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A stronger collective voice for people with dementia: summary
- Author:
- WILLIAMSON Toby
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2012
- Pagination:
- 12p.
- Place of publication:
- York
A growing number of people with dementia in the UK are becoming actively involved in groups to try to influence services and policies affecting people with dementia. The Dementia Engagement & Empowerment Project (DEEP) was a 1-year project which finished in 2012. DEEP aimed to investigate support, promote and celebrate groups of people with a dementia diagnosis across the UK that are trying to influence services and policies affecting the lives of people with dementia. It was a multi-faceted project involving a mapping survey, events, films and a reference group made up of people with dementia. This paper summarises the findings and outcomes from the main report about these activities, and reflects on the involvement of people with dementia in influencing services and policies. It found that there are only a small number of groups actively involving people with dementia that are influencing services and policies. 'Influencing' work includes national lobbying and meeting with government officials, local lobbying of services, media work, training and education, participating in advisory groups, awareness-raising and speaking at events. On the basis of the findings a number of recommendations are made for the way forward.
A stronger collective voice for people with dementia: report
- Author:
- WILLIAMSON Toby
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2012
- Pagination:
- 100p.
- Place of publication:
- York
A growing number of people with dementia in the UK are becoming actively involved in groups to try to influence services and policies affecting people with dementia. The Dementia Engagement & Empowerment Project (DEEP) was a 1-year project which finished in 2012. DEEP aimed to investigate support, promote and celebrate groups of people with a dementia diagnosis across the UK that are trying to influence services and policies affecting the lives of people with dementia. It was a multi-faceted project involving a mapping survey, events, films and a reference group made up of people with dementia. This report presents the findings and outcomes from these activities, and reflects on the involvement of people with dementia in influencing services and policies. It found that there are only a small number of groups actively involving people with dementia that are influencing services and policies. 'Influencing' work includes national lobbying and meeting with government officials, local lobbying of services, media work, training and education, participating in advisory groups, awareness-raising and speaking at events. On the basis of the findings a number of recommendations are made for the way forward.
Caring for our future: what service users say
- Authors:
- BERESFORD Peter, ANDREWS Eamon
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2012
- Pagination:
- 76p.
- Place of publication:
- York
There are growing concerns among disabled people and other social care service users that their voices are not being heard at a time when major reforms in social policy are taking place which are particularly impacting on them. This report shares the results of a consultation held in November 2011 on social care reform. The consultation was carried out by Shaping Our Lives in association with the Centre for Citizen Participation at Brunel University. This report, based on the views of 27 people, from a diverse range of independent adult social care service users from different areas in England, identifies issues important that are important to service users, including funding, damaging effects of public spending cuts, hostility towards disabled people and user involvement; discusses proposed changes, including funding, to the social care system; and makes recommendations on the future of adult social care.
Updated review of research on risk and adult social care in England
- Authors:
- MITCHELL Wendy, BAXTER Kate, GLENDINNING Caroline
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2012
- Pagination:
- 45p.
- Place of publication:
- York
This paper updates an earlier extensive review of research into the incidence and management of risk in adult social care in England, and addresses gaps identified in the earlier review. It identifies only empirical research published since 2007, concentrating on research conducted and published within the UK. Three specific areas are of interest: social care service users’ and carers’ experiences and perspectives on risk, including their perspectives on the balances between positive risk-taking and protection from risk; research evidence on the effectiveness of mechanisms to prevent or reduce risk; and evidence on experiences, incidence and the management of risk arising from more personalised approaches to delivering adult social care. Recent research in these areas appears to focus predominantly on the operation and effectiveness of new measures and procedures intended to identify and reduce risk; and also on new challenges in the prevention and management of risk raised by the implementation of personal budgets. There is little research on how users’ experiences or professional strategies are influenced by wider socio-economic factors; new research on issues of gender appear to focus more on practitioner rather than service user perspectives. Studies repeatedly draw attention to the tensions and dilemmas experienced by professionals in balancing a positive approach to risk-taking with their professional and statutory duties to protect service users.
The right to take risks: service users' views of risk in adult social care
- Author:
- FAULKNER Alison
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2012
- Pagination:
- 38p.
- Place of publication:
- York
Commissioned as part of a scoping programme on rights, responsibilities, risk and regulation in adult social care, this paper looks at service users' perspectives on issues concerning their right to decide about the risks they wish to take in their lives and on their right to be protected from risks. It is based on existing literature presenting the views or experiences of service users or disabled people and discussions with service users and disabled people from a range of different backgrounds and experiences. It presents the views of service users on risk, the balance between risk and benefits, rights, responsibility, and the role of regulation. It identifies additional risks and fears to those commonly identified by professionals and policy makers and notes that perceptions of risk and rights are significantly different for mental health service users.
Involving older people in commissioning: more power to their elbow?
- Authors:
- WISTOW Gerald, WADDINGTON Eileen, DAVEY Vanessa
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2011
- Pagination:
- 75p., bibliog.
- Place of publication:
- York
This research set out to investigate what happens when older people are given the opportunity to shape service commissioning and delivery. The study also raises wider question of whether it can change the nature of local power relations in the long term. Dorset and Salford were identified as two areas where structures and processes exist which encourage and facilitate the involvement of older people in local decision-making. Through focus groups the research examined: how older people in these areas were involved in commissioning and service delivery; what difference their involvement made; the factors which lead to successful engagement; and the barriers to involving older people. Key findings revealed that public policy has made increasing reference to voice and choice for service users. Yet there were few examples where users have a real say in commissioning and more strategic approaches to service planning. Older people and agencies felt that their local involvement processes were worthwhile and associated with identifiable results. National focus groups were more sceptical about whether outcomes justified the time and resources involved. In conclusion, involvement should concentrate specifically on outcomes more than on processes.
Transforming social care: sustaining person-centred support
- Author:
- STANDARDS WE EXPECT CONSORTIUM
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2011
- Pagination:
- 4p.
- Place of publication:
- York
This report offers the first in-depth examination of the development of person-centred support from the perspectives of service users, carers, face-to-face practitioners and middle managers. The Standards We Expect project team worked with a diverse range of service users across many different health and social care settings, and explored what person-centred support means to people, how it should be developed effectively, and what barriers it faced, and how these might be overcome. Key findings showed that service users and practitioners strongly agreed on the definition of person-centred support. They identified clear, value-based criteria for what it must mean to be helpful. Mainstream discussion about personalisation has so far focused on methods and techniques rather than the objectives of achieving person-centred outcomes. The inadequate funding of social care and negative aspects of its culture underlie identified barriers. These encourage institutionalisation, poor quality provision, inequity and late intervention. The conclusion from this project is that adequate funding from general taxation is likely to offer the most effective route to achieve person-centred support and to reduce the increasingly unhelpful barriers between health, social care and other services.
Shaping public spending priorities for adult social care
- Authors:
- SMITH Chloe, CAVILL: Matt
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2010
- Place of publication:
- York
The aim of this research was to identify key issues faced by the social care sector and to explore how those involved in planning and providing adult social care are thinking about and adapting to current challenges, including budgetary pressures. The study involved a series of in-depth interviews with key figures working in the adult social care sector from local authorities and organisations of, or representing, service users and/or carers. This report presents and discusses findings and key themes from the study, including concerns about the future, priorities for spending, engaging service users and carers, and future needs. All of the stakeholders interviewed spontaneously identified budgetary pressures as the biggest challenge currently facing the sector. With regard to priorities for spending following the Comprehensive Spending Review, the main themes that emerged were statutory provision, rationing demand, and long-term prevention. Stakeholders felt that ongoing consultation with service users would continue, but that choices would be limited by the budgetary pressures. The study revealed a range of perspectives and concluded that there was currently much trepidation and uncertainty in the adult social care sector.
Shaping public spending priorities for adult social care
- Authors:
- SMITH Chloe, CAVILL Matt
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2010
- Pagination:
- 4p.
- Place of publication:
- York
This study investigates some of the key issues currently confronting those involved in planning and providing adult social care at a time of budgetary pressure. Through a series of interviews with senior figures from local authorities and service user/carer organisations, which invited people to share their perceptions about the future, a number of challenges and opportunities were identified. Areas discussed were: priorities for spending, making the right decisions, and service user involvement. Many of those interviewed had concerns about making the right decisions to enable them to provide the right quality and range of care in the future.
Towards a social model of madness and distress?: exploring what service users say
- Authors:
- BERESFORD Peter, NETTLE Mary, PERRING Rebecca
- Publisher:
- Joseph Rowntree Foundation
- Publication year:
- 2010
- Pagination:
- 4p.
- Place of publication:
- York
There has been more emphasis on social approaches to mental health in recent years, reflected, for example, in the establishment of the Social Perspectives Network. There have been some initial discussions about a social model relating to mental health among mental health service users/survivors. However, as yet, this has not been widely explored or developed. This report provides a summary of a national study which explores with mental health service users what models they feel underpin current thinking in mental health policy and practice. It asks what effects these models may have, and looks at what models service users think might be helpful. Key findings suggest that most service users believe that a medical model based on deficit and pathology still dominates public and professional understanding of mental health issues, shaping attitudes and policy. The idea of a social model of madness and distress, following the format of the social model of disability, met mixed views. The labelling and stigma following from a medical model of mental illness are major barriers for mental health service users. Service users see social approaches to mental health issues as much more helpful.