Improving primary health care for people with learning disabilities

'Signposts for Success' (Department of Health (DoH), 1998a) states that specialist learning disability services (SpLDS) must promote liaisons with, and offer specialist advice to, primary healthcare teams (PHCTs). With the advent primary care groups (DoH, 1998b), genuine collaboration and partnership-forging is necessary and timely to prevent people with learning disabilities being excluded from healthcare services. The project described in the article had three broad aims: first, to establish a practice register of people with learning disabilities in all practices involved in the project; second, to enable practice nurses (PNs), with support, to carry out a systematic health check within the practice of people with learning disabilities; and third, to enable the project nurse to act as a crucial link between SpLDS and the PHCT. The health checks highlighted unmet health and social needs, which were then met through appropriate referral and intervention, mainly to specialist services. Follow ups were conducted to measure any health gain as a result of the applied Interventions. Evidence of health gain was revealed, pointing to the clinical effectiveness of performing such checks within the PHCTs.     

Effective health care for people with learning disabilities: a formal carers' perspective

This paper explores the perceptions and experiences of formal carers, working in three different geographical locations in the south of England, in accessing primary health care for people with learning disabilities. The sample included six multidisciplinary, community learning disability teams and 11 managers of small homes for residents who had learning disabilities. Data were collected through focus group and individual semistructured interviews. Levels of collaboration between primary health care groups and the community learning disability teams and the managers of small homes were assessed. Questions were focused upon the importance of primary health care and the key care provider within the community setting. Although some good experiences were recorded, the overall levels of collaboration were poor. Health care was perceived as very important by all of the respondents. The general practitioner (GP) as the coordinator of health care was perceived as the normal model within our health care system but the majority of respondents questioned the effectiveness in relation to their own experiences of accessing health care for people with learning disabilities. The relocation of this role to the learning disability nurse was perceived as a possible solution.     

The challenges for nurses communicating with and gaining valid consent from adults with intellectual disabilities within the accident and emergency care service

Aim. This paper reports the challenges experienced by nurses within accident and emergency departments in communicating with and gaining valid consent from adults with intellectual disabilities. Background. Consent is both a legal requirement and an ethical principle required to be obtained by health‐care professionals, prior to the start of any examination, treatment and/or care. Central to the process of seeking consent is effective communication. However, evidence shows that people with intellectual disabilities are not viewed by professionals within acute general hospitals as a vital source of information, neither are they often communicated with directly, nor involved in discussions or decisions about their health care and are frequently not directly asked for their consent. Method. A purposive sample of nurses working within the accident and emergency departments of five general hospitals was recruited to participate in this qualitative study. Data were collected from five focus groups. Findings. Effective communication was identified as the most challenging aspect in caring for adults with intellectual disabilities within this environment, having an impact on the assessment of needs, informing patients of their health status and seeking valid consent. Conclusions. Fundamental to the provision of quality care are the concepts communication, choice and control. However, these issues are perceived to be more challenging in the provision of health care to people with intellectual disabilities. Communication and consent, therefore, require further consideration within the educational and clinical areas to strengthen nurses’ competence in caring for people with intellectual disabilities, with an emphasis and understanding that choice and control are key principles for all people, being central aspects to the provision of an inclusive service for people with intellectual disabilities. Relevance to clinical practice. All nurses need to have a greater awareness of learning disability, how to increase opportunities for effective communication and be very familiar with the issue and guidelines relating to consent, to ensure that people with learning disabilities have choice, control and are more active in decision making regarding their health.     

APN Knowledge,Self‐Efficacy,and Practices in Providing Women's Healthcare Services to Women with Disabilities

Women with disabilities require the same gynecological and reproductive healthcare services as women without disabilities, yet they often experience difficulty obtaining them. Advanced practice nurses (APNs) increasingly provide primary care services that include women's health care, yet their influence on this population has not been systematically examined. This study examined the practices, environments, knowledge, and self‐efficacy of APNs in Texas regarding provision of women's health care to women with disabilities. The study's respondents are 744 women who replied to a mailed survey. The results reveal that while nurses do not lack knowledge, work environments do not support competent care of women with disabilities and practices do not always follow national guidelines. Predictors of self‐efficacy in provision of health care to women with disabilities were status as a women's health nurse practitioner, previous rehabilitation experience, high knowledge scores, and a working environment perceived as accessible. Until changes are made in APN education and environmental barriers are addressed, APNs may not be able to provide optimal women's healthcare services to women with disabilities.     

The evolving role of community nurses for people with learning disabilities: changes over an 11-year period

Aims and objectives. To provide an overview of the changes in the caseload and working practices of community nurses for people with learning disabilities (CNLDs) over an 11‐year period within one region of the UK. Background. Recent reviews of government policy within the UK and internationally have highlighted the need to promote inclusion and health facilitation for people with learning disabilities (intellectual disabilities). The CNLDs have been highlighted as having an integral role in achieving these objectives. However, little is known about the current role of community nurses and how this has evolved over the past decade. Designs and methods. A survey design was used in which the total population of CNLDs within one region of the UK were asked to complete a postal questionnaire. Results. Forty community nurses in Northern Ireland completed questionnaires. This provided information about 1559 people with learning disabilities on their current caseloads. Results showed less involvement with children, more focus on adults with physical and mental health needs and nurses often appeared to have a monitoring rather than an active clinical role. Data also identified an increasing caseload size and a pattern of referral largely from within learning disability services. Conclusions. The role of CNLDs has altered in Northern Ireland over the past 11 years with some evidence of a reorientation towards a more health‐oriented focus. Further consideration needs to be given to how well this will meet the changing needs of people with learning disabilities and their families in light of the increasing emphasis on the provision of inclusive services. Relevance to clinical practice. Community nurses need to review their current role, caseload management and links to primary and acute care if the policy objectives of inclusive services and health facilitation are to be achieved. It will also be necessary to revise their education preparation in light of the changing role of CNLDs.     

Health facilitation for people with learning disabilities

Health facilitation is a concept introduced in the white paper 'Valuing People: A New Strategy for Learning Disability for the 21st Century' (DH, 2001a). A project was set up in the West Midlands regions to look at what Primary Care Trust and specialist learning disability services were planning to do in respect of health facilitation in learning disabilities and to develop a resource tool for use by individuals working in this role. This article reiterates the extent of unmet health need experienced by people with learning disabilities and suggests that everyone involved in a caring role should be responsible for addressing their health needs. Primary and secondary care staff from across the legion were consulted, and a range of educational needs were identified for these professionals. Recommendations were made for health facilitators to support the primary and secondary care teams to enable improved access to mainstream health services for people with learning disabilities. The recommendations can be applied nationally.     

An evaluation of community learning disability nurse teams in two London boroughs

One of the tasks for all the recently established local learning disability partnership boards is to review the role of specialist learning disability services by autumn 2003. This article presents a summary of a recent operational and strategic evaluation of community learning disability nurse teams working in two boroughs, managed by social services. Overall, local caseloads suggest that there are not enough nurses in the two boroughs. Furthermore, there is no spare capacity to address the Government's directive that specialist staff become health facilitators, and give more time to helping primary and secondary care develop the capacity of their services for people with learning disabilities (Department of Health, 2001). Locally, these findings challenge the partnership boards and social services to adequately resource specialist services, meet Government targets and address nationally acknowledged, disproportionately high, unmet health needs in the learning disability population.     

Clinical practice placements in the community: a survey to determine if they reflect the shift in healthcare delivery from secondary to primary care settings

With the worldwide strategic shift of health care delivery from secondary to primary care settings, more newly qualified nurses are working in primary care, making exposure to the variety of roles available to nurses essential for future workforce development. The aim of this small research project was to explore whether English universities' programmes are providing clinical practice placement experiences which reflect the breadth and complexity of nursing roles available in primary care. A survey of academic staff highlighted that universities designed curricula based on local placement and mentor availability and while a variety of primary care teams are being used, district nursing teams continue to be used the most, particularly for substantive placements. The need for specified staff to work across university and placement settings was deemed essential for identifying and supporting community based clinical placements. Recommendations from the project include: an increasingly collaborative approach amongst clinical, academic and managerial staff to create a learning culture for all health professional students' practice experience; robust strategic systems to ensure clinical placements are offered by services on the periphery of a national health service; and focussing of resources on students with a desire to pursue a primary care career.     

Quality of life as a concept for developing learning disability nursing practice?

This paper offers a critical examination of how the concept of Quality of Life might be used to enhance learning disability nursing practice. Quality of Life will increasingly influence the provision and evaluation of services and practice in the field of learning disability. Attempting to define and assess Quality of Life is, however, problematic because of the complexity and multidimensional nature of the concept. The use of domains to measure Quality of Life is advocated by many researchers for both objective and subjective measures and use of Quality of Life as an evaluation tool is seen as a way of improving the life quality of people with learning disabilities. However, there are concerns that the use of such an approach could perpetuate professional agendas rather than empower people with learning disabilities themselves. To date, Quality of Life approaches have not had a major impact on learning disability nursing. However, it is suggested that they can be helpful as sensitizing concepts, a basis for collaborative care planning and a framework for evaluation. Recommendations are made for education, practice and research.     

Improving primary care services for people with learning disability

The health of people with a learning disability is significantly poorer than that of the general population. In this project, two senior nurses developed a programme of inclusive health care aimed at enabling people who have learning disabilities to lead healthier lives. The project demonstrated that a joined-up approach is required across agencies to tackle the exclusion of people with a learning disability from mainstream health care services.     

Self-injurious behaviour: reviewing evidence for best practice

This article brings together some of the research literature from the last 15 years concerning self-injurious behaviour (SIB) in people with learning disabilities. There is a focus on medical, biological and psychological research literature because of the important contribution these disciplines have made to the understanding of such behaviours. The article also explores contemporary evidence for the management of people with learning disabilities who present with SIB. The care and management of this group of people presents learning disability nurses with distinctively distressing challenges. Within the article definition, prevalence, topography, causation and evidence for best practice are outlined. The article concludes with a brief exploration of the role of the learning disability nurse in contributing to the health and wellbeing of this group of people.     

Parenting by people with learning disabilities: the educational needs of the community nurse

This article discusses some of the findings of a research project which was designed to examine the role of community learning disability nurses in supporting people with learning disabilities who become parents. The need for information and help with the experience of pregnancy, childbirth, becoming parents and bringing up children has been highlighted in a recently issued guide for commissioning and providing services for people with learning disabilities (NHS Executive 1998). This research, however, indicates that nurses do not feel themselves to be adequately prepared for their role in supporting parenting. Responses from a questionnaire survey of 266 practitioners revealed little coverage of key issues relating to parenting on either pre-registration or post-basic courses and suggests, therefore, that some courses may not be meeting the perceived needs of these nurses in this crucial aspect of their role. This is likely to have significant consequences for this client group and suggests that educationalists need to consider ways of including more extensive discussion of parenting in educational provision for the multiplicity of professional groups who support and care for adults with learning disabilities.     

Caring for adults with a learning disability in the community

A recurring theme within the literature is gaps in the delivery of services for people with a learning disability living in the community. These gaps occur between health professionals, primary and secondary care and specialisms within nursing. Gaps also exist between social service policy and implementation, health and social care. Recent national and local reports have sought to address these issues by promoting ways for health and social services to work in partnership. The theme of health promotion is highlighted in all these documents, but implementation of health promotion has been firmly placed within the boundaries of primary care. This poses a dilemma for primary care: does the primary care team or a more specialist community learning disability team provide better care for people with a learning disability? This article summarizes strategies and policies within the literature and difficulties that need to be considered when offering a service to people with a learning disability.     

Addressing the mental health needs of people with learning disabilities

It is now common policy in providing care for people with learning disabilities to ensure improved access to mainstream health services. Consequently, all nursing disciplines are required to have improved understanding about the physical and mental health needs of this client group. This article focuses on their mental health needs. It is predominantly targeted at mental health and learning disability nurses, but will be of interest to all nurses who increasingly come into contact with people with a learning disability and require insight into all aspects of their health.     

Perceptions of training for care attendants employed in the care of older people

BACKGROUND: Care attendants, have long assisted nurses in the provision of care for older people in a variety of care settings in Ireland. While there has been recent interest in the provision of formal training for this grade of health care worker the majority remain untrained and unregulated. AIM: This paper describes a study undertaken to explore the perceptions of nurses and care attendants regarding the provision of formal training for care attendants employed in the care of the older people in southern Ireland. The aim was to identify through empirical research, the perceived implications of this training on the role of both nurses and care attendants. RESEARCH METHODOLOGY: A qualitative research design was used to afford each set of respondents the opportunity to express their thoughts and concerns. The research sites were two settings providing long-term care for older people. The research sample nurses (n = 40) and care attendants (n = 40). Data was derived through the use of two research instruments, focus group discussion and a questionnaire containing open-ended questions. Themes were extracted from the data using content analysis. RESULTS: The study identifies positive attitudes towards training for care attendants by both nurses and care attendants but also a perceived link between the provision of training and a blurring of role boundaries. In addition, findings disclose that although nurses are positively disposed to the training of care attendants, this is not accompanied by a desire to become actively involved. CONCLUSIONS: The study indicates a positive view of training for care attendants, also highlighting the importance of role clarification. Results are particularly relevant in the present climate of demographic change, changes in nurse education and staff shortages in Ireland.     

Mainstream In‐Patient Mental Health Care for People with Intellectual Disabilities: Service User,Carer and Provider Experiences

Background Government guidelines promote the use of mainstream mental health services for people with intellectual disabilities whenever possible. However, little is known about the experiences of people with intellectual disabilities who use such services. Materials and Methods Face‐to‐face interviews with service users, carers and community nurses were completed and analysed on a case by case basis using interpretative phenomenological analysis. The results were followed up in focus groups with service providers. Results Positive aspects included the provision of respite, particularly for carers, and good basic care. These were outweighed by a perception of the admission as disempowering and lacking in flexible treatment provision. Accessing help emerged as a major problem, as well as the prospect of staff neglecting the specific needs of people with intellectual disabilities. Conclusions While there were some indications of improvements in line with recent policies and guidance, mainstream services seem a long way off realizing aims of easy accessibility, person‐centred practices and active partnership with intellectual disability services.     

Meeting the needs of people with learning disabilities in acute care

This article describes the work of the Birmingham Acute Hospital Liaison Project, which seeks to support people with learning disabilities in acute care. Following the community care reforms, more and more people with learning disabilities are accessing mainstream primary and secondary healthcare services in community settings staffed by generic rather than specialist learning disability staff. Unfortunately, research suggests that some people with learning disabilities receive poor quality care and that available services are not always responsive to their needs. As a result, the Acute Hospital Liaison Project has a dual role: supporting people with learning disabilities as they enter hospital; and working with ward staff to equip them with the skills and confidence they need to work more effectively with people with learning disabilities.     

Priorities for mental health and learning disability nurse education in the UK: a case study

? The closure of psychiatric and mental handicap hospitals, the emphasis on community rather than hospital care and the distinction between health and social care for people in the community, with its funding implications, have demanded that mental health and learning disability nurses face the challenges of developing new skills and new ways of working. ? In this paper the findings of a study funded by the English National Board for Nursing, Midwifery and Health Visiting (ENB) are reported. This study explored the impact of these reforms on nurses and their practice, and identified the educational needs of mental health and learning disability nurses that have changed as a result. ? The study took a multiple-case study approach and involved interviews with 22 `key informants' and 88 mental health and 59 learning disability stakeholders in six sites, three in each nursing specialty. ? Inductive analysis of the interview data revealed 20 categories which summarize the major issues facing the two nursing specialties. ? These categories are discussed under seven themes and issues for nurse education are raised.