Table Of ContentG
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M o d e r n D a y P r a c t i c e
Learning Disability Nursing: Modern Day Practice provides a solid foundation that
allows health care practitioners to care for and/or support people with learning disabilities
in a range of health and social care settings and scenarios.
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The book addresses learning disability nursing from various perspectives, including history E
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and modern-day practice, role in promoting health and well-being, intersection with
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mental health, addressing profound disability and people with complex needs, care across
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the lifespan, forensic settings, and the future of learning disability nursing. The book also
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includes patient perspectives and narratives as well as clinically relevant information
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linked to NMC and An Bord Altranais competencies. L E A R N I N G
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This book is essential reading for anyone studying learning disabilities as part of a I
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nursing, health, or social care course as well as a useful resource for the wider family of
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nurses and health and social care professionals at both the undergraduate and postgraduate
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D I S A B I L I T Y
levels. Those in practice will also benefit from this valuable resource. I
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Professor Bob Gates, Professor of Learning Disabilities, University of West London, UK.
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Emeritus Professor, The Centre for Learning Disability Studies, University of Hertfordshire, UK.
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Honorary Professor of Learning Disabilities, Hertfordshire Partnership University NHS
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Foundation Trust, UK.
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Kay Mafuba, PhD, Associate Professor, College of Nursing Midwifery and Healthcare, I
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University of West London, UK.
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M o d e r n D a y P r a c t i c e
Bob Gates • Kay Mafuba
K22014
L E A R N I N G
D I S A B I L I T Y
N U R S I N G
M o d e r n D a y P r a c t i c e
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L E A R N I N G
D I S A B I L I T Y
N U R S I N G
M o d e r n D a y P r a c t i c e
Bob Gates
Professor of Learning Disabilities, University of West London, Institute for Practice,
Interdisciplinary Research and Enterprise (INSPIRE); Emeritus Professor, The Centre for
Learning Disability Studies, University of Hertfordshire; and Honorary Professor of Learning
Disabilities, Hertfordshire Partnership University NHS Foundation Trust, United Kingdom.
Kay Mafuba
University of West London, United Kingdom
Boca Raton London New York
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Contents
Preface ��������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������vii
Authors ��������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������xi
Contributor �������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������xiii
1. The nature of learning disabilities and their relationship to learning
disability nursing ����������������������������������������������������������������������������������������������������������������������������������������������������������������1
Bob Gates
2. History and modern-day practice of learning disability nursing �����������������������������������������������27
Kay Mafuba
3. Learning disability nursing throughout the lifespan ��������������������������������������������������������������������������51
Kay Mafuba and Bob Gates
4. Role of the learning disability nurse in promoting health and well-being ������������������������82
Kay Mafuba
5. Learning disability nursing and mental health �������������������������������������������������������������������������������������114
Bob Gates
6. Learning disability nursing and people with profound learning
disabilities and complex needs ��������������������������������������������������������������������������������������������������������������������������146
Bob Gates
7. Learning disability nursing in forensic settings ������������������������������������������������������������������������������������179
Mick Wolverson
8. Community learning disability nursing�������������������������������������������������������������������������������������������������������207
Kay Mafuba
9. Challenging and distressed behaviour in people with learning disabilities:
The role of learning disability nursing ���������������������������������������������������������������������������������������������������������224
Bob Gates and Kay Mafuba
10. The future of learning disability nursing ����������������������������������������������������������������������������������������������������251
Kay Mafuba and Bob Gates
Appendix A: NMC competencies for entry to the register: Learning disability nursing ����������275
Appendix B: An Bord Altranais’ competencies for entry to the register �����������������������������������������279
Index ����������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������������283
v
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Preface
In recent years, learning disability nursing has moved from a narrowly defined role, within long-term
care, to a much broader role within the National Health Service in the United Kingdom, and beyond.
Hence, there is a need for a brand new learning disability textbook that will inform students and
practitioners alike of the continued development of modern-day learning disability nursing roles.
Roles that span community support specialists, liaison roles between services and agencies, transi-
tional roles, and roles in secure or forensic health settings offer support across the age continuum.
Learning disability nursing is a health profession supported and endorsed by many, as unique in
its breadth of employment base, and located as it is among the various sectors of the health and
social care economies. Uniquely, the content of this book has been benchmapped against current
Nursing and Midwifery Councils for the United Kingdom (2010) and An Bord Altranais, Ireland
(2005) standards for competence for each chapter. The nomenclature for identifying competences,
competencies and indicators uses a numbering system that can be found in Appendices A and B,
and these relate to those corresponding competencies and indicators identified at the commence-
ment of each chapter. Also at the commencement of each chapter is a helpful box that identifies
the content that the chapter will focus on, along with further reading and resources given at the
end of each chapter.
A note at the outset on terminology used in this text, generally speaking, within the United
Kingdom, the term learning disability is used to describe that group of people who have signif-
icant developmental delay resulting in arrested or incomplete achievement of the ‘normal’ mile-
stones of human development. Other terms are used elsewhere, such as developmental disability
and intellectual disability, and in the past, mental retardation and mental handicap were widely
used. Notwithstanding the wide variety of terminology, we have chosen to adopt the term learning
disability throughout this book as we believe it is still the more widely used term in the United
Kingdom. Therefore, throughout the text, the term learning disability is used; save where certain
Acts and/or other technical works require us to use another term for accuracy.
In the first chapter, the nature and manifestation of learning disabilities, along with their
relationship to learning disability nursing are explored. The second half of this chapter explores
learning disability nursing, and its strong value base, and long relationship in supporting people
with learning disabilities, their families and services, and how they can contribute to the health and
well-being of people with learning disabilities – making a small but nonetheless valuable contribution
in improving the quality of lives for this group of often marginalised and vulnerable group of people.
In Chapter 2, the long and complex history and tradition of how learning disability nurses have
supported, and continue to offer support to, people with learning disabilities and their families is
further explored, and in more detail.
In Chapter 3, the nature of learning disability throughout the lifespan and its relationship to
learning disability nursing are explored. Learning disability is a lifelong condition, and therefore it is
not unusual for learning disability nurses to work with, and/or offer support to people with learning
disabilities throughout their lifespan, quite literally from the cradle to the grave. Holistic approaches
in learning disability nursing seek to promote interventions that adopt a whole person–centred
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Preface
approach are promoted. This means providing nursing that responds to the various dimensions of
being, and these typically include attention to the physical, emotional, social, economic and spiritual
needs of people. Therefore, this chapter focuses on the knowledge as well as the kinds of practical
skills that learning disability nurses will need when working with people with learning disabilities
across their lifespan. The role of the learning disability nurse during childhood and adolescence of
people with learning disabilities is explored in the context of diagnosis of learning disability, par-
enting children with learning disabilities, transitioning, psychological and physical changes during
adolescence and transition into adulthood. The lifestyle and health needs of adults and older adults
with learning disabilities, employment and retirement, personal relationships and parenting needs
of adults with learning disabilities are explored. The chapter concludes by e xploring end-of-life
care needs, decisions and palliative care for people with learning disabilities.
In Chapter 4, the key concepts and policies in public health are included as well as the key
policy drivers that are refocusing nursing interventions to be centrally concerned with prevention
of ill health. The role of learning disability nursing in helping people with learning disabilities plan
for good health and well-being is explored in detail. Learning disability nurses’ public health roles,
and in particular the importance of health promotion in care planning, health facilitation and health
action planning will be addressed, as well as newer roles such as health liaison nursing in primary
care and acute settings. These roles are explored in the context of some well-known health issues
such as cardiovascular fitness, obesity, epilepsy, mental ill health, sexuality, diets and smoking. It is
pointed out that many of these conditions will require learning disability nurses to develop careful
and imaginative ways of constructing nursing interventions to improve and/or maintain the health
status of people with learning disabilities. This takes us to Chapter 5 where mental ill health in peo-
ple with learning disabilities is outlined. It is well known that people with learning disabilities are at
greater risk of developing mental health problems than is the general population. And because of
the high prevalence of mental health problems in this population, there is need to prepare learning
disability nurses to promote good mental health and well-being, and/or its maintenance in those
who are particularly vulnerable. In this chapter, the nature of, and manifestations of, good mental
health, as well as the manifestations of mental ill health, assessment tools used in nursing prac-
tice and how to conduct a mental state examination are all explored. A range of approaches to
treatments is outlined, as well as the Care Programme Approach. Finally, relevant mental health
legislation and assessment of mental capacity, Independent Mental Capacity Advocates (IMCAs),
Deprivation of Liberty and safeguarding issues are outlined.
Chapter 6 outlines the nature of and special needs of people with profound learning disabilities
and complex needs. It is pointed out that they likely represent one of the most marginalised and
potentially vulnerable groups of people in any society. They are at continuing risk from social exclu-
sion, and simultaneously experience poorer health than the rest of the population (Mansell, 2010).
Therefore, arguably, the role of the learning disability nurse in supporting, and where necessary
providing direct care for this group of people, is particularly relevant because of the high levels of
dependence they may have on others throughout their lives. Nursing or directed social care should
be regarded as a way of systematically planning and documenting interventions to meet the needs
of and to support this group of people in all aspects of their lives. This chapter considers both the
direct and the indirect roles of learning disability nurses in supporting and/or caring for this group
of people.
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Preface
Chapter 7 explores the key competencies, skills and the knowledge base required for learning
disability nursing in forensic settings. It is pointed out that in learning disability the term forensic
is usually applied, although not always, to people who have offended and been dealt with by the
courts. In relation to those who have not offended, the term forensic is still applied to people with
learning disabilities who present a significant risk to others, and who may commit an offence and
those who have a significant history of self-harm. Learning disability nursing in forensic settings is
a highly complex area of practice involving balancing the tensions between offering person-centred
and therapeutic care, within a framework of a contemporary rights culture, and the need to manage
risk within controlling systems and environments. People with learning disabilities and forensic his-
tories have a diverse range of complex needs and their behaviours constitute a risk, and often result
in offending that include arson, sexually inappropriate behaviour, physical aggression, destruction
of property and self-harming behaviours. It is pointed out that causation of these behaviours is
often extremely complex, with a multifactorial range of other contributory factors that includes
dual diagnosis of mental disorder and learning disabilities, the presence of autism or Asperger syn-
drome, acquired brain injury and psychosocial issues such as dysfunctional family dynamics, abuse
and institutionalisation.
In Chapter 8, community learning disability nursing is explored in some detail and depicts its
practice as typically working with a wide cross section of people with learning disabilities and
agencies. This chapter, therefore, explores current and changing roles of learning disability nurses
working in the community. It is pointed out that, depending on local configuration of services, they
can often occupy a number of new and exciting roles. Many, for example work as specialist practi-
tioners, and will work on time-limited interventions that can include personal and sexual relation-
ships in people with learning disabilities, challenging behaviours, teaching direct carers, managing
groups, dealing with loss and bereavement issues, working in multidisciplinary teams, assessing
individuals, supporting clients, working as epilepsy specialists, facilitating self-advocacy groups
and helping people access mainstream services. This chapter will serve as a template for good
care planning within the context of community learning disability teams and/or where nurses are
attached to Local Authorities, NHS Trusts. Current health and social policy, for example, Clinical
Commissioning, will inevitably make further demands on the development on everyday practice of
learning disability nurses working in the community; seemingly the public health agenda is becom-
ing central to the role of this group of health care workers.
In the penultimate chapter, the support of people with learning disabilities who present with
challenging and/or distressed behaviour by learning disability nurses is presented. The chapter
promotes the unique contribution that learning disability nursing can provide in promoting holistic
support, whilst drawing from a strong value and professional base. It is pointed out that understand-
ing challenging and/or distressed behaviour in people with learning disabilities is problematic, and
managing such behaviours has been the subject of much past and recent controversy. This chapter
asserts that the management and support of individuals with learning disabilities who present with
challenging behaviours are of critical importance to learning disability nurses; this is because the
collective professional integrity of this specialist field of nursing can easily be contaminated by the
few who choose not to practice within an ethical and legal framework of nursing practice. Crucially,
that is why this chapter focuses on the knowledge and practical skills that learning disability nurses
will need to meet the needs of people with learning disabilities who present with challenging and/
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