Exploring the impacts of organisational structure,policy and practice on the health inequalities of marginalised communities: Illustrative cases from the UK healthcare system

This paper explores how organisational structure, policies and practices in healthcare can inadvertently disadvantage marginalised populations (e.g. individuals from ethnic minority backgrounds) and reinforce health inequalities. We draw upon three diverse UK healthcare settings (long term care institutions, high security hospitals and community pharmacies) to illustrate how systemic injustices negatively impact on access to care, treatment and health outcomes. The first case study considers the care of older people within nursing homes; specifically the disempowering effects of this service structure and impacts of choice reduction upon health and their access to health provision. The second case study explores the impact of security restrictions upon patients within high security hospitals, focusing particularly on the maintenance of relationships and support networks outside of the hospital. The third and final case study, draws upon a national community pharmacy medicine management service to illustrate ways in which policies and guidelines inadvertently obstruct patients' engagement with the service within a community setting. We draw upon these settings to highlight inequalities within different contexts and to illustrate the ways in which well intended services can inadvertently disadvantage marginalised communities in multiple ways.     

‘If there were doctors who could understand our problems,I would already be better’: dissatisfactory health care and marginalisation in superdiverse neighbourhoods.

How people in community settings describe their experience of disappointing health care, and their responses to such dissatisfaction, sheds light on the role of marginalisation and underlines the need for radically responsive service provision. Making the case for studying unprompted accounts of dissatisfaction with healthcare provision, this is an original analysis of 71 semi-structured interviews with healthcare users in superdiverse neighbourhoods in four European cities. Healthcare users spontaneously express disappointment with services that dismiss their concerns and fail to attend to their priorities. Analysing characteristics of these healthcare users show that no single aspect of marginalisation shapes the expression of disappointment. In response to disappointing health care, users sought out alternative services and to persuade reluctant service providers, and they withdrew from services, in order to access more suitable health care and to achieve personal vindication. Promoting normative quality standards for diverse and diversifying populations that access care from a range of public and private service providers is in tension with prioritising services that are responsive to individual priorities. Without an effort towards radically responsive service provision, the ideal of universal access on the basis of need gives way to normative service provision.     

Community-based post-stroke service provision and challenges: a national survey of managers and inter-disciplinary healthcare staff in Ireland

ABSTRACT: BACKGROUND: The extent of stroke-related disability typically becomes most apparent after patient discharge to the community. Maximising rehabilitation input at this point can minimise the impact of disability. As part of the Irish National Audit of Stroke Care (INASC), a national survey of community-based allied health professionals and public health nurses was conducted. The aim was to document the challenges to service availability for patients with stroke in the community and to identify priorities for service improvement. METHODS: The study was a cross-sectional tailored interview survey with key managerial and service delivery staff. As comprehensive listings of community-based health professionals involved in stroke care were not available, a cascade approach to information gathering was adopted. Representative regional managers for services incorporating stroke care (N=7) and disciplinary allied health professional and public health nurse managers (N=25) were interviewed (94% response rate). RESULTS: Results indicated a lack of formal, structured community-based services for stroke, with no designated clinical posts for stroke care across disciplines nationally. There was significant regional variation in availability of allied health professionals. Considerable inequity was identified in patient access to stroke services, with greater access, where available, for older patients (>65 years). The absence of a stroke strategy and stroke prevalence statistics were identified as significant impediments to service planning, alongside organisational barriers limiting the recruitment of additional allied health professional staff, and lack of sharing of discipline-specific information on patients. CONCLUSIONS: This study highlighted major gaps in the provision of inter-disciplinary team community-based services for people with stroke in one country. Where services existed, they were generic in nature, rarely inter-disciplinary in function and deficient in input from salient disciplines. Challenges to optimal care included the need for strategic planning; increased funding of healthcare staff; increased team resources and teamwork; and removal of service provision barriers based on age. There were notably many challenges beyond funding. Similar evaluations in other healthcare systems would serve to provide comparative lessons to serve to tackle this underserved aspect of care for patients with stroke and their families.     

Equity in social care for people with intellectual disabilities? A cross‐sectional study examining the distribution of social care funding across local authorities in England

Many people with intellectual disabilities rely on social care provision, though little research has looked at how access to such provision is distributed nationally. Evidence from children's services suggests that there are large discrepancies between local authorities (LAs) in terms of the resources expended on interventions with children and families, which can be explained by variations linked to geographical location, namely the level of socioeconomic deprivation between LAs, constituting ‘child welfare inequalities’. This study explored relationships between resources allocated to community services for people with intellectual disabilities in England and geographical factors, including deprivation, rurality and political leadership in the LAs where these individuals reside. Data were sourced from publicly available reports of spending of 151 English councils with adult social services responsibilities (CASSRs) for 2013–2014 and from CASSR index of multiple deprivation (IMD) scores and rurality for the same period. We found that more deprived LAs supported more people with intellectual disabilities, per 100,000 of population. We did not find effects for rurality or political party. However, it was not the case that more deprived LAs allocated more funds for expenditure on this group. These findings point to inequities in the distribution of social care resources for people with intellectual disabilities in England, as although more deprived LAs support more people with intellectual disabilities, they do not spend proportionally larger sums of money on this group. We discuss possible explanations for these findings and highlight the need for more research, particularly investigations about allocation of resources within LAs and more detailed explorations of how structural factors such as socioeconomic status of service users effects service access at the local level.     

Elderly people with cognitive impairment: costing possible changes in the balance of care

The objective of this paper is to investigate the service needs and support costs of elderly people with cognitive impairment on hospital and community health services, primary health care, social services, and informal carers in England. It examines the resource consequences of major changes in the provision of care, exploring the implications for both cost and effectiveness. The study was designed to provide a secondary analysis of the OPCS disability surveys in order to estimate the balance of care, and current provision of services. It also estimates of costs of present provision and potential policy options. Results show large scale improvements in the provision of care for people living in private households and local authority homes require significant increases in funding, but reductions in the provision of long-stay hospital beds can significantly reduce the cost burden to the public purse. Given the increasing demand pressure on health and social care expenditure, it seems unlikely that large scale improvements in the care supplied to elderly people with cognitive impairment can be achieved without some change in the balance of care. The cost of implementing improvements in care for the 200000 people living in private households and the 45000 people in local authority homes could be offset by reducing the provision of costly long stay hospital provision with alternative institutional care such as NHS nursing homes.     

Taming systems to create enabling environments for HCV treatment: Negotiating trust in the drug and alcohol setting

HCV (hepatitis C) treatment uptake among the population most affected – people who inject drugs – is suboptimal. Hospital based treatment provision is one evidenced barrier to HCV treatment uptake. In response, HCV treatment is increasingly located in treatment settings seen as more amenable to people who inject drugs, such as drug and alcohol services. We explored the accessibility of HCV treatment provision at two such partnerships. Data collection comprised qualitative interviews collected in 2011 and 2012 with 35 service users and 14 service providers of HCV treatment in London, United Kingdom. We draw here primarily on thematic analyses of service provider accounts, yet narratives relating to trust and environment emerged unsolicited in both user and provider accounts of negotiated HCV treatment access. A key theme in service provider accounts were strategies they deployed to ‘tame’ the treatment system so as to create an ‘enabling environment’ of care, in which trust was a critical feature. This ‘taming’ of the system was enacted through practices of ‘negotiated flexibility’, including in relation to appointments, eligibility, and phlebotomy. Service user accounts accentuated familiar environments and known health providers as those most trusted, and the potentially stigmatising effects of negotiating treatment in unfamiliar territory, especially hospital settings. Whilst noting the effects of provider strategies to negotiate flexibility on behalf of would-be patients seeking treatment, we conclude by noting the limits of trust relations in settings of constrained choice.     

Improving general practitioner access to physiotherapy: a review of the economic evidence.

The provision of physiotherapy via general practitioner (GP) 'direct access' arrangements or in primary care itself has become increasingly common in the UK. Evidence on the economics and the cost-effectiveness of alternative methods of organizing access to physiotherapy services is reviewed, and the likely impacts of different organizational models are discussed. GP direct access physiotherapy and primary care provision appear to have a lower average cost than consultant access physiotherapy models, while GP direct access appears to minimize health care resource use per patient. Primary care physiotherapy provision appears to minimize the costs to patients of seeking care, and appears to generate a greater demand for service than other models. The extent to which physiotherapy provision in primary care can substitute for physiotherapy and other resources in the hospital sector is discussed, as is the extent to which patients may benefit from receiving physiotherapy in primary care. It is argued that continued expansion of access to physiotherapy should be critically appraised, and its ability to improve health status compared with that achievable in alternative patient groups who might benefit from physiotherapy in hospital or rehabilitation settings.     

Organisation of services for acute stroke in Scotland--report of the Scottish stroke services audit

An audit was undertaken of hospital service provision for acute strokes in Scotland, using as a template key recommendations in the four SIGN guidelines on management of stroke. A questionnaire and structured interview was undertaken of key personnel in the 43 Trusts and three directly managed units providing in-patient stroke care in Scotland, and the 15 Health Boards commissioning stroke care. All Trusts and Health Boards participated and a complete set of information for each was recorded on a data-base and analysed. This report gives an overview for 14 key components of an integrated stroke service with results presented in four bands according to Trust type determined by the number of strokes admitted. No Trust provided all key components and for a few components a lack of provision was widespread, e.g. fast-track assessment clinics for TIA and minor stroke, access to CT scanning within 48 hours. Variation occurred between Trusts of similar size, between Trusts of different sizes. Overall the Health Boards were at a preliminary stage in the development of stroke specific service specifications. The results of the audit are a view of stroke services around April 1998, and should enable commissioners and providers to consider how to progress implementation of the clinical guidelines on stroke care.     

The quality and adequacy of care received at home in the last 3 months of life by people who died following a stroke: a retrospective survey of surviving family and friends using the Views of Informal Carers Evaluation of Services questionnaire

Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them 'rewarding'. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.     

Accessibility and equity of health and social care services: exploring the views and experiences of Bangladeshi carers in South Wales, UK

There is a paucity of information regarding the extent and nature of caring provided by minority ethnic communities. The proportion of older people from these communities will dramatically increase in the next 20 years, which will be accompanied by increasing health and social care needs and an increased demand for carers. A qualitative, exploratory study was conducted to identify the health and social care needs of informal carers, who were caring for a dependent adult from a Bangladeshi community in South Wales, UK. This paper focuses on Bangladeshi carers' access to formal support services provided by the statutory, private and voluntary sectors to assist them with their caring responsibilities. The findings are based on data collected using face-to-face, focused interviews with 20 Bangladeshi carers. Purposive and snowball sampling were used to recruit the sample. The data were analysed using thematic content analysis. The dimensions of accessibility and equity of quality of care were drawn upon to aid understanding of the findings. Bangladeshi carers faced a number of barriers in accessing health and social service provision, which impeded uptake of these services. Additionally, there was evidence of inequity in service provision. Recommendations for improving the accessibility of health and social care services are proposed, which may assist in promoting more equitable services for carers from the Bangladeshi community.     

Patient views of social service provision for older people with advanced heart failure

The objective of the present paper is to explore levels of social service provision, the barriers to receiving these services and the experiences of social service provision amongst older people with heart failure. Five hundred and forty-two people aged over 60 years with heart failure were recruited from UK general practices in four areas of the UK, and these subjects completed quality-of-life and service-use questionnaires every 3 months for 24 months, or until death. Forty patients participated in in-depth interviews. Data collection was conducted between September 2003 and March 2006. Only 24% (n = 127) of the 460 participants who had provided information about social services contact reported having received social services during the past 24 months. Significant associations between the level of social services contact and participant characteristics were identified, with women, participants over 75 years of age, participants living alone, and those with two or more comorbidities being more likely to report receipt of social services. The qualitative data identified key barriers to using social services, including: access problems; not wanting additional help; the negative experiences of friends; and carers substituting for statutory services. The few participants interviewed who had received social services reported mixed experiences, including problems with inappropriate and insufficient services. This study indicates that only a minority of older people with heart failure have contact with social services. Improving provision for this group involves tackling the barriers to access identified above, as well as ensuring that their views influence service planning and delivery.     

Demograghic and socio-economic determinants of community and hospital services costs for people with HIV/AIDS in London.

We examined the influence of demographic, social and economic background of people with HIV/AIDS in London on total community and hospital services costs. This was a retrospective study of community and hospital service use, needs and costs based on structured questionnaires administered by trained interviewers and costing information obtained from the service purchasers and providers, based on two Genito-urinary Medicine clinics in London: the Jefferiss Wing at St. Mary's Hospital and Patric Clements at the Central Middlesex Hospital, London, England. The subjects were 225 HIV infected patients (105 asymptomatic, 59 symptomatic non-AIDS and 61 AIDS). We found that over and above well established determinants of health care costs for HIV infected people such as disease stage and transmission category, social and economic factors such as employment and support of a living-in partner significantly reduced community services costs. Private health insurance had a similar effect, though only a small proportion of HIV people had such cover. The cost of community services for HIV infected non-European Union nationals, mainly of African origin, was one quarter that for the European Union nationals. Community services costs were highest for heterosexually infected women and lowest for heterosexually infected men after adjusting for other factors. Hospital services costs were significantly higher for HIV infected people lacking educational qualifications and employment. We conclude that access to community care for HIV infected non-EU nationals appears to be very poor as the cost of their community services was one quarter that for the EU nationals after adjusting for the effects of transmission category, disease stage, living with a partner, employment and having a private health insurance. Additional incentives for informal care for HIV infected people could be a cost-effective way to improve their community health service provisions.     

Engagement with health and social care services: perceptions of homeless young people with mental health problems

The present qualitative study describes and discusses the perspectives and experiences of young homeless people with mental health problems in relation to their interactions with health and social care services. Working in partnership with Streetlink, a supported accommodation assistance programme in Adelaide, Australia, the authors interviewed 10 homeless young people, aged from 16 to 24 years of age, who had experienced mental health problems. In-depth interviews elicited accounts of the best and worst of the participants' experiences of health and social care services. Access to services was not identified as being a significant problem in comparison with the participants' concerns regarding the quality of the services encountered. The central findings stress the importance of a respectful and supportive climate in relation to the qualities of service provision that the young people identified as valuable for their continuing treatment or consultation.     

The posthospital needs and care of patients: implications for discharge planning

Sixty-nine patients hospitalized for a serious illness and discharged to their own or relative's homes were followed up to learn about patient's posthospital needs; sources of help they received and how well they met these needs; and the extent to which hospital social work targets these needs in the discharge planning process. The patients, who were mostly elderly, had substantial needs for care. The family was the major care provider. Although service provision was limited, the social worker had a pivotal role in linking the patient to community services. This exploratory study points to gaps in the hospital screening and discharge planning process.     

‘When you haven't got much of a voice’: an evaluation of the quality of Independent Mental Health Advocate (IMHA) services in England

Advocacy serves to promote the voice of service users, represent their interests and enable participation in decision‐making. Given the context of increasing numbers of people detained under the Mental Health Act and heightened awareness of the potential for neglect and abuse in human services, statutory advocacy is an important safeguard supporting human rights and democratising the social relationships of care. This article reports findings from a national review of Independent Mental Health Advocate (IMHA) provision in England. A qualitative study used a two‐stage design to define quality and assess the experience and impact of IMHA provision in eight study sites. A sample of 289 participants – 75 focus group participants and 214 individuals interviewed – including 90 people eligible for IMHA services, as well as advocates, a range of hospital and community‐based mental health professionals, and commissioners. The research team included people with experience of compulsion. Findings indicate that the experience of compulsion can be profoundly disempowering, confirming the need for IMHA. However, access was highly variable and more problematic for people with specific needs relating to ethnicity, age and disability. Uptake of IMHA services was influenced by available resources, attitude and understanding of mental health professionals, as well as the organisation of IMHA provision. Access could be improved through a system of opt‐out as opposed to opt‐in. Service user satisfaction was most frequently reported in terms of positive experiences of the process of advocacy rather than tangible impacts on care and treatment under the Mental Health Act. IMHA services have the potential to significantly shift the dynamic so that service users have more of a voice in their care and treatment. However, a shift is needed from a narrow conception of statutory advocacy as safeguarding rights to one emphasising self‐determination and participation in decisions about care and treatment.     

A review and commentary of the social factors which influence stroke care: issues of inequality in qualitative literature

Stroke is the third most common cause of death in the UK and a major cause of adult disability. Stroke services have long been criticised for being deficient and there is evidence that some aspects of care provision vary across different population groups. While there is information about the patterns of service provision, questions remain about processes which might underlie these variations. The present paper sought to assess how well the processes which might lead to inequity in the delivery and uptake of stroke services are currently understood by reviewing the qualitative literature in the area. The review was carried out by systematically searching online literature databases, using keyword and bibliographical searches, within a particular time frame. In total, 55 articles were reviewed, including studies related to primary and secondary clinical care, as well as social care. Articles focused on both professionals' and patients' perspectives. The review reports the cultural factors and processes which have been identified as possible causes of barriers to professionals' delivering stroke services, as well as issues which influence patients' uptake of services. Issues identified in the literature were categorised into four broad thematic areas: conceptualisations of stroke illness and ageing, socio-economic factors, resource allocation and information provision. These themes are then revisited through the hypothesis that the concept of social and personal identity could cast new light on our understanding of how inequity in stroke care provision might arise. It is argued that the ways in which professionals and patients view themselves and each other influences their interaction, and in turn, the delivery and demand for services. Finally, the authors suggest areas where further research is warranted.     

Across the health-social care divide: elderly people as active users of health care and social care

Several ways in which elderly people may assume an active role when using welfare services are discussed here. Selected findings are presented from a study that explored the experience and behaviour of elderly people on discharge from inpatient care with regard to criteria indicating user influence or control (namely participation, representation, access, choice, information and redress). Data were collected via semistructured interviews with service users (n = 30) soon after their return home from hospital. A number of differences were revealed between health care and social care in relation to users being provided with opportunities to assume an active role and in being willing and able to assume an active role. These differences were manifest in elderly service users accessing services, seeking information, exercising choice and acting independently of service providers. It appeared paradoxical that contact points were more easily defined with regard to health care yet users were more likely to exercise choice and act independently in securing social care. It is suggested that social care needs and appropriate service delivery are more easily recognised than making the link between perceived health care needs and appropriate services. In addition, it appeared that informal and private providers are more widely available and accessible for social care. If comprehensive continuing care is to be provided, incorporating both health and social care elements, greater uniformity appears to be required across the welfare sector. Lessons for social care provision from the delivery of health care suggest the clear definition of contact points to facilitate service use. Making health care more accessible, however, does not appear to be easily attainable due to the monopoly provision of health care and the lack of direct purchasing power by potential users.     

Equity in the Brazilian Health Care System: a contribution for debate

In this article it is discussed some relevant issues in regard to inequalities in the consumption of health care services and the construction of more equitable health care system in Brazil. The concept of inequalities in health is distinguished from the concept of inequalities in the consumption of health care services. It is argued that the geographical dimension of health care service consumption differs from the social dimension. This implies that a better distribution of financial resources between geographical regions acts at the level of regional inequalities but might not have a positive impact on existing social inequalities. A more equitable system depends on a greater participation on the financing of the system of the richer people. It depends on the solidarity of the different social groups in society. The present situation of great scarcity of financial resources calls for a definition of priorities. Nonetheless, it is argued that the establishment of priorities in the availability of health care services is an ethical approach only if it is assumed to be a transient strategy directed to the construction of a system based in universal access for all those in need.     

Independent hospice care in the community: two case studies

Following its remarkable success over the past 25 years the hospice movement is now at a watershed in its development. The growing legitimacy of palliative care as a health care specialty has coincided with the development of the internal market within public sector services, and the promotion of community care. The impact of these changes is now being felt by the hospice movement and may well result in radically new forms of service provision. The focus of this paper is on the future direction of the hospices. We argue, that in the present policy context the main priority must be palliative care in the community, using two case studies of innovative services to illustrate how this might be achieved. We also explore a variety of factors which may constrain the development of community care for dying people. These include the diminishing experience of families and primary health care workers in managing death and dying and the often strongly held belief that hospice care must be in-patient care. New community services may also face difficulties both in finding a market niche which complements rather than supersedes existing provision, and in securing service contracts where provision cuts across the health and social care divide. These issues are explored through an examination of the models of care developed by the two hospice groups, their integration within existing networks of provision, and their relationship with purchasing authorities.     

Case management in mental health services:the role of community mental health support teams

The progressive reduction in the numbers of hospital places available for people with mental health problems has led to an increasing demand on community support services. One response has been the development within social services departments of community mental health support teams, which employ largely unqualified staff who offer support to people with longer term mental health needs. The paper examines to what extent the practice of one authority's support teams reflects an appropriate ‘case management’ style of service, as developed in the USA to address the needs of long-term community patients. Key features of this approach are identified, and used as the basis of analysis of the support teams' practice in relation to 214 cases. It is concluded that a ‘case management’ model can be appropriate for work involving unqualified staff, provided that the service structure as a whole enables access to other skills as appropriate. Two specific risks are identified: firstly that the service is developed because of cost rather than appropriateness; and secondly that the service can rapidly become silted up with increasing numbers of people who need service of indefinite duration.