Learning Disability Nursing Practice: Learning Disability Nursing Practice:
Origins, perspectives and practice Origins, perspectives and practice
Learning Disability Nursing Practice Learning Disability Nursing Practice
Origins, perspectives and practice Origins, perspectives and practice
Edited by Edited by
Mark Jukes Mark Jukes Quay Books Division, MA Healthcare Ltd, St Jude’s Church, Dulwich Road, London Quay Books Division, MA Healthcare Ltd, St Jude’s Church, Dulwich Road, London SE24 0PB SE24 0PB
British Library Cataloguing-in-Publication Data British Library Cataloguing-in-Publication Data A catalogue record is available for this book A catalogue record is available for this book
©MA Healthcare Limited 2009 ©MA Healthcare Limited 2009 ISBN-10: 1-85642-385-9; ISBN-13: 978-1-85642-385-4 ISBN-10: 1-85642-385-9; ISBN-13: 978-1-85642-385-4
All rights reserved. No part of this publication may be reproduced, stored in a retrieval All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without prior permission from the publishers recording or otherwise, without prior permission from the publishers
Printed by CLE, Huntingdon, Cambridgeshire Printed by CLE, Huntingdon, Cambridgeshire Introduction Introduction Contents Contents
Contributors vii Contributors vii Introduction Mark Jukes ix Introduction Mark Jukes ix Section One: Origins Section One: Origins Chapter 1 Mental deficiency Institutions: Have the 1 Chapter 1 Mental deficiency Institutions: Have the 1 obituaries been fair and balanced? obituaries been fair and balanced? Peter Allen Peter Allen Chapter 2 Striving towards ordinariness within a 39 Chapter 2 Striving towards ordinariness within a 39 regulatory system regulatory system Mark Jukes Mark Jukes Chapter 3 Mental deficiency nursing and the GNC: 75 Chapter 3 Mental deficiency nursing and the GNC: 75 A square peg in a round hole A square peg in a round hole Duncan Mitchell Duncan Mitchell Section Tw o: Perspectives Section Tw o: Perspectives Chapter 4 From the workhouse to citizenship: Four 101 Chapter 4 From the workhouse to citizenship: Four 101 ages of learning disability ages of learning disability Tony Gilbert Tony Gilbert Chapter 5 Researching learning disability nursing 155 Chapter 5 Researching learning disability nursing 155 Ruth Northway Ruth Northway Section Three: Practices Section Three: Practices Chapter 6 Community learning disability nursing 185 Chapter 6 Community learning disability nursing 185 Mark Jukes and Simon Jones Mark Jukes and Simon Jones Chapter 7 Health facilitation 213 Chapter 7 Health facilitation 213 Susan Brady Susan Brady Chapter 8 Epilepsy and specialist learning disability practice 243 Chapter 8 Epilepsy and specialist learning disability practice 243 Fiona Rich and Catherine Doherty Fiona Rich and Catherine Doherty Chapter 9 Nursing people with profound and multiple 285 Chapter 9 Nursing people with profound and multiple 285 learning disabilities learning disabilities Colin Griffiths and Carmel Doyle Colin Griffiths and Carmel Doyle Chapter 10 Mental health and learning disability 309 Chapter 10 Mental health and learning disability 309 Dave Ferguson Dave Ferguson
LearningContents Disability Nursing Practice LearningContents Disability Nursing Practice
Chapter 11 Challenging behaviour:The contribution of 327 Chapter 11 Challenging behaviour:The contribution of 327 nurse specialists nurse specialists Tony Osgood Tony Osgood Chapter 12 Forensic learning disability nursing practice 361 Chapter 12 Forensic learning disability nursing practice 361 Anne Kingdon Anne Kingdon Chapter 13 Autism spectrum conditions 379 Chapter 13 Autism spectrum conditions 379 Jill Aylott Jill Aylott Chapter 14 Development of services for children 399 Chapter 14 Development of services for children 399 Owen Barr Owen Barr Section Four:Further perspectives Section Four:Further perspectives Chapter 15 Challenges for the curriculum in learning 425 Chapter 15 Challenges for the curriculum in learning 425 disability nursing disability nursing Bob Hallawell Bob Hallawell Chapter 16 Inter-professional education 443 Chapter 16 Inter-professional education 443 Martin Bollard Martin Bollard Chapter 17 Continuing practice development in 463 Chapter 17 Continuing practice development in 463 learning disability nursing learning disability nursing Caron Thomas and Penny Pritchard Caron Thomas and Penny Pritchard
Index 481 Index 481
i i Introduction Introduction Contributors Contributors
Editor Editor Mark Jukes is Reader in Learning Disabilities, Department of Community Mark Jukes is Reader in Learning Disabilities, Department of Community Health and Social Work, Birmingham City University, Edgbaston Health and Social Work, Birmingham City University, Edgbaston Campus, Birmingham, England Campus, Birmingham, England
Contributors Contributors Peter Allen is a retired biomedical scientist. Much of his career was spent Peter Allen is a retired biomedical scientist. Much of his career was spent at St Margaret’s Hospital, Walsall. He is a well-known local historian at St Margaret’s Hospital, Walsall. He is a well-known local historian with a particular interest in social history. He can be contacted at 130 with a particular interest in social history. He can be contacted at 130 Dunsheath, Hollinswood, Telford, Shropshire TF3 2DB, England Dunsheath, Hollinswood, Telford, Shropshire TF3 2DB, England Jill Aylott has a PhD in Autism and is Research Lead at the Centre for Jill Aylott has a PhD in Autism and is Research Lead at the Centre for Professional and Organisation Development, Faculty of Health and Professional and Organisation Development, Faculty of Health and Wellbeing, Sheffield Hallam University, Sheffield, England Wellbeing, Sheffield Hallam University, Sheffield, England Owen Barr is Head of School, School of Nursing, University of Ulster, Owen Barr is Head of School, School of Nursing, University of Ulster, Londonderry, Northern Ireland Londonderry, Northern Ireland Susan Brady is Clinical Lead for Health Facilitation and an Advanced Susan Brady is Clinical Lead for Health Facilitation and an Advanced Nurse Practitioner for Learning Disabilities Services in South Nurse Practitioner for Learning Disabilities Services in South Birmingham Primary Care Trust, Birmingham, England Birmingham Primary Care Trust, Birmingham, England Martin Bollard is Senior Lecturer in Learning Disabilities and CiPel Martin Bollard is Senior Lecturer in Learning Disabilities and CiPel Reader, Coventry University, Coventry, England Reader, Coventry University, Coventry, England Catherine Doherty is Epilepsy Specialist Nurse, St. Stephens Centre, Catherine Doherty is Epilepsy Specialist Nurse, St. Stephens Centre, South Birmingham Primary Care Trust, Birmingham, England South Birmingham Primary Care Trust, Birmingham, England Carmel Doyle is Lecturer in Intellectual Disabilities, School of Nursing Carmel Doyle is Lecturer in Intellectual Disabilities, School of Nursing and Midwifery, Trinity College, Dublin, Eire and Midwifery, Trinity College, Dublin, Eire Dave Ferguson is Consultant Nurse (Mental Health in Learning Disability) Dave Ferguson is Consultant Nurse (Mental Health in Learning Disability) and Academic Practitioner, Hampshire Partnership NHS Foundation and Academic Practitioner, Hampshire Partnership NHS Foundation Trust and University of Southampton, Southampton, England Trust and University of Southampton, Southampton, England Tony Gilbert is Deputy Head of School of Social Work and Primary Care, Tony Gilbert is Deputy Head of School of Social Work and Primary Care, Plymouth University, Plymouth, England Plymouth University, Plymouth, England Colin Griffiths is Lecturer in Intellectual Disabilities, School of Nursing Colin Griffiths is Lecturer in Intellectual Disabilities, School of Nursing and Midwifery, Trinity College, Dublin, Eire and Midwifery, Trinity College, Dublin, Eire Bob Hallawell is Academic Lead in Learning Disability, Division of Bob Hallawell is Academic Lead in Learning Disability, Division of Nursing, School of Nursing, Midwifery and Physiotherapy, University Nursing, School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Nottingham, England of Nottingham, Nottingham, England Simon Jones is Deputy Service Manager, Bristol Community Learning Simon Jones is Deputy Service Manager, Bristol Community Learning Difficulty Service, Bristol, England Difficulty Service, Bristol, England Anne Kingdon is Consultant Nurse in Learning Disabilities (Forensic), Anne Kingdon is Consultant Nurse in Learning Disabilities (Forensic), Cheshire and Wirral Partnership NHS Foundation Trust, and Honorary Cheshire and Wirral Partnership NHS Foundation Trust, and Honorary Senior Lecturer, University of Chester, England Senior Lecturer, University of Chester, England
ii ii LearningContributoDisabilityrs Nursing Practice LearningContributoDisabilityrs Nursing Practice
Duncan Mitchell is Professor of Health and Disability, Manchester Duncan Mitchell is Professor of Health and Disability, Manchester Metropolitan University and Head of Clinical Services, Manchester Metropolitan University and Head of Clinical Services, Manchester Learning Disability Partnership, Manchester, England Learning Disability Partnership, Manchester, England Ruth Northway is Professor of Learning Disability Nursing, Unit for Ruth Northway is Professor of Learning Disability Nursing, Unit for Development in Intellectual Disabilities, Faculty of Health, Sport and Development in Intellectual Disabilities, Faculty of Health, Sport and Science, University of Glamorgan, Pontypridd, Wales Science, University of Glamorgan, Pontypridd, Wales Tony Osgood is Lecturer in Intellectual and Developmental Disability, Tony Osgood is Lecturer in Intellectual and Developmental Disability, Tizard Centre, University of Canterbury, England Tizard Centre, University of Canterbury, England Penny Pritchard is Service Manager, Developmental Neurosciences Penny Pritchard is Service Manager, Developmental Neurosciences and Learning Disabilities Directorate, Stonefield House, St. Georges and Learning Disabilities Directorate, Stonefield House, St. Georges Hospital, South Staffordshire and Shropshire Healthcare NHS Hospital, South Staffordshire and Shropshire Healthcare NHS Foundation Trust, Stafford, England Foundation Trust, Stafford, England Fiona Rich is Senior Lecturer in Learning Disabilities, Department of Fiona Rich is Senior Lecturer in Learning Disabilities, Department of Community Health and Social Work, Birmingham City University, Community Health and Social Work, Birmingham City University, Birmingham, England Birmingham, England Caron Thomas is Consultant Nurse in Learning Disabilities and Head Caron Thomas is Consultant Nurse in Learning Disabilities and Head of Nursing, Learning Disabilities, Developmental Neurosciences of Nursing, Learning Disabilities, Developmental Neurosciences and Learning Disabilities Directorate, St. Georges Hospital, South and Learning Disabilities Directorate, St. Georges Hospital, South Staffordshire and Shropshire Healthcare NHS Foundation Trust, Staffordshire and Shropshire Healthcare NHS Foundation Trust, Stafford, England Stafford, England
iii iii Introduction Introduction
This book claims to be a first in providing a text that encapsulates not only This book claims to be a first in providing a text that encapsulates not only the origins of nursing in the learning disability field but also contemporary the origins of nursing in the learning disability field but also contemporary perspectives and areas for specialist nursing practice. perspectives and areas for specialist nursing practice. Readers may initially be confused when a book which is entitled Readers may initially be confused when a book which is entitled Learning Disability Nursing Practice commences with three chapters given Learning Disability Nursing Practice commences with three chapters given over to the history of a colony and research into mental deficiency nursing. over to the history of a colony and research into mental deficiency nursing. However, for many readers these chapters will present a rich source of However, for many readers these chapters will present a rich source of what constitutes a little understood era that promoted segregation, a setting what constitutes a little understood era that promoted segregation, a setting apart from society, as opposed to the now more enlightened approach of apart from society, as opposed to the now more enlightened approach of citizenship and person-centred practice. citizenship and person-centred practice. For many students of learning disability nursing, whether working in health For many students of learning disability nursing, whether working in health or socialcare settings, their professional and historical roots remain largely or socialcare settings, their professional and historical roots remain largely hidden or are portrayed negatively through reported scandals and inquiries. This hidden or are portrayed negatively through reported scandals and inquiries. This book therefore intentionally covers asignificant part of the history of this branch book therefore intentionally covers asignificant part of the history of this branch of nursingand traces the beginnings of aunique colony for people known to be of nursingand traces the beginnings of aunique colony for people known to be mentallydeficient, in the context of society, and the creation of social policy mentallydeficient, in the context of society, and the creation of social policy which advocated asolution to what was called mental deficiency. which advocated asolution to what was called mental deficiency. The book is divided into four sections: origins, perspectives, practice, The book is divided into four sections: origins, perspectives, practice, and further perspectives. and further perspectives. Section one (origins) describes Great Barr Colony and explores the Section one (origins) describes Great Barr Colony and explores the conceptions of practice of actual attendants and nurses who worked there. conceptions of practice of actual attendants and nurses who worked there. It gives readers an in-depth focus on aspects of work and practice not It gives readers an in-depth focus on aspects of work and practice not accounted for in the literature to date. accounted for in the literature to date. Section two (perspectives) explores socialpolicy perspectives from the Section two (perspectives) explores socialpolicy perspectives from the past eras of the workhouse, the colony and the hospital, through to the present past eras of the workhouse, the colony and the hospital, through to the present age of citizenship. Research in learning disability nursing practice is identified age of citizenship. Research in learning disability nursing practice is identified through scoping exercises to identify its current status. The section questions through scoping exercises to identify its current status. The section questions the research and practice developments that have come of age and that the research and practice developments that have come of age and that constitute achallenge within an evidence-based health and social care world. constitute achallenge within an evidence-based health and social care world. Section three (practice) identifies a wide range of specialist areas of Section three (practice) identifies a wide range of specialist areas of nursing practice, including community learning disability nursing, epilepsy, nursing practice, including community learning disability nursing, epilepsy, forensics, health facilitation, autism, mental health, challenging behaviour, forensics, health facilitation, autism, mental health, challenging behaviour, children’s services and working with people with profound and multiple children’s services and working with people with profound and multiple learning disabilities. learning disabilities. Section four (further perspectives) addresses areas of contemporary and Section four (further perspectives) addresses areas of contemporary and future concern, namely, educational curricula for nurses and the importance future concern, namely, educational curricula for nurses and the importance of inter-professional education and practice development. of inter-professional education and practice development.
ix ix LearningIntroductionDisability Nursing Practice LearningIntroductionDisability Nursing Practice
Section One: Origins Section One: Origins
Chapter 1 by Peter Allen opens with an in-depth account of the history of Chapter 1 by Peter Allen opens with an in-depth account of the history of Great Barr Park Colony, later to be known as St. Margarets Hospital. Its Great Barr Park Colony, later to be known as St. Margarets Hospital. Its aim is to contextualise the era of the colony and hospital in terms of the aim is to contextualise the era of the colony and hospital in terms of the social policy that influenced such provisions for peoplewho, over time, social policy that influenced such provisions for peoplewho, over time, and through the nomenclature of perjorative labels, were deemed as being and through the nomenclature of perjorative labels, were deemed as being mentally defective, subnormal or having a mental handicap. mentally defective, subnormal or having a mental handicap. Mark Jukes follows in Chapter with research that examines the Mark Jukes follows in Chapter with research that examines the perceptions of practice of attendants and nurses who were trained and perceptions of practice of attendants and nurses who were trained and worked at Great Barr Park Colony from 1927 up to the formation of the worked at Great Barr Park Colony from 1927 up to the formation of the National Health Service in 1948. National Health Service in 1948. In Chapter Duncan Mitchell concludes the section with an in-depth In Chapter Duncan Mitchell concludes the section with an in-depth account of the difficulties in the relationship between mental deficiency account of the difficulties in the relationship between mental deficiency and learning disability nursing. The focus is upon the work of the General and learning disability nursing. The focus is upon the work of the General Nursing Council and how it grappled with the question of whether work in Nursing Council and how it grappled with the question of whether work in mental deficiency could be described as nursing. mental deficiency could be described as nursing. Section Two: Perspectives Section Two: Perspectives
Tony Gilbert, in Chapter , commences this section with an in-depth Tony Gilbert, in Chapter , commences this section with an in-depth appraisal of social policy adopting a theme of ‘The Four Ages of Learning appraisal of social policy adopting a theme of ‘The Four Ages of Learning Disability’: the age of the workhouse, the age of the colony, the age of Disability’: the age of the workhouse, the age of the colony, the age of normalisation and the age of citizenship. normalisation and the age of citizenship. Ruth Northway (Chapter ) considers and pursues learning disability Ruth Northway (Chapter ) considers and pursues learning disability research in terms of promoting this essential activity. She generates ideas research in terms of promoting this essential activity. She generates ideas about how this can be effectively achieved. Recent work is highlighted about how this can be effectively achieved. Recent work is highlighted which places into perspective the current status of research within learning which places into perspective the current status of research within learning disability nursing practice. disability nursing practice. Section Three: Practice Section Three: Practice
This section commences with Chapter on the development of community This section commences with Chapter on the development of community learning disability nursing from its origins to contemporary practice. What learning disability nursing from its origins to contemporary practice. What is illustrated is an area of work that has been determined and influenced is illustrated is an area of work that has been determined and influenced through external events and policies, rather than by internal appraisal and through external events and policies, rather than by internal appraisal and analysis from nurses themselves. Mark Jukes and Simon Jones identify that analysis from nurses themselves. Mark Jukes and Simon Jones identify that learning disability nurses have a predominantly health focus, which has the learning disability nurses have a predominantly health focus, which has the potential impact of promoting change and inclusion for people with learning potential impact of promoting change and inclusion for people with learning disabilities and their families. disabilities and their families. Susan Brady in Chapter continues the theme of health in this section Susan Brady in Chapter continues the theme of health in this section on learning disability nursing practices. She provides an in-depth analysis on learning disability nursing practices. She provides an in-depth analysis x x Introduction Introduction into her work and research as a strategic health facilitator in Birmingham. into her work and research as a strategic health facilitator in Birmingham. Susan’s research focuses on the adoption of an electronic health screening Susan’s research focuses on the adoption of an electronic health screening template by general practitioners, with the ultimate aim of improving health template by general practitioners, with the ultimate aim of improving health screening for people with an intellectual disability. screening for people with an intellectual disability. Epilepsy and learning disability are almost synonymous by virtue of Epilepsy and learning disability are almost synonymous by virtue of their co-existence in this population. In Chapter Fiona Rich and Catherine their co-existence in this population. In Chapter Fiona Rich and Catherine Doherty present an extensive and comprehensive overview of epilepsy, Doherty present an extensive and comprehensive overview of epilepsy, and also consider the role of the learning disability nurse as a specialist and also consider the role of the learning disability nurse as a specialist practitioner. practitioner. In Chapter Colin Griffiths and Carmel Doyle explore key areas for In Chapter Colin Griffiths and Carmel Doyle explore key areas for assessment and health planning which are essential to apply when relating assessment and health planning which are essential to apply when relating and working with people who have a profound and multiple learning and working with people who have a profound and multiple learning disability. With an increase of the incidence in learning disability, the disability. With an increase of the incidence in learning disability, the involvement of specialist nurses in this area is also bound to be a focus for involvement of specialist nurses in this area is also bound to be a focus for increased intervention. increased intervention. Dave Ferguson(Chapter 10)explores the dual diagnosis of mental Dave Ferguson(Chapter 10)explores the dual diagnosis of mental health problems and learning disability. Although contemporary mental health problems and learning disability. Although contemporary mental health services for people should have its roots in mainstream services, health services for people should have its roots in mainstream services, Dave explores the contribution specialist services and the learning Dave explores the contribution specialist services and the learning disability nurse can provide in educating mainstream providers, family and disability nurse can provide in educating mainstream providers, family and paid carers. paid carers. In Chapter 11 Tony Osgood provides an overview of one of the most In Chapter 11 Tony Osgood provides an overview of one of the most difficult to define and ultimately contentious areas of practice within the difficult to define and ultimately contentious areas of practice within the field of learning disability nursing – challenging behaviour. Tony provides field of learning disability nursing – challenging behaviour. Tony provides a rich account of some of the critical issues associated with challenging a rich account of some of the critical issues associated with challenging behaviour that a nurse will encounter in professional practice. behaviour that a nurse will encounter in professional practice. Anne Kingdon follows the theme of specialism in Chapter 1, and in Anne Kingdon follows the theme of specialism in Chapter 1, and in this case an emergent area within learning disability nursing practice, that of this case an emergent area within learning disability nursing practice, that of forensics. The role of the nurse in this area of practice is still in its infancy forensics. The role of the nurse in this area of practice is still in its infancy in terms of community-based provision. The purpose of this chapter is to in terms of community-based provision. The purpose of this chapter is to explore the context and practices of forensic learning disability nursing. explore the context and practices of forensic learning disability nursing. Jill Aylott (Chapter 1) provides us with an illuminating account of her Jill Aylott (Chapter 1) provides us with an illuminating account of her work with people who have the diagnosis of an autistic spectrum condition. work with people who have the diagnosis of an autistic spectrum condition. In particular, Jill shares her research into developing a communication In particular, Jill shares her research into developing a communication and sensory profile. This is an invaluable resource allowing the learning and sensory profile. This is an invaluable resource allowing the learning disability nurse to gain further insight and to develop skills with people who disability nurse to gain further insight and to develop skills with people who have a different perspective on communication. have a different perspective on communication. Owen Barr has extensive experience as a practitioner and researcher into Owen Barr has extensive experience as a practitioner and researcher into the needs of children with learning disabilities and the effects their problems the needs of children with learning disabilities and the effects their problems have on their families. In particular, in Chapter 1, Owen examines how have on their families. In particular, in Chapter 1, Owen examines how policy and services are planned and the role of professionals in services, with policy and services are planned and the role of professionals in services, with the ultimate goal of promoting equal choice and value. the ultimate goal of promoting equal choice and value.
xi xi LearningIntroductionDisability Nursing Practice LearningIntroductionDisability Nursing Practice
Section Four:Further perspectives Section Four:Further perspectives
A new range of demands within health and social care presents new ways of A new range of demands within health and social care presents new ways of delivering services to clients – which includes nurse education. delivering services to clients – which includes nurse education. In Chapter 1 Bob Hallawell illuminates some of these challenges In Chapter 1 Bob Hallawell illuminates some of these challenges specifically within pre-registration nursing curricula in an era of citizenship specifically within pre-registration nursing curricula in an era of citizenship and person-centred approaches.There have been recent Nursing and and person-centred approaches.There have been recent Nursing and Midwifery Council consultations over whether learning disability remains as Midwifery Council consultations over whether learning disability remains as a discrete field of practice, as do other specialties, or whether it is destined a discrete field of practice, as do other specialties, or whether it is destined to remain a square peg in a round hole. to remain a square peg in a round hole. Martin Bollard (Chapter 1) explores the ubiquitous area of inter- Martin Bollard (Chapter 1) explores the ubiquitous area of inter- professional education. Collaboration between the professions is not a new professional education. Collaboration between the professions is not a new concept, but how to provide inter-professional learning is still embryonic for concept, but how to provide inter-professional learning is still embryonic for many higher educational establishments. Martin pursues how this may be many higher educational establishments. Martin pursues how this may be achieved, highlighting how people with a learning disability can be at the achieved, highlighting how people with a learning disability can be at the centre of such programmes. centre of such programmes. In the final chapter (Chapter 1) Caron Thomas and Penny Pritchard In the final chapter (Chapter 1) Caron Thomas and Penny Pritchard outline how practice development for learning disability nurses can sustain outline how practice development for learning disability nurses can sustain and promote their practice. This can be achieved through having a person- and promote their practice. This can be achieved through having a person- centred and carer focus and being involved in research, education and centred and carer focus and being involved in research, education and practice-based learning which ensures an evidence-based approach to practice-based learning which ensures an evidence-based approach to practice. practice.
This text gives an original and invaluable perspective into the origins This text gives an original and invaluable perspective into the origins and contemporary practices of learning disability nursing. The reader can and contemporary practices of learning disability nursing. The reader can examine the past and present formulations into what constitutes learning examine the past and present formulations into what constitutes learning disability nursing practice across the parameters of health and social care. disability nursing practice across the parameters of health and social care.
Mark Jukes Mark Jukes Birmingham City Uniersity Birmingham City Uniersity
xii xii Acknowledgements Acknowledgements
I would like to extend my thanks to the attendants and nurses who participated I would like to extend my thanks to the attendants and nurses who participated in the research reported in Chapter , some of whom are no longer with us, in the research reported in Chapter , some of whom are no longer with us, who willingly and enthusiastically shared the experiencesof their previous who willingly and enthusiastically shared the experiencesof their previous lives. Talking with them gave me great insight and I was humbled by the lives. Talking with them gave me great insight and I was humbled by the gift they offered. gift they offered. I would also like to thank all the contributors to this text who are I would also like to thank all the contributors to this text who are extremely active in promoting person-centred practices in their work with extremely active in promoting person-centred practices in their work with people, families, carers, and students across a broad spectrum of care. people, families, carers, and students across a broad spectrum of care. Finally, I would like to thank Margaret for all her patience and support Finally, I would like to thank Margaret for all her patience and support and for being a constant sounding board for my endeavours in promoting and for being a constant sounding board for my endeavours in promoting quality education and practices with people, families and students within the quality education and practices with people, families and students within the field of learning disability. field of learning disability.
Section One: Section One:
Origins Origins
CHAPTER 1 CHAPTER 1
Mental deficiency institutions: Mental deficiency institutions: Have the obituaries been fair Have the obituaries been fair and balanced? and balanced? Peter Allen Peter Allen
Read not to contradict and confute, nor to beliee and take for granted... Read not to contradict and confute, nor to beliee and take for granted... but to weigh and consider. but to weigh and consider. Francis Bacon Francis Bacon Introduction Introduction
The 20th century was the Dark Ages for people with learning disabilities: The 20th century was the Dark Ages for people with learning disabilities: they were incarcerated in institutions akin to prisons, systematically abused they were incarcerated in institutions akin to prisons, systematically abused by uncaring nurses and denied basic human rights. Falling foul of parents, by uncaring nurses and denied basic human rights. Falling foul of parents, being a petty criminal or giving birth to an illegitimate child was sufficient being a petty criminal or giving birth to an illegitimate child was sufficient reason to be ‘put away’ for an indefinite period. reason to be ‘put away’ for an indefinite period. If your exposure to the history of this special group of people is largely If your exposure to the history of this special group of people is largely through the literature generated during and after the 1970s – the ‘scandal through the literature generated during and after the 1970s – the ‘scandal decade’ – you may well subscribe to these views. But such a standpoint is decade’ – you may well subscribe to these views. But such a standpoint is distorted and largely inaccurate. distorted and largely inaccurate. From a close scrutiny of that period and its aftermath emerged a rash of From a close scrutiny of that period and its aftermath emerged a rash of publications intensely critical of institutions for the learning disabled. One publications intensely critical of institutions for the learning disabled. One such book looked at the life experiences of eight men and nine women who such book looked at the life experiences of eight men and nine women who had spent an average of 47 years in an institution, certified under the Mental had spent an average of 47 years in an institution, certified under the Mental Deficiency Act of 1913 (Potts and Fido, 1991). Reading the book makes us Deficiency Act of 1913 (Potts and Fido, 1991). Reading the book makes us uncomfortably aware of the injustices and inhumanity that characterised their uncomfortably aware of the injustices and inhumanity that characterised their lives. But just how much of that can we blame on the inherent shortcomings lives. But just how much of that can we blame on the inherent shortcomings of institutionalised systems of care? of institutionalised systems of care? To be outraged is a perfectly understandable response, but we need to To be outraged is a perfectly understandable response, but we need to keep in mind we are viewing these accounts with modern eyes. The first keep in mind we are viewing these accounts with modern eyes. The first half of the 20th century was a period of great social upheaval: despair, half of the 20th century was a period of great social upheaval: despair, privationand dehumanisation wascommonplace amongthe ordinary privationand dehumanisation wascommonplace amongthe ordinary working classes. The most vulnerable sections of this social stratum suffered working classes. The most vulnerable sections of this social stratum suffered disproportionately. disproportionately. Learning Disability Nursing Practice Learning Disability Nursing Practice
Any studies based on editedinterviewshave well-recognised Any studies based on editedinterviewshave well-recognised methodological shortcomings. These vignettes of life in an institution would methodological shortcomings. These vignettes of life in an institution would be immensely more valuable if we were able to compare them with the life be immensely more valuable if we were able to compare them with the life experiences of an age-matched control group brought up in the community. experiences of an age-matched control group brought up in the community. Those mental defectives1 classified as ‘feeble-minded’2 under the Mental Those mental defectives1 classified as ‘feeble-minded’2 under the Mental Deficiency Act and ‘controlled’ by statutory supervision, mostly in their own Deficiency Act and ‘controlled’ by statutory supervision, mostly in their own homes, are obvious candidates. Their education would probably have been homes, are obvious candidates. Their education would probably have been through the Special School system; at the age of 16 they would leave and try through the Special School system; at the age of 16 they would leave and try to procure employment in a harsh world. How did they fare during the years to procure employment in a harsh world. How did they fare during the years of the Depression and after? Was their quality of life superior to that of their of the Depression and after? Was their quality of life superior to that of their institutionalised peers? How were they affected by ignorance and prejudice? institutionalised peers? How were they affected by ignorance and prejudice? We have not been told. We have not been told. Although such comparative studies are absent in the literature, the Although such comparative studies are absent in the literature, the many UK and USA longitudinal and follow-up studies applicable to feeble- many UK and USA longitudinal and follow-up studies applicable to feeble- minded defectives in open society offer some insights (Tizard, 1958). During minded defectives in open society offer some insights (Tizard, 1958). During the Second World War thousands of UK and USA high-grade defectives the Second World War thousands of UK and USA high-grade defectives living in the community were drafted into the army to perform the more living in the community were drafted into the army to perform the more menial tasks. Three of the many studies listed by Tizard examined their menial tasks. Three of the many studies listed by Tizard examined their performance: a high degree of failure was reported with around half being performance: a high degree of failure was reported with around half being discharged as unsuitable. Their life experiences in the community were far discharged as unsuitable. Their life experiences in the community were far from positive. from positive. A thorough review of the literature by Cobb (1969) concluded that A thorough review of the literature by Cobb (1969) concluded that ‘…as compared with a non-retarded control group, the retarded show a ‘…as compared with a non-retarded control group, the retarded show a higher incidence of marital, civic and occupational failure, especially in the higher incidence of marital, civic and occupational failure, especially in the early stages.’ A more recent analysis arrives at much the same conclusion: early stages.’ A more recent analysis arrives at much the same conclusion: ‘…various follow-up studies of such key indicators of adult adjustment as ‘…various follow-up studies of such key indicators of adult adjustment as employment, relationships, criminality, and adult mental health do not give employment, relationships, criminality, and adult mental health do not give cause for optimism’ (O’Brien, 2001). The evidence suggests our missing cause for optimism’ (O’Brien, 2001). The evidence suggests our missing control group in the community would also have given Potts and Fido (1991) control group in the community would also have given Potts and Fido (1991) a constellation of depressing life experiences. a constellation of depressing life experiences. Current perceptions of the institutional era are profoundly downbeat, Current perceptions of the institutional era are profoundly downbeat, which is saddening. This negativity has been exacerbated by a few miscreants which is saddening. This negativity has been exacerbated by a few miscreants who disgraced the nursing profession around the 1970s. Their actions cast who disgraced the nursing profession around the 1970s. Their actions cast a shadow over ordinary hard-working nurses who considered nursing in an a shadow over ordinary hard-working nurses who considered nursing in an institutional setting as a supremely rewarding experience. Large numbers institutional setting as a supremely rewarding experience. Large numbers devoted the whole of their working lives to the care of the learning disabled; devoted the whole of their working lives to the care of the learning disabled;
1The history of learning disability is littered with changes in nomenclature.The terms 1The history of learning disability is littered with changes in nomenclature.The terms used in this chapter will be seen to fluctuate according to the time period under used in this chapter will be seen to fluctuate according to the time period under discussion. Many of the older terms are now only used pejoratively. discussion. Many of the older terms are now only used pejoratively. 2The term ‘feeble-minded’ was in use from the middle of the 19th century (Brady,1864; 2The term ‘feeble-minded’ was in use from the middle of the 19th century (Brady,1864; Duncan and Millard, 1866) to distinguish more able mental defectives,largely regarded Duncan and Millard, 1866) to distinguish more able mental defectives,largely regarded at the time as lazy or wicked, from idiots and imbeciles. at the time as lazy or wicked, from idiots and imbeciles.
Mental Deficiency Institutions: Hae the obituaries been fair and balanced? Mental Deficiency Institutions: Hae the obituaries been fair and balanced? it was not uncommon for three generations of a family to follow each other it was not uncommon for three generations of a family to follow each other into a nursing career. Whatever the inadequacies of the institutional system, into a nursing career. Whatever the inadequacies of the institutional system, it is beyond debate that generations of caring, highly-motivated professionals it is beyond debate that generations of caring, highly-motivated professionals gave care and succour to the learning disabled equal in measure to anything gave care and succour to the learning disabled equal in measure to anything on offer in this more ‘enlightened’ age. on offer in this more ‘enlightened’ age. A balanced appraisal of the era of mental deficiency institutions requires A balanced appraisal of the era of mental deficiency institutions requires you to take a close look at why and how these establishments were set up, you to take a close look at why and how these establishments were set up, how they functioned on a day-to-day basis, and their response to change. You how they functioned on a day-to-day basis, and their response to change. You will look in vain in the academic literature for such an overall view. This will look in vain in the academic literature for such an overall view. This vacuum may partially be filled by this warts-and-all historical summary, in vacuum may partially be filled by this warts-and-all historical summary, in essence a complete life-cycle, of Great Barr Park Colony (Barr Colony), essence a complete life-cycle, of Great Barr Park Colony (Barr Colony), the fourth largest such establishment for mental defectivesin England. Like the fourth largest such establishment for mental defectivesin England. Like so many of its ilk, it was in turn spawned and destroyed by the same agent so many of its ilk, it was in turn spawned and destroyed by the same agent – social pressure. – social pressure. Barr Colony, known as St Margaret’s Hospital after 1948, was established Barr Colony, known as St Margaret’s Hospital after 1948, was established on the old Great Barr Hall Estate, a location in the West Midlands near to on the old Great Barr Hall Estate, a location in the West Midlands near to what is now Junction 7 of the M6. Walsall and West Bromwich, two large what is now Junction 7 of the M6. Walsall and West Bromwich, two large towns central to its evolution, are situated close by. It has the distinction of towns central to its evolution, are situated close by. It has the distinction of being the first large mental deficiency colony to be approved by the Board being the first large mental deficiency colony to be approved by the Board of Control under the Mental Deficiency Act of 1913. of Control under the Mental Deficiency Act of 1913. The evolution of mental deficiency colonies The evolution of mental deficiency colonies
Why was the Mental Deficiency Act of 1913 received with so much Why was the Mental Deficiency Act of 1913 received with so much enthusiasm? Why were so many mental defectives taken out of society? enthusiasm? Why were so many mental defectives taken out of society? How was it possible for impoverished Poor Law Unions to acquire landed How was it possible for impoverished Poor Law Unions to acquire landed estates? To answer these and other questions we need to examine the social estates? To answer these and other questions we need to examine the social dynamics then in play. dynamics then in play. Overcrowding and intermixing in Poor Law establishments Overcrowding and intermixing in Poor Law establishments
From Elizabethan times up until the passage of the Poor Law Amendment Act From Elizabethan times up until the passage of the Poor Law Amendment Act in 1834, provision for the poor was administered at parish level. The system in 1834, provision for the poor was administered at parish level. The system had many critics; assistance was often meted out in a haphazard manner had many critics; assistance was often meted out in a haphazard manner and abuse was rife both by relievers and relieved. The new Act formed and abuse was rife both by relievers and relieved. The new Act formed parishes into unions with their neighbours, abolished out-relief, and required parishes into unions with their neighbours, abolished out-relief, and required those in need to surrender their liberty and enter purpose-built residential those in need to surrender their liberty and enter purpose-built residential workhouses. Diet and conditions were standardised nationally by central workhouses. Diet and conditions were standardised nationally by central Government edict and rigidly applied at local level by Poor Law Guardians, Government edict and rigidly applied at local level by Poor Law Guardians, elected from the ratepayers. It was envisaged that a Draconian regime would elected from the ratepayers. It was envisaged that a Draconian regime would discourage the unemployed able-bodied, those mostly in receipt of relief at discourage the unemployed able-bodied, those mostly in receipt of relief at that time, from pursuing a life of indolence on the local rates. that time, from pursuing a life of indolence on the local rates.
Learning Disability Nursing Practice Learning Disability Nursing Practice
By the early part of the 20th century, very much against expectation, some By the early part of the 20th century, very much against expectation, some 85% of persons receiving assistance were suffering from physical, mental 85% of persons receiving assistance were suffering from physical, mental or ‘moral’ disability. Poor Law institutions were increasingly becoming or ‘moral’ disability. Poor Law institutions were increasingly becoming choked with the aged and infirm, abandoned and orphaned children, mental choked with the aged and infirm, abandoned and orphaned children, mental defectives, consumptives and other disadvantaged classes. defectives, consumptives and other disadvantaged classes. In 1905, a Royal Commission was appointed to enquire into the workings In 1905, a Royal Commission was appointed to enquire into the workings of the Poor Law system. Many far-reaching proposals were incorporated in of the Poor Law system. Many far-reaching proposals were incorporated in their report (Royal Commission on the Poor Laws and Relief of Distress, their report (Royal Commission on the Poor Laws and Relief of Distress, 1909). In particular, the Royal Commission strongly favoured the removal 1909). In particular, the Royal Commission strongly favoured the removal of all children from workhouses. With the recommendations of the report in of all children from workhouses. With the recommendations of the report in mind, Poor Law institutions throughout the land were inspired to seek ways mind, Poor Law institutions throughout the land were inspired to seek ways of segregating the various classes according to their individual needs. of segregating the various classes according to their individual needs. So what was the plight of local mental defectives before the Mental So what was the plight of local mental defectives before the Mental Deficiency Act changed the scene irrevocably? Alas, appropriate records for Deficiency Act changed the scene irrevocably? Alas, appropriate records for Walsall and West Bromwich Poor Law Unions do not survive in sufficient Walsall and West Bromwich Poor Law Unions do not survive in sufficient volume for the question to be answered authoritatively. But there is much volume for the question to be answered authoritatively. But there is much to be gleaned from local newspapers – particularly the lengthy reports of to be gleaned from local newspapers – particularly the lengthy reports of weekly meetings of the guardians. Such information was eagerly devoured, weekly meetings of the guardians. Such information was eagerly devoured, after all guardians were spending local money and ratepayers were their after all guardians were spending local money and ratepayers were their severest critics. severest critics. This is the picture at the turn of the century. For ordinary working- This is the picture at the turn of the century. For ordinary working- class families, leading a hand-to-mouth existence, the added burden of a class families, leading a hand-to-mouth existence, the added burden of a dependent mental defective was financially crippling. Unless able to hold dependent mental defective was financially crippling. Unless able to hold down some kind of lowly employment, and so contribute towards their own down some kind of lowly employment, and so contribute towards their own upkeep, relatives of these unfortunates must, of necessity, place them in upkeep, relatives of these unfortunates must, of necessity, place them in the hands of the Poor Law authorities. Within the workhouse they would the hands of the Poor Law authorities. Within the workhouse they would perform the most menial domestic tasks or, if their disability was more perform the most menial domestic tasks or, if their disability was more profound, live out a wretched life in the imbecile wards of the infirmary. As profound, live out a wretched life in the imbecile wards of the infirmary. As a last resort those who were particularly troublesome would be sent away to a last resort those who were particularly troublesome would be sent away to the county asylum at Burntwood, certified under the lunacy laws. Guardians the county asylum at Burntwood, certified under the lunacy laws. Guardians were no spendthrifts and they loathed having to pay the high maintenance were no spendthrifts and they loathed having to pay the high maintenance charges so incurred. charges so incurred. Less costly arrangements were occasionally entered into with fellow Less costly arrangements were occasionally entered into with fellow unions possessing the necessary expertise and resources to handle special unions possessing the necessary expertise and resources to handle special groups. In 1913, to relieve overcrowding, West Bromwich Guardians had groups. In 1913, to relieve overcrowding, West Bromwich Guardians had 26 imbeciles boarded out with Stourbridge Union, with the facility to send 26 imbeciles boarded out with Stourbridge Union, with the facility to send double that number if they so desired (Midland Chronicle, 1913). double that number if they so desired (Midland Chronicle, 1913). Defectives in middle-class families fared a little better than their Defectives in middle-class families fared a little better than their impecunious fellows. For the privileged few the Midland Counties Idiot impecunious fellows. For the privileged few the Midland Counties Idiot Asylum had been established at Knowle in the late 1860s. It offered Asylum had been established at Knowle in the late 1860s. It offered residential care for around 60 patients and was the only asylum of its type residential care for around 60 patients and was the only asylum of its type in the whole of the five counties making up the central Midlands. Demand in the whole of the five counties making up the central Midlands. Demand