RCN competencies

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


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.


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


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.
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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



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



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



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



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.

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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.

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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



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


• 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), (Children's 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



1c Assessment


• 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


• 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



1e Medication


• 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


• 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



2b Transitional care – supporting patients as they move from child/adolescent-centred to
adult-orientated health care systems


• 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


• 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



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


• 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

• 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



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


• 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


• 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


• 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


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

RCN competencies

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