The executive team meet quarterly with the core team and provide expert advice and support on all aspects of the study.
Prof. Carey Jewitt
Professor Carey Jewitt is the Director of UCL Knowledge Lab, a research centre based at the UCL Institute of Education (IOE), whose mission is to understand and to develop digital technologies to support and transform education, and beyond. Her research explores how digital technologies effects the ways that people interact, communicate and learn in schools, museums, at home and at work. She is also involved in the development of innovative methodologies to research digital environments, and most recently directed the ESRC funded project MODE: multimodal methods for researching digital environments. She has written and edited many publications in this area, including The Sage Handbook of Digital Technology Research (2013, with Price and Brown).
Prof. Angela Hassiotis
Angela Hassiotis is Professor in Intellectual disability at the UCL Division of Psychiatry and honorary Consultant Psychiatrist at the Camden Intellectual Disability Service.
One of her main research interests is the evaluation of interventions for challenging behaviour and mental disorders in people with intellectual disabilities across the lifespan. Current research projects include an HTA funded multicentre cluster randomised trial of positive behaviour support for adults with challenging behaviour, as well as collaborating on several other studies. She has authored many publications comprising original research, opinion pieces and editorials, book chapters, conference abstracts and an edited book on psychiatric aspects of intellectual disability. She supervises MSc and PhD students on projects relating to health services research on a number of topics, e.g. stigma, large data, mental health, dementia. She lectures widely nationally and internationally. In addition, she has received a number of teaching awards, has participated in two NICE guideline development groups and since January 2016 is the Editor-In-Chief of the Journal of Mental Health Research in Intellectual Disabilities.
Dr Irene Tuffrey-Wijne
Irene Tuffrey-Wijne (RN, PhD) is Associate Professor in Intellectual Disability & Palliative Care at St George’s University and Kingston University (London); she has close collaborative links with Maastricht University (Netherlands). 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, cancer and palliative care, completing a PhD in 2007. She has published widely and presented her work in the UK and across the world, and is recognised as a 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 was chair of the UK based (but international) Palliative Care of People with Learning Disabilities Network (2008-2014). She is the chair of the Taskforce on Intellectual Disabilities of the European Association of Palliative Care.
Ms Sam Kerry
Sam Kerry is the parent of three young people with learning disabilities and complex health needs. Sam has 20 years’ experience accessing various hospital services to meet her children’s care needs, including the transitional challenges into adult services.
Sam was previously a parent member of the research team on the ethnographic Stop Look Listen study. Her knowledge helped ensure data collection with children and young people and parents was carried out in an appropriate, accessible, sensitive and ethical manner.
Sam is very passionate about ensuring all services her children access promote equal opportunities, continually striving for a positive equality.
Dr Lucinda Carr
Dr Lucinda Carr is a consultant in Paediatric Neurology and Neurodisability at Great Ormond Street Hospital, London. Appointed in 1997, she qualified in Medicine at Bristol University in 1984 and obtained an MD in 1994, examining plasticity of the central nervous system and the effects of early brain damage.
Her particular interest is in Cerebral Palsy (CP) and Movement disorders: she was a member of European Consensus group for Guidelines in use of Botulinum toxin in CP and a member of the NICE Guideline development group for ‘The management of non-progressive spasticity in children’ (Guidelines published July 2012). She was also part of the Clinical Reference Group for paediatric neurosciences. She has published widely and contributed to many paediatric textbooks. She regularly contributes to meetings and teaching, including as a faculty member of British Paediatric Neurology Association training course. Much of her work involves working with children and families to promote meaningful improvements in function and in inclusion.
Dr Mark Whiting
Mark Whiting holds a dual appointment as Consultant Nurse for Children with Complex Health Needs with Hertfordshire Community NHS Trust and WellChild Professor of Community Children’s Nursing at the University of Hertfordshire. Mark has worked in the field of Community Children’s Nursing for the past thirty years, as clinician, service manager, researcher and lecturer. His PhD study, focused upon the experience of parents caring for children with disability, technology-dependence and life-limiting/life-threatening illness, was completed in 2009. Mark’s current research portfolio includes a study which is concerned with the experience of parents and nurses in relation to caring for children with complex health needs in community settings throughout the 24 hour day and a second study which is focused upon developing an intervention to enhance parental resilience in the context of their role as the primary carer for a child with complex health needs.