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.     

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.     

Health facilitation in primary care seen from practice and education

'Valuing People: A New Strategy for Learning Disability for the 21st Century' (Department of Health, 2001a,b) aimed to introduce 'health facilitation' to improve the identification of health needs and access to appropriate care for people with learning disabilities. One London Borough took a leading role in implementing this new function, in the form of dedicated, full-time health facilitators. The authors examined the implementation and its impact, employing an innovative collaboration between professionals from practice, education and research. The clinical nurse involved was observed during her first year of health facilitation. The authors evaluated her impact on professionals, people with learning disabilities and the wider system of health. In some areas (for example, information technology) the health facilitator could make little progress in one year. However, she connected with a widening circle of local people and services, for example, in introducing health action plans for adults with a learning disability. Across the Borough some professionals became more aware of specific health issues in their local population.     

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.     

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.     

Access to Secondary Healthcare for People with Intellectual Disabilities: A Review of the Literature

Background There is growing evidence that people with intellectual disabilities have greater healthcare needs than the general population and that these needs are often unmet. Recently, increasing attention has been drawn to poor care received by people with intellectual disabilities when admitted to hospital. Method A literature search was conducted to identify studies on experiences of secondary healthcare for people with intellectual disabilities. Studies were published between January 1990 and March 2008. Results Thirteen studies were identified. Important influences on the experience of hospital care were: individual factors; the carer’s role; the attitudes, knowledge and communicative style of health staff; and the physical environment. A range of recommendations and initiatives have been developed to improve hospital care. Conclusion More research is needed, given that so few studies are published in this area. Initiatives to improve access to secondary healthcare need to be evaluated to inform the development of services.     

Roles of General Practitioners in the Provision of Health Care Services for People with Intellectual Disabilities: A National Census in Taiwan

Aims The aims of the present study were to explore the perceptions of general practitioners (GPs) in the provision of health care services for people with intellectual disabilities and to analyse GPs’ priorities in the delivery of health care services to this group of people in Taiwan. Methods The study employed a cross‐sectional design and was conducted by a census method, the aim being to collect information from all GPs in Taiwan. A questionnaire was mailed out, between 10 April 2006 and 16 June 2006, and the responses provided by 331 GPs (response rate = 16) were included in the analysis. Results The results showed that most of the respondents did not have sufficient experience to deal with patients with intellectual disabilities and lacked adequate knowledge about intellectual disabilities. Indeed, respondents expressed the need for on‐the‐job training in the field of intellectual disabilities and generally agreed that their role in providing health care services for people with intellectual disabilities was important. However, they were generally not satisfied with the achievements of their role on health care issues. The study highlighted that many issues need to be prioritized for people with intellectual disabilities in relation to policy planning at different health care stages (primary, secondary and tertiary health care). The results also revealed that those senior GPs with considerable experience in treating people with intellectual disabilities were more likely satisfied with their role in providing health care for this group of people. Conclusions It is concluded that Taiwanese health and welfare authorities need to focus more carefully on issues concerning deficiencies in the training of GPs, and to employ appropriate strategies to address health care issues raised in the present study so as to improve the quality of care for people with intellectual disabilities.     

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.     

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.     

Emergency care for people with learning disabilities: what all nurses and midwives need to know

People with learning disabilities have high health needs and as a result will require access to all aspects of healthcare systems, including the emergency services. The evidence of the health needs experienced by this group is evolving and developing and they have a range of issues that will bring them into contact with general hospital and the emergency services. It is now apparent that they experience risks to their health when accessing general hospital care and action is required to identify and address their distinct health needs. Emergency services are often the first point of entry into the healthcare system and as a result they need to develop their knowledge and skills in meeting the health needs of this group. Partnership working with specialists in learning disability health and emergency care can help to improve care.     

The sexual health needs of people with learning disabilities

The sexual health of people with learning disabilities raises important management and practice issues for health services, and should be examined in the context of the current policy emphasis on advocacy, person-centred services and social inclusion (Department of Health, 2001). People with learning disabilities may have limited access to mainstream health services, and sexual health and genitourinary medicine (GUM) services are no exception (DoH, 2001; 1998). They are often excluded from society, either because they are 'segregated' within specialist support services in the community or because they live in isolation with carers, and health and social care models do not always join up locally to meet their needs.     

Health facilitation in learning disability: a new specialist role

This article attempts to examine the important role of the health facilitator in learning disability and recommends that the specialist community learning disability nurse already has the appropriate skills and knowledge to carry out competently the role across the acute, primary and secondary care sectors. A model for community specialist learning disability practice already exists (Bollard and Jukes, 1999) but for health facilitation to have an impact a model of leadership and charge is recommended to be aligned to a model for practice. A CALECT model (a mnemonic which represents essential core roles and skills of a health facilitator) is proposed as a complementary vehicle to make facilitation work.     

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.     

Caring for people with learning disability using care management

Current Government health policy is moving towards the delivery of services for clients with a learning disability through mainstream primary care services. At present there are difficulties in providing health services that meet the needs of clients. These include lack of resources (financial, physical and human), time and expertise. Yet clients with learning disabilities often have some of the most complex physical and mental health needs and they have a right to expect access to services that are responsive and sensitive to their requirements. In light of the current policy and stated difficulties, all service providers and stakeholders need to work together to review how services are provided and to negotiate shared resources. This article suggests adopting a care management approach, where clients are supported by different providers with a lead practitioner taking responsibility for assessment, planning and review in partnership with the client and his/her carers.     

Health screening for people with learning disabilities by a community learning disability nursing service in Northern Ireland

Over the last 30 years there has been a considerable increase in the life expectancy of people with learning disabilities. This has resulted in changing patterns of morbidity and mortality and an increasing recognition of the health needs of people with learning disabilities. Major strides forward have been made in the reduction of preventable illnesses among the general population. However, among people with learning disabilities such illnesses have received only limited health promotion attention until recently. In the last decade major gaps have been identified in the ability of current primary health services to respond to the needs of people with learning disabilities. The need to respond effectively to this situation has been identified as a priority by the current United Kingdom Government. Following an overview of the literature in relation to the changing health profile of people with learning disabilities and the need for health screening, consideration is given to some of the key difficulties which may be encountered when attempting to utilize current primary health services. The analysis of data derived from the health screening of 373 people with learning disabilities by a community nursing service in Down and Lisburn Health and Social Services Trust reveals the need for further action in relation to cardiovascular status, sensory deficits, mobility and aspects of sexual health.     

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.     

A focus group inquiry into the perceptions of primary health care teams and the provision of health care for adults with a learning disability living in the community

This study addresses the primary health needs of adults with learning disabilities living in the community Policies specific to this client group and incorporating the ideology of normalization are noted and evidence of their implementation is sought Previous research suggests that the adoption of a social rehabilitative model of care may have resulted in the neglect of health care needs The recent closure of a local, subnormality hospital provided a critical situation and context for the study The research question is, how do primary health care teams perceive the needs of adults with learning disabilities living in the community, and are they meeting their needs' Three primary health care teams formed the sample and data were obtained through semi-structured, focus group interviews A conceptual framework developed early in the study influenced both the interview guide and the data analysis The study suggests that practitioners working within primary health care teams have a limited awareness of the health care needs of adults with learning disabilities Contributing factors were identified and include negative attitudes towards the concept of normalization, inadequate education, a shortfall in financial and human resources, and poor collaboration with the specialist team     

The mental health needs of people with severe learning disabilities

People with severe learning disabilities can present with complex behavioural and emotional needs that are best understood within a biopsychosocial framework. This article outlines the range of issues involved in the presentation and identification of mental health needs in people with severe learning disabilities. The use of a multidisciplinary and multimodal approach to assessment, care planning and case management is promoted in order to provide effective, comprehensive care in meeting the mental health needs of this client group. The key knowledge and skills required to meet the mental health needs of this client group are outlined and the role of the nurse as a key professional in the coordination of the assessment and care management process is explored.     

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.