Editorial Board and Authors
Editorial Board members and corresponding advisors
Baroness Sheila Hollins, Founding Editor-in-Chief, now Consulting Editor, Crossbench peer in the House of Lords; Emeritus Professor of Psychiatry of Disability, St George’s University of London
Andrew Adlem, Health Provider Representative, Lead Consultant Clinical Psychologist, East & North Specialist Learning Disability Service, Hertfordshire Partnership University NHS Foundation Trust
Jackie Kelly, Non-Medical Editor and Website Management Lead, Joint Chair of the Website Editorial Board, Dean of School of Health and Social Work, University of Hertfordshire
William Howie, Medical Editor/Clinical Editor, Joint Chair of the Website Editorial Board, Consultant in the Psychiatry of Intellectual Disabilities at South West London & St George's MH NHS Trust, and UKCP Systemic Psychotherapist
Sandra Dowling, Social Sciences Editor, Lecturer in Disability Studies and Research Associate, Norah Fry Centre, University of Bristol
Emily Magdij, Communications Manager, Beyond Words
Board members/corresponding advisors:
Ella Baines, GP in Shrewsbury
Jim Blair, Consultant Nurse in Learning Disabilities, Royal College of Nursing
Gary Butler, Training Adviser, Division of Population Health Sciences & Education, St George’s University of London
Trevor Chan, Consultant Psychiatrist in Intellectual Disabilities, Greenwich Community Learning Disability Team, Oxleas NHS Foundation Trust
Denise Gentry, Learning Disabilities Clinical Lead, St George’s University of London
Erica Goddard, Lecturer, the Centre for Learning Disability Studies (tCLDS), University of Hertfordshire
Resha Jazrawi, Medical Student at St George’s University of London
Keri-Michele Lodge, Consultant in Psychiatry of Intellectual Disability, Leeds and York Partnership NHS Foundation Trust
Paul Maloret, Professional Lead and Principal Lecturer in Learning Disability Studies and Head of the Centre for Learning Disability Studies (tCLDS), University of Hertfordshire
Raja Mukherjee, Consultant Psychiatrist for People with LD and Lead Clinician Specialist FASD Behaviour Clinic, Surrey and Borders Partnership NHS Foundation Trust
Jean O’Hara, National Clinical Director for Learning Disabilities for NHS England
Swapnil Palod, Consultant Psychiatrist, Learning Disability Services, Hertfordshire Partnership NHS Foundation Trust
Georgina Parkes, Medical Lead and Consultant Psychiatrist in Learning Disability, Hertfordshire Partnership NHS Foundation Trust
Aruna Sahni, Consultant Psychiatrist in Intellectual Disability, Your Healthcare, Kingston, Surrey
Petula Truscott, Community Learning Disabilities Nurse, Waltham Forest Community Learning Disabilities Team, North East London NHS Foundation Trust
Nick Wright, former Chief Executive, Books Beyond Words
BARONESS SHEILA HOLLINS (MB, BS, FRC Psych, FRCPCH), the Founding Editor-in-Chief of this website, is Emeritus Professor of Psychiatry of Disability at St. George's, University of London. In 2005, she was elected President of the Royal College of Psychiatrists. She is also Vice President of the Institute of Psychiatry and Disability. She has numerous publications on intellectual disability and mental health, and is also the editor of the 'Books Beyond Words' series of counselling picture books for people with intellectual disabilities. She is internationally known for her research into the effects of bereavement in the lives of people with intellectual disabilities.
Authors A – C
PAUL ADELINE worked as a Training Advisor at St George's, University of London for many years, teaching medical students how to communicate with people who have learning difficulties. This teaching has also proved useful to those working with people who use English as a second language. He also advised researchers, and sometimes spoke at conferences, about learning disability issues. Before he started working at St George’s, he was Arts for Access worker at CHANGE, a charity which empowers people who have learning disabilities, and who may also be deaf and blind. Part of his job at CHANGE was to help design the Picture Bank. He also spoke at conferences about issues concerning people with learning disabilities. Paul died in March 2022 but his profound contribution to our understanding and awareness of intellectual disability over many years will be his lasting legacy.
EIMEAR ALLEN (RNLD) qualified from London South Bank University in 2019 and has enjoyed working with people with intellectual disabilities and behaviours of concern and/or a mental health diagnosis. Eimear has been working more recently as a Covid-19 vaccinator and has enjoyed supporting people with intellectual disabilities to receive their vaccines both in the vaccination centre and in the community, making this a positive experience for them.
DAVE ATKINSON (RNLD, Dip App Psych, MSc) has worked as a Consultant Nurse in learning disabilities both in the NHS and Independent sectors since 2004. In recent years he has worked for and with various national agencies, on a range of policy initiatives; has undertaken numerous independent investigations and service reviews; and has contributed to several large-scale funded research programmes. He continues to engage in specialist clinical practice, having a background in Positive Behavioural Support and approaches to meeting the mental health needs of people with learning disabilities. He publishes regularly and has presented on a range of issues, at both domestic and international conferences.
HARINDER BAINS is Clinical Director and Consultant Psychiatrist in Intellectual Disabilities with Partnerships in Care. He was previously Lead Consultant Psychiatrist for Learning Disabilities at Surrey and Borders Partnership NHS Foundation Trust. He did his higher training in psychiatry of intellectual disabilities at Nottingham, Lincoln, and Rampton High-Secure Hospital, after completing his basic psychiatry training in London. His interests include legal and medical interface and he is currently pursuing a Masters in Mental Health Law (LLM).
ROGER BANKS is consultant in the Psychiatry of Learning Disability with Conwy and Denbighshire NHS Trust, North Wales, UK. He qualified from the University of Sheffield and completed postgraduate training in psychiatry in Sheffield. He has maintained a clinical interest in psychotherapy throughout his career and is a director and trustee of the Institute of Psychotherapy and Disability. He was one of the authors of the Royal College of Psychiatrists Council Report (CR116) on Psychotherapy and Learning Disability, published in March 2004.
DIANA ANDREA BARRON (MBBS CPE DRCOG DFFP MRCPsych MSc) is a Specialist Registrar in Psychiatry of Learning Disability working in Camden Learning Disabilities Service. Her current interests include, the Law in relation to medicine, transition, qualitative research and medical ethics.
DR SANDRA BAUM is head of learning disabilities (LD) psychological services and clinical director (LD) for Oxleas NHS Foundation Trust. She is a consultant clinical psychologist and a systemic psychotherapist. Sandra has worked with people with learning disabilities for 38 years. Her clinical work and research interests focus on using systemic approaches with families and staff teams, and on improving services for parents with learning disabilities. She completed her post-qualification doctoral research on the experience of mothers with learning disabilities losing custody of their children. She is co-editor of Intellectual Disabilities: A Systemic Approach (Karnac) published in 2006 and has written many articles on the use of family therapy with this client group. She is also co-editor of Good Practice Guidance for Clinical Psychologists when Assessing Parents with Learning Disabilities published by the British Psychological Society in 2011.
JANE BERNAL is Consultant in Developmental Neuropsychiatry in Cornwall Partnership Trust. Her clinical work is with adults with intellectual disabilities from West Cornwall who also have serious mental health problems, whether these are related to mental illness, autism, learned behaviour or a mismatch between the person and the place where they live or work. Her main interests are in the multidisciplinary assessment, diagnosis and treatment of complex mental disorders and in supporting people with intellectual disabilities to participate more fully in society. She believes that this includes enabling access to health services. She has a particular interest in cancer and palliative care services and in epilepsy. Her recent research focuses on access to cancer and palliative care services. Before she moved to Cornwall she worked at Southwest London Mental Health Trust and the Division of Mental Health at St George’s, University of London.
RUTH BEVAN is a Consultant in Gender Dysphoria in the Northern Region Gender Dysphoria Service, based in Newcastle-Upon-Tyne. She trained as a psychiatrist in intellectual disabilities and has previously worked in children and young people’s services. She specialises in gender dysphoria in those with neurodevelopmental conditions such as intellectual disability and autism spectrum disorder. Ruth is a college tutor for intellectual disabilities and is a member of the Royal College of Psychiatrist’s Autism Interest Group.
ELISABETH BLACKWELL edited a newsletter for parents of children with Down's Syndrome for many years. She has also taught a foreign language in further education classes and works as an interpreter. Her teaching has shown her that the imaginative translation of difficult concepts, including the use of an element of drama, can help them to be understood by people with intellectual disabilities. Her daughter's great interest in dance has led Elisabeth Blackwell to work as a costume designer and assistant of the special needs Larondina Dance Company which tours to display talent and to propagate positive attitudes towards people with intellectual disabilities.
JIM BLAIR is an Independent Consultant Nurse Learning Disabilities, Associate Professor Intellectual (Learning) Disabilities at Kingston University and SGUL; Learning Disability Nurse Advisor Labour Party; Chair/Clinical Advisor Learning Disabilities NHS England for Care Treatment Reviews; Member of the Nursing and Midwifery Council’s Fitness to Practice Panel; Consultant Health Advisor for MacIntyre; Independent Consultant Nurse Learning Disabilities West London NHS Trust; Member of the Learning Disability Nursing National Shared Decision-Making Council; Chair of the Royal College of Nursing London Board; and Patron of Dance Syndrome. Previously Consultant Nurse Learning Disabilities, Great Ormond Street Hospital (2013-2018); Consultant Nurse Learning Disabilities, St George’s Hospital (2008-2013); Learning Disability Advisor to States of Guernsey as well as Jersey; past President Royal Society of Medicine’s Council for Forum on Intellectual Disability; and Vice Chairman of Special Olympics Great Britain. Jim has been an Expert Advisor to Parliamentary Health Service Ombudsman; and Specialist Clinical Advisor to Care Quality Commission and Clinical Lead Health Inequalities at NHS England.
PENNY BLAKE has been working as a doctor in the field of psychiatry since 2003 and has specialised in Learning Disabilities since 2008. She is a Specialist Trainee level 5 in Learning Disabilities in Abertawe Bro Morgannwg University NHS Trust.
TIM BOOTH was Professor of Social Policy in the Department of Sociological Studies at the University of Sheffield, where he ran the Supported Parenting Research Programme. He worked in the field of parenting by people with learning difficulties since 1990. His publications include "Parenting Under Pressure" (Open University Press, 1994), "Growing Up with Parents who have Learning Difficulties" (Routledge, 1998) and "Advocacy Support for Parents with Learning Difficulties" (Pavilion, 1998). He is Chair of the IASSID Special Interest Research Group on Parents and Parenting.'
PHIL BOULTER (RNLD, RMN, MA) has more than 40 years’ experience working within the field of learning disabilities. He is currently Consultant Nurse at Surrey & Borders Partnership Foundation NHS Trust and is also an honorary lecturer at Kingston University & St. Georges, University of London. Phil has published several articles and book chapters and has presented at conferences both nationally and internationally.
DEBORAH BOWMAN is Senior Lecturer in Medical Ethics and Law and Deputy Head of the Centre for Medical and Healthcare Education at St George's, University of London. Deborah's work focuses on the human interactions in ethics, both in healthcare education and clinical practice. As an accredited mediator, Deborah is particularly interested in the negotiation of boundaries between 'ethical dilemmas' and 'disputes'. Deborah Bowman has a commitment to encouraging engagement in clinical ethics contributing to public events such as the Cheltenham Science and Literary Festivals, an open lecture series organised by the University of the Third Age, and the non-academic media. Deborah has been an advisor and regular panellist on the BBC Radio 4 series 'Inside the Clinical Ethics Committee' since it began in 2005
ELSPETH BRADLEY as psychotherapist, psychiatrist, teacher and researcher has worked with persons with intellectual disabilities over the past 20 years both in Canada (Universities of Toronto and McMaster, Hamilton Health Sciences Centre, and at Surrey Place Centre, Toronto), and in the United Kingdom (St Georges Hospital Medical School and Cornwall Partnership NHS Trust). She completed her Psychology degree at Queens University Belfast, Doctorate studies at University College London and Stazionne Zoologica Naples, Medical degree at University College London, Psychiatry training at the Maudsley and Bethlem Royal Hospitals and the Institute of Psychiatry, and Psychotherapy training at the Institute for the Advancement of Self Psychology, Toronto. Her clinical work, teaching and research has been nurtured by an enduring curiosity about the impact of developmental and other life circumstances on behaviour, self experience and self expression.
LISA BRIDLE (B. Soc. Wk (Hons), PhD.) is a social worker and mother of three. Since the birth of her son, Sean, who has Down's syndrome, she has been actively involved with disability advocacy and parent support organisations in Queensland, Australia. Lisa's doctoral research study, "Stories of Choice: Mothers of Children with Down Syndrome and the Ethics of Prenatal Diagnosis", examined the ethical issues presented by prenatal testing for disability. Lisa currently works for a community-based change organisation, Community Resource Unit Inc, in the role of leadership development for people with disability, families and others working for positive change in the lives of people with disability. These leadership development efforts are directed to assisting people with disability to belong to and contribute to community life. Lisa’s previous work roles have included disability advocacy, community development, and university teaching.
CARLY M BUSH (MBBCh, DCH, DRCOG) is a GP trainee from West London developing a special interest in paediatrics. She did her pre-speciality training in Surrey including posts in acute and long stay hospital wards, paediatrics and emergency medicine.
GARY BUTLER My work at St. George’s University of London started on the 8th of April 2002. My role includes teaching medical students and other healthcare professionals how to communicate with people with learning disabilities, as well as trying to help make documents for people with learning disabilities more accessible. I also work with the Baked Bean Theatre Company. This group of actors with intellectual disabilities has been putting on performances for ten years, as well as educating people at conferences throughout London and the southeast. Recently, I co-wrote a book called “A New Kind Of Trainer”, which gives a detailed account of how I went about finding and applying for the job at St. George's, as well as the different things that I do in the job.
PHOEBE CALDWELL is a practitioner who has been working for 30 years with people whose severe learning disabilities are linked with behavioural distress. Many of the children and adults she sees have Autistic Spectrum Disorder. She was a Rowntree Research Fellow for four years, looking at best practice. She teaches management, therapists, parents, teachers, advocates and carers, and is also employed by NHS, Social Services and Community and Education Services to work with individuals for whom they are finding it difficult to provide a service. In 2010 she was awarded the Times-Sternberg Prize for her work on autism and her contribution to the community, and later in 2011 she will receive a DSc from Bristol University for her work on autism.
SUE CARMICHAEL had a career in Health and Social care including as a Director of Nursing and in Government and with the Valuing People Support Team. In retirement she works mainly as a volunteer with the Challenging Behaviour Foundation as an adviser and with Beyond Words as Book Club champion for them and Kent Libraries.
SALLY-ANN COOPER is Professor of Learning Disabilities at the University of Glasgow and Honorary Consultant in Learning Disabilities Psychiatry with the Greater Glasgow Primary Care NHS Trust, Glasgow, UK. Her research interests are the health needs of adults with learning disabilities, particularly the epidemiology of mental health and mental ill-health. She chaired the working group which developed DC-LD.
DELPHINE COYLE is a Specialist Registrar in Child and Adolescent Psychiatry working in Camden MOSAIC, an integrated service for children and young people with disabilities or complex developmental needs. She enjoys research and has done research into Community Treatment Orders (CTOs) and Metabolic Syndrome and is the first author of multiple publications, including most recently in the Royal College of Psychiatrists' Journal, 'The Psychiatrist'. She was one of only four Core Trainee Doctors nationally to be shortlisted by the Royal College of Psychiatrists for the Core Psychiatric Trainee of the Year Award 2010.
Authors D – N
SHOUMITRO DEB is Professor of Neuropsychiatry and Intellectual Disability in the Division of Neuroscience at the University of Birmingham, Birmingham, UK. He has been involved for many years in research in the field of neuropsychiatry of intellectual disability and the neuropsychiatric consequences of acquired brain injury.
ELIZABETH DORMANDY (MSc) is Research Fellow in the Psychology and Genetics Research Group at King's College, London. Trained in biochemistry, she worked for three years educating health professionals about prenatal screening. She is currently completing the final year of her PhD examining the influence of health professionals and service delivery upon uptake of prenatal screening tests.
MARGARET FLYNN is the Director of Flynn and Eley Associates Ltd and the Commissioning Editor of the Journal of Adult Protection. A former academic, she was the first Chair of the National Independent Safeguarding Board in Wales. This Public Appointment followed a commission from the then First Minister of Wales to review the deaths, abuses and neglect in care homes for older people in south east Wales. Entitled In Search of Accountability, the review was published by the Welsh Government in 2015. She has led the safeguarding reviews concerning Winterbourne View Hospital, Mendip House, Atlas Homes, Muckamore Abbey Hospital and, latterly, Cawston Park Hospital. She is a Director of All Wales People First and a Trustee of Anheddau.
PETER GILBERT was a Fellow in Social Care with the National Institute for Mental Health in England (NIMHE)/Social Care Institute for Excellence (SCIE), and an Associate Consultant with the National Development Team (NDT). He was also a visiting research associate at Staffordshire University. He worked for many years with people with learning disabilities and their carers, and was formerly Director of Social Services for Worcestershire. His book, The Value of Everything: Social Work and its Importance in the Field of Mental Health, was published in June 2003. He died in December 2013, and we remain very grateful for all his work.
DR DAN GORDON is an Associate Professor in Cardiorespiratory Exercise Physiology within the Cambridge Centre for Sport and Exercise Sciences at Anglia Ruskin University. Dan has published over 50 peer-reviewed papers and abstracts, has published a textbook on Coaching Science and contributed to chapters in a number of others. Additionally, he leads a PhD programme within the area of limitations to cardiorespiratory health and exercise. Dan was the consultant physiologist to the Great Britain Paralympic Team from 2000-2004. He is currently leading an International collaboration between the Canadian Down Syndrome Society, FCB Toronto, Brain-HQ and Bliss, into the benefits of prescribed exercise on the physical and cognitive health of those with Down’s Syndrome.
ROB GREIG is National Director of Implementation for Valuing People. He was previously director of organizational development at the Institute of Applied Health and Social Policy, King's College, London, and held senior management positions in learning disability in both the NHS and local government.
ANGELA HASSIOTIS is a clinical academic at the Royal Free and University College Medical School and Consultant Psychiatrist in Intellectual Disabilities in Camden. She is author of several original papers and co-supervisor/applicant of an MRC funded project on the epidemiology and sub-typing of dementia in older people with ID (M-Bold study). Research interests of the unit of intellectual disabilities at University College London (Bloomsbury campus) include evaluation of mental health services, epidemiology of mental disorders and service use in people, diagnostic issues across the lifespan in intellectual disabilities and ethics in clinical practice.
CRISPIN HEBRON (RNLD, Dip SW, BSc (Hons), MSc) is currently employed as a Consultant Nurse in a Mental Health and Learning Disability Foundation Trust; having recently worked with NHS England as a Clinical Lead to reduce health inequalities for people with learning disabilities. Crispin previously worked in the NHS and Third sector in a range of nursing, project and leadership roles; including contributing as an investigator to the Confidential Inquiry into premature deaths in people with learning disability published in 2013, run by the Norah Fry Research Centre at Bristol University. Crispin has published various articles and book chapters focussing on health issues and the delivery of effective services for people with learning disabilities.
PATRICIA HOWLIN is Emeritus Professor of Clinical Child Psychology at the Institute of Psychiatry, Psychology and Neuroscience, King’s College London. Her principal research interests focus on the life-time trajectories of individuals with autism and other developmental disorders, and on developing intervention programmes that may help to improve outcome. Professor Howlin is a Fellow of the British Psychological Society, President of the Society for the Study of Behavioural Phenotypes and past Chair of the UK Association of Child Psychology and Psychiatry. She is a founding editor of the journal “Autism” and author of over 200 research publications. Recent awards include the INSAR Life-time Achievement Award and the Kanner-Asperger medal from the German, Austrian, Swiss Society for Research in Autism Spectrum Conditions.
JANE HUBERT was Senior Research Fellow/Honorary Senior Lecturer in Social Anthropology in the Division of Mental Health at St George's, University of London. Her main interests were the familial, social and cultural aspects of intellectual disability, especially with regard to people with severe intellectual disabilities and mental health problems, and their families; and also the experience and effects of institutionalization and deinstitutionalization on social, individual and gender identity. Her research included bereavement and loss; black and ethnic minority family carers and psychotherapeutic outcomes for young men who have been abused and who show abusive behaviour. Jane died in June 2019 but her contribution and commitment to this website, both as an author and for many years, as Social Sciences Editor, continues to be very important and greatly valued.
RAY JACQUES is a Consultant Psychiatrist and Clinical Director for Learning disability Services in Gwent Healthcare NHS Trust, Gwent, UK. He has an interest in systemic therapies and family and disability issues.
MICHAEL KERR is Professor of Learning Disability Psychiatry at the Welsh Centre for Learning Disabilities, Cardiff, UK. He qualified at Bristol University and trained as both a general practitioner and a psychiatrist. His research interests are in epilepsy and healthcare delivery to people with learning disabilities.
ANNA LAWS is a Clinical Psychologist and psychosexual therapist leading on psychological therapies in the Northern Region Gender Dysphoria Service, which offers psychologically informed medical transition for people with gender dysphoria. Her work involves supporting the people who have the most difficulty with their path through medical transition, because of factors such as complex co-morbidities of physical and mental health, intense social deprivation and neurodiversity. She is privileged to spend time with trans and non-binary people thinking and talking about their experiences, often over a significant period of time. She is particularly committed to educating healthcare professionals in gender affirming healthcare in the wider NHS.
MARY LINDSEY is Consultant in Learning Disability and Child and Adolescent Psychiatry in the Cornwall Partnership NHS Trust, Cornwall, UK. She qualified from Bristol University and trained in psychiatry in Oxford. She has been senior policy adviser in learning disability to the Department of Health, and chair of the Faculty for the Psychiatry of Learning Disability in the Royal College of Psychiatrists. Her special interests include autism, epilepsy and the development of mental health services for children and adolescents with intellectual disabilities.
GIRI MADHAVAN (MBBS MSc(Epidemiology), MBiochem(Oxon), MRCPsych) is a Consultant Psychiatrist in Intellectual Disabilities based in West Midlands, UK. He is Clinical Lead for Digital Transformation in his Trust. He is particularly interested in research and application of digital advances across disciplines for the benefit of people with intellectual disabilities and those supporting them. He is a founding member and executive committee member of the Royal College of Psychiatrists' Digital Special Interest group and former President of the Oxford University Scientific Society.
PAULA JEAN MANNERS is a Highly Specialist Clinical Psychologist and Lecturer with a long- standing interest in intellectual disability, which took hold when she was a primary school teacher. As a specialist teacher in child and adolescent psychiatric unit, she became curious about the emotional aspects of disability. Her interest in the impact of disability on the individual’s mind (inner world) and their relationships is reflected in her continued training in psychoanalytic psychotherapy at the Tavistock Clinic. Paula currently works clinically for St. George’s Mental Health Trust with people who have both a diagnosis of an intellectual disability and a psychiatric disorder. She is also responsible for the co-ordination, development and teaching of the Intellectual Disability Curriculum at St. George’s University of London and works on projects addressing inequalities in healthcare provision. Paula is also a qualified and experienced researcher, trained at Trinity College Dublin; she has a particular interest in qualitative methodologies.
THERESA MARTEAU (PhD, CPsychol) is Professor of Health Psychology and Director of the Psychology and Genetics Research Group at King's College, London. Over the past 20 years she has been conducting research on psychological aspects of prenatal testing and other types of health risk assessment.
MALCOLM McCOUBRIE (MB BS FRCGP DPMSA) is an Honorary Senior Lecturer in Disability at St George’s University of London. He has interests in disability, chronic illness and undifferentiated disorders, but has now retired from hand-to-hand General Practice. He had a major role in the development of the St George’s Health Check Questionnaire but now concentrates on a long-standing interest in hydrotherapy.
VIVIANE MERZBACH has been at the Cambridge Centre for Sport and Exercise Sciences at Anglia Ruskin University since 2013, currently working as a Lecturer in Sport and Exercise Sciences and being part of the Performance and Exercise Testing Consultancy Team undertaking physiological monitoring for fitness and health. Viviane has also been a research assistant for numerous projects in physiology, biomechanics, and nutrition, which has led to over 20 peer-reviewed papers and abstract publications in the field. At present, she is the project coordinator and data collector on the MinDSets research study led by Dr Dan Gordon, investigating the benefits of prescribed exercise on physical and cognitive health in the Down Syndrome population. This project is a collaboration between Anglia Ruskin University, the Canadian Down Syndrome Society, FCB-Toronto, BrainHQ and Bliss.
DEBRA MOORE is VPST Regional Advisor for Yorkshire and the Humber. She has worked in the field of learning disabilities for over 20 years in a range of settings, her previous posts include Nurse Consultant and Nurse Advisor for Learning Disabilities at the Department of Health and she is a former member of the Learning Disability Task Force. Debra has a particular interest in supporting the health needs of people with learning disabilities and in the performance of health services.
GWEN MOULSTER, OBE (MA, Cert Ed, RNLD)is an independent consultant nurse and Honorary Senior Fellow with the Faculty of Health, Social Care & Education, Kingston University & St George’s, University of London. Gwen has extensive experience of working closely with people who have learning disabilities, families, advocates and others to improve the quality of health experiences and outcomes. In 2016 she was awarded the OBE in the Queen’s 90th birthday honours list, for services to nursing and people with learning disabilities. As well as her involvement in the development of the Health Equalities Framework (HEF), Gwen was instrumental in the development and implementation of the Moulster & Griffiths model for learning disabilities nursing and pain profiles for people with profound and multiple learning disabilities.
RAJA MUKHERJEE is a Consultant Psychiatrist for People with Learning Disability and Adult Neurodevelopmental disorders working for Surrey and Border Partnership NHS Foundation Trust. He trained and acted as lecturer under Professor Sheila Hollins at St George's, University of London. Dr Mukherjee set up and runs the National FASD specialist behaviour clinic in Surrey. He has given evidence on FAS to the House of Commons APPG, the BMA as well as a WHO panel investigating prevalence research into FASD. He is the only invited member of the international diagnostic consensus review by the NIAAA from the UK. He is also the Clinical Lead for Adult Neurodevelopmental disorders in Surrey and Portsmouth and Hampshire. Raja was made an Honorary Professor at the University of Salford in 2021.
MAX NEILL worked in Learning Disability Services for many years. He qualified as an RNLD in 2005 from St Martin’s College, Lancaster (now the University of Cumbria). He was a Person Centred Planning Coordinator with the Central Lancashire Primary Care Trust. He died in 2016 but his work remains greatly valued and important.
RUTH NORTHWAY is currently Professor of Learning Disability Nursing at the University of Glamorgan where she also heads the Unit for Development in Intellectual Disabilities within the Faculty of Health, Sport and Science. She has worked within the university sector for a number of years but prior to that she worked as a learning disability nurse in both hospital and community settings. During the period 2003 – 2007 she edited the journal Learning Disability Practice and has herself published a number of journal articles and book chapters. Her teaching and research interests relate mainly to the health needs of people with learning disabilities, ethics, and reducing vulnerability and abuse. In particular she has an interest in, and experience of involvement in, participatory approaches to research.
Authors O – Z
GREGORY O'BRIEN was Professor of Developmental Psychiatry at the University of Northumbria and Northgate Hospital, Morpeth, UK. His research interests included outcome studies in learning disability and the biological basis of behaviour disorder in developmental disability. He died in July 2014, and we continue to appreciate his great contribution to the psychiatry of intellectual disability.
ELENI PALIOKOSTA is a Child and Adolescent Psychiatrist who has been working for the last ten years in the field of Autism, ADHD and Developmental Disorders. She completed her PhD on Autism and she has done clinical research on ADHD and Learning Disabilities at the Institute of Psychiatry, King's College London. Since 2008, she has been working as a Consultant at MOSAIC CAMHS, an integrated specialist service for children with disabilities in Camden.
VEE PRASHER is a Visiting Professor of Neurodevelopmental Psychiatry and an NHS Consultant in Intellectual Disabilities based in Birmingham, UK. He qualified from Birmingham University and has completed three postgraduate degrees, with publication of 10 textbooks and over 100 articles in ID. His main research interests include genetics of ageing and mental health issues of adults with Down's syndrome. He has been appointed as a fellow of the International Association for Scientific Studies in Intellectual Disabilities (IASSID). He continues to work as a medical advisor to the UK Down's Syndrome Association.
JAY RAO holds a full-time clinical faculty post with the University of Western Ontario. He is an Associate Professor in the Department of Psychiatry and Post Graduate Director with the Developmental Disabilities Division. He is also Physician Leader for the Dual Diagnosis Research and Treatment Program. He was an active member of planning and research Committees of the Southern network of Specialized care. He is a Consultant for the Central West Specialized Developmental Services and leads the Dual Diagnosis clinical programs. Dr. Rao has developed innovative programs and models of care, and is sought after as a clinician internationally. He has published research, lectured and taught, internationally, and is a member of national and international professional bodies. He has won national awards for service excellence and many awards for teaching. He was on the Board of Directors of OADD and chairs the publications committee, JoDD/OADD. Currently he is leading efforts to create an ECHO Hub in Southern Ontario Province. His primary interest is in understanding the neuro-cognitive basis for behaviours and the application of that knowledge to clinical practice.
SUNIL ROUTHU is a Core Trainee in Psychiatry of Learning Disability, working in Birmingham Community Healthcare NHS Trust, Birmingham, UK.
SARAH RUTTER was Information Manager of the Down's Syndrome Association from 1990 and 2003. During those years she responded to telephone and written enquiries from parents, carers and professionals about all aspects of Down's syndrome. Her work has given her an insight into the difficulties which the parents of people with intellectual disabilities encounter in their everyday lives. She is co-author of the Down's Syndrome Association's report "He'll Never Join the Army" (1999), which gave rise to the production of this website.
RUTH MYERS MD (formerly RYAN) works full time with people with intellectual disabilities. She has an academic appointment at the University of Colorado Health Sciences Center Department of Psychiatry. She also has guest faculty appointments at the University of Minnesota Department of Family Medicine and the province of Quebec. She is currently medical director for an organization in Sacramento California called STEP (Strategies to Empower People). Her most recent book is Individuals with Intellectual / Developmental Disabilities and Aggression, Self Injury, and/or Failure to Thrive: one comprehensive approach, and is co-authored with Stephen Myers PhD BCBA-d, North Star Press, 2017.
MANGA SABARATNAM is Consultant Psychiatrist in Learning Disabilities, Ealing, UK, Honorary Senior Research Fellow at St. George's, University of London, and Honorary Senior Clinical Lecturer at Imperial College, London, UK.
NEILL SIMPSON is a member of the Mental Health Tribunal for Scotland, UK. He was Associate Medical Director in NHS Greater Glasgow & Clyde from 2002 to 2012, and retired from clinical practice in the NHS in 2016. From 1985 to 1999 he was a general psychiatrist with special responsibility for learning disability in Manchester. He was involved in the development of the Psychiatric Assessment Schedule for Adults with Developmental Disabilities and he has research experience of validating assessment instruments.
HARRIET SLATER is a Consultant in Intellectual Disability Psychiatry in Aneurin Bevan University Health Board in Newport, South Wales. She has also been the current Chair of the Royal College of Psychiatrists Intellectual Disability Faculty in Wales since March 2020. She qualified at Southampton University and has completed her psychiatric training in the South West Peninsular and Wales Deaneries. During her training she spent additional time working in the psychological medicine (health liaison) team based at the John Radcliffe Hospital, Oxford. Her interests include reducing health inequalities for people with a learning disability.
SUSAN SNASHALL (MB.BS (Lond), MD) Consultant in Audiological Medicine since 1980; at St. George's, University of London since 1994. Her major interest is in Paediatric Audiology and in the hearing needs of adults with learning disability. People with Down's Syndrome form a high proportion of the clients seen in both clinics. Both clinics are multidisciplinary with Advisory teachers for the Hearing Impaired and Speech and Language Therapists for the Hearing Impaired. Her approach to the development of communication skill reflects her belief that the method chosen should be client-centred and not restricted by dogma of policy.
SARITA SONI is a Consultant Learning Disability Psychiatrist working in NHS Greater Glasgow and Clyde, and Honorary Senior Lecturer at the University of Glasgow. She trained in Dublin and Cambridge. She spent three years working on a PhD at the University of Cambridge (conferred 2006), investigating psychopathology in people with Prader-Willi syndrome. Her current roles include link consultant for Epilepsy, and psychiatry representation to the NHS GGC LD and dementia framework group.
ANYA SOUZA has been a strong advocate for people with Down's Syndrome for many years. She started working with the Down's Children's Association in 1984 when she was 21 years old. When it became the Down's Syndrome Association she continued to work there as a clerical officer for 13 years. Anya then joined the Camden Society for Learning Disabilities as a receptionist before taking on the job of Development Officer at Young People First where, in 1994, she organised the first national conference for people with Down's Syndrome. Anya brought together people from all over London and further afield to discuss ways of improving the rights of people with intellectual difficulties. Her work also entailed travelling up and down the country talking to young people with intellectual disabilities about their relationship issues and sexual health needs. Anya now works as a stained glass artist and potter. For many years she has been a Trustee of the Down's Syndrome Association.
K LINDSEY H STEVENS (MA (Cantab), MBBChir, MRCP, FCEM, FRSA) has been a Consultant in Emergency Medicine and Honorary Senior Lecturer in South West London for more than 26 years. She is also Foundation Training Programme Director for her Trust and Training Programme Director for the St George's rotation in Emergency Medicine. Dr Stevens also works with the Home Office and Department of Health on tackling violence against women.
SHUICHI SUETANI wrote his article “Shine a Light” when he was a final year medical student at the University of Otago in Dunedin, New Zealand. He is now a community psychiatrist in Brisbane, Australia. Since completing medical school, he has accumulated numerous publications, completed a PhD exploring the epidemiological relationships between physical activity and mental disorders using large Australian datasets, and became Deputy Editor for Australasian Psychiatry.
ALICE THACKER (PhD (Lond), LCST, FRSM) is a Senior Lecturer in Psychiatry of Disability, St. George's, University of London. External Tutor, Oxford University. She is a Speech and Language Therapist whose main research interest is the development of equitable and accurate assessment of patients who do not use conventional spoken language. She initiated a programme which recruits and employs actors with learning disabilities as simulated patients in training and assessing medical students. This was among a number of innovations in involving service users by members of the Division of Mental Health which won a BUPA Foundation Communication Award in 1998.
YOGESH THAKKER is a Consultant Psychiatrist in Developmental Disability and practices from his private clinic (Manor Clinic) in Edmonton, Alberta, Canada. He trained in Psychiatry in London (UK) for seven years. During this time, he was awarded Membership in Psychiatry (MRCPsych) and certificate of completion of training (CCT) in Psychiatry of Intellectual Disability. He is an Assistant Professor in Department of Psychiatry, University of Alberta, Edmonton. He works at Adult Convulsive Disorder Clinic and Adult FASD Clinic at Glenrose Hospital in Edmonton. He also works at Alberta Hospital, Edmonton as an in-patient psychiatrist for people with Developmental Disabilities. He was a visiting lecturer in University of Hertfordshire, UK. He has completed a one-year certificate course in “Managing in Health and Social Care” from De Montfort University, UK. He has special interest in psychiatry of developmental disabilities such as Autism Spectrum Disorder and Intellectual Disability, teaching and health-care management.
IRENE TUFFREY-WIJNE (RN, PhD) is Professor of Intellectual Disability & Palliative Care at Kingston University & St George’s University of London. She has extensive clinical experience in both intellectual disability and palliative care services. Since 2001, Irene has led a programme of research focusing on intellectual disability, bereavement and palliative care. She has published widely and presented her work in the UK and across the world, and is recognised as the leading international expert in the area of palliative care for people with intellectual disabilities. Inclusion of people with intellectual disabilities as study participants and as salaried co-researchers is a key part of her work. Irene is a founding trustee of the UK based (but international) Palliative Care of People with Learning Disabilities Network, and chair of the Reference Group for Intellectual Disabilities of the European Association of Palliative Care.
SUE TURNER trained as a nurse for people with learning disabilities in Bristol. She has worked within training, as a Nurse Advisor in Gloucestershire, and has managed a variety of services for people with learning disabilities in Gloucestershire and Bristol including community learning disability teams. Sue was the Valuing People Lead in the South West Region for four-and-a-half years, before joining the National Development Team for inclusion (NDTi) to lead on their input into the Learning Disability Public Health Observatory (IHaL). She was the learning disability lead at the NDTi for four years and then stepped down and became an associate at NDTi, working on projects mainly relating to health and people with learning disabilities.
JO VIOLET (DCH MRCPsych) is a Consultant Child & Adolescent Psychiatrist, at the CAMHS for Special Needs within Camden. Her clinical work includes working with adolescents and children who have an intellectual disability or autism and where there is a significant mental health problem. She also has an interest in psychotherapy, having completed a Diploma course in Child and Adolescent Psychotherapy at the Tavistock Clinic and is currently training in adult Jungian analysis.
LAURA WAITE has worked in services for people with disabilities for eighteen years, as support worker, home manager, day service manager and Care Manager in a variety of health, social service and voluntary sector settings across the UK. In 1994, she moved into the field of Speech and Language Therapy for Symbol UK Ltd and in 1996 trained as a Hearing Therapist specialising in service provision to children and adults with learning disabilities, eventually becoming Symbol's Training and Development Manager. She joined RNIB's Multiple Disability service in April 2001.
J. MARGARET WOODHOUSE is currently a Senior Lecturer in the Department of Optometry & Vision Sciences, Cardiff University. Maggie runs the Special Assessment Clinic which provides eye examinations for infants, children and people with special needs. Her research interest is the development of vision in children with disabilities, and the effects, particularly on education, of visual impairment. Maggie has been instrumental in developing new tests and techniques to allow the assessment of vision in people with limited communications. In recognition of the positive impact of her work, Maggie was awarded an OBE in 2014, a Lifetime Achievement Award from the Association of Optometrists in 2015 and the Down’s Syndrome Vision Research Unit, which she leads, received a Queen’s Anniversary Prize in 2018.
JOYCE WHITTINGTON was a Senior Research Associate at the University of Cambridge prior to her retirement in 2010. Originally a mathematician, she later also graduated in psychology followed by a PhD on the topic of dyscalculia. Moving to Cambridge in 1988, she worked on human-computer interaction with the Medical Research Council, then as a psychologist on the Health and Lifestyle Survey at the University of Cambridge, before joining Tony Holland in 1998 to work on Prader-Willi syndrome. Their collaboration, together with colleagues in Cambridge and Birmingham, led to several research grants, some important original findings, a wealth of published papers, and a book on Prader-Willi syndrome published in 2004.
FIONA YARON-FIELD is a practising artist who has been using photography for over 25 years. She is a qualified Arts Psychotherapist and holds an MA (distinction) in Photography. Fiona has published 'Up Close, a Mother's View' (Bunker Hill Publishing, 2008). In her book she describes, through image and text, her relationship with her daughter Ophir who has Down's syndrome. She is a founding member of Shifting Perspectives - International Touring Exhibition challenging existing images of Down's syndrome. Fiona is a Photo-voice trained participatory photography facilitator which enables marginalized groups to use photography to represent themselves, to communicate their experience and to raise awareness. Fiona is also one of the founders and co-editors of 'Uncertain States' a lens-based contemporary photography platform. Fiona has participated in symposiums, publications and international exhibitions. Alongside her photography practice she works as an arts psychotherapist for 'Street Talk', offering therapy to vulnerable women and in private practice.