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An integrated career and competence framework for nurses working in the field of long-term follow-up and late effects care of children and young people after cancer

An integrated career and competence framework for nurses working in the field of long-term follow-up and late effects care of children and young people after cancer

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  • 1. RCN Late effects comp 15/9/11 22:31 Page 1 RCN Competences Competences: An integrated career and competence framework for nurses working in the field of long-term follow-up and late effects care of children and young people after cancer
  • 2. RCN Late effects comp 15/9/11 22:31 Page 2 Acknowledgements Thanks are also due to Dara de Burca, Director of Services, We would like to thank: the Sheffield Children and Young CLIC Sargent and Philomena Scott, Lead Nurse, Children People’s Survivorship Test Site Nurse Competence Project and Young People, Sheffield Teaching Hospitals NHS Team; the Sheffield Children and Young People’s Foundation Trust for reading and commenting on the Survivorship Test Site Steering Group; the North Trent draft of this document. Cancer Network (NTCN) Survivorship Executive Group; the National Cancer Survivorship Initiative (NCSI) Funding and Support Children and Young People’s (CYP) Clinical Reference This project was commissioned as part of a programme of Group; the 80 senior managers and clinicians who work undertaken by the National Cancer Survivorship completed and returned the Phase 1 survey into the scope Initiative’s Children and Young People Workstream, funded of the nurse’s role in late effects care; the 36 nurses in by the Department of Health (DH) in partnership with existing long-term follow-up roles who completed and NHS Improvement and Macmillan Cancer Support. It was returned the Phase 2 survey on the scope of the nurse’s co-ordinated at Sheffield Teaching Hospitals NHS role in late effects care; and Tanya Urquhart and the team Foundation Trust in partnership with Sheffield Children’s of children’s nurses who initiated this work. Hospital NHS Foundation Trust and supported by the North Trent Cancer Network and the Yorkshire and the Key contributors Humber Specialised Commissioning Group (SCG). The Jan Siddall, Teenage Cancer Trust Lead Nurse, Sheffield foundation of this work builds on our efforts to implement Teaching Hospitals NHS Foundation Trust the recommendations of the National Institute for Health and Clinical Excellence’s guidance Improving outcomes Clare Warnock, Practice Development Nurse, Sheffield in children and young people with cancer: the manual Teaching Hospitals NHS Foundation Trust (NICE, 2005). Diana Greenfield, Macmillan Consultant Nurse, Sheffield Teaching Hospitals NHS Foundation Trust Feedback This framework will be reviewed in September 2013. To Susan Mehta, Clinical Nurse Specialist, Great Ormond provide feedback on this competence framework, or on Street Hospital for Children NHS Trust your experience in using it, please contact: Dr Diana Greenfield, Macmillan Consultant Nurse, 6th Floor,Weston The project team Park Hospital,Whitham Road, Sheffield, S10 2SJ Jan Siddall, Project Lead, Sheffield Email: diana.greenfield@sth.nhs.uk Clare Warnock, Deputy Project Lead, Sheffield Tel: 0114 226 5592 Diana Greenfield, NCSI CYP Test Site Lead, Sheffield RCN Legal Disclaimer Maxine Astley-Pepper, Development Manager, Macmillan This publication contains information, advice and guidance to help Cancer Support members of the RCN. It is intended for use within the UK but readers are advised that practices may vary in each country and outside the UK. Denise Friend, Project Manager and Service Improvement The information in this booklet has been compiled from professional Facilitator, North Trent Cancer Network sources, but its accuracy is not guaranteed.Whilst every effort has been Faith Gibson, Chair, NCSI CYP Steering Group made to ensure the RCN provides accurate and expert information and guidance, it is impossible to predict all the circumstances in which it Bev Horne and Susan Mehta, Nurse Representatives, NCSI may be used.Accordingly, the RCN shall not be liable to any person or CYP Steering Group entity with respect to any loss or damage caused or alleged to be caused directly or indirectly by what is contained in or left out of this Alison Pass, Service User information and guidance. Gail Peacock, Project Support, North Trent Cancer Network Published by the Royal College of Nursing, 20 Cavendish Square, London W1G 0RN Judi Tapp, National Improvement Lead, NHS Improvement © 2011 Royal College of Nursing. This publication may not be lent, resold, hired out or otherwise disposed of by ways of trade in any form Tanya Urquhart, Macmillan Clinical Nurse Specialist, of binding or cover other than that in which it is published, without the Sheffield, Children’s Hospital NHS Foundation Trust prior consent of the Publishers.
  • 3. RCN Late effects comp 15/9/11 22:31 Page 1 ROYAL COLLEGE OF NURSING Competences: an integrated career and competence framework for nurses working in the field of long-term follow-up and late effects care of children and young people after cancer Contents Foreword 2 1d Care plans and treatment summaries 11 Introduction 3 1e Medication 12 Purpose of a competence framework 3 2. Acting as the key accessible professional for the multidisciplinary team, undertaking Context of this competence framework 3 proactive case management and using clinical acumen to reduce the risks to patients from How these competences were derived 4 disease or treatment 12 Scope of the competences 5 2a Self-management 12 How to produce evidence to demonstrate 2b Transitional care 13 competence 5 2c Multidisciplinary team working 13 Headline competences 6 3. Using empathy, knowledge and experience Model of nursing in this specialty 6 to assess and alleviate the psychosocial suffering of cancer, including referring to Benefits of the framework 6 other agencies or disciplines 14 References 7 3a Information and support 14 3b Psychosocial care 14 Nursing competences: long-term follow-up and late effects care of children and 4. Using experience, clinical knowledge and young people after cancer: 9 insight from patient experience to lead service redesign in order to implement 1 Using and applying experience and clinical improvements and make service responsive knowledge of cancer and treatment to oversee to patient need 15 and co-ordinate services, personalise the cancer pathway for individual patients, and 4a Research, audit and service evaluation 15 to meet the complex information and 4b Service development 15 support needs of children and young people and their families 10 4c Education 15 1a Technical knowledge of cancer and its treatment in relation to late effects care for children and young people 10 1b Applying technical knowledge to tests and investigations 10 1c Assessment 11 1
  • 4. RCN Late effects comp 15/9/11 22:31 Page 2 RCN COMPETENCES – L ATE EFFECTS AF TER C ANCER Foreword NHS Improvement is delighted to be working in We give our thanks to the Royal College of Nursing for its partnership with the Royal College of Nursing to produce support in enabling this publication to be produced within this publication. ambitious time scales. It has been a pleasure to be involved in this venture with them. NHS Improvement’s strength and expertise lie in practical service improvement. It has over a decade of experience in On behalf of the NCSI CYP workstream and NHS clinical patient pathway redesign in cancer, diagnostics, Improvement heart, lung and stroke and demonstrates some of the most Patricia Morris, NHS Improvement Director – Cancer leading edge improvement work in England which supports improved patient experience and outcomes. For Judi Tapp, NHS Improvement National Improvement more information, visit the NHS Improvement website at Lead – Cancer www.improvement.nhs.uk NHS Improvement has worked in partnership with the Department of Health and Macmillan UK to support the delivery of the National Cancer Survivorship Initiative (NCSI). This initiative is designed to test, develop and recommend the provision of appropriate after care to each and every cancer patient ‘living with and beyond cancer’ to meet their individual holistic needs. The Children and Young People (CYP) workstream is one of two workstreams that NHS Improvement has actively supported during the past three years. The initial testing phase involved 10 centres in England, and NHS Improvement is now working with four sites to prototype alternative models of after care. Significant progress has already been made in terms of defining patient pathways, testing alternative models of care, and capturing the evidence to demonstrate the benefits to both patients and the wider NHS if such models were commissioned in the future. A fundamental element of this work is to ensure that any change to service can be delivered by a skilled and appropriately trained workforce – nursing skills and competences are the cornerstone of after care services to children and young people living with and beyond cancer. The partnership working between the CYP workstream of NHS Improvement and the Royal College of Nursing has made it possible to produce such an important publication – a set of nurse competences endorsed by the principal nursing organisation in the country. NHS Improvement has valued this working partnership immensely.Without the advice and expertise of the Royal College of Nursing it would not have been able to complete this work with the same degree of credibility and authority at a national level. 2
  • 5. RCN Late effects comp 15/9/11 22:31 Page 3 ROYAL COLLEGE OF NURSING Introduction This is the first competence framework for nurses in the effects of cancer treatment may vary in their impact, with United Kingdom involved in the long-term follow-up care some being sub-clinical and others resulting in potentially of children and young people after cancer. It builds upon life-threatening or debilitating conditions (Oeffinger et al., the recommendations of the National Institute for Health 2006). These may include, for example, effects on growth and Clinical Excellence (NICE) children and young (in children), or on endocrine, cardiac or renal function, people’s (CYP) improving outcomes guidance (IOG) and an increased risk of developing future malignancies (NICE, 2005). The NICE CYP IOG addresses the care of (Oeffinger et al., 2006; Chesterfield, 1999; Wallace et al., children and young people diagnosed with cancer up to 2001). the age of 25 years. This spans the care of children and There are a number of factors that influence an young people across children’s, adolescent, and adult individual’s risk of developing late effects. These include health care services. the type of cancer, the cancer treatments received, age at This competence framework addresses issues related to diagnosis, gender, time lapsed since treatment, individual long-term follow-up care (including late effects care and psychosocial responses to diagnosis and treatment in survivorship) for survivors of childhood, adolescent and addition to psychological, social and environmental young people’s cancer. However, with the exception of influences (Stein et al., 2008). Long-term follow-up care is those competences which deal with the physical and designed to match a patient’s personal journey through emotional developmental stages in children and young cancer; how they have coped with their treatment against a people, these competences may also be useful to nurses calculated risk stratification associated with their cancer working across the wider cancer population. treatments (Wallace et al., 2001; UKCCSG Late Effects Group, 2005). Late effects can occur at any time following treatment, and Purpose of a competence it is important to consider approaches to monitoring, framework supporting and clinically managing this group of patients. Evidence suggests that patients may require monitoring A competence framework describes the range of for many years – and some may require specialist care for knowledge, skills and performance levels required of the rest of their lives. Others may need support to reach a nurses working in a specialty, to help them achieve safe, degree of self-monitoring and responsibility for their own effective and accountable practice. Competence can be health needs. defined as “the state of having the knowledge, judgment, Cancers that occur in children and young people present a skills, energy, experience and motivation required to unique set of challenges for the patient, their family and respond adequately to the demands of one’s professional health care providers. The transition from childhood to responsibilities” (Roach, 1992). The Nursing and adulthood is a time when self identity, independence and Midwifery Council (NMC) uses competence to describe new work and social roles are being forged. Cancer and its skills and ability to practise safely and effectively without treatment, with the attendant frequent hospitalisation and the need for supervision (Dolan, 2003). consequences of late effects, can interfere with this process, resulting in long-term detrimental effects on educational achievement, employment, social roles and Context of this competence relationships (Greenfield et al., 2003). framework This document will term all types of follow-up care after a Many of the cancer treatment regimens delivered to cancer treatment as long-term follow-up care (LTFU); achieve excellent survival rates in children and young LTFU care encompasses patients who have had any people include multi-agent chemotherapy in combination treatment for any cancer that has, or may have, a physical with surgery and/or radiotherapy. However, there is an or psychological impact on their health. increasing recognition of the long-term consequences of cancer treatment, often referred to as ‘late effects’. The late 3
  • 6. RCN Late effects comp 15/9/11 22:31 Page 4 RCN COMPETENCES – L ATE EFFECTS AF TER C ANCER Figure 1: How the framework was derived How these competences were derived Creation of a basic framework for CYP late effects care from literature search, consultation and project team Structured questionnaires were used to collect views on the scope of the nurses’ role in a two-part data collection process. The Phase 1 questionnaire asked those responsible for late effects services to select the roles they felt were appropriate for nurses involved in late effects Pilot the framework with existing clinical nurse specialists in care. This resulted in 80 completed responses from health late effects care service managers and clinicians. The Phase 2 questionnaire asked nurses involved in late effects services to identify the roles they currently carried out and those they would like to develop in the future, and captured the Request managers’ and clinicians’ views on ideal CYP late effects perspectives of 36 nurses in existing roles. Questionnaires nurse skills and roles were distributed via children’s, teenage and young adult principal treatment centres across the United Kingdom. The project was registered with the Clinical Effectiveness and Audit Department of Sheffield Teaching Hospital NHS Request views of existing late effects nurses on their current and Foundation Trust. It was conducted in line with the trust’s ideal skills and roles ethical procedures. The content of the questionnaires was based on items identified following a literature review, a review of local and national competence frameworks and consultation Collation of results and creation of CYP late effects competence with clinical nurse specialists and health care professionals framework involved in providing late effects care for patients following cancer (including services for children, teenagers and young adults). This process (see Figure 1) identified core nursing roles that were potentially important to the Feedback from managers, clinicians and nurses for further nurse working in late effects care. Results from the surveys comments and corrections were collated and the competences produced using the Nursing career framework (DH, 2004) as described overleaf.A full report of the survey, The clinical skills and training needs required by nurses to meet the needs of User’s views of the competence framework patients living with and beyond cancer, for patients diagnosed under the age of 25: a 3 phase exercise, is available from the Sheffield Teaching Hospitals NHS Foundation Trust Project Team (Warnock et al). Final changes The competences went through an iterative process with involvement from key stakeholders including the original nurses from Phase 2 of the survey. NHS Improvement authorisation Royal College of Nursing endorsement 4
  • 7. RCN Late effects comp 15/9/11 22:31 Page 5 ROYAL COLLEGE OF NURSING Scope of the competences How to produce evidence to The knowledge, skill and performance levels in this demonstrate competence document reflect the comments from the project team and You are responsible for developing your own portfolios of the diverse group of LTFU nurses who contributed to the evidence for each competence statement in order to survey. The work concentrates on the Department of demonstrate that you have achieved it at the Health’s career framework supporting long-term care (DH, identified/desired level. Forms of evidence that you can 2006). The intention of the competence framework is to use include case histories, self appraisal via a reflective meet the learning needs that reflect the range of skills and diary, 360-degree feedback, verification of practice, and knowledge required by qualified nurses working in late structured observation of practice. effects care. The competences in this document are not designed to meet the learning needs of health care When you gather evidence it is important to consider the assistants or associates on levels 1, 2, 3, and 4 of the Career following: framework for health, and the Department of Health’s G ensure you understand what the competence statement Nursing careers framework (DH, 2009). is asking of you This document does not set out to determine grades for G review any existing work that could be used specific roles. Some roles may require the nurse to work at competent level in some aspects of their work while G identify whether the existing evidence is appropriate. working at expert level in others. It is also anticipated that For example, if you attended a study day to prepare to nurses working at experienced/proficient level would hold perform a particular intervention but you have not the skills identified at competent level and the expert practiced the skill in a clinical setting, your certificate of nurse would hold many of the skills of the competent and attendance is not evidence of competence.You will have to proficient nurse (see the section entitled ‘How to produce consider making arrangements for supervised practice. evidence to demonstrate competence’ which follows). However, if you have undergone training and have Matching this document against the Knowledge and skills evidence of supervised practice and perform the care framework (KSF) has been considered. However, as not all treatment on a regular basis the evidence should be health institutions use the KSF, the consensus was not to enough. link these competences to the KSF. Information about the You may also wish to: KSF, which can be used as a supporting tool, can be found on the Department of Health website (Skills for Health) at G consider what else you may need to do in developing www.dh.gov.uk. evidence such as feedback on your practice; if you have further developmental needs, are these recorded in a A wide variety of role names are associated with nurses personal development plan? working in this specialty; for example, clinical nurse specialist, and advanced nurse practitioner. To save G think about using evidence that covers several confusion, the term ‘nurse’ will be used throughout this competences; one case study may demonstrate that document.We acknowledge that nurses working in LTFU you have used a variety of knowledge and skills in cancer care may either work exclusively in this specialty, or caring for a person. as part of a wider nursing role. This will depend on the service needs and evolving care locally. Late effects services are provided across the developmental range including childhood, adolescence and adulthood.As a consequence, the term ‘children and young people’ has been used to provide consistency of terms within this document. The term ‘carer’ has been used to describe those with significant caring responsibility such as a parent, guardian or partner. 5
  • 8. RCN Late effects comp 15/9/11 22:31 Page 6 RCN COMPETENCES – L ATE EFFECTS AF TER C ANCER Headline competences including referring to other agencies or disciplines as appropriate. G Assess actual and potential late effects problems. 4. Using technical knowledge and insight from patient G Develop individualised treatment summaries and care experience to lead service redesign in order to plans. implement improvements and make services G Provide information, support and advice to children, responsive to patient need. young people and their families. Whilst we are not advocating that all nurses in this G Encourage self care and support self monitoring. specialty should work at the level of the CNS, this framework most suits the model currently practised by G Liaise with members of the multidisciplinary team to existing nurses in this specialty and reflects the extent of optimise holistic care. the skills and experience nurses need to deliver this care. G Demonstrate knowledge of the impact of cancer and These are potentially highly skilled roles due to the complex its treatment on the psychosocial development of nature of the long-term follow-up sequelae (that is, the children and young people. abnormal conditions resulting from a previous disease). G Support the smooth transition of care either from This framework has been devised to be used alongside children’s to adult services, or from adolescent to adult generic competences developed by Skills for Health (SFH) services. and the Royal College of Nursing (RCN), where these are appropriate, for particular aspects of the role. For example, G Create services that can work in conjunction with, or the Skills for Health competency CS30: provide advice and link with, primary care. information to children and young people and those G Initiate or co-operate in research, audit and service involved in their care on how to manage their own evaluation. condition (SFH, 2010) may be a useful supplementary generic competency alongside the self-management G Facilitate the development of evidence-based practice competency contained in this framework. through service developments. The NICE IOG (NICE, 2005) recommends a key worker, G Participate in educational programmes in late effects and for this framework we have interpreted the key worker care. in LTFU to be a nurse (with the scope of their responsibilities dependant on their grade). Model of nursing in this specialty Benefits of the framework The model that most suits the responses gained from The competence framework will not only provide benefits colleagues working in LTFU care is that contained in the for nurses, but also their employers, especially where there recently published Excellence in cancer care: the is currently a gap in services that needs addressing. contribution of the clinical nurse specialist (CNS) (National Using the framework will help you, as a nurse, to: Cancer Action Team, 2010), which follows the framework of the four main functions of the CNS in cancer care: G deliver consistently high standards of care 1. Using and applying technical knowledge of cancer and G identify your level of practice and plan your career in a treatment to oversee and co-ordinate services, more structured way personalise ‘the cancer pathway’ for individual G pinpoint education and development needs to help you patients, and to meet the complex information and realise your potential more effectively support needs of patients and their families. G work towards excellence in practice during the annual 2. Acting as the key accessible professional for the performance and development review multidisciplinary team, undertaking proactive case management and using clinical acumen to reduce the G seize opportunities to influence the direction of risks to patients from disease or treatments. nursing in this relatively new field of clinical care 3. Using empathy, knowledge and experience to assess G foster and improve professional relationships with and alleviate the psychosocial suffering of cancer, medical colleagues and allied health professionals 6
  • 9. RCN Late effects comp 15/9/11 22:31 Page 7 ROYAL COLLEGE OF NURSING through a greater understanding of skills and References responsibilities. Chesterfield P (1999) ‘Late effects of chemotherapy’, in The framework will give employers and managers: Gibson F and Evans M (editors) Paediatric oncology: acute G a tool to develop, plan and implement LTFU services nursing care, London: Whurr Publishers, pp.142-153. more effectively, including job descriptions Children’s Oncology Group (2010) Long-term follow-up G a model to ensure consistently high standards of care guidelines for survivors of childhood, adolescent, and young adult cancers (version 3).Available from G a tool with which to ensure children’s, teenage and www.survivorshipguidelines.org young adult aftercare pathways are met Department of Health (2004) The knowledge and skills G a clearer insight into the expertise and competence of framework and the development review process, London: nursing staff in this field DH.Available from www.dh.gov.uk G a benchmark to assist with professional development. Department of Health (2006) Supporting people with long-term condition to self care, London: DH.Available The patient and public will benefit from the framework as from www.dh.gov.uk it will: Department of Health (2009) Nursing careers framework. G ensure acknowledgement of the nursing care needs of Available from www.dh.gov.uk this group of patients Dolan G (2003) Assessing student competency: will we G ensure consistently high standards of care ever get it right?, Journal of Clinical Nursing, 12, pp.132- G ensure increased effectiveness of service provision 141. G facilitate early identification of late effects Greenfield DM,Absolom K, Davies H, Ross R and Eiser C (2003) Childhood cancer survivors: transition from G promote timely intervention for late effects pediatric to adult care, Current Medical Literature- GH and G assist patients with the transition from children’s to Growth Factors, 18, pp.83-91. adult LTFU care as needed National Cancer Action Team (2010) Excellence in cancer G provide a model of follow-up care that supports the care: the contribution of the clinical nurse specialist, patient throughout their lifespan London: NHS. G promote healthy lifestyles National Institute for Health and Clinical Excellence (2005) Improving outcomes in children and young people G promote self-monitoring of health after cancer with cancer: the guide, London: NICE.Available from treatment. www.nice.org.uk Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, Friedman DL, Marina N, Hobbie W, Kadan-Lottick NS, Schwartz CL, Leisenring W and Robison LL (2006) Chronic health conditions in adult survivors of childhood cancer, New England Journal of Medicine, 355(15), pp.1572-1582. Roach S (1992) The human act of caring: a blueprint for health professions (revised edition), Ontario: Canadian Hospital Association Press. Skills for Health (2010) Career frameworks CS30, London: SfH.Available from www.skillsforhealth.org.uk Stein KD, Syrjala KL and Andrykowski MA (2008) Physical and psychological long-term and late effects of cancer, Cancer, 112, pp.2577-2592. 7
  • 10. RCN Late effects comp 15/9/11 22:31 Page 8 RCN COMPETENCES – L ATE EFFECTS AF TER C ANCER United Kingdom Children’s Cancer Study Group - Late Effects Group (2005) Therapy based long-term follow up: practice statement (2nd edition), Skinner R,Wallace WHB and Levitt G A (editors), Leicester: UKCCSG. Available at www.cclg.org.uk Wallace WHB, Blacklay A, Eiser C, Davis HA, Hawkins MM, Levitt GA and Jenney MEM (2001) Developing strategies for long-term follow up of survivors of childhood cancer, British Medical Journal, 323, pp.271-274. Warnock C, Siddall J, Freeman J and Greenfield D (manuscript in progress) Beyond treatment: emerging nursing roles for the care of children and young people after cancer. 8
  • 11. RCN Late effects comp 15/9/11 22:31 Page 9 ROYAL COLLEGE OF NURSING Nursing competences: long-term follow-up and late effects care of children and young people after cancer In the following pages, the competence framework is iv. using technical1 knowledge and insight from patient divided into sub roles taken from the Department of experience to lead service redesign in order to Health Nurse career framework (DH, 2009). These include implement improvements and make service responsive that of clinician, manager, educator and researcher and are to patient need. listed as: Further subheadings are given for domains of competence i. using and applying technical1 knowledge of cancer and under which competences are categorised by level of treatment to oversee and co-ordinate services, skill/knowledge, that is, that of competent nurse, personalise the cancer pathway for individual patients, experienced/proficient nurse, or expert nurse. and to meet the complex information and support The flow from left to right assumes a gain in knowledge needs of patients and their families and skills, in other words the movement from ‘competent’ ii. acting as the key accessible professional for the to ‘experienced/proficient’ and from ‘experienced/ multidisciplinary team, undertaking proactive case proficient’ to ‘expert’. management, and using clinical acumen to reduce the By the time a nurse is functioning as ‘expert’ the risks to patients from disease or treatment competences listed in ‘competent’ and ‘experienced’ are iii. using empathy, knowledge and experience to assess assumed and so not repeated. It is likely any one individual and alleviate the psychosocial suffering of cancer, may function at different levels in a number of domains. including referring to other agencies or disciplines as appropriate 1 A consultation process with key nurse stakeholders resulted in the amendments of wording in the subheadings so that the term ‘technical knowledge’ has been exchanged for the term ‘experience and clinical knowledge’. 9
  • 12. RCN Late effects comp 15/9/11 22:31 Page 10 RCN COMPETENCES – L ATE EFFECTS AF TER C ANCER Nursing competences: Using and applying experience and clinical knowledge of cancer and treatment to 1 oversee and co-ordinate services, personalise the cancer pathway for individual patients, and to meet the complex information and support needs of children and young people and their families 1a Technical knowledge of cancer and its treatment in relation to late effects care for children and young people Competent Experienced/proficient Expert nurse • Has a basic knowledge of • Has comprehensive knowledge of cancer and • Has expert knowledge of: pathophysiological principles relating to its treatment and potential late effects • the late effects complications cancer complications associated with cancer and its • Has a basic knowledge of cancer • Has a comprehensive understanding of treatment treatments and their potential long-term treatment sequelae appropriate to own • oncology-related CYP care effects specialty area for example, endocrine, • Uses this knowledge to: • Recognises and is able to describe late skeletal, developmental effects • create and promote innovative effects complications common to own area • Has a comprehensive knowledge of potential solutions to health problems of practice interventions and outcomes in relation to • develop services that meet the • Demonstrates knowledge of potential common late effects complications needs of patients requiring late interventions and outcomes in relation to • Demonstrates a clear understanding of the effects care. common late effects complications potential physical, psychological and social • Demonstrates understanding of the normal current and long-term consequences of cancer physical developmental patterns of growth and its treatment on children and young adults and puberty on the transition from • Demonstrates knowledge of the wider adolescent to adult physical, psychological and social factors that • Demonstrates knowledge of the principles can affect children and young adults treated of symptom management in relation to with cancer common late effects complications • Has comprehensive understanding of • Has a basic understanding of children and oncology-related CYP care. young people’s (CYP) psychosocial care. 1b Applying technical knowledge to tests and investigations Competent Experienced/proficient Expert nurse • Demonstrates knowledge of tests and • Independently initiates a wide range of • Uses expertise to prescribe, initiate, investigations commonly used in own area investigations used within late effects care as interpret and monitor diagnostic tests including rationale for use and normal part of agreed guidelines and protocols and investigations utilised within late ranges of results (UKCCSG Late Effects Group, 2005), (Childrens effects care independently and • Carries out basic investigations appropriate Oncology Group, 2010) without supervision, according to the to own area of practice • Accurately interprets the findings of tests and child or young person’s clinical need • Organises tests and investigations investigations used within late effects care • Acts as an expert resource for other requested by senior colleagues • Makes appropriate changes to the plan of care health care professionals (HCPs) • Assists clinicians carrying out in the light of findings, in conjunction with when dealing with complex or investigations used within late effects care clinicians or within protocols and guidelines challenging situations relating to and provides appropriate support to the • Provides detailed information to the young consent clinician and child or young person person and their family about tests and • Plays a leading role in developing • Makes appropriate decisions in seeking investigations; identifies new support or protocols and clinical guidelines help in relation to findings of tests and information needs arising from findings of relating to tests and investigations investigations results used within late effects care. • Is able to provide simple descriptive and • Uses complex strategies to deal with procedural information about tests and challenging issues relating to consent investigations • Uses expertise to relay difficult news to • Demonstrates a good working knowledge children and young people at a level of their of the legal framework and guidelines own understanding. relating to the consent process for children and young people • Provides support and further explanation to the child or young person after the clinician has discussed test results. 10
  • 13. RCN Late effects comp 15/9/11 22:31 Page 11 ROYAL COLLEGE OF NURSING 1c Assessment Competent Experienced/proficient Expert nurse • Is able to carry out a structured nursing • Uses skills in history-taking and evaluation of • Is able to work autonomously assessment for children and young people diagnostic tests to carry out an assessment managing the care of children and developed for the nursing service within protocols and guidelines and/or in young people in the service • Recognises actual and potential late effects conjunction with senior nursing or medical • Uses clinical examination skills to care problems that might require attention, clinician develop late effects plans of care and reports concerns to appropriate • Recognises signs and symptoms of health independently colleagues problems associated with late effects care • Independently reviews and assesses • Makes appropriate decisions in seeking requiring urgent review by senior colleagues children and young people help in relation to findings following • Uses specialist knowledge to recognise • Acts as an expert resource for other assessment whilst also recognising own deviations in expected childhood and HCPs when dealing with complex or limitations adolescent development challenging situations relating to • Is able to prepare the child or young person • Is able to assess the impact of cancer consent undergoing clinical examination, ensuring diagnosis and treatment on lifestyle and future • Acts as an expert resource for other that privacy and dignity, health and safety education and employment needs colleagues in relation to issues and and consent issues are met • Uses specialist knowledge and skills to assess concerns arising from outcomes of • Is able to assist the clinician in carrying out the emotional and psychological wellbeing of assessments clinical assessments for children and young children and young people and carers receiving • Plays a leading role in developing people late effects care assessment tools and clinical • Provides appropriate explanation and • Uses complex strategies to deal with guidelines for late effects care. support to the child or young person challenging issues relating to consent undergoing clinical assessments in late • Ensures that assessments reflect current best effects care practice and are evidence-based. • Ensures assessments meet legal framework and guidelines relating to children and young people and consent; liaises with senior colleagues when issues around consent arise • Has an understanding of the holistic needs assessment process, and its implications for practice. 1d Care plans and treatment summaries – personalising the cancer pathway for individual patients Competent Experienced/proficient Expert nurse • Documents clear and accurate information • Uses specialist knowledge to create age- • Uses expert knowledge to about children and young people appropriate care plans for children and young independently assess, evaluate, • Provides accurate and appropriate people according to agreed protocols and select and implement appropriate information when assisting others with guidelines late effects care plans according to developing care plans and treatment • Uses a range of clinical data to facilitate timely patients’ clinical needs summaries for individual children and and effective interventions for children and • Acts as an expert resource for other young people young people HCPs when dealing with challenging • Provides information and explanation to • Is able to identify and prioritise children and situations arising from the late effects patients and carers in relation to the late young people requiring urgent intervention care plan for example, different effects care plan and referral perspectives on treatment decisions • Demonstrates awareness of confidentiality • Uses specialist knowledge to recognise and between children and young people issues relating to the age and self- report deviations from the expected progress and their family responsibility of the young person. of an individual child or young person • Designs, develops and implements • Within protocols and guidelines, creates care pathways to guide practice treatment summaries for children and young within the late effects service. people using case notes • Co-ordinates late effects care where appropriate to ensure prompt and appropriate referral to specialist services • Ensures late effects care plans are evidence- based and reflect current best practice. 11
  • 14. RCN Late effects comp 15/9/11 22:31 Page 12 RCN COMPETENCES – L ATE EFFECTS AF TER C ANCER 1e Medication Competent Experienced/proficient Expert nurse • Demonstrates a basic knowledge of • Provides medication for late effects patients • Prescribes medicine as a non-medical medications commonly used in own area according to protocol and guidelines (for prescriber (independent and/or of practice in relation to late effects care example, patient group directions (PGDs)) supplementary prescriber) within the including indication, mode of action, and • Evaluates effectiveness and outcomes of late effects service adverse effects medication, and consults with clinician • Works with the multidisciplinary team • Administers appropriate medication as regarding changes (MDT) to develop protocols and prescribed in accordance with professional • Uses specialist knowledge to provide guidelines for medications for use and organisational standards individualised information about medication within the late effects service for • Provides advice and explanation to patients used within late effects care to enable example, PGDs treatment pathways. on medication used within late effects care. informed consent and self- management. Acting as the key accessible professional for the multidisciplinary team, undertaking 2 proactive case management and using clinical acumen to reduce the risks to patients from disease or treatment 2a Self-management Competent Experienced/proficient Expert nurse • Assesses the ability and motivation of the • Responds to changes in the child or young • Acts as a resource to other staff in child or young person to manage self care person’s age and ability to understand the supporting children and young • Identifies risk and age-related behaviours implications of self care throughout their late people with complex needs in relation in relation to adherence with care effects care pathway to adherence with care instructions instructions or advice • Responds to identified risk behaviours and and advice • Teaches the child or young person to carry takes appropriate action to minimise their • Works with other agencies to develop out self-monitoring and self-care on single impact on adherence to care instructions and clear pathways for referral to support issues in focused consultation advice and information services within the • Supports the child or young person in • Teaches children and young people to carry out late effects service healthy living choices that may have been self-monitoring and self-care and mentors • Proactively engages in promoting the affected by cancer and its treatment them in the process self care principle at local, national • Recognises the importance of primary care • Continues contact with the child or young and international forums services in providing local services for person and family to assess progress, provide • Creates services that can work in children and young people. encouragement, and advise on difficulties with conjunction with, or link with primary self- management care services. • Uses communication skills to encourage the child or young person to become more responsible for their own health • Creates care plans with late effects patients to encourage self-care and self- reporting of any significant symptoms • Liaises with primary care as appropriate. 12
  • 15. RCN Late effects comp 15/9/11 22:31 Page 13 ROYAL COLLEGE OF NURSING 2b Transitional care – supporting patients as they move from child/adolescent-centred to adult-orientated health care systems Competent Experienced/proficient Expert nurse • Has an understanding of the phases of the • Provides information and support to ensure • Takes a leading role in developing transition process and ensures young children and young people and parents feel and implementing services to support people receive services appropriate to their fully involved in the changes in care associated transitional care from children’s to age and individual needs with the transition process young adult services and to adult • Provides support and information to • Assesses the emotional and psychological health care in primary, secondary and enable young people to take more readiness of the young person to take more tertiary care responsibility for their own care responsibility for their own care, and develops • Works with other agencies to develop • Guides young people in the use of and appropriate individualised interventions to clear pathways and guidelines for the updating of their care plan support them to do so transfer of long-term follow-up care • Provides practical and emotional support to • Supports the young person to develop the between services encourage young people to develop their skills and confidence required to enable them • Acts as a specialist resource for local confidence in taking an active role in to negotiate transition from parental health and social care services communicating with health professionals responsibility to self-care regarding transitional care as appropriate • Supports carers in allowing, and supporting, • Develops educational programmes to • Provides information to ensure young the young person to take more control of their enable young people to develop the people and parents are aware of the own care knowledge, confidence and skills to changes in care and service provision • Provides information to ensure young people take more responsibility for self- associated with the transition process have a good understanding of their diagnosis management and self-care and make • Respects the privacy and confidentiality and associated late effects or risk for healthy lifestyle choices issues of young people as they move into developing late effects to enable them to take • Develop approaches to monitoring adulthood and assume responsibility for an active role in their future care transition arrangements and services their own health care • Develops treatment summaries and care plans to ensure they meet the needs of • Demonstrates an awareness of other key to provide information to support the transfer young people and their families. developments and milestones at this age. of young people as they move from children’s to young adult and adult health care services • Participates in educational programmes including health education to support staff involved in transitional care. 2c Multidisciplinary team working Competent Experienced/proficient Expert nurse • Liaises between patients and family and • Uses communication and supportive skills to • Promotes inter-professional working other members of the MDT involved in late encourage the child or young person to to ensure effective communication effects services to optimise care become more involved in consultations with and develop the MDT approach to • Makes appropriate referrals to other the MDT patient care delivery within the late members of the MDT involved in late • Is able to co-ordinate MDT interventions effects service effects services including complex discharge or treatment • Works with the MDT to ensure • Attends MDT meetings in late effects as plans for children and young people children and young people pathways appropriate • Liaises with health care professionals in the are robust, feasible and promote • Recognises the potential holistic care community and sign-posts to other health care quality care needs of children and young people and teams as appropriate • Provides expert advice to other the contributions of other health and social • Liaises with agencies outside the late effects members of the MDT across the late care professionals in meeting these needs service in relation to current and anticipated effects service – for example youth support, educational future needs of individual patients for • Builds partnerships with health, and emotional support. example, education and employment services social, voluntary and independent • Communicates effectively with the MDT using a sectors to develop the late effects wide range of strategies to promote the patient service experience and quality of care within the late • Plays a leading role in developing late effects service effects MDT operational policy and • Actively contributes to the development of the activities of the MDT meeting late effects service within the MDT • Plays a leading role in local and • As a core member, presents patients at late network audits within the late effects effects MDT meetings. service MDT. 13
  • 16. RCN Late effects comp 15/9/11 22:31 Page 14 RCN COMPETENCES – L ATE EFFECTS AF TER C ANCER Using empathy, knowledge and experience to assess and alleviate the psychosocial 3 suffering of cancer including referring to other agencies or disciplines 3a Information and support Competent Experienced/proficient Expert nurse • Is able to direct children and young people • Provides information about late effects care • Works with agencies outside of the and other family members to appropriate that requires advanced specialist knowledge late effects service to develop agencies and information sources within • Supports the children and young people in appropriate information and support the late effects service evaluating information in relation to their • Leads on the development, audit and • Is able to provide written, online and verbal individual needs and preferences evaluation of patient information information to children and young people • Accesses information from a range of resources and carers about their condition and resources and uses it to meet the individual • Organises and plans support groups treatment needs of children and young people for children and young people and • Evaluates children and young people and • Critically assesses written carers carer understanding of information and information/websites prior to recommending • Develops strategies and guidelines communicates effectively to correct these to the child or young person or carer for managing issues raised during misunderstandings and give further • Uses specialist knowledge to provide telephone contact. information when required telephone consultations autonomously to • Is able to provide simple advice and children and young people information relating to late effects care over • Contributes to the development and evaluation the phone of patient information resources within the late • Explains complex medical terminology in effects service lay terms • Uses specialist knowledge to assess the • Participates in children and young people supportive needs of children and young people support groups for late effects care and their carers • Demonstrates clear documentation of • Assists in the provision of planned education patient contact within the late effects programmes for children and young people service. and carers • Facilitates support groups for children and young people and carers. 3b Psychosocial care Competent Experienced/proficient Expert nurse • Demonstrates knowledge of the • Has a comprehensive understanding of the • Uses expert knowledge to effectively psychological effects of cancer on children potential psychosocial consequences of late communicate with CYP and families in and young people and their family and effects on the children and young people, challenging situations friends carer, family members and friends • Works with families and other • Is able to communicate effectively and • Uses specialist knowledge to foster the agencies to ensure children’s appropriately with children and young development of coping strategies that are maximum individual potential is people along the developmental continuum effective for children and young people and achieved • Has knowledge of the impact of cancer and their carers • Acts as an expert resource for other its treatment on psychosocial development • Provides advice and support to enable children HCPs when dealing with complex and in children and young people and the and young people to manage the impact of challenging communication issues transition to adulthood diagnosis and treatment on their relationships • Demonstrates advanced • Provides information and support to with those important to them - carers, siblings, communication skills e.g. counselling children and young people and carers on friends and motivational interviewing late effects care issues, treatment and • Uses complex strategies to deal with techniques services communication issues such as breaking bad • Works with other agencies to develop • Uses local pathways to refer children and news about relapse and development of new clear pathways for complex young people with psychosocial support late effects psychosocial support needs relating needs to appropriate services. • Uses knowledge and experience of the needs to late effects care. of children and young people to provide psychological support on a wide range of diverse issues • Provides advice and support about work and new roles to ensure the child or young person is not inappropriately disadvantaged by the consequences of their diagnosis and treatment. 14
  • 17. RCN Late effects comp 15/9/11 22:31 Page 15 ROYAL COLLEGE OF NURSING Using experience, clinical knowledge and insight from patient experience to lead 4 service redesign in order to implement improvements and make service responsive to patient need 4a Research, audit and service evaluation Competent Experienced/proficient Expert nurse • Collects data required for service • Carries out service evaluation and audit of key • Identifies problems experienced by evaluation, audit or research within the late aspects of own practice within the late effects CYP that can be the focus of research effects service service for example, patient satisfaction, local • Leads in the design and completion of • Demonstrates an understanding of the service standards research projects within the late principles of clinical research and can • Writes for publication on own specialty e.g. effects service explain to patients the meaning of common article in journal aimed at nurses on specific • Leads in the design and completion of terms and concepts (for example, placebo, aspect of late effects care service review and audit projects of randomisation, qualitative research, • Presents posters/papers at conferences on the late effects service patient reported outcomes, informed own specialty or service review • Writes for publication on own consent). • Contributes to the development and research relating to late effects care completion of service review, audit and local • Develops relationships with other research in late effects care. agencies to promote research and enterprise partnerships within late effects care and services. 4b Service development Competent Experienced/proficient Expert nurse • Supports more junior staff in the • Teaches and supervises staff in • Uses expert knowledge to inform the development implementation of specialist late effects late effects care in a range of and delivery of local late effects services care settings • Develops evidence-based protocols and guidelines • Contributes to the development of the late • Uses specialist knowledge to for the late effects service effects service by identifying concerns or contribute to the development • Actively engages late effects service users to obtain gaps in the service and sharing them with of evidence-based policies and their views of service delivery and improvement senior colleagues procedures for late effects care • Monitors and evaluates late effects protocols and • Demonstrates awareness that the views of • Represents the late effects policies service users are important to influence service or own discipline within • Represents the late effects service or own discipline change in practice the late effects service at local within the late effects service at network and • Is responsive to change to improve clinical strategic meetings national meetings services. • Contributes to the development • Plays a leading role in the development of business of service reports within late cases and service reports within the late effects effects care. service • Influences late effects care policy at local and national level • Identifies service deficits and develops strategic plans for the late effects service. 4c Education Competent Experienced/proficient Expert nurse • Teaches other HCPs in their own late effects • Teaches groups of HCPs on late effects care in • Creates local and network educational service on a one-to-one basis on issues the local service in a range of settings programmes for other HCPs in late relating to late effects care • Provides formal taught sessions on late effects care • Supports more junior staff in the effects care on local study days • Creates educational programmes on implementation of specialist late effect • Teaches on externally run educational late effects care for academic credit in care. programmes in late effects care for example, liaison with university on undergraduate and postgraduate training • Creates national programmes of programmes education in late effects care for • Participates in creating and delivering local example, study days and conferences. and national programmes of education on late effects care for example, study days and conferences. 15
  • 18. RCN Late effects comp 15/9/11 22:32 Page 16 The RCN represents nurses and nursing, promotes excellence in practice and shapes health policies September 2011 RCN Online www.rcn.org.uk RCN Direct www.rcn.org.uk/direct 0345 772 6100 Published by the Royal College of Nursing 20 Cavendish Square London W1G 0RN 020 7409 3333 Publication code 004 172 ISBN 978-1-906633-85-1