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Cancer screening for people with learning disabilities and the role of the screening liaison nurse
- Authors:
- MARRIOTT Anna, et al
- Journal article citation:
- Tizard Learning Disability Review, 20(4), 2015, pp.239-246.
- Publisher:
- Emerald
Purpose: This paper describes the role of the screening liaison nurses for adults with learning disabilities employed by Peninsula Community Health. Design/methodology/approach: This paper reports on the national situation in regard to cancer screening for people with learning disabilities and explores the barriers which limit their participation in these screening programmes. It describes the screening liaison nurse role and presents case examples of the work they do. Findings: The local screening rates for people with learning disabilities have increased since the creation of this role in 2011. (Edited publisher abstract)
Money, finance and the personalisation agenda for people with learning disabilities in the UK: some emerging issues
- Authors:
- ABBOTT David, MARRIOTT Anna
- Journal article citation:
- British Journal of Learning Disabilities, 41(2), 2013, pp.106-113.
- Publisher:
- Wiley
In the UK, policy on adult social care places an emphasis on maximising choice and control for service users, including people with learning disabilities. The shift from the provision of organised services for groups of people to offering individual and personal budgets and pots of money for people to buy their own services has major implications for the way in which people with learning disabilities are offered the opportunity to be much more ‘hands-on’ with managing their own financial affairs. This paper highlights some key and emerging issues on the topic of money and personalisation and draws on interviews with a range of staff in learning disability services and highlights their views, hopes and concerns about the best ways to support people with money matters. The response of mainstream financial institutions to the needs of people with learning disabilities and the political and economic context in which the personalisation agenda is developing are also discussed. (Edited publisher abstract)
Premature deaths - how many could be avoided?
- Authors:
- MARRIOTT Anna, HESLOP Pauline
- Journal article citation:
- Community Living, 27(1), 2013, pp.26-27.
- Publisher:
- Hexagon Publishing
An inquiry into premature deaths among people with learning disabilities revealed that over a third could have been avoided through good quality health care. The authors, who were part of the research team, report on their findings. (Publisher abstract)
The Confidential Inquiry into the deaths of people with learning disabilities - the story so far
- Authors:
- HESLOP Pauline, MARRIOTT Anna
- Journal article citation:
- Tizard Learning Disability Review, 16(5), 2011, pp.18-25.
- Publisher:
- Emerald
A Confidential Inquiry to review the deaths of all people with learning disabilities from the age of 4 onwards in Gloucestershire and the Avon area, and to determine whether the deaths of people with learning disabilities are premature or not, was commissioned by the Department of Health in 2010. Its main aim is to improve the standard and quality of care for people with learning disabilities and ultimately their health outcomes. It has been commissioned to run until March 2013. This paper by 2 participants in the work of the Confidential Inquiry outlines the process, covering the background, the team, and the inquiry aims, scope and methodology. It also discusses issues faced in conducting the Confidential Inquiry, including engaging with and involving professionals, maintaining confidentiality, and the tension between wanting to base the findings on a sufficiently large number of cases so that the findings are robust and reliable but also wanting to make immediate changes to any potentially modifiable factors found to contribute to the deaths of people with learning disabilities. The step-by-step process adopted in the inquiry is illustrated in an appendix.
Finding the right help
- Authors:
- MARRIOTT Anna, TARLETON Beth
- Publisher:
- Norah Fry Research Centre
- Publication year:
- 2008
- Pagination:
- 67p., bibliog.
- Place of publication:
- Bristol
Parents with learning difficulties are at risk of having their children removed against their wishes but there is believed to be potential for intervention which could impact on the necessity for this. Requesting help is often viewed as a failure rather than as demonstrating responsible parenting. This research, for the NSPCC, was carried out in partnership with CHANGE, an organisation of people with learning difficulties working to include the voices of the parents themselves. The consultation involved the Parents2Parents group in Walsall. The project had three objectives: to identify and review existing materials aimed at people with learning difficulties to support them in both their parenting role and that of safeguarding their own and other children; to provide guidance in relation to ways in which the NSPCC can get its messages across to parents with learning difficulties; to provide guidance on ways of making it easier for parents with learning difficulties to seek help. The accessibility of the material retrieved is discussed in terms of design, layout and content. Although some of it could be improved most was clearly developed with the target audience in mind. Much was written but there were examples of innovative formats. The importance of covering all stages of child rearing was highlighted.
More than giving people a voice ....
- Authors:
- TOWNSLEY Ruth, MARRIOTT Anna
- Journal article citation:
- Learning Disability Today, 10(5), June 2010, pp.35-37.
- Publisher:
- Pavilion
- Place of publication:
- Hove
The authors present an overview of a project which reviewed the literature between 1997 and 2009 on the needs, costs and benefits of independent advocacy for young disabled people at transition. The research found that independent advocates can play a vital role in supporting young people with learning disabilities at transition. Access to independent advocacy at transition can mean: young people are involved more often in transition planning; young people’s views are better represented and respected during transition planning; professionals are better informed about the transition process and what is expected of them; professionals provide a better service to young people before, during and after transition; and young people have more confidence, self-esteem and higher expectations for their futures. A case study illustrates these points and gaps in current knowledge and suggestions for further research in this area are discussed.
The parent trap
- Authors:
- MARRIOTT Anna, TARLETON Beth
- Journal article citation:
- Learning Disability Today, August 2009, pp.34-36.
- Publisher:
- Pavilion
- Place of publication:
- Hove
This study reviewed resources which aimed to support parents with learning disabilities to look after their children. A wide variety of resources were found, although only a small proportion of these were aimed directly at parents with learning disabilities. There was also a lack of information relating to children above the age of five. The need for resources to be produced in innovative ways, such as using websites and DVDs is also highlighted.
Your life, your choice: support planning led by disabled people's organisations
- Authors:
- WILLIAMS Val, PORTER Sue, MARRIOTT Anna
- Journal article citation:
- British Journal of Social Work, 44(5), 2014, pp.1197-1215.
- Publisher:
- Oxford University Press
Based on qualitative research with eighty participants, this paper examines the notion of support planning, as it was experienced by people using personal budgets. The research took place during 2009–10, in three demonstration sites in England where support planning was commissioned out from local authorities into user-led organisations. In general, satisfaction with user-led support planning revolved around respectful styles of facilitation, good listening skills and the expertise brought by the experience of disabled people themselves. However, it was found that different styles of support planning were effective for different people, depending on several factors relating to their life experience, the length of time they had been disabled, the availability of family support and their connection with other disabled people. Whether social services or voluntary-sector staff are facilitating support plans, the authors conclude that some people need more help initially with support planning than others, and that a good model should differentiate and be flexible, to allow people to move towards independent planning at their own pace. (Edited publisher abstract)
'It is time to stop talking and start doing': the views of people with learning disabilities on future research
- Authors:
- MARRIOTT Anna, WILLIAMS Val, TOWNSLEY Ruth
- Journal article citation:
- Mental Health and Learning Disabilities Research and Practice, 7(2), Autumn 2010, pp.132-147.
- Publisher:
- South West Yorkshire Mental Health NHS Trust and University of Huddersfield
A scoping exercise to determine the research priorities for the field of learning disabilities for the next 10 years is described. Specific focus of this paper is on the role of people with learning disabilities in setting this research agenda. A detailed description of the methodology used is given. The first stage included a series of regional workshops involving people with learning disabilities, held in Bristol, Birmingham, Leeds and London which aimed to identify the main issues and problems in the lives of people with learning disabilities. Data from these identified six priority themes: access to health care; getting good support; the right to relationships; housing options; work and personal finance; and inclusion in the community. The literature was then reviewed for published research in these areas and then further workshops were held in all four geographical areas to identify research gaps. A focus group was then held with nine researchers in the field. A summary of the findings in the six priority areas is presented. It is commented that the findings show that it is possible to involve people with learning disabilities in setting a research agenda. Their inclusion provided a perspective that could not be adequately represented by other stakeholder groups. People with learning disabilities were concerned that research has a meaningful impact and can lead to demonstrable improvements in care. In order for this to happen there is a need for widespread dissemination of accessible outputs that reach the relevant stakeholders.
Access to independent advocacy: an evidence review
- Authors:
- TOWNSLEY Ruth, MARRIOTT Anna, WARD Linda
- Publisher:
- Great Britain. Office for Disability Issues
- Publication year:
- 2009
- Pagination:
- 167p., bibliog.
- Place of publication:
- London
This review sets out to investigate the nature and extent of evidence relating to independent advocacy for disabled people at risk of losing choice and control in four specific situations: during transition to adulthood; when the children of disabled parents are subject to safeguarding procedures; when entry to residential care is a possibility; when disabled people are victims or alleged perpetrators of anti-social behaviour. In doing so, it describes and evaluates evidence about the need, costs and benefits associated with independent advocacy. The final section summarises the state of the evidence base currently available and the gaps therein, and suggests what additional research is needed to further our knowledge in this field.