THE BLUEPRINT OF CARE OF BLUEPRINT THE for teenagers and young adults with cancer adults with cancer and young teenagers for THE BLUEPRINT OF CARE for teenagers and young adults with cancer THE BLUEPRINT Second edition December 2016 edition Second 2016 ©Teenage Cancer Trust OF CARE for teenagers and young adults with cancer Second edition Edited by: Sam Smith, Suzanne Mooney, Maria Cable, Rachel M Taylor 1 BIOGRAPHIES Maria Cable (RN, RNT, BSc (Hons) Cancer Suzanne Mooney Rachel Taylor Sam Smith Nursing, PGC E, MA Teaching and (MSc, MRes, MA, DipSW) (PhD, MSc, DipRes, RSCN, RGN) (MSc, BSc, RN Child, Learning in Higher Education Lecturer in Social Work and Senior Research Manager, Specialist Practitioner) Course Director- Teenage Cancer Systemic Practice and Family BRIGHTLIGHT, University College Head of Nursing and Clinical Care and Cancer Care programmes, Therapy Programmes Director, London Hospitals NHS Services, Teenage Cancer Trust Coventry University Queen’s University Belfast Foundation Trust Sam is a qualified paediatric Maria is an Oncology Nurse Suzanne is a social worker Rachel is a children and adult nurse and specialist practitioner with more than 10 years and systemic family trained nurse with over 20 who has over twenty years of clinical practice experience in psychotherapist with over years of experience working in clinical experience and was Haematology as a Clinical Nurse twenty years’ clinical practice research with young people. previously a Nurse Consultant Specialist and Unit Manager in experience with children, Rachel is currently co-ordinating for teenagers and young adults Berkshire. Since 2000, she has young people and their the national evaluation of with cancer in the health been at Coventry University families in a range of cross- teenage and young adult service before moving into as an educator focussing sector contexts including specialist cancer services across the charitable sector to lead specifically since 2005 on physical health and disability, England. She has published the development of nursing. delivering accredited and non mental health, and children’s in numerous journals and has Sam works across the whole -accredited programmes for services. Following ten years in presented at both national and of the UK and advises both an inter-professional student the voluntary sector, Suzanne international conferences. Rachel nationally and internationally body on Teenage/Young moved to hospital social work is a member of the National on teenage and young adult Adult Cancer Care. Maria is with teenagers and young Cancer Research Institutes cancer. Sam’s particular interests also involved in research and adults with cancer where she (NCRI) Psycho-oncology and are development of specialist workforce development. She sits contributed to developing TYA Survivorship Clinical Studies nursing in teenage and young on the Education Committees services in N. Ireland. In 2009, Group (CSG), Understanding adult care and leadership and of both TYAC and the European she was awarded a Research and Measuring the Consequence led the development of the Oncology Nursing Society. and Development Fellowship of Cancer and its treatment national teenage and young A big emphasis of her work is by the N. Ireland Research and subgroup and Health Services adult nurse competency and in using technology to deliver Development Office, Public Research subgroup of the NCRI career framework endorsed educational programmes and Health Agency to undertake TYA CSG. She is a Steering through the Royal College of has been bestowed a Teaching a doctoral study exploring Committee member of the Nursing. Sam was awarded the Excellence Award for this work. the wellbeing of teenagers Royal College of Nursing (RCN) European Oncology Nursing and young adults with cancer Research Society and on the Society “Lifetime Achievement and optimal hospital care, Scientific Committee of the RCN Award” 2015 for her contribution sponsored by the Belfast International Research Society to nursing in this field. Health and Social Care Trust. annual conference. Rachel Suzanne has published and is funded through an NIHR presented at national and Programme Grant for Applied international conferences. research (RP-PG-1209-10013). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. THE BLUEPRINT OF CARE for teenagers and young adults with cancer Second edition Edited by: Sam Smith, Suzanne Mooney, Maria Cable, Rachel M Taylor 1 THE BLUEPRINT OF CARE for teenagers and young adults with cancer Second edition December 2016 Edited by: Sam Smith, Suzanne Mooney, Maria Cable, Rachel M Taylor 2016 ©Teenage Cancer Trust Endorsed by TYAC 3 The BLUEPRINT OF CARE for teenagers and young adults with cancer Second edition CONTENTS 6 ACKNOWLEDGEMENTS 27 CHAPTER 3: 53 CHAPTER 5: MULTI-DISCIPLINARY TEAM STAFFING CONSIDERATIONS WORKING, MODELS OF CARE WORKFORCE NEEDS 7 FOREWORD AND PATIENT PATHWAYS 53 53 Continuous Professional LIST OF CONTRIBUTORS 27 TEENAGE AND YOUNG ADULT CANCER SERVICES Development 9 LIST OF ABBREVIATIONS 29 NHS STRUCTURE 54 LEARNING OPPORTUNITIES Spending time with young 29 TYA PRINCIPAL TREATMENT 55 10 EXECUTIVE SUMMARY CENTRES AND DESIGNATED people HOSPITALS SCOPE 55 COMMUNICATION AND 10 THERAPEUTIC RELATIONSHIPS 30 TYA KEYWORKER 10 APPROACH 56 Confidentiality and its limitations 30 CARE PATHWAYS, MODELS OF 11 CONSULTATION CARE AND CHOICE 57 Using technology as a communication tool 11 KEY MESSAGES 33 TYA MULTI-DISCIPLINARY TEAM 58 PROFESSIONAL BOUNDARIES 36 TYA MDT AND TRANSITION PATHWAYS 58 Getting too personal 59 Warning signs for crossing of 13 CHAPTER 1: 39 CHAPTER 4: professional boundaries INTRODUCTION AGE-APPROPRIATE CARE 59 STAFF SUPPORT SURVIVAL RATES FOR YOUNG TREATMENT ENVIRONMENT 13 39 SAFEGUARDING VULNERABLE PEOPLE IN THE UK 60 40 RECREATIONAL ACTIVITIES TEENAGERS AND YOUNG 14 TYA CANCER CARE IN THE UK ADULTS 41 PRIVACY AND DIGNITY AND SAME SEX 61 YOUNG PARENTS IN THE ACCOMMODATION HOSPITAL SETTING 17 CHAPTER 2: TYA DEVELOPMENT AND 41 REDUCING TIME IN HOSPITAL 63 CHAPTER 6: THE IMPACT OF CANCER 42 SETTING BOUNDARIES HOLISTIC NEEDS AND 17 YOUNG PEOPLE IN SOCIETY SUPPORTIVE CARE 43 PROVIDING AGE-APPROPRIATE INFORMATION 63 INTRODUCTION 17 YOUNG PEOPLE IN SOCIETY 63 HOLISTIC NEEDS ASSESSMENT AND CONNECTIVITY 43 NON-COMPLIANCE AND ADHERENCE – WORKING IN PARTNERSHIP WITH THE YOUNG PERSON AND 18 NEUROLOGICAL, COGNITIVE 43 UNDERSTANDING RISK-TAKING THEIR FAMILY AND PSYCHOLOGICAL CHANGES AND SUPPORTING DECISION- 64 Assessment tools 20 ADOLESCENCE AND ILLNESS MAKING Some examples of assessment Young people with cancer 64 44 tools: and risk-taking: increased PHYSICAL CHANGES AND 21 vulnerability HOLISTIC NEEDS - AREAS OF BODY IMAGE 66 CONSIDERATION BASED ON 44 Cancer diagnosis as opportunity THE IAM 22 THE PSYCHOSOCIAL IMPACT for health education OF CANCER 66 Physical well-being 44 Risk-taking behaviour and age- 22 Peer relationships appropriate care 67 Family, friends and relationships 45 Sexual behaviour and 69 Education and Work 22 Intimate relationships information needs 70 Housing, transport and finance 47 Alcohol and substance use 71 Interests, social life and peer 23 Family and sibling relationships 47 Promoting risk reduction support and overall well-being 72 Lifestyle 23 Patients who are young parents 48 FERTILITY PRESERVATION 73 Sex, sexuality and fertility 49 Male patients 24 SPIRITUALITY, FAITH AND 74 Thoughts and feelings RELIGION 50 Female patients 74 Faith, spirituality and culture 4 77 CHAPTER 7: 95 PROFESSIONAL WELL-BEING 109 Immediate family and support PROMOTING WELL-BEING network AND RESILIENCE 95 The importance of self-care 109 Supporting cancer peers when a 77 THE IMPORTANCE OF 95 Self-care in endings death occurs WELLBEING AND RESILIENCE FOR YOUNG PEOPLE WITH 97 109 Supporting staff when a young CHAPTER 8: person dies CANCER LIVING WITH AND BEYOND 77 TYA vulnerability CANCER 111 Attending funerals 77 Good outcomes are more than 97 INTRODUCTION survival 113 CHAPTER 10: 97 PREPARING FOR LIFE AFTER YOUNG PEOPLE AND 77 Current and future well-being: TREATMENT RESEARCH developing resilience 98 LIFE AFTER TREATMENT 113 RESEARCH IN THE NHS 78 POSITIVE HEALTH CONCEPTS: FROM RISK TO RESOURCE 98 Treatment Summary 113 Research governance 78 Well-being 100 Holistic Needs Assessment 115 RESEARCH ACROSS THE Resilience TEENAGER AND YOUNG ADULT 78 100 Cancer care review AGE RANGE PROMOTING WELL-BEING AND 78 Health and Well-being Clinics Research evidence in TYA RESILIENCE IN YOUNG PEOPLE 100 116 WITH CANCER 100 LATE-EFFECTS 116 Age as a barrier to taking part in The role of allied health and 78 Physical late-effects research psychosocial professionals 100 117 HEALTHCARE PROFESSIONALS 79 PSYCHOLOGICAL WELL-BEING 101 Psychosocial impact of TYA AS A BARRIER TO TAKING PART cancer survivorship IN RESEARCH 79 Clinical Psychology: working with mental health disorders and 103 LONG-TERM FOLLOW-UP 117 THE ROLE OF PROFESSIONALS promoting TYA resilience IN EVIDENCE BASED PRACTICE 79 Psychological distress 105 CHAPTER 9: 118 THE ROLE OF PROFESSIONALS PALLIATIVE AND END OF IN FACILITATING RESEARCH 81 Anxiety LIFE CARE 119 THE ROLE OF RESEARCHERS 85 Other important mental health 105 WHAT IS PALLIATIVE CARE? WORKING WITH YOUNG PEOPLE problems WHAT IS DIFFERENT ABOUT Maximising recruitment to PHYSICAL WELL-BEING 105 119 87 PALLIATIVE CARE FOR YOUNG research studies 87 Compromised well-being: The PEOPLE? physical side-effects of cancer 105 TALKING ABOUT DYING AND 123 CHAPTER 11: and treatment