First five-year period: 2002-2007
In 2002 the Health Foundation awarded a grant to establish The Health Foundation Chair in Learning Disabilities at the University of Cambridge. During the first five years of the project we achieved the following:
- We have established the interdisciplinary Cambridge Intellectual and Developmental Disabilities Research Group (CIDDRG), based in the Department of Psychiatry, University of Cambridge, and led by senior staff in psychiatry, psychology, and sociology. We also established a senior post in molecular biology at the Babraham Institute near Cambridge. The holder of this post has moved to the University of Cardiff but remains closely linked to the CIDDRG. Over this period, we have established academic links with other departments at the University of Cambridge and with other universities, both in the above disciplines and a range of other disciplines, including genetics, geography, computer science, law, ethics, and philosophy.
- We are founder members of the Centre for Participation together with Speaking Up, the Faculty of Education at the University of Cambridge, the Regional Valuing People Support Team, and local statutory services. The aim of this Centre is to support research with and by people with intellectual disabilities and ensure that the findings are disseminated to those whom they will benefit. We have also supported the voluntary sector, working with Respond, Speaking Up, the Home Farm Trust, the Down’s Syndrome Association, the Prader-Willi Syndrome Association, the Tuberous Sclerosis Association, local and national Mencap, and Umbrella Autism. The CIDDRG is a group member of the British Institute of Learning Disabilities, as well as the International Association for the Scientific Study of Intellectual Disabilities (IASSID). We have hosted and actively participated in research meetings of IASSID and of other organisations, concerned with the well-being of people with intellectual disabilities.
- We have undertaken major grant-funded research projects under four broad themes relating to intellectual and developmental disabilities: biologically orientated ‘syndrome-based’ research, neuropsychiatry and autism spectrum conditions, clinico-legal studies, and citizenship. As other material on the website indicates, we have used a broad range of approaches and methodologies, made possible by the range and extent of expertise available both in the CIDDRG, and through our collaborations. These projects have, in part, been conceptual but have also been practical, aiming to evaluate and/or inform policy and practice relating to legislation, service provision, clinical assessment, treatment and support, and advocacy.
- We have successfully obtained funding for postgraduates from a range of backgrounds, including psychiatry, psychology, geography, social anthropology, and social work to carry out studies relating to people with intellectual and developmental disabilities. So far, nine students have been awarded PhD degrees, with four other students at earlier stages of their doctoral studies.
- Our research has directly informed policy and practice through the submission of evidence to Government Departments and by informing good practice guidance. Our work in this area has included submissions relating to the Mental Capacity Act 2005 and its Code of Practice, the pilot Independent Mental Capacity Advocates (IMCAs) programme as it has developed, the Parliamentary enquiry into the human rights of people with learning disabilities, and the consultation on ‘No Secrets’ (relating to the abuse of vulnerable adults). Members of the group have also contributed to the development and publication of assessments for establishing financial decision-making capacity (published by BILD), dementia in people with Down’s syndrome (CAMDEX-DS, published by CUP), best practice in the care of people with Prader-Willi Syndrome, and best practice in the care of people with intellectual disabilities and dementia (published jointly by the RC Psychiatry and the BPsS).
- Our group led the development of one of the research themes: ‘Mental health and psychological well-being among adults with long-term conditions’ in the CLAHRC (Collaborations for Leadership in Applied Health Research & Care) for Cambridgeshire & Peterborough, one of the developments funded by the NIHR to support health service research. The local CLAHRC is hosted by Cambridgeshire and Peterborough Foundation Trust and is a partnership with the Department of Psychiatry and other Departments and groups within the University of Cambridge (the Engineering Design Centre, the Judge Business School, and the Institute of Public Health), and local statutory agencies (such as NHS Cambridgeshire and Cambridgeshire County Council). Our theme, the ‘adult’ theme, which is one of three clinical research themes covering the lifespan, focuses on adults with intellectual and developmental conditions or acquired brain injury, and is led by Tony Holland, with other members of our group and in partnership with the Oliver Zangwill Centre for Neuropsychological Rehabilitation. In addition to the main project, the ‘adult’ theme supports other clinical research aiming to improve the lives of people with long-term conditions.
Second five-year period: 2007 to 2012
For the second five-year period, 2007 to 2012, we sought to ensure the long-term future of the CIDDRG and to establish ourselves as an international centre for the study of intellectual and developmental disabilities that drew upon the expertise that existed in the CIDDRG and at the University of Cambridge and to expand and to develop further links with other universities, statutory services and voluntary associations, both in the UK and internationally. We developed our work further in the following ways:
- Obtaining PhD studentships in the field of intellectual and developmental disabilities to be carried out from different disciplinary perspectives. We obtained both internal and external funding for PhD studentships and over this period, 12 students have completed PhDs or are near to completing, thereby supporting the next generation of academic researchers, academic clinicians, and policy-makers, in the UK and elsewhere.
- Within the framework of the CLAHRC, we have undertaken service-related research that focuses on gaining a greater understanding of the care pathways of men and women with intellectual and developmental disabilities, or acquired brain injuries, and the complex interdisciplinary and interagency arrangements that are required to provide ‘good practice’ in services that support people with these long-term conditions. This research has helped inform the Department of Health’s response to the exposure of abuse at Winterbourne View and has also informed local commissioning.
- We have continued to develop and support basic science studies in parallel with clinical studies, which are investigating the brain mechanisms that underpin some of the behavioural and psychiatric disorders that have been found to be associated with specific genetically determined syndromes. This has included studies on Down’s syndrome and dementia following the award of an MRC grant (with Dr Shahid Zaman, Professor David Menon, and Dr Peter Nestor); a study of the transition in eating behaviour in children under 5 years of age with Prader Willi Syndrome (with Dr Tony Goldstone, Imperial College, London); and a preliminary study of the use of vagus nerve stimulation to control the eating disorder of people with Prader Willi Syndrome. To do this we have further developed and maintained our links with major departments engaged in this research, particularly with Professors John Suckling and Paul Fletcher at the Wolfson Brain Imaging Centre; Dr Rick Livesey at the Gurdon Institute; Professor Patrick Chinnery at the University of Newcastle; Dr Tessa Webb and Dr John Arrand at the University of Birmingham; and Professor Chris Oliver also from the University of Birmingham.
- Led by Dr Howard Ring, studies have been completed on epilepsy in people with ID leading to the award of an HTA grant to investigate the role of epilepsy nurse specialists; on the outcomes of people who had brain tumours in childhood (in collaboration with Dr Mike Hawkins, Dr Helen Spondeas, Professor David Walker); the acquisition of new face representations in autism spectrum conditions; and investigations of task-related functional connectivity also in people with autism spectrum conditions.
- We have undertaken studies of the interface between clinical practice and the law. Specifically we completed a project on the Deprivation of Liberty Safeguards (led by Dr Isabel Clare) preparing a report for the Department of Health, and submitting evidence to the House of Lords Select Committee reviewing the Mental Capacity Act. Projects on environmental influences on offending, and a collaborative project with Dr Peter Langdon at UEA on the EQUIP treatment programme, have been undertaken. Other projects have included investigating the psychological impact of abuse (by Isabel Clare and Professor Glynis Murphy, Tizard Centre, University of Kent); and projects on access to healthcare; the extent and nature of need of people with ID requiring assistance with eating and drinking; and a study on the outcomes of safeguarding proceedings (led by Dr Marcus Redley).
Third five-year Period: 2012 to 2017
This is the final five years of the Health Foundation Grant which has provided core funding for our group since 2002. We are seeking to continue our work on the needs of people with ID by applying for major strategic grants as well as seeking funding for specific projects. Our group is part of the recently awarded renewal of the CLAHRC grant for a further 5 years funded by the NIHR (CLAHRC East of England). In addition, funding for core posts and for developing neurodevelopmental expertise within the Academic Department of Psychiatry is being sought. Specific projects that have continuing funding include studies on the relationship between Down’s syndrome and dementia, an HTA funded trial of the effect of epilepsy nurse specialist; environmental influences on offending by people with ID; and additional projects that are being undertaken as PhDs. Further applications are in submission. This final five years of the Health Foundation grant will inevitably lead to a reshaping of the focus of the group. Strong links remain with Cambridge and Peterborough Foundation NHS Trust through Howard Ring’s post as University Lecturer and Honorary Consultant Psychiatrist, Isabel Clare’s post with the CLAHRC and in her capacity as a clinical and forensic psychologist, and Shahid Zaman’s post as Affiliated Lecturer and Consultant Psychiatrist in learning disabilities.