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Learning Disabilities Research Group
Department of Psychiatry
Section of Developmental Psychiatry
University of Cambridge
Douglas House, 18b Trumpington
Road, CAMBRIDGE, CB2 8AH
United Kingdom
Enquiries & Reception:
+44 (0)1223 746124
+44 (0)1223 746100
FAX: +44 (0)1223
746122
Email: Sue Hampton-Matthews
Funding from the Greek Government, Greek State Scholarship Foundation.
Panagiotis Siaperas, together with Howard Ring and Tony Holland
Oct 2005-Sept 2007
The main purpose of this research project is to investigate and attempt to give a statistically and methodologically valid answer to the question of whether people with Asperger’s syndrome have motor coordination problems (developmental coordination disorder, dyspraxia or clumsiness). In addition it will explore if a cause of this impairment is sensory in nature (problems in Sensory Integration) and will attempt to investigate if there is any connection with the psychological theories of autism.
National Alliance for Autism Research
Stacey Rand, Howard Ring and Lydia Luke
Jan 2005-Dec 2006
This
study uses Event Related Potential (ERP) methodology to investigate
semantic processing in people with Asperger’s Syndrome. Behavioural
studies and clinical observation suggest that some of the difficulties
that people with AS have in extracting meaning from language and other
semantic stimuli may be related to impaired use of context. In this
study we are using an ERP as a possible biological marker of the
process by which visual information is integrated into context. This
study aims to address the questions of whether the process of ‘semantic
integration’ is impaired in people with AS, and whether changing how
the information is presented affects this integration process.
DECISION-MAKING, ADVOCACY, CITIZENSHIP AND ETHICAL ISSUES
National Institute for Health Research Research for Patient benefit
Marcus Redley
January 2008-December 2011
Mealtimes for people with profound and multiple disabilities carry a significant health risk as dysphagia is common and can lead to chronic malnourishment, respiratory illness, and asphyxiation. These risks are managed by individualised dietary regimes and associated support, or when severe, by fitting a percutaneous endoscopic gastrostomy (PEG). While these interventions ensure safe and adequate nutrition, they often transform meals into clinical procedures excluding people with profound and multiple disabilities from the pleasures and
convivial opportunities that mealtimes provide. Using a mix of quantitative and qualitative methodologies, the research will: 1) assess the prevalence, nature, and degree of dysphagia among adults with lifelong profound and multiple disabilities in Cambridgeshire and Essex; 2) determine how eating and drinking support can be provided in ways that ensure safe and adequate nutrition and are socially inclusive; 3) inform service development and good practice that goes beyond that of ‘clinical advice’ and addresses issues of partnership, and social inclusion.
Marcus Redley, Isabel Clare & Anthony Holland
Funded by the Department of Health
January 2007 to March 2007
The frameworks provided by the Mental Capacity Act 2005 and its accompanying Draft Code of Practice provides guidance on ‘good practice’ in supporting in-patients to make decisions for themselves (using a functional approach) and to participate in decisions that have to be made for them. Briefly, these frameworks include:
• taking all practicable steps to enhance capacity (e.g., trying to minimise anxiety or stress by making the person feel at ease, seeking family involvement, presenting relevant information in ways that are accessible to the patient);
• using the ‘checklist’ to consider the ‘best interests’ of a patient who lacks capacity to make for him or herself the specific decision that needs to be made.
In this project we will examine the types of care or treatment decisions that patients need to make following admission to a general hospital and then use the frameworks provided by the Mental Capacity Act 2005 and the Code of Practice to investigate:
• the types of support patients currently receive from health care practitioners to maximise their capacity to make decisions in connection with their care or treatment;
and
• what procedures are followed when a decision needs to be made on their behalf.
This project will establish a methodology and use it to collect baseline data, against which the future impact of the Mental Capacity Act 2005 can be evaluated.
Face-to Face Communication in the Self-advocacy Movement: an exploratory case study.
Health Foundation & Faculty of Education, University of CambridgeMarcus Redley, Isabel Clare, Darin Weinberg and Lesley Dee
May to December 2004
The
purpose of the research was to examine the effectiveness of
self-advocacy in challenging the traditional relationship between
service users and service providers. An innovative model of
self-advocacy, the Parliament for People with Learning Difficulties
attempts to provide a local voice to men and women with learning
difficulties through representatives - Members of Parliament -
who are elected by their peers. Along with ethnographic observation a
session of the Parliament was video-recorded and analysed.
Marcus Redley, Lydia Luke, Isabel Clare, Tony Holland
October 2006 – March 2007
The
Independent Mental Capacity Advocacy IMCA service is a key provision in
the Mental Capacity Act (England & Wales) 2005 (MCA). Adults who
lack capacity and have no family or friends to speak on their behalf
are particularly vulnerable. Such adults, faced with a decision
about serious medical treatment (SMT) or a change of accommodation,
will be entitled to the services of an IMCA case-worker. This project
looks at IMCA in the Health Service, specifically SMT decisions. Making
a SMT decision brings together legal definitions of ‘best interests’ as
delineated in the MCA and clinicians’ understanding of ‘good clinical
practice’. This investigation will focus on the IMCA activity and
experiences in four hospitals, where a pilot IMCA service has been
available since January 2006, and in four different clinical
specialities.
Department of Health
Marcus Redley, Isabel Clare, Michael Gunn, Tony Holland, Lydia Luke and Helen Keeley
January 2006 – September 2006
The Independent Mental Capacity Advocacy service is a key provision in
the Mental Capacity Act (England & Wales) 2005 (MCA). Adults who
lack capacity to make one or more decisions for themselves and have no
family or friends to speak on their behalf are particularly
vulnerable. Such adults, faced with a decision about serious
medical treatment (SMT) or a change of accommodation, will be entitled
to the services of an IMCA case-worker. The IMCA service will be the
first statutory provision of advocacy in England and Wales and when the
MCA comes into force in April 2007, all 152 Local Authorities must have
commissioned an independent provider of IMCA services. The Department
of Health ran a pilot IMCA service involving seven advocacy
organisations that we evaluated using a mixture of qualitative and
quantitative methods. The report prepared is available on the
Department of Health website: http://www.dh.gov.uk/PolicyAndGuidance/HealthAndSocialCareTopics/SocialCare/IMCA/fs/en
Political engagement in adults with learning disabilities: Participation in the 2005 general election.
Health Foundation
Marcus Redley & Helen Keeley
January 2006 – September 2006
Participation
in the democratic process is not only a legal right for people with
learning disabilities it is also a powerful symbol of their inclusion
as citizens within mainstream society. This research project involved
an audit of the marked electoral register for the May 2005 general
election: to identity the number of registered voters with a learning
disability living in Cambridgeshire, the number who actually voted in
the May 2005 general election and their place of abode. The findings
from this study have been presented as a poster at the 2006 meeting of
the Seattle Club and will be submitted shortly for publication.
Speaking Up
Marcus Redley and Dianne Hinds
October 2006-March 2007
Under
the Mental Capacity Act 2007, unbefriended adults who lack capacity to
make decisions about ‘serious medical treatment’ or change of
accommodation decisions will have a statutory right to an advocate.
Known as an Independent Mental Capacity Advocacy (IMCA). Our research
will focus on two key issues in the delivery of this new service: (i)
how IMCA caseworkers support a person judged to lack capacity to
participate in a decision and (iii) how IMCA caseworkers present their
clients’ best interests to health & social care practitioners. The
research will involve the collection and analysis of video data.
The Wellcome Trust
Mikey Dunn, Isabel Clare, Tony Holland
Collaborators: Dr Jennifer Clegg, Professor Michael Gunn, Dr John McMillan, Dr Marcus Redley
October 2005 – October 2008
This project examines, in the context of the Mental Capacity Act 2005,
the legal, ethical and practical aspects of substitute decision-making
on behalf of adults with intellectual disabilities who lack the mental
capacity to make one or more autonomous decisions. There are two main
elements to the project:
1) An examination of the legal and ethical
conceptualisation of substitute decision-making in legal, philosophical
and policy documents, focusing, in particular, on the development and
application of the "best interests" principle in both the common law in
England and Wales and the Mental Capacity Act 2005.
2) A study of the everyday decisions made, by direct
care staff, on behalf of men and women with intellectual disabilities
living in residential care. This includes decisions about what to eat,
how to plan the day, and where and when to go out. Applying a range of
qualitative methodologies, the aim is to examine the ways that carers
identify and operationalise the process of substitute decision-making
in this setting.
Down's Syndrome Association and The Health Foundation
Sarah Ball and Tony Holland
Sept 2005-Dec 2006
This project is a continuation of a longitudinal population-based study of ageing and Alzheimer’s disease in people with Down’s syndrome (DS) that began in 1994 and included all people with DS over the age of 30 within the Cambridgeshire Health District (74 people).
The longitudinal aspect of the study has focused on following up these individuals, in order to examine the course and progression of dementia as it occurs in this population. Particular emphasis has been placed on investigating the early stages of the disease. It has been hypothesized that the functions of the frontal lobes in particular may be compromised early, reflected by informant-reported changes in personality and behaviour, prior to the development of the clinical syndrome of AD.
The cross-sectional aspect of the study, using an expanded sample of older people with DS from Cambridgeshire and neighbouring health authorities (122 people), has focused on examining the relationship between early changes in personality and behaviour and performance on tests of executive function (EF), to provide further support for the early compromise of frontal lobe functions in AD in DS.
This work has required the development of specific tests of EF and the modification and validation of a diagnostic tool for use with older adults with DS (the CAMDEX-DS). Preliminary research has also begun into physical ageing in DS and its relationship to the development of AD.
National Institute for Health Research, Research for Patient Benefit Programme
Howard Ring together with Tim Croudace, Marcus Redley, Suan Goh, (Cambs & Peterborough Mental Health Trusts), Nick Wood, (Cambs & Peterborough Mental Health Trust) and Mark Deverill, (University of Newcastle) and Nigel Armstrong, (Univerity of Newcastle).
October 2007-September 2010
The Research for Patient Benefit Programme is a Nationally co-ordinated funding stream for regionally commission research. The main aim for the Research for Patient Benefit Programme is to support projects in health services research. The research that we will carry out under this heading is described below.
Background to the research: Epilepsy occurs in more than one fifth of the 2% of the UK population with a learning disability (LD) and is often more severe and difficult to treat, bringing additional health and financial pressures. Despite this it is not clear how best to treat epilepsy in those with LD and, because of brain abnormalities and additional health and behavioural issues often linked to LD, treatments used in the general population do not always work similarly in those with LD. As a result, various treatments are used for epilepsy in people with LD without knowing which may work best. Aims of the research: 1. To determine what treatments are currently used in people with epilepsy and LD. 2. To find out how effective and cost-effective the treatments used are. 3. To identify why particular treatments are chosen. 4. To identify which treatments are associated with better outcomes in epilepsy control, associated health-related problems, quality of life for patients and carers and financial costs. What the research will mean for patients: It will allow us to draw the first evidence-based conclusions about what may be the best treatment approaches for epilepsy in people with LD. Improving epilepsy management in this group will allow them to make the most of their intellectual abilities (which are often limited by epileptic seizures and drug side-effects). The reduced epilepsy, improved abilities and decreased reliance on carers will in turn improve quality of life and enhance social inclusion for this historically excluded and multiply disadvantaged part of society. Consequences for the NHS: As recognised in recent Government White Papers, the health of people with LD has been relatively neglected. This research aims to contribute to the reversal of this neglect. In addition, improving the efficacy and cost-effectiveness of what is a relatively common and expensive but largely hidden part of NHS activity should lead to cost-savings and more efficient care. Likely benefits to patients: This research will describe the NHS services and treatments currently used to manage epilepsy in people with a learning disability. It will discover which patients get which treatments, with what effects and outcomes. Results identifying current practice in matching particular treatment approaches to patients will provide a description of existing service activities that currently does not exist. This will provide an initial, valuable step towards describing what may be optimal treatments for epilepsy in people with LD. Improving epilepsy management in the LD group will reduce injuries and the limitations on independence and functioning that accompany poorly controlled epilepsy. It will enable patients to make the most of their intellectual abilities, which are often limited by epileptic seizures and drug side-effects and will reduce the burden of inappropriate antiepileptic drug treatment. The reduction in epileptic morbidity, improved abilities to function and decreased reliance on carers will improve quality of life and enhance social inclusion for these patients, who have historically been excluded and comprise a multiply disadvantaged part of society.
Wellcome Trust
Joyce Whittington, Tony Holland, Tessa Webb, Sarita Soni, Harm Boer and David Clarke
Jan 2003- Oct 2006
This follows on from our original population-based study of PWS. In particular, investigating in greater depth the findings of increased risk of psychotic illness in the maternal uni-parental disomy (mUPD) and imprinting centre (IC) defect genetic subtypes and the normal distribution of IQ in the PWS population (with mean 62). In the first part of this research, psychotic phenomenology in the main genetic subtypes and in non-PWS psychotic recruits is documented and comparisons are made between groups. Rates of psychotic and affective disorders in the PWS volunteers are compared between genetic subtypes. In the second part of the project, IQ is measured in people with PWS and in one or more siblings. The study also contains some new aspects of PWS functioning including emotion recognition, verbal fluency and child play.
Bailey Thomas Foundation
Joyce Whittington, Tony Holland, Jill Butler and Tony Goldstone (Hammersmith Hospital)
Aug 2005-July 2008
PWS has two distinct phases: during foetal life there is limited foetal movement, and at birth evidence of foetal growth retardation and severe hypotonia. The infant fails to thrive and tube feeding is frequently necessary. The second phenotype is from about two years of age, by which time weaning would normally have taken place. There is a marked propensity to excessive eating that continues throughout life and obesity can only be prevented by strict control over access to food. This project looks at children under 5 years, dividing them, on the basis of a parental interview, into phase 1 and phase 2. A blood sample is taken and various hormones are measured. We hope to find a change in at least one hormone level between phase 1 and phase 2 children which does not also occur in non-PWS children.
Private Donation
Rebecca Hawkins, Marcus Redley and Tony Holland
Jan 2004-June 2007
Cerebra
Tessa Webb, Joyce Whittington and Tony Holland
6th Framework European Union
Co-ordinator: Tony Holland
Dec 2005-Nov 2008
Department of Health, Forensic R&D
Greg O'Brien (Northumbria University), Bill Lindsay (Abertay University), Tony Holland, Marie Bambrick, and Jessica Wheeler
Nov 2004-Dec 06
This is a multi-region research project (Eastern Scotland, Tyneside and Eastern Region of England), funded by the Department of Health. Data is being collected from the Eastern Region, accessing medical case notes at LD Community Teams, Low, and Medium secure LD hospitals (NHS and private sector forensic units). The next phase of this project involves a series of qualitative interviews, to further investigate experiences of 'forensic' care pathways.
Dr Alison Stansfield has completed a study in collaboration with the Official Solicitor investigating the circumstances that result in people being referred to the Courts for decisions as to whether sterilisation would be in their best interests and lawful. In a consecutive series of referrals over 11 years all but one person referred was said to have a learning disability. The first paper has been accepted for publication in the Journal of Intellectual Disability Research and is due to published later in 2007. Her supervisors for this project have been Isabel Clare and Tony Holland.
A comparative study of Mental Health Law in the countries that are members of the Commonwealth is being undertaken by Dr Elizabeth Fistein under the supervision of Tony Holland and Isabel Clare.
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