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.     

The Valued People Project: users' views on learning disability nursing

A well-educated and trained workforce is undoubtedly crucial to the development of quality care for people with learning disabilities. Notwithstanding this, and unsure as to the need to continue to commission educational programmes for one part of this workforce-pre-registration learning disability nursing-South Central Strategic Health Authority commissioned the Valued People Project to undertake a detailed strategic review of educational commissioning, along with a review of the specialist learning disability health workforce more generally. This project has recently been completed, and provides a unique evidence-based expert evaluation of the future strategic direction of education commissioning and leadership for workforce issues in specialist learning disability services, as well as the wider NHS workforce. This is the first in a series of articles that reports on one aspect of the project: the focus group work undertaken with parents and relatives of people with learning disabilities, and people with learning disabilities themselves, as to the need and type of health workforce needed to support them in the future. The article concludes by identifying the key messages of importance from parents and people with learning disabilities concerning the future specialist and wider NHS workforce.     

Primary health care provision for adults with a learning disability

BACKGROUND: During the last decade, primary care has been designated as the main provider of health care to people with learning disabilities. Practice nurses based in primary care teams are increasingly the first points of contact with health services. They make an important contribution to promoting good health, with health screening and illness prevention work being a significant part of their role. However, little is known about their views or involvement regarding the provision of primary care for people with learning disabilities. There is therefore a need to explore the nursing perspective, from within primary care, on the current provision of care for people with a learning disability. RESEARCH AIM: To inform the learning disability service of the role of primary care in current service provision for people with learning disabilities. RESEARCH METHOD: A survey of all practice nurses currently employed by Grampian Health Board in Aberdeen was conducted in June 2001. An initial pilot study was conducted in primary care and learning disability services. Data collection took place during June and July 2001. All practice nurses working in the geographical region of Grampian were invited to participate. RESULTS: Communication barriers exist, preventing access to health screening and treatment for some people with learning disabilities. Independent living skills, for example dietary management and budgeting, require additional community support. These conditions pose complex problems for practice nurses and other members of the primary care team. CONCLUSION: This study indicates a need for closer support and partnership with the learning disability service. The factors necessary for providing health care to people with learning disabilities extend beyond the domain of primary care teams. The findings of this survey have important implications for education and support to enable carers and professionals to provide a high standard of care.     

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.     

Access to secondary care for people with learning disabilities

A person-centred approach is needed to improve access to secondary health care for people who have learning disabilities. The Department of Health (1995a) drew attention to this issue when it reported that people with learning disabilities sometimes have problems maintaining their health because hospitals fail to work in an interdisciplinary manner with the specialist learning disability services. This article focuses on a case study where the difficulties in operating on a patient with learning disabilities and mental health problems were overcome through a multidisciplinary and patient-centred approach. The case study provides evidence of mainstream health staff and learning disability professionals working together and breaking down barriers to provide a seamless service.     

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.     

Improving care for people with learning disabilities in hospital

Evidence suggests that people with learning disabilities have greater healthcare needs than the general population and that these needs are often unmet. A literature search was conducted to identify factors influencing general hospital care for people with a learning disability. Electronic databases, general internet searches and references from the initial search were used to identify relevant studies published between January 1990 and December 2010. Fourteen studies were identified that matched the inclusion criteria. Recurrent themes included the effect of being in hospital on the individual with a learning disability, attitude and knowledge of staff, the hospital environment, role of carers and recommendations for improvement. A critical appraisal tool was used to assess the quality of the selected literature. Despite limitations, all the studies contributed to the evidence base. Although much has been written about general hospital care for people with a learning disability, credible research in this area is lacking. The areas of good practice identified from the available literature need to be evaluated and disseminated so that all people with a learning disability can receive the best possible health care.     

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.     

Designing and implementing a 'dual diagnosis' module: a review of the literature and some preliminary findings

People with a learning disability experience the full range of mental health problems, with prevalence greater than in the general population. The literature suggests that the move to community care has highlighted their special needs, as they face a complexity of life experiences and risks. Nurses play a key role, and must be equipped with appropriate knowledge and expertise to respond to the mental health problems of people with a learning disability ('dual diagnosis'). Major national initiatives support research and propose access to appropriate education for care professionals. In order to respond to locally identified educational needs a 'dual diagnosis' module was developed for nurses working with people with a learning disability who experienced mental health difficulties. The aims were to increase knowledge, to consider implications for learning disability nursing, to increase awareness of research and policy issues, and ultimately to enhance practice. Preliminary findings suggest that participants have moved from an entry position of professional bias and lack of knowledge and skill, to a changed perspective and enhanced practice relating to the mental health needs of clients with a learning disability. These changes are, however, speculative and may be attributable to variables other than module completion. Implications for further research and development are suggested.     

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.     

Out-of-area placements in Scotland and people with learning disabilities: a preliminary population study

People with learning disabilities have a different pattern of disease from the general population and high health needs that are frequently unidentified and unmet. Many require responses from general and specialist health services. A picture is emerging of some people with learning disabilities, often with complex care needs, moving from their home area on what is being termed, out-of-area placements, to receive specialist care. However, within the learning disability population, limited research has been undertaken and the impact on health services is unknown. Data were collected from health and social care providers to identify people with learning disabilities moving in and out of services across Scotland. Further data about the consequences and impact of out-of-area placements were gathered in one geographical area using focus group methodology. The results suggest that people with learning disabilities are moving in, out and across Scotland, often as a result of breakdown of local care arrangements or because of lack of specialist resources. Planning, service development and effective communication need to be in place to address the needs of this increasing and ageing population.     

Learning disability: promoting health equality in the community.

A project to discover if people with a learning disability would benefit from a pop-in health clinic has shown that a needs-led service, co-ordinated by a health professional, can reduce gaps and inequalities within healthcare provision.     

Managing the needs of people who have a learning disability

A recent report from the National Patient Safety Agency has highlighted the risks facing people with a learning disability when they enter hospital. Recent policies and current patterns of care will see increasing numbers of people with a learning disability accessing generic health services, including hospitals. Nurses may need to develop suitable approaches to deal with the demand. This article offers some practical considerations.     

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.     

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.     

Improving care for children with cerebral palsy

A report about the health care of people with learning disability published by a UK charity concluded that this group was discriminated against and that healthcare professionals had a poor understanding of their needs. A case report of a young person with cerebral palsy is used here to demonstrate good practice in the care of children with learning disabilities. The careful development over time of individualised solutions makes a difference to the quality of life for children and families. Improved understanding through education as well as collaborative working and family participation will help ensure that children and young people receive the range of services they require.     

Care pathway initiative for people with intellectual disabilities: impact evaluation

AIM: To improve the integrated care of individuals with learning disabilities. BACKGROUND: We report on the evaluation of a care pathway initiative in learning disability services. METHOD: Three separate care pathways were developed and implemented as part of a pilot project. Improvements in parameters were independently verified. RESULTS: Service providers and people with learning disabilities welcomed the introduction of care pathways into their services. CONCLUSIONS: We conclude that the introduction of care pathways leads to increased communication within services, greater satisfaction and improved outcomes. These gains were achieved without an increase in resources.     

Caring for inpatients with learning disabilities

People with learning disabilities are more than twice as likely as the rest of the population to experience ill health, yet their health needs are often poorly met. This article describes the implementation and evaluation of an education project, led by community learning disability nurses, to improve the care of patients with learning disabilities in hospital.     

Integrating disability studies concepts into occupational therapy education using service learning.

This article describes an occupational therapy educational program's experience with service-learning courses that has fostered student learning about service to the community and disability as a multidimensional construct. Faculty-reflective perspectives about disability and ways to enhance learning about disability as a human experience are presented as an important consideration for health care education curriculum design and course development. Through review of educational evaluation described in research on service learning, the authors used a multi-method assessment matrix to capture students' perspectives on their service learning. The community project investigated accessibility issues that persons with disabilities encountered in social participation at community arts venues. Results from student surveys, interviews, focus groups, and journal entries indicated that service learning contributed to occupational therapy students' appreciation and understanding about disability as an individual, environmental, and societal construct.