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NURSING PEOPLE WITH CANCER IN SCOTLAND
A FRAMEWORK
01 The Context
CHAPTER 1: INTRODUCTION
1.1 New cases of cancer are diagnosed in almost 26,000 people in Scotland each year, with 15,000 deaths (SEHD, 2001a). Cancer is a significant cause of mortality and morbidity and can have profound effects on people's physical and psychological well-being and relationships. It can also affect their social, employment and education activities.
1.2 Cancer has been defined as one of the four key health priority areas for NHSScotland, and has received much attention through national policy.
Cancer in Scotland: Action for Change (SEHD, 2001a), the Scottish Cancer Plan, sets out the Scottish Executive's strategies to develop and improve cancer services in Scotland.
1.3Nursing People with Cancer in Scotland: A Framework complements the Cancer Plan by:
focusing on patient/public needs in relation to cancer
emphasising the nursing contribution to the care of people with cancer and their carers
recognising nurses' ongoing education, training and professional development needs in caring for people with cancer.
1.4 Nurses and midwives in many diverse settings in the statutory, voluntary and independent sectors provide care to people with cancer and their carers across Scotland. They are at the forefront of delivering services that encourage healthy lifestyles and consequently help to prevent the development of some cancers. They also screen to detect signs of early disease and provide treatment and care for patients and carers from pre-diagnosis, through diagnosis and treatment, to palliative care, end of life and into bereavement.
1.5 The contribution of nurses working in cancer specialist settings (cancer centres, cancer units and hospices that provide specialist palliative care services to people with cancer) to these services is significant. Most care for people with cancer and their carers, however, is delivered by practitioners in non cancer-specific settings across all sectors, including primary care, general hospital settings, care homes, hospices and mental health and learning disability services. Nurses in these services consequently have an enormous impact on patients' experience of cancer care.
1.6 Particularly important is the contribution of nurses in primary care services, not only in the prevention and early detection of cancer and in the provision of palliative care, but also in the treatment and follow-up of people with cancer. Primary care services are widely recognised as providing a vital role in screening populations and supporting patients with cancer and their carers throughout their experience of cancer (SCACC, 1997).
1.7 Also significant, in particular circumstances, is the care given by midwives to women accessing maternity services who have (or have had) cancer or are caring for someone with cancer. The term 'nurse' is used throughout this Framework for convenience and to enhance consistency, but the important contribution of midwives to cancer care in Scotland is readily acknowledged.
1.8 The Framework therefore addresses nursing services for people with cancer and their carers across the age spectrum, wherever care is offered and whoever is involved in its planning, delivery and evaluation. It highlights the specific contribution of nurses to cancer care at strategic level, focusing on the structures and support needed to develop nursing services. The overall aim is to ensure that nurses, working as part of multi-disciplinary teams and in partnership with patients and carers, can plan, deliver and evaluate individualised care focused on facilitating health, enhancing well-being and meeting patients' healthcare needs.
PROCESS AND STRUCTURE
1.9 The Cancer Nursing Sub-group of the Scottish Cancer Group (
Appendix 1) identified a Steering Group (
Appendix 2) to take forward the work of developing the Framework on its behalf.
1.10 The Steering Group devised a project plan which focused initially on convening three national conferences to elicit responses from nurses and others on how the Framework should be developed. These conferences supplied rich material that the Steering Group was able to take into account in deliberations on the structure and content of the document.
1.11 The Steering Group decided to adopt the 'key drivers' identified in the national strategy for nursing and midwifery,
Caring for Scotland (SEHD, 2001b), as the basis of the Framework, modifying them slightly to focus on specific implications for nursing services for people with cancer and their carers. The key drivers are:
leadership
accountability, support and supervision
career development and workforce planning
continuing professional development and education
research, evidence-based practice, development and innovation.
1.12 These drivers offer a comprehensive framework on which the direction for development of nursing services for people with cancer in Scotland can be set. They provide the structure for Section 2 of the Framework, in which recommendations for action at a range of levels, from individual practitioner to national policy level, are placed.
1.13 The core principles of Regional Cancer Advisory Groups (RCAGs) and Managed Clinical Networks (MCNs) also have a significant influence on the structure and content of the Framework. RCAGs and MCNs provide a structure for organising and developing cancer services in Scotland, and the principles on which they are based are reflected throughout the document.
1.14 The Framework text was finalised following comments received from key stakeholders (
Appendix 3).
CHAPTER 2: POLICY CONTEXT FOR CANCER CARE IN SCOTLAND
2.1 Nursing services for people with cancer and their carers in Scotland are shaped and affected by a number of policy statements. Some of these concentrate on improving the population's health and well-being and defining the structure of NHSScotland; some are specific to cancer care; and some are specific to nursing and midwifery services. National guidelines and standards from organisations such as NHS Quality Improvement Scotland (NHS QIS), the Scottish Intercollegiate Guidelines Network (SIGN) and NHS Health Scotland also have a significant influence.
GENERAL POLICY STATEMENTS
2.2 The present-day structure of NHSScotland has been developed through successive policy initiatives, including
Designed to Care (SODoH, 1997) (which introduced clinical governance into the service), the
Acute Services Review Report (SODoH, 1998), the
Report of the Joint Future Group (SEHD, 2000a) (which sets out the basis for joint planning and working between health and social care services),
Our National Health (SEHD, 2000b), and
Partnership for Care (SEHD, 2003a). These major policy statements have been augmented and developed with follow-up reports and documents focusing specifically on key areas such as service redesign and workforce development.
2.3 The
Acute Services Review Report introduced the concept of Managed Clinical Networks (MCNs). MCNs have been defined as:
... linked groups of health professionals and organisations from primary, secondary and tertiary care working in a co-ordinated manner, unconstrained by existing professional and Health Board boundaries, to ensure equitable provision of high quality clinically effective services throughout Scotland (SODoH, 1999a).
2.4 MCNs are now being formed across a range of healthcare services in Scotland, including cancer care.
2.5 The Regulation of Care (Scotland) Act 2001 put in place the Scottish Commission for the Regulation of Care (Care Commission) and gave Ministers the power to publish National Care Standards which providers in the independent sector, including private hospitals, hospices and care homes, have to work towards to meet the health and social care needs of patients/clients.
2.6 Throughout these policy initiatives, four key issues have featured prominently:
improving people's health and well-being
ensuring equity of service provision
increasing access to services throughout Scotland
promoting patient and carer involvement in the design, delivery and evaluation of services.
2.7 The need to improve the health and well-being of Scotland's population is particularly marked (SEHD, 2003a), with prevention and early detection of cancer having a high priority.
Health Improvement in Scotland: The Challenge (Scottish Executive, 2003) set out two challenges to the service: to improve the health of all people in Scotland, and to improve the health of the most disadvantaged communities at a faster rate, thereby narrowing the 'health gap'. It prioritised action in relation to five health-risk factors - tobacco and alcohol use, fruit and vegetable intake, physical activity levels and obesity. There are proven links between all of these factors and cancer levels; indeed, the document sets mortality rates from cancer as one of the key inequality indicators used as a measure to judge the success of actions.
2.8Our National Health (SEHD, 2000b) emphasised the importance of equity and access to services for people throughout Scotland.
Towards a Healthier Scotland (SODoH, 1999b) highlighted the need to focus on promoting health and identified the four key health priority areas for NHSScotland, one of which is cancer.
2.9Patient Focus and Public Involvement (SEHD, 2001c) paved the way for greater patient and carer involvement in their own care services, a process given further impetus by
Partnership for Care (SEHD, 2003a). Increasing patient involvement calls not only for new ways of working for healthcare professionals, but also for new ways of thinking (SEHD, 2001c). It is recognised that members of the public and professionals will need support to contribute effectively to this process, and patient involvement workers are currently being appointed by Regional Cancer Advisory Groups. Evaluation of patient and public involvement in services is now carried out as part of the Performance Assessment Framework (PAF) for NHS Boards.
POLICY STATEMENTS ON CANCER SERVICES
2.10 Cancer services in Scotland have evolved in response to patient needs, local and regional variations, and Scottish, UK and international research evidence on cancer care. A number of initiatives from within Scotland, such as
Commissioning Cancer Services in Scotland (SCCAC, 1996 and 1997) and
Cancer Scenarios (SEHD, 2001d), and from outwith the country (the Calman-Hine Report (DOH, 1995), for instance), have influenced the development of cancer services in Scotland.
2.11 Most significant is the national Cancer Plan,
Cancer in Scotland: Action for Change (SEHD, 2001a). The main aim of the Plan is to develop services focusing on:
preventing cancer
detecting and treating cancer early
facilitating rapid access to diagnosis and treatment
improving cancer treatment and care
improving palliative care
investing in staff and technology
supporting research and development.
2.12 The Cancer Plan has been followed by a national strategy for information management and technology (SEHD, 2002a) and guidelines on making information available for people with cancer and their carers (SEHD, 2003b).
POLICY STATEMENTS ON NURSING AND MIDWIFERY
2.13 The nursing and midwifery strategy for Scotland,
Caring for Scotland (SEHD, 2001b), set out a vision of nurses and midwives leading services in partnership with patients and women accessing maternity services. It spearheaded the further development of consultant nurse and midwife roles and encouraged nurses and midwives to embrace change, develop their practice and become innovative practitioners.
2.14 As the strategy's name suggests, however, it also emphasised the core principle at the heart of nursing and midwifery - caring - and encouraged development of the fundamental elements of nursing and midwifery practice. All of these factors are significant for nurses and midwives caring for people with cancer and their carers.
2.15 Nursing's public health function has long been under-utilised.
Nursing for Health (SEHD, 2001e) helped to re-establish nursing's expertise in this area, which is of great importance to the delivery of effective cancer services, and provided the impetus for the development of the Public Health Practitioner role.
Nursing for Health - Two Years On (SEHD, 2003c) sets out progress in meeting the report's objectives.
2.16 The importance of research and development to nursing and midwifery is the focus of
Choices and Challenges (SEHD, 2002b). This document is briefly summarised in Box 8.1 on page 22.
CHAPTER 3: MEETING PATIENTS' NEEDS
3.1 Cancer services in Scotland are being designed to deliver effective services locally to people throughout Scotland. Key principles of ensuring equity of access to services, encouraging patient and carer involvement and promoting health and well-being are fundamental to the design of these services.
STRUCTURE OF CANCER SERVICES IN SCOTLAND
3.2 Three
Regional Cancer Advisory Groups (RCAGs) have been set up in North, West and South-East Scotland. The RCAGs are responsible for overseeing the local implementation of the Cancer Plan, agreeing annual investment plans and maintaining good communications with NHS Boards. They report directly to the
Scottish Cancer Group, the strategic body set up to advise the Scottish Executive.
3.3 The RCAGs work with
Managed Clinical Networks (MCNs) which bring together patients and/or patient representatives with a multi-disciplinary team of professionals providing care for patients with specific tumour types or who provide services such as palliative care or paediatric oncology. MCNs aim to ensure that care within the network is seamless from the patient's perspective by:
agreeing protocols and patient pathways
auditing patient outcomes
being active in research, development and education
sharing good practice through dissemination of, for example, NHS QIS reports relevant to cancer care and specialist palliative care
having clear policies on providing information to patients and carers.
3.4 A full summary of the core principles of MCNs is set out in NHS Circular HDL(2002) 69 (SEHD, 2002c).
3.5 Many NHS Boards have also appointed
Lead Cancer Teams, commonly consisting of a Lead Clinician, Lead Cancer Nurse and Lead GP. Regional Network Managers are also in place.
3.6 While structures in each of the three Scottish regions vary to suit local needs, the overall structure of cancer services in Scotland can be described as set out in Figure 3.1.
INVOLVING PATIENTS AND CARERS
3.7 The issue of patient and carer involvement is central to Scottish Executive healthcare policy. The Cancer Plan,
Cancer in Scotland (SEHD, 2001a), states:
We are aiming for a future where patients and their relatives and carers are at the heart of the healthcare and support services - involved not just in receiving care, but in planning and developing that care.
3.8 Increasing patient and carer involvement is likely to make services more responsive to patients' needs, more acceptable and accountable to patients, and more equitable and accessible, with consequent benefits in improved quality and outcomes of care. It is also likely to improve patients' and carers' experience of cancer care, a key quality indicator and a central component of clinical governance.
3.9 Patient and carer involvement is, however, a challenging concept to enact in practice. It requires a genuine 'patient focus' in services, where the patient's experience of care is the essential ingredient in developing partnerships at operational level, and where patient involvement drives change at organisational level. It requires significant commitment from patients and professionals and the ability to reject stereotypical perceptions of role. In short, it requires cultural change across the board.
3.10 Patient involvement is particularly complex in cancer care, where the heavy demands of treatment and uncertainty about the future can place exceptional strains on patients and carers which may militate against involvement in planning, delivering and evaluating care.
3.11 In Scotland, research is being carried out to try and identify effective models of patient involvement, and a number of initiatives with a specific cancer focus have been launched. The RCAGs have responsibility for increasing patient involvement, and each is recruiting Patient Involvement Workers. MCNs are required to identify patient views through appropriate methods such as surveys and focus groups, then act on them accordingly. And patient representatives sit on the Scottish Cancer Group and other key committees within the Scottish Executive.
THE NURSING CONTRIBUTION
3.12 It is important to re-emphasise that nursing services for patients with cancer and their carers are not predominately provided in specialist cancer centres, and are not solely delivered by nurses who have specialised in cancer care. The reality is that most nursing care for people with cancer and their carers is provided by nurses working in non cancer-specific services (see 1.5).
3.13 Nurses at all levels are involved in caring for people with cancer, from nursing auxiliaries and healthcare assistants to senior nurses in clinical, management, education and research environments. All are aiming to influence practice and improve patient care in different ways, some directly and, equally important, some indirectly.
3.14 The next section of the Framework sets out specific actions that need to be taken to develop and strengthen the nursing contribution to care for people with cancer and their carers.
Figure 3.1: Structure of cancer services in Scotland
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