News
Final report available
"Transition to Adulthood for Young Men with Duchenne Muscular Dystrophy and their Families" study completed
The final report of this study is now available to download in summary or in full.
Copies in PDF format are available on both the downloads and research pages.
The study aimed to find out how well-being can be maximised for young men living with DMD and their families, particularly at the transition to adulthood (and from children’s to adult services).
With a theoretical base drawing on the social model of disability and recent critiques, it was an example of inclusive research, which involved young men with DMD and a national family support group, as well as clinical services.
The research was conducted in two stages: a postal survey of family carers in three English regions was followed by interviews with 40 young men age 15+ with DMD and their families.
Key findings were that family carers generally considered that transition planning at school-leaving was poor, or non-existent, and that they lacked information about services. The majority of young men lacked meaningful day time activities and friendship networks once they had left school or college. There was good continuity of health care in one of the three regions.
The findings in relation to the NSF for LTNC are also summarised.
Patient and public involvement in research and research ethics committee review
The National Research Ethics Service (NRES) and INVOLVE have published a joint statement to provide clarity and guidance for Ethics Committees on patient and public involvement in research. It has been approved by the NRES Advisory Group and the NHS Service Users and Ethical Review and can be downloaded here:
http://www.invo.org.uk/pdfs/INVOLVE_NRESfinalStatement310309.pdf
Report on Research and Developments in Assistive Technology (AT) – 2009
Foundation for Assistive Technology (FAST)
Many people with LTNC use specialist equipment (assistive technology) to manage daily life and have a keen interest in research and development in this field. FAST is a voluntary organisation that collates and provides information about research in all aspects of assistive technology, which they define as: "Assistive Technology (AT) - any product or service designed to enable independence for disabled and older people." (King's Fund consultation, 2001)
FAST is commissioned by the Department of Health to produce an annual report (under Section 22 of the 1970 Chronically Sick and Disabled Persons Act ) which is designed to reflect the work the UK government has funded to promote the development of AT. The 2008-2009 edition of the Annual Parliamentary Report on Assistive Technology Research and Development (AT) was presented to Parliament in July 2009 and is freely available to download from FAST (http://fastuk.org/home.php ) This is the 8th report that FAST has produced for the Department of Health and the information in it is drawn from its national database of AT research and development.
It is designed to reflect the work funded (directly or indirectly) by the UK government, but FAST's database incorporates work funded from a wider range of sources.
Costs, quality and outcomes of community equipment services (2007-2008)
Contact: Nick Smith. N.J.Smith@Kent.ac.uk
Community equipment services have developed as an important element in keeping older and younger disabled adults independent within their own homes.
While a number of policy initiatives have highlighted some progression in community equipment service, there is still a need to improve assessments, delivery times and access to equipment. There is a dearth of research on investigating the quality, outcomes and cost of community equipment services, the relationship between them and how to measure them.
The aim of this project is to develop methods for assessing costs, quality and outcomes, to better understand the factors that constitute a quality, cost-effective service, in order to assess service performance
It is due to report at the end of 2008. For further information go to: http://www.pssru.ac.uk/research.php
Health and social care needs of young people with long-term neurological conditions on transition to adult services and the costs of service provision. (October 2008)
Jennifer Beecham, Tom Snell, Margaret Perkins, Martin Knapp.
The focus of this short piece of work was to look at services used by people aged 18-25 with neurological conditions and, in particular, to investigate the costs of those received from health, social care, education and others (such as the independent sector) that enable young adults with neurological conditions to live independently. The project was linked to the LTNC RI.
Three neurological conditions were selected to focus on because of their relatively high prevalence, and because they encompass a range of impairments and experiences found among the young people concerned.
The authors sought to identify the health and social care supports
and services currently used by young adults with each of these conditions,
along with the costs and the unmet needs for health and social care.
To see this report go to: http://eprints.lse.ac.uk/21427/
Report on Research into Disability Equipment (2008), Foundation for Assistive Technology (FAST) July 2008
The 2007-2008 edition of the Annual Parliamentary Report on Assistive Technology Research and Development was presented to Parliament in July 2008 and is freely available to download from FAST http://fastuk.org/home.php
This is the 7th report that FAST has produced for the Department of Health and the information in it is drawn from its national database of assistive technology (AT) research and development. It is designed to reflect the work funded (directly or indirectly) by the UK government, but FAST's database, on their web-site, incorporates work funded from a wider range of sources and offers a comprehensive and up-to-date resource.
The Experiences and Expectations of Disabled People (July 2008),
Bridget Williams, Phil Copestake, John Eversley and Bruce Stafford
Experiences and Expectations of Disabled People, the first comprehensive study of disability issues in six years, looked at key policy areas, including employment, education, transport, health and discrimination, across Great Britain in 2007.
The research, which was commissioned by the Office for Disability Issues (ODI), was undertaken by GfK NOP Social Research, Office for Public Management, ppre and the University of Nottingham. It provides a unique snapshot of the lives of nearly 2,000 disabled people.
The study was ground-breaking in that it actively involved disabled people throughout the research process. The full report can be downloaded from: http://www.officefordisability.gov.uk/research/eedp.asp
Valuing People and Research: The Learning Disability Research Initiative.
Published November 2007
The report is the culmination of 13 studies conducted between 2001 and 2007. It assesses the impact of the Learning Disability Research Initiative (LDRI) on policy and practice, particularly in relation to the inclusive research agenda. The main findings provide evidence of the extent to which the “choice and personalisation” policy agenda is being implemented locally and the gaps and challenges that now need to be addressed.
Mapping the capacity and potential for User Led Organisations in England.
Published September 2007.
This research report presents the main findings of a national research
study to obtain up to date information about local User-led Organisations
and Centres for Independent or Integrated Living in England. It was commissioned by
the Department of Health as part of its commitment to lead on delivering recommendation
4.3 of "Improving the Life Chances of Disabled People", a Prime Minister’s
Strategy Unit report. This report recognises that local organisations, run and
controlled by disabled people, will be a vital part of the implementation of
a new approach to supporting independent living.
Available from here.
Modernising Adult Social Care: what’s working.
Published June 2007
This report assesses the progress and outcomes of the modernisation process begun as a result of policy initiatives from 1998. It draws on 9 research projects and 2 baseline studies commissioned and conducted between 2003 and 2007, as well as emerging themes from other DH commissioned research. The report presents the findings from each study and gives an overarching assessment of the Modernising Adult Social Care programme as a whole. It is available from: www.masc.bham.ac.uk or here
