Representing the Views of Disabled People in Community Care Planning

The 1990 NHS and Community Care Act requires social services departments in Britain to involve representatives of service users in the preparation of their annual community care plans. This paper gives a critical account of the different ways in which the views of disabled people are sought and represented in community care planning; and of the organisational and practical barriers which disabled people and their organisations are likely to encounter in representing their views to service planners. People with learning disabilities, older disabled people, people with sensory impairments and disabled people from Black and ethnic minority communities are particularly likely to be excluded from current consultation procedures. The paper concludes that present methods of representation place considerable burdens on both individual disabled people and on their organisations. Consequently, disabled people may increasingly question the effectiveness and usefulness of their involvement in community care planning, in the light of the many other issues which are important to them.     

Marketing ‘madness’: conceptualising service user/survivor biographies in a period of deinstitutionalisation (1975–2014)

This article aims to present the lived experiences of psychiatric service users/survivors who have experienced the transition from institutional care in the 1970s and 1980s to community care services in the 1990s and post-2000s. By using a biographical narrative approach the study compares service users’ historical experiences with their contemporary experiences of community and residential care. Sixteen biographical narratives were analysed to explore how mental health services have changed over time, from the perspective of service users/survivors, their families and mental health practitioners. The study examines how the closure of NHS mental hospitals in the 1980s, which were replaced in the 1990s with new types of community and residential care services, has changed the lives of service users/survivors. Thus, the article presents these lived biographical experiences which, for the majority of service users/survivors, were defined by the process of trans-institutionalisation rather than de-institutionalisation, within a neoliberal context.     

A bit more understanding: Young adults' views of mental health services in care in Ireland

Children and young people in the care system typically experience very high levels of mental health difficulties, yet their views of these difficulties and of mental health services have rarely been explored. For this qualitative study we spoke with eight young adults aged 18 to 27 years with experience of the care system in Ireland about mental health challenges, service experiences, and how they felt mental health services needed to improve. Themes from the interviews illuminated young adults' views of their emotional well-being while in care, and the double stigma of being in care and mental health difficulties. In terms of services, young adults wanted these to be flexible and sensitive to level of need; to offer choice and more congenial environments; to provide more creative routes to engaging young people; and to offer honest, reciprocal, caring communication — treating children in care as one would any child. Recommendations highlight three key needs: an ethic of care in services as well as an ethic of justice; mental health training for all professionals in contact with children in care; and the need to listen, hear and act on what children and young people say.     

Qualitative accounts of young-people,parents and staff involved with a purpose-designed,pilot short-break service for 18–24 year olds with life-limiting conditions

PurposeTransition to adult health and social-care services is a time of great uncertainty for young adults with life-limiting conditions; due to improved management, many who would have previously died before they were 18 years old are now surviving into early adulthood. Nevertheless, few services exist to meet their specific needs for specialist short breaks away from home. The purpose of this research was to determine the views and perspectives of young adults' parents/carers and staff engaged with a purpose-designed, pilot short-break service for 18–24 year olds with life-limiting conditions. Data were gathered through qualitative individual or focus group interviews involving two young adults, four mothers and fifteen health or social-care staff associated with the service. Data were analysed using Framework Analysis.Principal resultsEmergent themes: (i) The need for a specialist short-break service; (ii) Decision making when using or delivering the service; (iii) Challenges of staffing and financing the service (iv) Meeting young adults' complex needs and preferences (v) Suggestions for how to improve the service.The young adults described how they benefitted from access to specialist, age-appropriate, on-site clinical skills facilities and opportunities to socialise with peers. Mothers said they benefitted from time alone or with other family members in the knowledge that the specialist short break service met the needs and preferences of their child as they made the transition to adult services. However, all participating mothers and staff expressed concern about the future well-being of young adults when they left the service at 24 years old.Major conclusionsThis study provides new information to inform ongoing development of short-break services for the increasing number of young adults with life-limiting conditions who are surviving longer than they would previously have done. This will help to ensure that UK services are responsive to users' needs and preferences.     

Who will care for older people? A case study of working with destructiveness and despair in long-stay care

Abstract

The reduction of services for older people is illustrated in a case study of a long-stay NHS service which has been transferred to a private, profit-making company. The effects of cuts in this service are most keenly felt in the very poor conditions of employment now offered by the company to new carers. Other illustrations of cuts are described in attempts to make savings on food or incontinence pads. The difficulties for staff, patients, their relatives, or indeed society at large, in challenging such destructiveness, may be understood in terms of the particular vulnerability of older people to projections of a dreaded infantile dependency and helplessness, in a society in the grip of a destructive narcissism which views ordinary human needs as a weakness.     

User satisfaction surveys and cognitive question testing in the public sector: the case of personal social services in England

Obtaining feedback from service users is a key element of the UK Labour Government's agenda for modernization of the public sector. This reflects a growing international trend in Europe and North America. Recognized difficulties in taking an approach to performance assessment based on the concept of user satisfaction are outlined. Ascertaining the views of people who use personal social services poses particular challenges which result from the levels of impairment and illness in the population, local variations in service provision and the 'care and control' functions of social care. It is argued that cognitive testing of questions, based on research knowledge about user views, provides a way of overcoming some of the pitfalls of traditional satisfaction surveys, while developing questions that are meaningful to respondents. The origins and principles of cognitive testing are described, followed by an example of their application in the development of a questionnaire for home care users. Strengths and limitations of the approach are identified.     

Communal invalidation of young adults with co-occurring substance abuse and mental health issues

This study explores how young adults with co-occurring substance abuse and mental health issues experience the challenges of belonging to their local communities. The data were generated through qualitative in-depth interviews with seven young adult service users, six of whom were interviewed twice. The qualitative data analysis resulted in three overarching themes: the need to accept one’s own life and the structures surrounding it; being caught between conflicting social worlds; and moral fumbling in choices and actions. Using an empirical study, we suggest that a process of ‘communal invalidation’ operates through which young adults in the community are socially defined as inadequate. This invalidation serves as a formidable barrier to their recovery.     

Introducing a Research Project into Social Work Practice—A Model for the Future?

In this article the author, a social work practitioner, suggests that the knowledge and experience of practitioners and researchers need to be harnessed so that innovative practice can be developed within local authority Social Services. The views of children and young people were sought as a way of enhancing service delivery. Young people were consulted through a Focus Group about the policy and practice of Child Protection Conferences. Interviews were also undertaken with 11 young people who had been the subject of a Child Protection Conference to find out what they thought about the preparation stage, the conference itself and the follow up they received after the conference.

The author concludes that young people can make a valuable contribution to the development of universal services and managers and social work practitioners need to find ways to routinely incorporate consultation with children and young people into social work practice. This has implications for social work education, not only in ensuring that consultation skills with service users are built into the curriculum, but in encouraging innovative practice in the workplace.     

Hospital social work in Sweden and the UK: Access to chances of physical health and well-being

In Swedish and UK practice, interest is developing in social work's contribution to tackling service users' unequal chances and experience of physical health. This is through alleviating disadvantaged social conditions such as relative poverty which service users face and which are associated with health inequalities. Ready access to social work services is an essential preliminary if service users are to gain the material and social resources services can provide, to alleviate their adverse social circumstances and thereby improve their health prospects. However, despite hospital social work's well-established position, its significance as an access point for services has tended to be marginalized. Drawing on a comparative account of Swedish and UK practice featuring two action research projects, we explore how hospital social work is a key point of access to services for service users experiencing profound disadvantage. We analyse major barriers to such access, notably the underfunded nature of hospital social work, discriminatory procedures, and unequal professional service user power relations. Nevertheless, the action research projects show how these barriers may be breached to some degree, enabling service users as patients and carers to access resources which contribute to more equal chances of health and well-being in ill-health.     

A Survey of the First Five Years' Work of a Child Sexual Abuse Team

This paper describes a survey of the first 5 years' work of a specialist NHS child sexual abuse team (CSAT), which provides a post-disclosure treatment service to young people aged between 13 and 19. Information was obtained on the demographic characteristics of young people referred, the nature of their abuse and its perpetrators, and the type, length and outcome of the treatment provided. The survey was also used to ask four questions. Was the team providing a service to its target population, young people whose sexual abuse had been severe? Did the severity of abuse predict the intensity or length of therapy provided? Were there differences in the service provided to boys as opposed to girls? Finally, did experienced therapists achieve different results when compared with non-experienced therapists? It was found that the service was being used by its target group and that severity of abuse was associated with longer or more intensive therapy. The service did not appear to be adequately meeting the needs of boys. There was some indication that experienced therapists achieved the same treatment outcome as inexperienced therapists in a shorter period of time.     

Promises and Pitfalls: Involving Service Users and Carers in Social Work Manager Education

Partnership working occupies an increasing amount of social work managers' time and budget, requiring skills and abilities not always developed previously within social work programmes. Much discussion around partnership working centres on building collaborative inter-agency and inter-professional relationships with less emphasis on the need to ensure good working relationships with service users and carers, despite their being the ultimate recipients of the process. This article explores efforts to develop a focus on service users and carers within a module for social work managers as part of post-qualifying (PQ) social work education. It documents a process where, initially, service users and carers provided personal testimonies of being recipients of services and then subsequently occupied more authoritative roles within teaching, to the current position when they are again less actively involved.

In describing these developments it explores possible reasons why involving service users and carers within this module has proved challenging. The article acknowledges that there is relatively limited literature about the involvement of service users and carers in PQ education. It suggests that lessons learned from involving service users and carers in qualifying social work training cannot directly be transposed to the post-qualifying context.     

Social Exclusion and Social Work: Questions for the Future

This paper describes the experiences of students and service users and carers participating in the Staffordshire University Skills Lab Programme. Two focus groups were held: one with first year social work students and one with service users and carers to explore their views. Qualitative analysis identified key themes that were part of the students' and the service users and carers' experience of the skills lab. The skills lab was very positively rated overall. Several recommendations for improvement will be addressed for future years.     

Obstacles to gaining ethical approval for a multi-centre study of family support

The NHS has emphasised the need for rigorous evaluations of preventative home-visiting support (Bull and others, 2004) in building a public health evidence base. Interdisciplinary studies involving the NHS in any capacity are subject to ethical review by NHS Research Ethics Committees. However, the current process of ethical review does not respond flexibly to research conducted by non-NHS organisations. Through documentary analysis, this paper describes the experience of a non-clinical research evaluation of a family support service offered during pregnancy and the difficulties encountered in gaining ethical approval. Implications for social science research with minimal NHS involvement are discussed and recommendations for improvements suggested.     

Further notes on record taking and making in maternity care: The case of South Asian descent women

This paper draws on data from a small-scale ethnographic study of the delivery of maternity care to South Asian descent women in a hospital in Southern England during 1988. Stereotyped views of these women which related to their customs and culture as well as their typification as patients were commonly expressed by staff, particularly midwives. The paper examines the role of medical records and record making in stereotyping Asian women: the ways in which stereotyped views of women may affect the record making process; and how that process itself may reinforce and create stereotypes. The utility of records for ‘rate production’ purposes is also discussed. The focus of the paper is the creation of a woman's maternity records which occurs in the antenatal clinic. The transformation of stigmatised views of a client into ‘facts’ about a client is common among bureaucrats, in this setting health service staff. This process affects the client's future encounters with the bureaucracy. In medical settings records (ie the case notes) help to create, transmit and reify negative stereotypes of health service users. These stereotypes can affect the kind of care given to individual patients.     

User‐oriented mental health reform in Sweden: featuring ‘professional friendship’

In developing new forms for society‐based support for mental health service users, authorities implemented a service in Sweden, called Personligt ombud (PO), with the assignment to support service users exercising their rights. The aim of this article is to describe what service users find to be significant features of their working relationships with their PO. Using a phenomenological approach, 23 users were interviewed sharing their experiences of their PO. The results show that service users describe their relationships with the PO as a ‘professional friendship’. The friendship‐like feature refers to reciprocity in sharing life experiences and forming a trustful relationship in which professional assistance can be offered, promoting well‐being and recovery. Conclusions are that the PO provides a service that calls for re‐interpretation of professional and user roles, where both give and receive.     

Discourses of service user involvement in meeting places in Norwegian community mental health care: a discourse analysis of staff accounts

In previous research, meeting places have been favourably addressed by service users, but they have also been contested as exclusionary. In this participatory explorative study, we sought to perform a contextual analysis of meeting places in Norway based on a discourse analysis of three focus group discussions with 15 staff members. We asked the following question: how do meeting-place employees discuss their concrete and abstract encounters with service users and their experiences? We focused on service user involvement, which was largely analysed as neoliberal consultation and responsibilisation. Service users were positioned as resisting responsibility trickling down and defending staffed meeting places. Social democratic discourse was identified in the gaps of neoliberal discourse, which is noteworthy given that Norway is a social democracy. This relates to global concerns about displacements of democracy. We suggest that meeting places appear to hold the potential for staff and service users to collaborate more democratically.     

Experiences of volunteering: A partnership between service users and a mental health service in the UK

The aim of the study was to investigate how people with serious mental illness perceived the experience of volunteering for the health care organisation in which they had received a service. The study took a qualitative approach and in phase one, eleven service user volunteers were purposefully sampled and interviewed. In depth interviews were analysed using grounded theory. This paper describes the findings from phase one, and highlights the following themes to represent the volunteering experience: 1) rehearsing for a new direction; 2) treading carefully at first; 3) discovering my new self; and, 4) using my experience and extending relationships. These themes further support a tentative theoretical framework that considers supported volunteering to enhance recovery because it fosters positive risk taking and gives individuals a valued identity that integrates their mental health experience. In phase two, this framework will be tested with service users in more diverse volunteer positions. The findings of my study suggest that mental health services are in a unique position to build partnerships with service users to support their recovery and journeys toward employment by providing opportunities for volunteering.     

Involving Service Users in a Problem Based Model of Teaching and Learning

Since the introduction of the new degree in social work in the UK, programmes have been developing ways to involve service users, using differing models. This paper will explore how service users can enhance the inquiry based model of teaching and learning while at the same time emphasising the belief that process and content in teaching and learning cannot be separated. It will also show how this approach, by involving service users as consultants, creates expertise and can provide a ‘legitimate constituency’ and thus allow for meaningful participation of service users at all levels of social work education.     

Building inclusion,maintaining marginality: how social and health services act as capital for young substance users

This paper draws on Bourdieusian concepts to examine the social mechanisms driving service ‘choices’ for marginalised young substance users. In doing so, it problematises the individualised understandings of ‘choice-making’ common in the existing literature. The paper uses interview data collected from 26 young substance users to describe the resources they bring to their service encounters, the capitals that they acquire through these interactions, and the ways in which these are mobilised within the fields in which they operate. The analysis finds that services acted as capital-building settings – participants acquired material resources and opportunities for skill-building, and they built relationships that contributed to a positive sense of identity and belonging. But the exchange potentials attached to these capitals were restricted by the logics of service fields that cast them as deficit and limited their opportunities to build productive forms of social capital. By revealing the social mechanisms behind service ‘choices’, the analysis suggests that the most effective services are those that maximise the opportunities for their young clients to build ‘weak ties’, such as with a diverse range of adults who themselves possess resources, and those that acknowledge the identities that young people already possess as rational and self-managing.