Learning Disability Nursing at a Glance E-Book

Bob Gates

• Herausgeber: John Wiley & Sons
• Kategorie: Fachliteratur
• Sprache: Englisch

Seitenzahl: 459

Veröffentlichungsjahr: 2015

Beschreibung

Learning Disability Nursing at a Glance is the perfect companion for study and revision from the publishers of the market-leading at a Glance series. This visual, dynamic and user-friendly resource addresses the key principles underpinning contemporary learning disability nursing practice, relates them to key clinical practice issues, and explores them in the context of maintaining health and well-being. Exploring the full spectrum of care, this textbook addresses the needs of people with learning disabilities across the life span, from children through to adolescents and on to adults and older people. Aimed at nursing, health and social care students, as well as registered nurses, this is an invaluable resource for all those looking to consolidate and expand their knowledge, in order to provide safe, effective and compassionate care to people with learning disabilities. * The perfect revision and consolidation textbook * Highly visual colour presentation, with full colour illustrations throughout * Includes expert contributions from learning disability academic staff as well as clinicians * Embraces both primary and secondary care perspectives * Supported by a companion website featuring case studies to further test your knowledge * Available in a range of digital formats- perfect for 'on the go' study and revision This title is also available as a mobile App from MedHand Mobile Libraries. Buy it now from iTunes, Google Play or the MedHand Store.

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Learning Disability

Nursing

at a Glance

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Learning

Disability

Nursing

at a Glance

Edited by

Bob Gates

Professor of Learning Disabilities

Institute for Practice, Interdisciplinary Research

and Enterprise (INSPIRE)

University of West London; and

Emeritus Professor

The Centre for Learning Disability Studies

University of Hertfordshire; and Honorary

Professor of Learning Disabilities at the

Hertfordshire Partnership University NHS

Foundation Trust

Debra Fearns

Senior Lecturer and Field Lead for LD Nursing

Degree

The Centre for Learning Disability Studies

University of Hertfordshire

Jo Welch

Senior Lecturer

The Centre for Learning Disability Studies

University of Hertfordshire

This edition first published 2015 © 2015 by John Wiley & Sons, Ltd.

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Library of Congress Cataloging-in-Publication Data

Learning disability nursing at a glance / [edited by] Bob Gates, Debra Fearns, Jo Welch.

  p. ; cm. – (At a glance series)

 Includes bibliographical references and index.

 ISBN 978-1-118-50613-4 (pbk.)

I. Gates, Bob, 1955- editor. II. Fearns, Debra, editor. III. Welch, Jo, editor.

IV. Series: At a glance series (Oxford, England)

 [DNLM: 1. Learning Disorders–nursing. WY 160.5]

 RC394.L37

 616.85′8890231–dc23

2014023098

A catalogue record for this book is available from the British Library.

Wiley also publishes its books in a variety of electronic formats. Some content that appears in print

may not be available in electronic books.

Cover image: © Christopher Futcher/i-Stock

Cover design by Meaden Creative

Set in 9.5/11.5pt Minion by SPi Publisher Services, Pondicherry, India

1 2015

Contents

Contributorsviii

Prefacexi

How to use your revision guidexiii

About the companion websitexvii

Part 1Introduction to learning disability nursing1

1What is learning disability nursing?2

2Nursing and midwifery standards4

3The six Cs6

4The student nurse perspective7

Part 2Exploration of learning disability9

5What is a learning disability?10

6Causes of learning disability12

7Chromosomal disorders14

8Genetic disorders16

9Other causes of learning disability18

Part 3Childhood development21

10Screening and genetics22

11Developmental milestones24

12Common childhood diseases26

13Developing communication28

14Learning through play30

15Education32

16Screening for autistic spectrum conditions34

17Safeguarding children36

Part 4Adolescence39

18Puberty40

19Bullying42

20Child and adolescent mental health services44

21Transitions46

Part 5Adults with a learning disability49

22Working with adults with learning disability50

23Communicating with people with learning disability52

24Sensory impairment54

25Living with autistic spectrum conditions56

26Epilepsy in adults with learning disability58

27Management of epilepsy60

v

Part 6People with a learning disability and additional mental

health needs63

28Managing challenging behaviour64

29Mental health issues66

30Personality disorder68

31Offenders with a learning disability70

Part 7Vulnerable adults with a learning disability73

32Mental Capacity Act74

33Human rights76

34Equality Act 201078

35Mental Health Act80

36Ethics, rights and responsibilities82

Part 8Biophysical aspects of learning disability nursing85

37Biophysical aspects of learning disabilities86

38Common health issues88

39The Health Action Plan90

40Pain assessment and recognition92

41Palliative and end-of-life care94

42Dementia in people with Down’s syndrome96

43Sexual health issues98

44Postural care100

Part 9Older people with a learning disability103

45Older people with a learning disability104

46Dementia care106

47The Mental State Examination108

Part 10Medication111

48Antidepressant and antipsychotic drugs112

49Antiepileptic drugs114

50Nurse prescribing116

51Drug calculations118

Part 11The learning disability nurse121

52The community learning disability nurse122

53Healthcare facilitators124

54The health liaison nurse126

55The assessment and treatment learning disability nurse128

56The prison nurse130

Part 12Inclusion133

57Person centred planning134

58Employment136

59Housing and leisure138

60Ethnic minorities and learning disability140

61Parents with a learning disability142

vi

62Family perspectives144

63A service user’s perspective146

64Advocacy148

65Health passports150

66Hate crime151

67Sex and individuals with a learning disability152

68Spirituality154

69The twenty-first century: Networking for success155

Further reading and resources157

Index161

vii

Contributors

Samuel Abdulla

Community Learning Disability Nurse

Associate Lecturer in Learning Disability Nursing

Edinburgh Napier University

Vicky Avellino

RNLD

Senior Nurse Team leader

Southern Health Foundation NHS Trust

Carol Bailey

Consultant Nurse: Learning Disabilities

Clinical Service Director (Hampshire)

Learning Disability Division

Southern Health NHS Foundation Trust

Jo Ball

Senior Occupational Therapist

Solent NHS Trust

Cheryl Beatie

Honorary Fellow

School of Nursing (Learning Disability)

University of Hertfordshire

Deborah Birtchnell

Nursing Sister

HMP The Mount

Hertfordshire

Diana Boyce

Senior Locality Community Learning Disability Nurse

Southern Health NHS Foundation Trust

Jenna Braddick

Speech and Language Therapist

Hertfordshire Partnership Foundation Trust

Noel Burke

Community Learning Disabilities Staff Nurse

Southampton City Community Learning Disability Team

Claudia Camden-Smith

Higher Specialty Trainee in Psychiatry of Intellectual

Disability

Wessex Deanery

Emily Casserly

Nurse Practitioner, RNMH

Edinburgh Napier University

Rebecca Chester

Professional Lead Nurse – Learning Disabilities

Berkshire Healthcare NHS Foundation Trust

Lecturer Practitioner in Learning Disability Nursing

the Centre for Learning Disability Studies

University of Hertfordshire

Anita Claridge-Lawrence

Sexual Health Facilitator (Learning Disability)

North Essex

David Clark

Student Learning Disability Nurse

University of Hertfordshire

Sarah Clayton

Managing Director

Postural Care Community Interest Company

Christine Cole

Clinical Epilepsy Specialist Nurse

Barnet Learning Disability Service

Central London Community Health Care

Natasha Collins

Community Learning Disability Nurse

Adult Learning Disability Team

Bedford Borough Council

Ruth Cooper

Clinical Nurse Specialist – Sensory Impairment, and

Independent Nurse Prescriber

Services for People who have a Learning Disability

South Essex Partnership NHS Foundation Trust

Lisa Dexter

Community Learning Disability Nurse Specialist (North Essex)

Hertfordshire Partnership University Foundation Trust

Jennifer Dolman

Consultant Psychiatrist Learning Disabilities

Southern Health NHS Foundation Trust

viii

Mary Donnelly

Senior Lecturer in Children’s Health

University of Hertfordshire

Terri Dorman

Clinical Group Manager for Learning Disability

Services for People who have a Learning Disability (SEPT)

Bedfordshire

Catherine Dunne

Student Health Visitor

the Centre for Learning Disability Studies

University of Hertfordshire

Debra Fearns

Senior Lecturer

Learning Disability Nursing

the Centre for Learning Disability Studies

University of Hertfordshire

Joanne Fisher-Joannides

Forensic Liaison Nurse

Hertfordshire Partnership NHS Foundation Trust

HMP The Mount

Natasha Fletcher

Community Nurse (Learning Disability)

Adult Learning Disability Team (ALDT)

Bedford Borough Council

Sarah Futcher

Community Learning Disabilities Staff Nurse

Southampton

Bob Gates

Professor of Learning Disabilities

Institute for Practice, Interdisciplinary Research

and Enterprise (INSPIRE)

University of West London; and

Emeritus Professor

The Centre for Learning Disability Studies

University of Hertfordshire

Elizabeth Gormley-Fleming

Principal Lecturer, Learning and Teaching

Senior Lecturer, Children’s Nursing

University of Hertfordshire

Aidan Graham

Senior Nurse Practitioner, RNLD

Bluebird House

Bournemouth University

James Hawkins

Deputy CEO

Young People’s Service Manager

Respond

London

Sarah Holmes

Community Learning Disability Nurse

Bedford Borough Council

Joanne James

Company Director of EC Consultancy Ltd

Rotherham School of Nursing

University of Sheffield

Jennifer Jones

Southampton City Community Learning Disability Team

Nichola Keer

Adult Safeguarding Lead Nurse

Bedford Hospital

Sandra Kelly

Lead Community Learning Disability Nurse (North)

Cambridge and Peterborough Foundation

Trust (CPFT)

Amanda Keighley

Principal Lecturer/Academic Group Lead

the Centre for Learning Disability Studies

University of Hertfordshire

Paul Maloret

Senior Lecturer in Learning Disabilities

University of Hertfordshire

Daniel Marsden

Practice Development Nurse for People with

Learning Disabilities

East Kent Hospitals University NHS

Foundation Trust

William Harvey Hospital

Ashford

Gweneth Moulster

Clinical Director/Consultant Nurse

South Staffordshire and Shropshire NHS

Foundation Trust;

Honorary Teaching Fellow

University of Hertfordshire

Helen Murray

Visiting Lecturer

University of Hertfordshire

David O’Driscoll

Psychotherapist

Specialist Learning Disability Service

Hertfordshire Partnership University

NHS Foundation Trust;

Visiting Research Fellow

the Centre for Learning Disability Studies

University of Hertfordshire

ix

Mary O’Toole

Sibling to Anne, who has Learning Disabilities

Honorary Fellow (Family Advocate)

the Centre for Learning Disability Studies

University of Hertfordshire

Michelle Parker

RNLD Exemplar Health Care

University of York

Maggie Jones

Senior Lecturer in Learning Disability Nursing

the Centre for Learning Disability Studies

University of Hertfordshire

Sheila Roberts

Senior Lecturer in Children’s Nursing

University of Hertfordshire

Florence Sayekaya

Forensic Specialist Nurse Practitioner, Learning Disabilities

Southern Health NHS Trust

Tracey-Jo Simpson

Visiting Lecturer

the Centre for Learning Disability Studies

University of Hertfordshire

Paul Smith

Transition Nurse

Royal Free NHS Foundation Trust.

Visiting Lecturer in Learning Disability Nursing

the Centre for Learning Disability Studies

University of Hertfordshire

Rooja Sooben

Visiting Lecturer in Learning Disability

University of Hertfordshire

Mohammad Surfraz

Senior Lecturer

Learning Disability Nursing

School of Health and Social Work

the Centre for Learning Disability Studies

University of Hertfordshire

Gamuchirayi Tendayi

Senior Lecturer in Learning Disability Nursing

the Centre for Learning Disability Studies

University of Hertfordshire

Melanie Webb

Locality Senior Nurse North Hampshire / Nurse Prescriber

Learning Disability Division

Southern Health Foundation NHS Trust

Anne Webster

Manager/ Learning Disability nurse, Hertfordshire Partnership

University NHS Foundation Trust.

Honorary Fellow

the Centre for Learning Disability Studies

University of Hertfordshire

David Weinrabe

Formerly Principal Lecturer in Learning Disability

Nursing and Healthcare

University of Hertfordshire

Jo Welch

Senior Lecturer Learning Disability Nursing

Facilitator Positive Choices Network

the Centre for Learning Disability Studies

University of Hertfordshire

Alison Williamson

Senior Lecturer in Learning Disability Nursing

the Centre for Learning Disability Studies

University of Hertfordshire

Sally Wilson

Acute Liaison Nurse

Coventry and Warwickshire Partnership Trust

Melissa Wilton

Staff Nurse

Hertfordshire Partnership University NHS

Foundation Trust

x

Preface

It is with enormous pride that we offer this new and exciting

book – Learning Disability Nursing at a Glance; one that is in

a series of popular nursing texts. The aim of this book is to

provide learning disability nursing students with user-friendly,

contemporary information in relation to some of the key clinical

practice issues that they may encounter when working with people

with learning disabilities. At the outset we need to make clear our

use of terminology in this text. Generally speaking within the

UK, the term ‘learning disability’ is used to describe people

with significant developmental delay that results in arrested or

incomplete achievement of the ‘normal’ milestones of human

development. The term 'learning disabilities' is also used elsewhere

throughout the world, but it holds different meanings in many

other countries; paradoxically so too in the UK. It is this difference

in meaning that causes confusion to, what we hope, will be an

international audience of readers. Elsewhere in the world

alternative terms to ‘learning disability’ are used, such as ‘mental

retardation’, and ‘mental handicap’, but these terms are felt to

portray negative imagery concerning people with learning

disabilities. There are more positive international terms in use,

such as ‘intellectual disability’ and ‘developmental disability’ but

we have decided to adopt the consistent use of a term which we

believe seems most appropriate to this text, and for the readership,

as well as those who this book is principally about, and that is

‘learning disability’. Therefore, throughout the remainder of this

book we will only use the term learning disability, save where

certain Acts and, or, other technical works require other

terminology for accuracy.

The text has been edited using expert contributions from

learning disability academic staff as well as clinicians. While there

are currently a number of texts available that describe nursing

practice from an adult perspective, there are few that deal with

practice specifically related to people with learning disabilities. And

indeed fewer still that address the needs of people with learning

disabilities across the life spectrum, from children through to

adolescents and on to adults and older people. Also, many of the

current texts related to people with learning disabilities that are

available tend to deal with the subject of learning disabilities, rather

than learning disability nursing; this book does both. Uniquely, the

book is aimed at health and social care students, as well as registered

nurses, but will be of use to a wide range of other students from a

wide variety of vocational, academic and professional backgrounds,

and other fields of nursing. Principally the book is intended to

provide nursing students with material that is accessible, up to date,

and readily available. The text addresses the principles underpinning

contemporary learning disability nursing practice that students

are likely to encounter, and these are discussed in the context of

maintaining health and wellbeing. And in order to reflect the

contemporary field of learning disability nursing practice, the text

embraces both primary and secondary care perspectives. Learning

disability nurses can now be found working and supporting people

in diverse care contexts, such as community learning disability

teams, treatment and assessment services, outreach services,

residential settings, day care and respite services, health facilitation

and hospital liaison roles, mental health and, or, challenging

behaviour services, special schools and specialist services for people

who can be located on the spectrum of autistic conditions.

Additionally, they can be found working for many different agencies

and organisations, such as health, social care, education and the

independent sector (this comprises the private, voluntary and

not-for-profit organisations), and also alongside numerous other

professional disciplines that include clinical psychologists, social

workers, occupational therapists, speech and language therapists,

and consultant psychiatrists in learning disabilities as well as a

range of professionals within mainstream health, social services

and education. Given this complexity, there is need for a text that

holds an overarching aim of helping learning disability nursing

students understand fundamental aspects of their practice, in order

to provide safe, effective and compassionate care to people with

learning disabilities in a variety of situations. From an academic

perspective, there is often a lot of support available to learning

disability nursing students for their academic assessment and

progression. However, when in practice, learning disability nursing

students may find themselves being supervised from a distance

and, as such, this proposed text could accompany them in a variety

of settings to assist their integration of theory and practice. This text

is based upon the principles of care; a foundation text to encourage

the learning disability nursing student to grow and develop.

The book has been designed to be used as a quick reference

guide in either practice settings, educational establishments or at

home and has been written in easy-to-understand language,

drawing heavily on diagrams and pictures to support visual

learners. Therefore it is not intended that you read this book from

cover to cover in one sitting, rather – as its name implies – the text

should be seen as an ‘at a glance’ guide or manual.

The book is divided into 12 parts, each containing a variable

number of chapters that relate to the theme of that part. The parts

of the book include: an introduction to learning disability nursing,

an exploration of learning disability, childhood development,

adolescence, adults with a learning disability, people with a learning

disability and additional mental health needs, vulnerable adults

with a learning disability, biophysical aspects of learning disability

nursing, older people with a learning disability, medication, the

learning disability nurse and issues of inclusion.

xi

We hope that Learning Disability Nursing At A Glance will come

to be seen as a highly regarded textbook, not only in the field of

learning disabilities but also more widely, and that it will be used

widely by the many professionals and students from a wide range

of different professional and academic backgrounds. We believe

that the excellent end product that you have before you is due, in

no small part, to the excellent contributions that have been made

by our many friends and colleagues across the UK and Southern

Ireland, and we offer our thanks for contributing to this book. We

hope that you find the book helpful and that through using it, in

some small way, it assists you in supporting people with learning

disabilities enjoy good health and wellbeing in their lives.

Bob Gates

Debra Fearns

Jo Welch

xii

How to use your

revision guide

Features contained within your revision guide

The overview page gives a

summary of the topics covered in

each part.

Each topic is presented in a

double-page spread with clear,

easy-to-follow diagrams

supported by succinct

explanatory text.

xiii

Summary boxes remind you

about key points to remember.

The website icon indicates that

you can find accompanying

resources on the book’s

companion website.

xiv

Text not available in this digital edition.

xv

Text not available in this digital edition.

xvi

About the

companion website

Don’t forget to visit the companion website for this book:

www.ataglanceseries.com/nursing/

learningdisability

There you will find case studies to test your knowledge.

Scan this QR code to visit the companion website.

xvii

Part 1

Introduction to learning

disability nursing

Chapters

1What is learning disability nursing?2

2Nursing and midwifery standards4

3The six Cs6

4The student nurse perspective7

Don’t forget to visit the companion website for this book at

www.ataglanceseries.com/nursing/learningdisability to

do some practice cases on these topics.

1

2Part 1 Introduction to learning disability nursing3The result is a positive contribution of the learning disability nurse to thehealth and wellbeing of people with learning disabilities to enjoy quality livesThe learning disability nurse:Assesses the social andhealthcare needs of peoplewith learning disabilityWorks with people withlearning disability, and theirfamily, to provide the levelof support required, acrossthe life spanPrepares and deliversrobust care plans basedon a systematic nursingassessmentUses their skills as manager,enabler and co-ordinatorof servicesWorks both independentlyand as part of a teamof healthcare andsupport providersSupports parents whenchildren are young,adolescents, adults

Introduction

Learning disability nursing is a person-centred profession whose

primary aim is to support people with learning disabilities either

directly or indirectly through improving or maintaining their

health and wellbeing, and bringing about their social inclusion in

their communities.

What do learning disability nurses do?

Learning disability nurses work with people with learning disabili-

ties from birth through to death, those who may require a range of

supports throughout their lives. This support will range from none,

or minimal, support through to intensive holistic nursing care

aimed at meeting the multidimensional needs of people with learn-

ing disabilities. Much of the care planning and delivery of learning

disability takes place in local community settings. Learning disabil-

ity nurses must be competent in preparing robust, professionally

prepared care plans based on a systematic nursing assessment.

Much evidence exists of the positive contribution of learning disa-

bility nurses to the lives of people with learning disabilities. Learning

disability nurses currently work in a wide range of organisational

settings that include the NHS, local authorities and the third sector.

Typically they are likely to work in inter-professional teams and for

a variety of agencies. Recent changes in health and social care are

dictating new and exciting roles that are being undertaken by learn-

ing disability nurses, for example nurses working in mainstream

healthcare teams in acute hospitals, mental health services and pri-

mary care. The Strengthening the Commitment Learning Disability

Nursing (UK, Chief Nursing Officers, 2012) report has asserted that

learning disability nurses are needed to ensure that people with

learning disabilities of all ages, today and tomorrow, have access to

the expert learning disabilities nursing they need, want and deserve.

Three primary areas of practice in the NHS are:

•Health facilitation – supporting mainstream access.

•Inpatient services – for example, assessment and treatment, and

secure services.

•Specialist roles – in community learning disability teams.

Other, broader, developments in healthcare roles, such as the

modern matron, specialist epilepsy nurses and nurse prescribers

are all providing new areas of practice for learning disability

nurses. Also learning disability nurses work as consultants who are

able to offer valuable clinical, supervisory expertise along with

both regional and national professional leadership.

The purist form of nursing – the context

of learning disability nursing

Learning disability nursing is often referred to as the purist form of

nursing; unlike colleagues in other fields of nursing, they do not

concentrate on specific manifestations of physical ill health or

trauma, or mental health and wellbeing, or children, or childbirth

for that matter; rather they offer support to people with learning

disabilities, and their families that is all embracing and quite

literally from the cradle through to the grave. In order to offer

competent, compassionate and comprehensive nursing interven-

tions that meet the multidimensional needs of people with learning

disability, it is helpful to adopt a structured approach to working. A

comprehensive needs assessment (physical, psychological, social,

spiritual and emotional) should first be completed. If a nurse is

required to work with someone with learning disabilities and their

family, it is necessary that their needs are assessed and incorpo-

rated into an individual care plan, taking their desires, wishes and

aspirations into account. The nurse must work closely with the

client’s family, care providers, and other professionals, as this

approach will bring very important and essential information, as

well as informing the development of a care plan, its approach,

delivery and management. This detailed assessment is followed by

the construction of a written care plan that is implemented, and

followed up with ongoing review/s and evaluation/s. This very

structured approach, using partnership working, and incorporat-

ing the multidimensionality of people, coupled with the person at

the heart of planning, ensures that learning disability nurses

provide holistic person-centred care and support.

A modelled approach

In response to social and political influences, learning disability

care and models of support, care planning has changed considera-

bly over recent years, as has the practice of learning disability

nurses. For example, during the last century, many people with

learning disabilities were located in asylums and, or, long-stay

hospitals that were dominated by a medical model of care, empha-

sising the biological needs of people, and the need to ‘cure’ physical

problems. Most people with learning disabilities have now moved

out of long-stay hospitals, but there remains a concern that the

powerful effects of the medical model may continue to influence

care provided in smaller community-based residences. It has been

argued that the use of the medical model in the past pathologised

and objectified people with learning disabilities, leading to them

being seen as ‘less than human’. Therefore, nurses need to consider

adopting a ‘nursing model’ to guide their care in practice, to ensure

that they offer holistic nursing support. The use of any model must

hold the person with learning disabilities central to the care

planning process, and all must be mindful that they use a model to

promote what is best for that person. There are numerous nursing

models that can be adapted and used in health and social care

settings. Some nursing models are regularly used in learning

disability nursing practice. An example of a useful nursing model is

that of Roper, Logan and Tierney (2002) this is well known and

widely used within nursing profession. The model focuses on

holistic care and is based on the concept of health rather than

illness and disease. The model focuses on understanding the needs

of people in terms of the activities of daily living they perform. The

model embraces the idea that independence and dependence oper-

ate along a continuum relating to each activity of living separately.

43The following outlines specific learning disability competencies for entry onto the NMC register and is not acomprehensive guide to ALL the nursing requirements necessary for registration (2010).Nursing and Midwifery Council standards for pre-registration nursing: learning disability nursingAll nurses and midwives are requiredto comply with The Code:Standards of conduct, performanceand ethics for nurses and midwives(NMC 2008) (the code)The public can be confident that allnew nurses will deliver high qualityessential care to all deliver complexcare to service users in their field ofpracticeAct to safeguard the public, and beresponsible and accountable for safe,person-centred, evidence-basednursing practiceAct with professionalism and integrity,and work within agreed professional,ethical and legal frameworks andprocesses to maintain andimprove standardsPractise in a compassionate,respectful way, maintainingdignity and wellbeing andcommunicating effectivelyAct on their understanding

Learning disability nursing: specific

competencies for entry to the register

Professional values

Learning disabilities nurses must promote the individuality,

independence, rights, choice and social inclusion of people with

learning disabilities and highlight their strengths and abilities at all

times while encouraging others do the same. They must facilitate

the active participation of families and carers.

Learning disabilities nurses must understand and apply current

legislation to all service users, paying special attention to the pro-

tection of vulnerable people, including those with complex needs

arising from ageing, cognitive impairment, long-term conditions

and those approaching the end of life.

Learning disabilities nurses must always promote the autonomy,

rights and choices of people with learning disabilities and support

and involve their families and carers, ensuring that each person’s

rights are upheld according to policy and the law.

Learning disabilities nurses must use their knowledge and skills to

exercise professional advocacy, and recognise when it is appropri-

ate to refer to independent advocacy services to safeguard dignity

and human rights.

Learning disabilities nurses must recognise that people with

learning disabilities are full and equal citizens, and must promote

their health and wellbeing by focusing on and developing their

strengths and abilities.

Communication and interpersonal skills

Learning disabilities nurses must use complex communication

and interpersonal skills and strategies to work with people of all

ages who have learning disabilities and help them to express

themselves. They must also be able to communicate and negotiate

effectively with other professionals, services and agencies, and

ensure that people with learning disabilities, their families and

carers, are fully involved in decision-making.

Learning disabilities nurses must use the full range of person-

centred alternative and augmentative communication strategies

and skills to build partnerships and therapeutic relationships with

people with learning disabilities.

Learning disabilities nurses must be able to make all relevant infor-

mation accessible to and understandable by people with learning dis-

abilities, including adaptation of format, presentation and delivery.

Learning disabilities nurses must use a structured approach to

assess, communicate with, interpret and respond therapeutically

to people with learning disabilities who have complex physical and

psychological health needs or those in behavioural distress.

Learning disabilities nurses must recognise and respond

therapeutically to the complex behaviour that people with learning

disabilities may use as a means of communication.

Nursing practice and decision making

•Learning disabilities nurses must have an enhanced knowl-

edge of the health and developmental needs of all people with

learning disabilities, and the factors that might influence them.

They must aim to improve and maintain their health and inde-

pendence through skilled direct and indirect nursing care. They

must also be able to provide direct care to meet the essential and

complex physical and mental health needs of people with learn-

ing disabilities.

•Learning disabilities nurses must be able to recognise and

respond to the needs of all people who come into their care includ-

ing babies, children and young people, pregnant and postnatal

women, people with mental health problems, people with physical

health problems and disabilities, older people, and people with

long-term problems such as cognitive impairment.

•Learning disabilities nurses must use a structured, person-cen-

tred approach to assess, interpret and respond therapeutically to

people with learning disabilities, and their often complex, pre-

existing physical and psychological health needs. They must work

in partnership with service users, carers and other professionals,

services and agencies to agree and implement individual care plans

and ensure continuity of care.

•Learning disabilities nurses must lead the development, imple-

mentation and review of individual plans for all people with learn-

ing disabilities, to promote their optimum health and wellbeing

and facilitate their equal access to all health, social care and spe-

cialist services.

•Learning disabilities nurses must work in partnership with

people with learning disabilities and their families and carers to

facilitate choice and maximise self-care and self-management and

coordinate the transition between different services and

agencies.

Leadership, management and team working

•Learning disabilities nurses must exercise collaborative man-

agement, delegation and supervision skills to create manage and

support therapeutic environments for people with learning

disabilities.

•Learning disabilities nurses must take the lead in ensuring

that people with learning disabilities receive support that crea-

tively addresses their physical, social, economic, psychological,

spiritual and other needs, when assessing, planning and deliv-

ering care.

•Learning disabilities nurses must provide direction through

leadership and education to ensure that their unique contribution

is recognised in service design and provision.

•Learning disabilities nurses must use data and research findings

on the health of people with learning disabilities to help improve

people’s experiences and care outcomes, and shape future

services.

•Learning disabilities nurses must use leadership, influencing

and decision-making skills to engage effectively with a range of

agencies and professionals. They must also be able, when needed,

to represent the health needs and protect the rights of people with

learning disabilities and challenge negative stereotypes.

•Learning disabilities nurses must work closely with stakehold-

ers to enable people with learning disabilities to exercise choice

and challenge discrimination.

63Part 1 Introduction to learning disability nursing

We need a common patient centered culture which produces, at the

very least, the fundamental standards of care to which we are all

entitled, at the same time as celebrating and supporting the provision

of excellence in healthcare, (Francis, 2013).

Compassionate care and nursing makes all the difference to the

experience of individuals. This requires that safe, high quality,

compassionate care must be at the heart of everything we do, con-

tinually striving to improve, and speaking out if they witness

standards which are wholly unacceptable.

Essential to creating a positive culture of safe, compassionate

care is real, effective staff engagement to meet the demands of

Francis. Compassionate care must be at the centre of everything

the NHS does. This involves a clear and well-functioning system of

accountability.

Safeguarding the health and wellbeing of those in your care

means these people should not be exposed to abuse. Abuse is

defined as ‘a violation of an individual’s human and civil rights

by any other person or persons'. (No Secrets, DOH, 2000/Raising

concerns: Guidance for nurses and midwives, NMC, 2013)

The 6 Cs

Care

Care is our core business and that of our organisation and the care

we deliver helps the individual person and improves the health of

the whole community. Caring defines us and our work. People

receiving care expect it to be right for them, consistently, through-

out every stage of their life.

Compassion

Compassion is how care is given through relationships based on

empathy, respect and dignity – it can also be described as intelli-

gent kindness, and is central to how people perceive their care.

Competence

Competence means all those in caring roles must have the ability

to understand an individual’s health and social needs and the

expertise, clinical and technical knowledge to deliver effective care

and treatments based on research and evidence.

Communication

Communication is central to successful caring relationships and to

effective team working. Listening is as important as what we say

and do and essential for ‘no decision about me without me’.

Communication is the key to a good workplace with benefits for

those in our care and staff alike.

Courage

Courage enables us to do the right thing for the people we care for,

to speak up when we have concerns and to have the personal

strength and vision to innovate and to embrace new ways of

working.

Commitment

A commitment to our patients and populations is a cornerstone of

what we do. We need to build on our commitment to improve the

care and experience of our patients, to take action to make this

vision and strategy a reality for all and meet the health, care and

support challenges ahead.

Why the 6Cs are needed

In order to maximise wellbeing and improve health outcomes, we

will develop skills as health promoting practitioners, making every

contact count for people. Learning disability nurses work in ways

to reduce the health inequalities experienced by people with a

learning disability and consider quality of care is as important as

the quality of treatment. When a person reflects on their contact

with a nurse they think about other issues as well – the environ-

ment they received care in; whether they were treated kindly, with

respect and dignity; and whether they had to tell their story more

57Chapter 4 The student nurse perspective

Universal issues

There are issues that are universal to all higher education under-

graduate students, such as taking three years out of your life with

no guarantees about what a degree may mean for the future.

However, the education and learning processes prepare us to

be lifelong learners – which everyone needs to be to advance

career aspirations and goals. Then there are the challenges of

negotiating your way around a large geographical area with

seemingly endless corridors that feel like they go nowhere you

need to be! And also developing the necessary skills to access

the computer network; this is where you communicate with the

university with regards to registration, modules, timetables and

contacting tutors.

Student nurse issues

There are particular considerations in being a student nurse; unlike

most students our fees are funded by the National Health Service

and we are also paid a bursary. However, we work in real environ-

ments with real people. We study a longer academic year compared

with non-nursing students: 47 weeks a year not 39. Doing assign-

ments and reflective work can be difficult when you start but gets

easier and improves our practice as time goes on and there is lots

of advice available should you choose to access it.

Nursing is a value-based vocation. The Nursing and Midwifery

Council (NMC) set out a statutory framework and publishes

guidance from which we work. The NMC decide upon our

training needs, they set out rules about our expected behaviours

wherever we are in our professional and private lives. The Royal

College of Nursing (RCN) represents all student and qualified

nurses in respect of working conditions and pay. The RCN

publishes guidelines about private and professional standards

of behaviour. The RCN provides telephone and face-to-face

personal representation. The RCN publishes journals for every

imaginable type of nurse, from students in discrete fields to very

senior managers; these publications provide access to further

training and development.

Individual circumstances

There are also our individual circumstances: students in our

groups range from recent school leavers to the more mature. Group

members bring different qualities, experiences and motivations for

wanting to be learning disabilities nurses. They represent many

ethnic backgrounds, and have unique domestic circumstances;

we have found that students develop supportive relationships,

including study and revision groups.

The service user

Then there are the patients, clients and service users … labelled

according to the placement setting. The fun and interesting part

for us is getting to know all the people we are going to work with;

and recognising that people who have learning disabilities invest

time and energy in developing relationships with us too. This

can represent the main privileges and responsibilities of the

training. As students, we become aware that people who have

learning disabilities may have had a long care career with fre-

quent staff turnover which can impact their lives. We hope the

frequent rotation of student nurses introduces positive and

interesting experiences for them. We get to know peoples’ most

intimate information, become involved in their intimate care,

their social and family networks; we get to write about their

daily lives and relationships. This all requires skills, knowledge

and values to respect the individuality and confidentiality of the

person we are working with.

Placements

Going out to placement settings can be an exciting and challeng-

ing opportunity. We need to slot in, and to find our place, quickly

in long established teams for relatively short periods of time. At

the same time we are trying to reconcile and link theory and

practice whilst getting skills ‘signed off.’ We have a lot of compe-

tencies to accomplish and we need to satisfy our mentors that we

are safe practitioners. Mentors are continually assessing our pro-

gress from their own observations or those of the qualified staff

that we work with. At the end of placement, mentors provide a

professional written opinion on the skills, knowledge and values

that we have demonstrated. This is a permanent record about

our achievements. An important consideration of being on

placement is that we are working with potential colleagues and

employers, and as we come closer to qualifying this becomes

more significant. Student nurses’ education and training records

have a significant purpose with an end view to us becoming

competent and reliable practitioners. Due to this we feel that it is

important to begin with, and continue to present, a professional

approach to the academic and practical aspects of the training.

Finally, we think that attending tutorials regularly and submit-

ting assignments on time demonstrates time management and

Part 2

Exploration of

learning disability

Chapters

5What is a learning disability?10

6Causes of learning disability12

7Chromosomal disorders14

8Genetic disorders16

9Other causes of learning disability18

Don’t forget to visit the companion website for this book at

www.ataglanceseries.com/nursing/learningdisability to

do some practice cases on these topics.

9

10Part 2 Exploration of learning disabilityKey components of learning disability are located in the interaction between the person, who may have significantdeficits, and the community, but the person can and will cope in the right environment and with the right supportEnvironmentSupportIndividualBefore18yearsoldIQSocialcompetence

Introduction

In this chapter the term learning disability (LD) is defined. It will be

shown that LD is identified by the presence of a significantly reduced

ability to understand new or complex information (impaired intelli-

gence), with a reduced ability to cope independently (impaired social

functioning), and which occurred before 18 years of age. There is

general agreement that 3–4/1000 of the general population will have a

severe LD, and that 25–30/1000 of the general population will have a

mild LD. It is important to emphasise that people with LD share

a common humanity with fellow citizens in their communities, and

in the wider society in which they live. Most of us desire love and a

sense of connection with others; wish to be safe, to learn, to lead

a meaningful life, to be free from ridicule and harm, to be healthy,

and free from poverty, and in this respect people with LD are no

different. All healthcare workers have a professional responsibility to

bring about their inclusion into their communities by adhering at all

times to a value base that respects them as fellow citizens. LD mani-

fests in a number of different ways for each individual.

Intellectual profile

Fundamental to LD is a difficulty in learning and processing

information. The following intellectual abilities may be impaired:

Verbal abilities

•Memory – including immediate recall of people, objects or

events, and the ability to store and process information.

•Comprehension – understanding situations, knowing socially

accepted norms, and being able to weigh up possible options.

•Language – vocabulary may be limited and some people may not

understand words at all. Others may recognise words but struggle

to understand more subtle meanings.

•Abstract thinking – may find it hard to separate themselves from

the thing they are thinking about. Hypothetical situations are

particularly difficult.

Non-verbal abilities

•Speed of processing – may take a long time to work out what is

going on in a situation.

•Reasoning – shapes, patterns and numbers may be confusing

and they can find it hard to put things in order.

•Coordination – there may be difficulty in coordinating move-

ment or using fine motor skills.

Coping with everyday life

These difficulties in intellectual function can have an impact on a

person’s ability to cope with everyday life. This means that a person

may have a range of difficulties that require support:

•

•Communication – getting on with people and being able to

communicate needs and wishes.

•Work and leisure – using time purposefully, having fun and

pursuing personal goals.

Behavioural phenotypes

Some people with LD have specific syndromes, and these may be

associated with a particular profile of verbal and non-verbal

abilities. For example, people who are on the autistic spectrum of

conditions are characterised by specific difficulties with social

communication and information processing. Information about

specific syndromes is important in understanding and predicting

possible manifestations of LD.

Additional needs

People with LD are more likely to have a range of additional health

needs than does the general population. These are explored in sub-

sequent chapters and are often referred to as co-morbidity of

conditions.

Degrees of learning disability

For many years, LD has been divided into a number of categories

to reflect its nature and extent. These range from ‘borderline’

through ‘mild’, ‘moderate’ and ‘severe’, to ‘profound’. This represents

one understanding of LD but there are others. This understanding

uses the World Health Organisation classification system that

defines the degree of disability according to how far an individual

is from the normal distribution of IQ for the general population.

Using this system, an individual who consistently scores more than

two Standard Deviations (SD) on an IQ test, that is, a measured IQ

of <70, is said to have LD. Individuals whose IQ is 50–69 are

generally identified as having mild LD (F70); those with an IQ of

71–84 are said to be on the borderline of intellectual functioning;

moderate LD (F71) is when the IQ is 35–49; the term severe learn-

ing disability (F72) is reserved for people whose IQ is 20–34;

finally, the term profound learning disability (F73) refers to those

with an IQ of <20. An alternative approach is based on a model of

LD that sees it as an interaction between a person, the support they

receive, and the environment they are located in. Each individual

has a unique profile of LD that impacts on everyday life in different

ways. There is a system for categorising the amount of support

people need on four levels:

•Intermittent – this is time limited support at key times in life,

such as loss of key relationships or transition.

•Limited – consistent need of support for specific tasks, such as

employment training; still time limited.

•Extensive – regular long-term direct support in at least one

setting.

•Pervasive – constant high-intensity support across all settings.

To this is added an assessment of the kind of environment a person

needs, and the opportunities that are important for them to be

healthy and achieve their personal goals. It is always important to

remember that quality of life and relationships are very important

to everyone whatever the degree of LD.

Definition of learning disability

Learning disability has been understood from a number of differ-

ent theoretical perspectives. Three key perspectives are:

Sociological – From this perspective learning disability can be

seen as deviance where learning disability might be seen as

a subculture; distinct and different from other groups in

society.

Medical – this focuses on the possibility that there is an underlying

disease or pathology that might at some point be identified and

understood, and treated as a medical condition.

Statistical – here it is assumed that any aspect of human behaviour

can be measured, and will have a ‘mean’ and ‘standard deviation’.

In the case of LD there are two aspects of measurement: intelli-

gence as measured by intelligence tests to arrive at an IQ, and

adaptive behaviour – the ability to cope with the challenges of

everyday life. People with a learning disability are defined as

those who fall below a predefined level based on statistical

means for the general population.

Summary

LD may be understood as an interaction between the person and

the community. A person may have significant deficits but cope

well in the right environment, and with the right support. But it

should be remembered that minor difficulties can be massively

disabling in a world where a person is isolated and unsupported.

To conclude, in the UK all of these ideas have led to an accepted

definition of LD which comprises three main components:

•significant lifelong difficulty in learning and understanding and,

•a significant difficulty in learning, and practising the skills

needed to cope with everyday life, and

•that there is evidence that these difficulties started before 18

years of age.

Maternal factors

Some infections acquired by the mother may be passed on to the

unborn child through the placenta, and may lead to a learning

disability in the child.

Rubella also known as ‘German measles’ is one infectious

disease that can cause disability if a mother contracts it during the

first three months of pregnancy. It affects the central nervous sys-

tem in addition to the heart and blood vessels of the foetus. Infection

in the first 8–10 weeks of pregnancy results in damage in up to 90%

of surviving infants. Multiple defects are then common.

Frequency of congenital rubella following maternal infection is

50% during weeks 13–14. Severe malformations occur in virtually

all foetuses infected before 12 weeks. If a woman contracts Rubella

after 16 weeks of pregnancy, there is little risk of the foetus

developing abnormalities. Rubella can be prevented by immunisa-

tion of all girls.

Varicella zoster, more commonly known as ‘Chicken pox’ poses

a risk to the foetus if acquired during the first five months of pre-

gnancy. Principal malformations include cataracts, microcephaly

and learning disability. Infection with chickenpox during the first

28 weeks of pregnancy carries a risk that the foetus could develop

a condition known as foetal varicella syndrome (FVS). This

syndrome is rare. The risk of it occurring in the first 12 weeks of

pregnancy is less than 1%. Between 13 and 20 weeks, the risk is 2%.

Foetal varicella syndrome can cause serious complications,

including: scarring, eye defects, such as cataracts, shortened limbs

and brain damage.

There are also other risks from catching chickenpox after week

20 of pregnancy. It is possible that the baby may be born prema-

turely (before week 37 of the pregnancy). In addition, if a pregnant

woman is infected with chickenpox seven days before or seven

days after giving birth, the newborn baby may develop a more

serious type of chickenpox. In a few severe cases, this type of chick-

enpox can be fatal.

Neural tube defects: failure of the neural tube to fuse completely

is linked to genetic factors, although these are usually due to

multifactorial causes. A young maternal age and low socioeco-

nomic status, and deficiency of folic acid vitamin are associated

with neural tube defects.

Administration of multivitamin preparations containing folic

acid during the first 6 weeks of pregnancy have resulted in a

significant reduction in the incidence of new cases. New guidance

also suggests that women trying to become pregnant should take

folic acid in the months before getting pregnant. Pre-natal diagno-

sis is by ultrasound and measuring the level of alpha-fetoprotein in

the amniotic fluid.

Foetal alcohol syndrome