The health and quality of life of Thalidomide survivors as they age - Evidence from a UK survey.

BACKGROUND: In the late 1950s and early 1960s the drug Thalidomide was marketed across the world as a non-addictive tranquilizer. Despite being given to pregnant women as a safe treatment for morning sickness, Thalidomide caused serious damage to the unborn child. Much has been written about the drug and the birth defects it caused but evidence about the health of Thalidomide survivors as they age is limited. AIM: The aim of this study was to: explore the health and wellbeing UK Thalidomide survivors; document the health problems experienced by them as they reach their mid-50s; and examine the impacts on their health-related quality of life and employment. METHODS: A health and wellbeing survey of 351 UK Thalidomide survivors, which gathered information about home and employment circumstances, recent health problems, and health related quality of life (using SF12 Health Survey). Overall analysis focused on descriptive statistics; the association between respondents' health related quality of life and original impairment was examined using Pearson Correlation; and a three step Hierarchical Regression was used to explore the influence of five factors which narrative responses suggested might be important. RESULTS: As Thalidomide survivors reach their mid-50's they are experiencing a wide range of secondary health problems, in particular musculoskeletal problems, and depression and anxiety, with multimorbidity a growing issue. These health problems are having a negative impact on their employment (two fifths are unable to work) and their physical health related quality of life, which is significantly poorer than the general population. DISCUSSION: Having lived relatively independent lives, many Thalidomide survivors are now having to adjust to growing disability. The study provides further evidence of the accumulative impact of disability over peoples' lifetimes and highlights the value of a life course perspective in understanding the complex experience of growing older with a disability.

Ambiguity in practice? Carers' roles in personalised social care in England.

Carers play an ambiguous role within the personalisation paradigm currently shaping adult social care practice in England. Although carers have rights to assessments and support in their own right, these rights sit uneasily alongside the practices of assessment, support planning and personal budget (PB) allocation for older and disabled people. This paper reports how 14 dyads of older and learning disabled people with cognitive and/or communication impairments and their carers viewed the roles - desired and actual - played by carers in PBs. Interviews with carers and with older and disabled people were conducted during 2012 as part of a wider study into carers' roles in assessment, support planning and managing PBs. The interviews complemented a survey of reported practice in two English regions - interviews with adult social care services senior managers and focus groups with front-line care managers. Talking Mats(©) were used to support interviews with some service users. Interviews were transcribed and data analysed using the Framework approach. The interviews indicated that carers played important roles in service users' assessments and support planning, but were less likely to report receiving assessments or support of their own. While carers had the potential to benefit from PBs and support arrangements for service users, this did not reflect practice that aimed to enhance choice and control for carers. The paper draws on Twigg's typology of service conceptualisations of family carers and concludes that, despite the important social rights won by carers in England, current practice continues to regard carers primarily as a resource or a co-worker, rather than a co-client.

Good practice in social care: the views of people with severe and complex needs and those who support them.

This paper reports findings drawn from a study of good practice in English social care for adults with disability and older people with severe and complex needs. People with severe and complex needs are a relatively small proportion of adult social care service users, but they are growing in numbers and have resource-intensive needs. The study involved qualitative research with adults with disability and older people with severe and complex needs, family carers and members of specialist organisations (n = 67), focusing on the features of social care services they considered to be good practice. Data were collected between August 2010 and June 2011. The approach to data collection was flexible, to accommodate participants' communication needs and preferences, including face-to-face and telephone interviews, Talking Mats(©) sessions and a focus group. Data were managed using Framework and analysed thematically. Features of good practice were considered at three levels: (i) everyday support; (ii) service organisation; and (iii) commissioning. Findings relating to the first two of these are presented here. Participants emphasised the importance of person-centred ways of working at all levels. Personalisation, as currently implemented in English social care, aims to shift power from professionals to service users through the allocation of personal budgets. This approach focuses very much on the role of the individual in directing his/her own support arrangements. However, participants in this study also stressed the importance of ongoing professional support, for example, from a specialist key worker or case manager to co-ordinate diverse services and ensure good practice at an organisational level. The paper argues that, despite the recent move to shift power from professionals to service users, people with the most complex needs still value support from professionals and appropriate organisational support. Without these, they risk being excluded from the benefits that personalisation, properly supported, could yield.

Good practice in social care for disabled adults and older people with severe and complex needs: evidence from a scoping review.

This article reports findings from a scoping review of the literature on good practice in social care for disabled adults and older people with severe and complex needs. Scoping reviews differ from systematic reviews, in that they aim to rapidly map relevant literature across an area of interest. This review formed part of a larger study to identify social care service models with characteristics desired by people with severe and complex needs and scope the evidence of effectiveness. Systematic database searches were conducted for literature published between January 1997 and February 2011 on good practice in UK social care services for three exemplar groups: young adults with life-limiting conditions; adults who had suffered a brain injury or spinal injury and had severe or complex needs; and older people with dementia and complex needs. Five thousand and ninety-eight potentially relevant records were identified through electronic searching and 51 by hand. Eighty-six papers were selected for inclusion, from which 29 studies of specific services were identified. However, only four of these evaluated a service model against a comparison group and only six reported any evidence of costs. Thirty-five papers advocated person-centred support for people with complex needs, but no well-supported evaluation evidence was found in favour of any particular approach to delivering this. The strongest evaluation evidence indicated the effectiveness of a multidisciplinary specialist team for young adults; intensive case management for older people with advanced dementia; a specialist social worker with a budget for domiciliary care working with psycho-geriatric inpatients; and interprofessional training for community mental health professionals. The dearth of robust evaluation evidence identified through this review points to an urgent need for more rigorous evaluation of models of social care for disabled adults and older people with severe and complex needs.

Choosing health: qualitative evidence from the experiences of personal health budget holders.

OBJECTIVES: Personal health budgets were piloted in the English National Health Service between 2009 and 2012. Semi-structured interviews with a sub-sample of early budget holders aimed to explore their experiences of receiving and using a budget. METHOD: Over 2000 people from 20 pilot sites were recruited to a multi-method evaluation of the personal health budget pilots. A sub-sample of 58 people was selected for qualitative interviews three months after the offer of a budget; 52 were re-interviewed six months later. The purposively selected sample reflected a range of health conditions, locality, age and gender. RESULTS: Personal health budgets were reported to have positive impacts on health, health care and relatives/family. Benefits often extended beyond the condition for which the budget had been awarded. However, interviewees rarely knew the level of their budget; some reported difficulty in agreeing acceptable uses for their budget; and delays could occur in procuring chosen services or equipment. CONCLUSION: Patients' experiences offer valuable insights for the roll-out of personal health budgets beyond the pilot phase. Flexibility in how budgets are used may allow maximum benefits to be derived. Clear information about what budgets can and cannot be used for, with suggestions offered, will be useful. People with newly diagnosed or recent sudden onset conditions may need more help to plan their support, but all budget holders are likely to benefit from regular contact with staff for reassurance and continued motivation.

Personalization in the health care system: do personal health budgets have an impact on outcomes and cost?

OBJECTIVES: In England's National Health Service, personal health budgets are part of a growing trend to give patients more choice and control over how health care services are managed and delivered. The personal health budget programme was launched by the Department of Health in 2009, and a three-year independent evaluation was commissioned with the aim of identifying whether the initiative ensured better health- and care-related outcomes and at what cost when compared to conventional service delivery. METHODS: The evaluation used a pragmatic controlled trial design to compare the outcomes and costs of patients selected to receive a personal health budget with those continuing with conventional support arrangements (control group). Just over 1000 individuals were recruited into the personal health budget group and 1000 into the control group in order to ensure sufficient statistical power, and followed for 12 months. RESULTS: The use of personal health budgets was associated with significant improvement in patients' care-related quality of life and psychological wellbeing at 12 months. Personal health budgets did not appear to have an impact on health status, mortality rates, health-related quality of life or costs over the same period. With net benefits measured in terms of care-related quality of life on the adult social care outcome toolkit measure, personal health budgets were cost-effective: that is, budget holders experienced greater benefits than people receiving conventional services, and the budgets were worth the cost. CONCLUSION: The evaluation provides support for the planned wider roll-out of personal health budgets in the English NHS after 2014 in so far as the localities in the pilot sample are representative of the whole country.

'If they're helping me then how can I be independent?' The perceptions and experience of users of home-care re-ablement services.

Home-care re-ablement is a short-term, intensive service that helps people to (re-) establish their capacity and confidence in performing basic personal care and domestic tasks at home, thereby reducing needs for longer term help. Home-care re-ablement is an increasingly common feature of English adult social care services; there are similar service developments in Australia and New Zealand. This paper presents evidence from semi-structured interviews conducted in early 2010 with 34 service users and 10 carers from five established re-ablement services in England. The interviews formed part of a larger, mixed-methods study into the immediate and longer term impacts and cost-effectiveness of home-care re-ablement services. There was clear evidence that interviewees felt that they had benefitted from re-ablement services; most service users and their families valued the intervention. However, the interviews also identified potential barriers to optimal independence for some service users, particularly those with progressive conditions, sensory impairments, specific cultural needs, or who lived alone. The beneficial impacts of re-ablement could also be reduced if users failed to understand the aims of the service, or if the service failed to provide support with activities or outcomes that were particularly important to the service user or carer. Putting the lived experiences of people receiving re-ablement at the centre of analysis, this paper concludes that re-ablement services have the potential for enhanced effectiveness, particularly if there is more understanding of users' own priorities and concepts of independence.

Home care in England: markets in the context of under-funding.

This paper traces developments in English home care services over two decades from the early 1990s. This longer-term perspective is used to show how factors shaping the broader restructuring of the English welfare state have impacted on home care services in particular. The two most salient features of these policies have been public sector funding constraints and extensive marketisation. Despite demographic trends, home care services have been deeply affected by the structural underfunding of long-term care services in general. The sector has been further shaped by the creation first of a 'mixed economy' of supply, with local authorities purchasing services from external providers instead of their own in-house services; and by the more recent introduction of a 'mixed economy' of purchasing, as greater emphasis is placed on individual choice and personalisation. The outcomes of these dual pressures are an increasingly residual publicly funded home care service and a growing role for private funding and supply. These outcomes have potentially damaging consequences for the quality of both public and private home care.

Organisation and delivery of home care re-ablement: what makes a difference?

Home-care re-ablement or 'restorative' services are a cornerstone of preventive service initiatives in many countries. Many English local authorities are transforming their former in-house home-care services to provide intensive, short-term re-ablement instead. The focus of this paper is on the organisation and content of re-ablement services and the features of their organisation and delivery that have the potential to enhance or detract from their effectiveness. Qualitative data were collected from five sites with well-established re-ablement services. Data included semi-structured interviews with senior service managers in each site; observation of 26 re-ablement visits to service users across the five sites (four to six in each site) and a focus group discussion with front-line staff in each site (in total involving 37 front-line staff). The data generated from all three sources were analysed using the framework approach. All five services had developed from selective pilot projects to inclusive 'intake' service, accepting almost all referrals for home-care services. A number of features were identified as contributing to the effectiveness of re-ablement services. These included: service user characteristics and expectations; staff commitment, attitudes and skills; flexibility and prompt intervention; thorough and consistent recording systems; and rapid access to equipment and specialist skills in the team. Factors external to the re-ablement services themselves also had implications for their effectiveness; these included: a clear, widely understood vision of the service; access to a wide range of specialist skills; and capacity within long-term home-care services. The paper argues that re-ablement can be empowering for all service users in terms of raising their confidence. However, the move to a more inclusive 'intake' service suggests that outcomes are likely to be considerably lower for service users who have more limited potential to be independent. The paper discusses the implications for practice.

Making choices about support services: disabled adults' and older people's use of information.

This paper explores how disabled adults and older people find and use information to help make choices about services. It presents findings from a qualitative longitudinal study in England. Thirty participants had support needs that fluctuated, meaning that additional services might be needed on a temporary basis; and 20 had the sudden onset of support needs resulting from an accident or rapid deterioration in health. Each disabled adult or older person was interviewed three times between 2007 and 2009, using a semi-structured topic guide. They were asked to discuss a recent choice about services, focussing, amongst other things, on their use of information. Interviews were transcribed and coded, then charted according to emergent themes. A wide range of choices and sources of information were discussed. These were dominated by health and to some extent by social care. Key findings are that information was valuable not just in weighing up different service options, but as a precondition for such choices, and that disabled adults and older people with the gradual onset of support needs and no prior knowledge about services can be disadvantaged by their lack of access to relevant information at this pre-choice stage. Timely access to information was also important, especially for people without the support of emergency or crisis management teams. Healthcare professionals were trusted sources of information but direct payment advisers appeared less so. Ensuring that practitioners are confident in their knowledge of direct payments, and have the communication skills to impart that knowledge, is essential. There may be a role also for specialist information advocates or expert lay-advisers in enabling disabled adults and older people to access and consider information about choices at relevant times.

Developing the evidence base for adult social care practice: The NIHR School for Social Care Research.

In a foreword to Shaping the Future of Care Together, Prime Minister Gordon Brown says that a care and support system reflecting the needs of our times and meeting our rising aspirations is achievable, but 'only if we are prepared to rise to the challenge of radical reform'. A number of initiatives will be needed to meet the challenge of improving social care for the growing older population. Before the unveiling of the green paper, The National Institute for Health Research (NIHR) announced that it has provided £15m over a five-year period to establish the NIHR School for Social Care Research. The School's primary aim is to conduct or commission research that will help to improve adult social care practice in England. The School is seeking ideas for research topics, outline proposals for new studies and expert advice in developing research methods.

Making informed choices in social care: the importance of accessible information.

The current policy trend is to encourage greater choice in the use of welfare services. To make informed choices, people need information. The process of finding and using information has costs for individuals in terms of effort, time and material resources. These costs are different for different people and impact on their use of information in different ways. Thus, the accessibility of information is important in ensuring those people who need to make choices can do so in an informed way. This paper discusses the importance of information in making informed choices about social support by drawing on the findings of a scoping review of government research and development activity on the accessibility of information about adult social care services. The scoping review was carried out in spring 2006. Details of recent, current and planned projects were obtained through discussions with staff in government departments, government agencies and other related organisations identified using a snowballing technique. Forty-two contacts were made. Eleven research and 36 development projects were identified that aimed to investigate or improve the accessibility of information about social care services. A limited literature search was undertaken on information needs in areas not already under investigation by government. Eighteen articles were identified. Information and helpline staff from six voluntary organisations gave their views on the accessibility of information about social care services. Our findings show that there is no government-related or other recent research evidence on the specific information access needs for some user groups and services, for example, people from ethnic minority groups. For other user groups, such as people with chaotic lifestyles, there is evidence on information needs but no current or planned development projects to address these needs. The implications for the costs of finding and processing information to aid informed choices are discussed.

Progress and problems in developing outcomes-focused social care services for older people in England.

Social care services for adults are increasingly required to focus on achieving the outcomes that users aspire to, rather than on service inputs or provider concerns. This paper reports a study aimed at assessing progress in developing outcomes-focused services for older people and the factors that help and hinder this. It describes the current policy context and discusses the social care service outcomes desired by older people. It then reports on a postal survey that identified over 70 outcomes-focused social care initiatives across England and Wales, and case studies of progress in developing outcomes-focused social care services in six localities. The study found progress in developing outcomes-focused services was relatively recent and somewhat fragmented. Developments in intermediate care and re-ablement services, focusing on change outcomes, were marked; however, there appeared to be a disjunction between these and the capacity of home care services to address desired maintenance outcomes. Process outcomes were addressed across a range of re-ablement, day care and residential services. The paper concludes by discussing some of the challenges in developing outcomes-focused social care services.

Choice in the context of informal care-giving.

Extending choice and control for social care service users is a central feature of current English policies. However, these have comparatively little to say about choice in relation to the informal carers of relatives, friends or older people who are disabled or sick. To explore the realities of choice as experienced by carers, the present paper reviews research published in English since 1985 about three situations in which carers are likely to face choices: receiving social services; the entry of an older person to long-term care; and combining paid work and care. Thirteen electronic databases were searched, covering both the health and social care fields. Databases included: ASSIA; IBSS; Social Care Online; ISI Web of Knowledge; Medline; HMIC; Sociological Abstracts; INGENTA; ZETOC; and the National Research Register. The search strategy combined terms that: (1) identified individuals with care-giving responsibilities; (2) identified people receiving help and support; and (3) described the process of interest (e.g. choice, decision-making and self-determination). The search identified comparatively few relevant studies, and so was supplemented by the findings from another recent review of empirical research on carers' choices about combining work and care. The research evidence suggests that carers' choices are shaped by two sets of factors: one relates to the nature of the care-giving relationship; and the second consists of wider organisational factors. A number of reasons may explain the invisibility of choice for carers in current policy proposals for increasing choice. In particular, it is suggested that underpinning conceptual models of the relationship between carers and formal service providers shape the extent to which carers can be offered choice and control on similar terms to service users. In particular, the exercise of choice by carers is likely to be highly problematic if it involves relinquishing some unpaid care-giving activities.

Personalised social care for adults with disabilities: a problematic concept for frontline practice.

This paper explores the complexities and contradictions of frontline practice that pose problems for personalised social care through enhanced choice. It draws on semi-structured interviews with community care workers, social workers, occupational therapists and care managers in a social service department. Practitioners interviewed were asked about their current assessment and documentation system, including the assessment documents currently used; how they approached information gathering and the topics they explored with service users; and their experience of documenting assessment and care management. The paper argues that the validity and sustainability of personalised social care in frontline practice relies on developing a thorough understanding of the complex and implicit assessment processes operating at the service user/practitioner interface and the inevitable tensions that arise for practitioners associated with the organisational context and broader service environment. The findings demonstrate the variability among practitioners in how they collect information and more importantly, the critical role practitioners occupy in determining the kinds of topics to be explored during the assessment process. In so doing, it shows how practitioners can exert control over the decision-making process. More importantly, it provides some insight into how such processes are shaped by the constraints of the organisational context and broader service environment. Complexities and contradictions may be an inherent part of frontline practice. The issues discussed in this paper, however, highlight potential areas that might be targeted in conjunction with implementing personalised social care through enhanced choice for people with disabilities.

Using pooled budgets to integrate health and welfare services: a comparison of experiments in England and Sweden.

The lack of collaboration between health, social and other welfare services is believed to impair efficiency and reduce effectiveness in addressing the complex problems of patients. Differences in funding streams, political accountabilities, organisational structures and professional cultures are all alleged to contribute to barriers between services. Drawing on their respective evaluations, this paper describes experiments in England and Sweden that use pooled budgets between services to improve interagency and interprofessional collaboration and presents evidence on their impact. Despite differences in the funding and organisation of health and welfare services in each country, some similar conclusions are reached. Among senior managers and politicians, budget pooling broadened their awareness of interdependencies with other agencies and professionals in promoting patients' welfare. However, these broadened perspectives were not immediately shared by professionals working at the front line, with whom patients had immediate contact. Moreover, neither experiment yielded unequivocal evidence of improved cost-effectiveness or of the benefits of budget pooling on the outcomes for service users. These experiments also raise questions about the equity and accountability of welfare services because in both countries only a limited range of services has been integrated under the umbrella of the pooled budgets.

Access to health care for people with learning disabilities in the UK: mapping the issues and reviewing the evidence.

OBJECTIVES: People with learning disabilities are more prone to a wide range of additional physical and mental health problems than the general population. Our aim was to map the issues and review the evidence on access to health care for these patients. The review sought to identify theory, evidence and gaps in knowledge relating to the help-seeking behaviour of people with learning disabilities and their carers, barriers and problems they experience accessing the full range of health services, and practical and effective interventions aiming to improve access to health care. METHODS: A three-strand approach was adopted, involving searches of electronic databases, a consultation exercise and a mail shot to researchers and learning disability health professionals. Evidence relevant to our model of 'access' was evaluated for scientific rigour and selected papers synthesized. RESULTS: Overall, a lack of rigorous research in this area was noted and significant gaps in the evidence base were apparent. Evidence was identified on the difficulties in identifying health needs among people with learning disabilities and the potentially empowering or obstructive influence of third parties on access to health care. Barriers to access identified within health services included problems with communication, inadequate facilities, rigid procedures and lack of appropriate interpersonal skills among mainstream health care professionals in caring for these patients. A number of innovations designed to improve access were identified, including a communication aid, a prompt card to support general practitioners, health check programmes and walk-in clinics. CONCLUSION: There are important gaps in the knowledge base on access to health care for this group. While these need to be addressed, developing strategies to overcome identified barriers should be a priority, along with fuller evaluation of existing innovations.

Parent or nurse? The experience of being the parent of a technology-dependent child.

AIMS: This paper reports a study exploring parents' experiences of caring for a child who is dependent on medical technology, and in particular of performing clinical procedures on their own children. BACKGROUND: A group of children with a continuing need for the support of medical technology have emerged in community settings as a result of medical advances and government policies. Caring for these children has a significant social and emotional impact on parents, because of their specialized and intensive care needs. Obtaining appropriate and coordinated home support services is problematic. METHODS: Grounded theory techniques were used, and in-depth interviews were conducted with the parents of 24 children. FINDINGS: Parents' accounts revealed that their constructions of parenting were shaped by the nature of their role in caring for their child and by the transformation of their homes by medical equipment and personnel. They described themselves as having a role that had both parenting and nursing dimensions. Parents managed this tension and defined their role and relationship to their child to be primarily one of parenting by differentiating parental care-giving and its underpinning knowledge from that of professionals, particularly nurses. CONCLUSIONS: Parenting a technology-dependent child alters the meaning of parenting. Professionals need to recognize that providing care has a substantial emotional dimension for parents, and that they need opportunities to discuss their feelings about caregiving and what it means for their parenting identity and their relationship with their child. A key professional nursing role will be giving emotional support and supporting parents' coping strategies. Parents' perceptions of nurses raise questions about whether nurses' caregiving is individualized to the needs of the child and family, and whether parental expertise is recognized.