Learning about Intellectual Disabilities and Health

SHEILA HOLLINS (MB, BS, FRC Psych, FRCPCH), the Editor in Chief of this website, is Professor of Psychiatry of Learning Disability in the Division of Mental Health 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.

PAUL ADELINE: I have been working as a Training Advisor at St George's, University of London for about five 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. I also advise researchers, and sometimes speak at conferences, about learning disability issues. Before I started working at St George’s, I 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 my job at CHANGE was to help design the Picture Bank. I also spoke at conferences about issues concerning people with learning disabilities.

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.

Dr 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.

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.

ELIZABETH 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 Elizabeth 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 (MA,DipSW,PGDipHE,RNLD,CNLD) is Senior Lecturer in Learning Disabilities working at Kingston University and St.George's Hospital Medical School, teaching learning disability nurses, physiotherapists, radiographers, midwives, mental health nurses, social workers and general nurses. Jim is a qualified Learning Disability Nurse and Social Worker. He has been elected President of the Royal Society of Medicine's Council for the Forum on Intellectual Disability for two years from October 2006. He has a particular interest in how electronic technologies can enhance the lives of people with intellectual disabilities, their families and those who support them. He has written a number of publications about the use of the Internet by people who use services and health professionals.

TIM BOOTH is Professor of Social Policy in the Department of Sociological Studies at the University of Sheffield, where he runs the Supported Parenting Research Programme. He has been working 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.'

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 children. Since the birth of her son, Sean, who has Down 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 Queensland Advocacy Inc. as a bioethics advocacy project worker. The project aims to give people with disability a voice in bioethics discussions by holding gatherings, undertaking well-grounded research on a range of issues, and advocating for appropriate legislation and policies to better protect the rights and interests of people with disability.

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 disabilties have 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.

SUE CARMICHAEL is part of the Valuing People Support Team, at the Department of Health who is charged with making the Government white paper on learning disabilities - "Valuing People" happen. Her Region is the South East, and she takes a particular interest in long stay hospitals, NHS Campuses and Direct Payments for the National Team.
Sue is a Learning Disability nurse with a wide range of experience from institutional settings to community care, education and development, a trust nurse executive in a policy setting in Government. She was part of the team that developed the Government's new learning disability strategy, Valuing People.
Sue also worked at South Bank University in their social work and learning disability nursing team.

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.

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 Senior Lecturer in Mental Health and Learning Disabilities at the University of Sheffield, Sheffield, UK. Her research interests include the supports available to vulnerable adults, particularly those with complex needs; respite services; vulnerability at times of transition; manifestations of abuse; inclusive research; and the supports offered to vulnerable adults to make decisions.

PETER GILBERT is 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 is also a visiting research associate at Staffordshire University. He has 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.

DAN GORDON is based at the Department of Sports Science, Anglia Ruskin University, Cambridge, UK. He is Senior Lecturer in Exercise Physiology, Pathway Leader Sports Science and consultant physiologist to Great Britain's Paralympic athletes 2000-2004. He has worked extensively with both elite and non elite athletes with special interest in athletes with a disability. Through this specialised area Dan has focused on the physiological and metabolic responses to training with particular reference to Cardiovascular adaptations. Dan has published works on physiological responses to both acute and chronic bouts of exercise showing the relationship between diet, metabolism and skeletal muscle physiology.

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.

Dr 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.

PATRICIA HOWLIN is a Professor of Clinical Psychology at St. George's, University of London. She is a Consultant Chartered Clinical Psychologist with a PhD in psychology from the Institute of Psychiatry in London, and is a Fellow of the British Psychological Society.
She has been involved in research and clinical work with people with autism and their families for many years, and research studies involve home-based treatment programmes; follow-up into adult life; teaching Theory of Mind, and the effectiveness of supported employment schemes. She is the author of many publications in the field of autism and other developmental disorders and has been an invited lecturer in many countries across the world.

JANE HUBERT is 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 are 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 recent research includes bereavement and loss; black and ethnic minority family carers and psychotherapeutic outcomes for young men who have been abused and who show abusive behaviour.

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.

Professor 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.

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.

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.

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.

RAJA MUKHERJEE is a Consultant Psychiatrist for People with Learning Disability working for Surrey and Border Partnership Trust. He trained and acted as lecturer under Professor Sheila Hollins at St George's, University of London and retains Honorary time there teaching and contributing to the research output of the Division of Mental Health. Dr Mukherjee is a member of the NO FAS UK medical Advisory panel, has given scientific evidence to the Department of Health (UK), a House of Lords committee, and contributed to BMA policy documents to guide doctors how to manage FAS in a UK context.

Max Neill has worked in Learning Disability Services for 15 years. He qualified as an RNLD in 2005 from St Martin’s College, Lancaster (now the University of Cumbria). He is currently working as a Person Centred Planning Coordinator with the Central Lancashire Primary Care Trust.

GREGORY O'BRIEN is Professor of Developmental Psychiatry at the University of Northumbria and Northgate Hospital, Morpeth, UK. His research interests include outcome studies in learning disability and the biological basis of behaviour disorder in developmental disability.

VEE PRASHER is an Associate Professor of Neurodevelopmental Psychiatry based in Birmingham, UK. He qualified from Birmingham University and has completed three postgraduate degrees. His main research interests include ageing and physical health issues of adults with Down's syndrome. He has published numerous research articles, and edited a number of textbooks. He was recently appointed as a fellow of the International Association for Scientific Studies in Intellectual Disabilities (IASSID).

Dr JAY RAO has published numerous articles and research papers in peer reviewed international journals. He is Associate Professor in the Department of Psychiatry and Family Medicine, University of Western Ontario. He is Physician Leader in the Schizophrenia Treatment and Research Program and on the Developmental Behaviour Management Program. He is also Director of the Developmental Disabilities Program for Postgraduate Education and a Consultant to the DDP in the Department of Psychiatry as the Dual Diagnosis specialist.

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. She is also the parent of a young woman who has Down's Syndrome.

RUTH RYAN works full time with people with intellectual disabilities. She is Assistant Clinical Professor of Psychiatry at University of Colorado Health Science Center, and directs The Community Circle, a non-profit research and education foundation which provides mental health and behavioural services to adults with developmental disabilities across Colorado. Among her publications are (2001) Handbook of Mental Health Care for Persons with Developmental Disabilities. Quebec: Diverse City Press Inc.

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 Consultant Psychiatrist with the Primary Care Division of NHS Greater Glasgow, Glasgow, UK, working in the Learning Disability Partnership. 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.

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.

Photo: Family Circle

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 the past 8 years she has been a Trustee of the Down's Syndrome Association.

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 asserting 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.

Dr 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.

IRENE TUFFREY-WIJNE trained as a nurse, and has a degree in Palliative Care Nursing. She has worked in the fields of both Intellectual Disabilities and Palliative Care. She currently works at St George's, University of London (Division of Mental Health) in London, where she is developing information and training about cancer and palliative care for people with intellectual disabilities, their carers and professionals.

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. After qualifying as an Optometrist more years ago than she will admit to, Maggie carried out her PhD studies in Cambridge and the joined the staff at Cardiff, where she is actively involved in teaching and research. Maggie runs the Special Assessment Clinic to provide eye examiniations for infants, children and people with special needs. From this arose her research interest in 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. She often lectures to outside groups, including Optometrists, Teachers, Psysiotherapists and Occupational therapists on all aspects of vision in special needs.

FIONA YARON-FIELD has worked as a free-lance photographer and Art Psychotherapist for over ten years. Her work has primarily focused on 'the family'. Photographing events, portraits and life story work. She has worked in various community based projects teaching photography and facilitating groups of children and adults with both mental and physical disabilities. She currently works on her own photographic projects and is the mother of two girls. Ophir her eldest has Down's Syndrome. Fiona is a volunteer at Down 2 Earth a youth group run by The Down's Syndrome Association and is a member of Digit which works for inclusion in mainstream education.