Strategic Health Authorities, Cancer Networks, PCTs or primary care practices; and to ensure that there is adequate training for those who will be operating the new system.We recommend that such work takes full account of the cancer services perspective, and above all the wants and needs of people with cancer.Greater involvement in clinical trials 100 While we welcome the increase already seen in numbers participating in research, it would be helpful to increase further the number of people becoming involved. The benefits would be especially valuable for those groups who are currently under-represented, such as those with rarer cancers and people from black and minority ethnic groups. Increased participation in clinical trials will increase our understanding in these areas. 101 By working in partnership with medical research organisations we consider that healthcare professionals should be able to promote a better understanding among people with cancer of the benefits of participation in research – supported by information about what involvement in research entails, and what clinical trials are currently available in the individual’s area. There is good evidence to show that people with cancer who are treated in a “research active” environment have better health outcomes than others. Cancer research workforce 102 Research work is attractive to many. But there is concern that the incentives to enter – and remain in – this field are insufficient. This is particularly so in such areas as supportive and palliative care. Good long-term workforce planning is needed to ensure an adequate and attractive career in research is available in future. 103 A number of charities have developed research fellowships which are models of good practice, and these could be extended into new areas. Other incentives include greater protection of clinical researchers’ time for continuing their research and professional training; and more encouragement of healthcare professionals to become involved in research. Regulatory burdens in cancer research 104 Regulation of cancer research serves to ensure that it is ethical, cost-effective and carried out to the highest standards. It is essential that such regulation is proportionate and workable. 105 In respect of human tissue, for example, the initial development of the Human Tissue Act 2005 reflected important societal concerns about the use of human tissue. But the cancer research community had to work with the Department of Health to ensure that the licensing framework which it introduced would not overly increase costs for researchers nor discourage sharing of tumour tissue between research groups. The impact of this new legislation needs therefore to be carefully monitored by the Human Tissue Authority. 106 Similarly, while the individual’s right to privacy needs to be upheld in relation to the use of patient data, a balance needs to be found which enables such data to be used in research, including cancer research. The national cancer registries are an invaluable resource in this respect. Currently there is provision – though not always clearly understood – for cancer datasets to be transferred to the national registry for use in medical research projects. This provision must be safeguarded for the future. 107 A third example relates to the European Clinical Trials Directive. Although intended to simplify and harmonise clinical research across Europe, this Directive has had the unintended effect of increasing substantially the cost of conducting non-commercial trials, and of extending the time taken to initiate trials, in the UK. Accordingly we recommend that the UK Clinical Research Collaboration, working with the Medicines and Healthcare products Regulatory Agency and with funders of research, should to monitor the impact of the Directive on clinical trials in this country. Investing in underfunded research areas 108 There are several areas in cancer which do not benefit from the same level of research funding seen for the more common cancers. This is particularly the case for cancers where survival is poor, such as pancreatic cancer, lung cancer and mesothelioma. These neglected cancers have a poor survival rate because they are often identified at a late stage. 109 Cancers where survival is poor are not necessarily rare. The biggest killer is lung cancer yet despite killing over 26,000 people in 2004 it currently receives just 4% of the national cancer research budget. If the care, treatment, information and support standards of the best units were applied to every person with lung cancer, the five year survival rates could be doubled – without any new advances in diagnosis or treatment. 110 While it is important that research funding goes to the best proposals, some priority must be given to those cancers which have experienced persistent underfunding in terms of research.We recommend that the National Cancer Research Institute considers, as a matter of priority, how the right balance can be struck in this regard. 111 Other areas where further investment would be beneficial include research into cancer prevention, living with cancer, health economics and health services research. It would also be valuable to research the accuracy of basic cancer data: some tumours, such as tumours of the brain, may be under-recorded because they are also a common secondary cancer site. 112 Finally, we recommend that a broader approach is taken to the evaluation of research evidence. In a number of instances there is little or no scope to conduct randomised controlled trials – for example in relation to certain areas of cancer prevention. In such cases research findings which are not based solely on Randomised Clinical Trials, (RCTs) should be accepted. Chapter 3: Research Investing for the future 22 23barriers or in extending information to those who are, for whatever reason, hard to reach. The inequality gap is widening, in cancer as elsewhere, and concerted action across Government is needed in order to narrow it. 121 A third priority is to put people with cancer in control of their care and treatment. This will lead to a better experience of the care and treatment system, and better outcomes. People’s expectations should rightly be higher. 122 More and better research is of course needed into new treatments and new drugs, and research findings need to be turned more speedily into clinical practice. Extra funding for research is important; but more effective use can and should be made of existing resources. In particular we wish to see an increased proportion of total research funding directed to the rarer and more neglected cancers, as outlined above. 123 Much of the success of the Cancer Plan reflects effective partnership working between Government, the NHS, the voluntary sector and industry.We are keen to see this continue at a national and local level and across all Cancer Networks. 124 And, as further reform of the NHS is implemented, the development of effective commissioning of cancer services, is of central importance. Crucially, the voice of the person with cancer must be at the centre of the commissioning process. Implementation 125 The Cancer Reform Strategy will be published towards the end of 2007.We should like to see the strategy reflect the seven founding principles and the four pillars set out here. Prevention 126 In terms of prevention, we wish to see the Government’s targets for reducing smoking given greater impetus, in order to tackle more aggressively the single greatest avoidable cause of cancer and ill-health. The Government should consider as a matter of priority what further action can be taken to help people quit smoking. Today’s smokers are tomorrow’s cancer patients. Action taken now will hold down future healthcare costs, as Derek Wanless has shown, and will therefore be cost-effective in the medium term and beyond. 127 Similarly, as research finds increasing evidence of the links between other lifestyle factors (healthy eating, more exercise, reduced alcohol consumption) and cancer, the case for preventive action will be correspondingly stronger. The Government has set itself a number of targets for preventive action in these areas, and we wish to see them met. As with smoking, investment in effective prevention measures need not be costly and will bring financial benefits downstream. These priorities reflect the priorities in the most recent public health White Paper. 128 Raising people’s awareness of cancer was a commitment in the Cancer Plan. As this document has shown, much more needs to be done, especially for “hard to reach” groups. This must also be a priority for immediate action, so as to improve outcomes by encouraging earlier presentation. Measures need to be devised to determine the effectiveness of interventions. 129 Screening remains an essential part of the prevention and early detection of cancer. We wish to see existing screening programmes reviewed to ensure optimum effectiveness, and to identify where extension to other age groups or groups of people is justified. Similarly where the evidence of benefit is clear we wish to see screening programmes drawn up for new cancer sites, with plans for early implementation. Screening programmes may be costly to set up and run, but they bring immense advantages in terms of early diagnosis, treatment and therefore outcomes. 25 Conclusion Getting it right for people with cancer Introduction 113 We have seen substantial improvements in cancer services since the first Cancer Plan was produced, as set out earlier in this document. As a result, people with cancer are experiencing better care and treatment, with better outcomes. Overall cancer mortality is falling faster than expected and for many cancers survival rates are improving. The experiences of people with cancer are better, and they are more articulate in expressing their needs and wishes. 114 The first Cancer Plan showed the importance of setting out a clear disease-specific strategy, with clear direction. Its success to date has depended crucially on the National Cancer Director, who has provided determined and clear leadership, sustained over many years. He has secured political and voluntary sector support for implementation of the Cancer Plan. It is essential for people with cancer that the long-term strategy, and the role of the Director, continue into the future, and the leadership intrinsic to the role is sustained. 115 Through the Cancer Plan significant extra resources have been devoted to cancer services. These have enabled essential diagnostic and other equipment to be obtained, and for services to be improved and extended, for example in relation to cancer screening. This Group wishes to see those levels of increases in investment in cancer continue, so that cancer funding in this country matches those found elsewhere in Europe – an ambition voiced by the Secretary of State for Health in the introduction to the first Cancer Plan. In particular, action is needed to comply with the Government’s compact with the voluntary sector to ensure that there is progress towards full cost recovery, particularly in relation to palliative care. 116 We recognise that there are increasing constraints on the provision by Government of new resources for health. Many eminent people, notably Derek Wanless, have reviewed health funding levels in this country and have advocated the need for more investment, especially in health promotion and disease prevention, and we strongly support the case for extra funding for cancer services and cancer prevention strategies. 117 But there is much that can be done through more efficient use of existing resources. For example, by shifting more care and treatment from hospitals to the community – from in-patient to out-patient; through the establishment of a single source of knowledge for cancer prevention, care and treatment, so that healthcare professionals do not have to reinvent the wheel; through more effective coordination of care, and through packages of care and treatment drawn up for each individual, so that resources are not wasted on ineffective or partially effective treatments. In what follows we set out our conclusions on the priorities which we wish to see reflected in the forthcoming Cancer Reform Strategy. 118 For some cancers, the key to more efficient use of resources is prevention. Resources spent on preventing people from getting cancer are very well spent; not only are the costs of treatment, care and support avoided, but the individual and their family, friends and colleagues are also spared the emotional turmoil and anxiety of coping with a life-threatening disease.We strongly support measures aimed at tackling the behaviours which research shows are associated with cancer. 119 Our second priority is to encourage early presentation and early detection. More and better information needs to be disseminated to enable people to be alert to symptoms which may point to cancer, and to encourage them to seek clinical help and advice at as early a stage as possible. Healthcare professionals also need support in considering cancer as a possible diagnosis. More training and better information will help.We also recommend that a tool for measuring awareness is developed as a matter of priority. 120 To achieve this goal action to tackle inequalities is crucial – whether in overcoming cultural 24need to deploy in an increasingly personcenntre NHS. Training plans should reflect NICE’s Improving Outcomes Guidance: better skills in communication should be given high priority. 137 We have identified the importance of the physical environment in which people with cancer receive care and treatment. There has been much improvement in recent years, but there is more to do in terms of raising the quality of the therapeutic environment up to the standards of the best. Upgrading accommodation can be expensive; but by shifting a proportion of acute care into the community some resources should be released to enable such investment to be made in the short term. 138 Similar investment planning is needed for cancer equipment, capable of delivering the best diagnostics and treatment outcomes. New and improved cancer equipment is constantly becoming available and people with cancer will expect to have ready access to it. The Cancer Reform Strategy will need to state how a rolling programme of investment will be funded. Again, means may need to be found to release resources currently invested elsewhere. Research 139 We have described above a range of ways of strengthening and improving cancer research, especially into new drugs and therapies and into cancer genetics. The National Cancer Research Institute, the UK Clinical Research Collaboration and the National Clinical Research Network provide a clear and strong organisational framework on which to build. For the future we wish to see these bodies working with the new National Institute for Health Research to ensure that appropriate priority is given to cancer research.We also wish to see more effective measures to increase the involvement of people with cancer in clinical trials – this must be a high priority. We also wish to see significant investment 27 Conclusion Getting it right for people with cancer People with cancer 130 Tackling inequalities is another Government priority which affects a number of Departments including health.We have described how inequalities operate in cancer, and have identified steps to be taken to narrow the gap. These steps should be included in cross-government delivery plans for reducing inequalities. 131 We have set out above the need for a programme to improve the volume, quality and comprehensiveness of information about all aspects of cancer in ways which people with cancer, and those who support them, find accessible and easy to understand and use. This information must be of high quality, culturally sensitive and available in a wide range of languages.Accreditation processes for information providers should be introduced. This will help in a number of ways, helping to cope with the anxiety and enabling people to take greater control of their disease. Providing better information should not be costly; it should be possible to introduce improvements immediately while planning the further information needs which should and could be met in the future. 132 The Government has signalled a shift from acute to community-based services. This shift offers fresh opportunities to plan and implement new programmes of care and treatment in settings nearer to the homes of people with cancer and those around them. These programmes should include mechanisms for measuring the quality of experience of those with cancer and the effective co-ordination of care.We welcome the new opportunities for partnership between statutory services and the voluntary sector, through the agency of the Cancer Network, which such programmes offer particularly in terms of palliative care. Action plans for implementing these partnerships should reflect the terms of the Government’s Compact, with a clear commitment to full cost recovery to be reached within a specified timescale. 133 The first Cancer Plan set a number of targets for shortening the time which people with cancer wait for diagnosis and treatment. This is an important indicator of service quality, and it is crucial that the improvements made in the past six years are maintained.We are concerned about the impact that NHS reform may have on these waiting times. The Cancer Reform Strategy needs to outline measures to assure people that progress will be maintained. We should also like to see it set more demanding goals for waiting times, in line with the Government’s pledge to do more in this area. 134 Further steps need to be included in the new Strategy to ensure that all people with cancer experience the service quality of the best. In this respect it is crucial that further guidance from NICE is implemented swiftly and uniformly across the country. This should include NICE’s appraisals of new cancer drugs and its Improving Outcomes Guidance. Research findings which improve outcomes need to be fast-tracked into clinical practice. There should be a commitment from Government to provide sufficient resources to implement this priority. Cancer professionals 135 We welcome the increase in numbers of healthcare professionals entering the cancer field since the Cancer Plan was published. There remain, however, gaps in provision, particularly in certain branches of radiotherapy and plans need to be drawn up to remedy these deficiencies. Overall, the future supply and skill mix of cancer specialists needs to be planned and included as a priority within the NHS’s wider workforce strategy. To facilitate this, the views of the voluntary sector should be sought and reflected. 136 While many cancer specialists respect the right of people with cancer to take control over their disease, there are still a number who do not. There remains therefore an important requirement for training staff in the skills they 26 made into those cancers which have so far received little research attention, and where for relatively small sums there could be a substantial benefit. NHS reform 140 The Government has drawn up comprehensive and ambitious plans for reform of the NHS. The Cancer Reform Strategy will doubtless explain how cancer services are to be delivered within the new NHS’s systems and structures. In this new world, practice-based commissioners will be pivotal in securing the right package of services for each individual. To do the job effectively, they will need a range of tools and guidance, possibly including disease-specific commissioning specifications or frameworks, as well as support in the form of information and training. It is essential that there is a considered and appropriately resourced strategy for migration to the new system to maintain people’s confidence in the quality and accessibility of high quality cancer services, and we will expect to see such a strategy set out in detail in the Cancer Reform Strategy. Clinical Data The National Lung Cancer Audit (LUCADA) is one of the first national comparative audits of cancer services. Commissioned by the Healthcare Commission and with a clinical lead through the Royal College of Physicians, it aims to help managers and clinicians improve both quality of cancer care and patient outcomes. The data collected is clinically relevant, collected in the clinical setting and is already providing valuable insights into regional and national performance.Conclusion Getting it right for people with cancer Resourcing the new strategy 141 Many of our conclusions and recommendations are included within the Government’s existing programmes, for example on health promotion and disease prevention. Others require some redistribution of existing resources or only small additional sums of money.We see no reason why implementation of these proposals should be delayed, and we expect to see them incorporated in the Cancer Reform Strategy accordingly for immediate adoption. 142 Improvements in buildings, facilities and equipment are likely to require substantially more investment. In the present financially stringent climate we envisage that the levels of new investment required will have to be found by releasing resources from elsewhere. With around £4 billion a year being spent on cancer services, there should be scope for reprofiling resources across the system as a whole. The Government’s commitment to shifting services from acute to communitybaase settings should produce significant savings in due course, and costed plans based on this approach should be drawn up. It should not be unreasonable to expect significant progress to be made in the physical environment of cancer by say 2012. 143 Spending by PCTs on cancer services varies across the country and is currently inequitable. Steps should be taken to normalise this spending as a matter of priority. In order to achieve this, and to ensure that services are reprofiled equitably over the system as a whole, Cancer Networks should take a strong role in commissioning cancer services and should be given control over an element of the budget. 144 In addition, for the reasons set out above, funding for cancer services needs to be viewed from a cross-government perspective. Such a view may identify scope for system-wide efficiencies, for example by quantifying the impact that treating and supporting people with cancer has on national productivity and on people’s ability to work. 145 The cancer components of the NHS’s overall workforce strategy will presumably be included in the project’s overall costs and timetable for implementation. 146 Further investment in screening will be dependent on the evidence for change becoming available. Implementation plans will inevitably reflect the specific design requirements and costs that the evidence indicates. But it would be short-sighted not to plan for further investment in such areas. Where significant levels of funding can be found for this purpose is hard to see at this stage, unless resources can also be released through service changes. Monitoring implementation 147 The Cancer Campaigning Group is delighted at the announcement of a Cancer Reform Strategy. It hopes to continue to help the National Cancer Director in the formulation and delivery of the new Strategy. 148 For the future, the Group envisages reviewing the Government’s progress in implementing the Strategy, to measure progress and make this information publicly accessible. 28 cancer • campaigning • group white paperThe Cancer Campaigning Group is grateful for the support of five pharmaceutical companies: cancer • campaigning • group white paper Beating Bowel Cancer • Bowel Cancer UK • Brain Tumour UK • Breakthrough Breast Cancer Breast Cancer Campaign • Breast Cancer Care • British Lung Foundation • Cancer Research UK Cancer Black Care • Cancerbackup • CLIC Sargent • James Whale Fund for Kidney Cancer Jo’s Trust Fighting Cervical Cancer • Kidney Cancer UK • Leukaemia Care • Leukaemia Research Orchid • Lymphoedema Support Network • Lymphoma Association • Macmillan Cancer Support Maggie’s Centres • Marie Curie Cancer Care • Myeloma UK • Ovacome • Pancreatic Cancer UK Roy Castle Lung Cancer Foundation • Samantha Dickson Brain Tumour Trust • Sue Ryder Care Teenage Cancer Trust • Tenovus • The Mouth Cancer Foundation • The Prostate Cancer Charity United Brain Tumour Campaign • World Cancer Research Fund
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