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.     

Improving care for people with learning disabilities

In November 1998, a project group began a review of acute hospital service provision in Sheffield for people with learning disabilities and their carers. The aim was to produce recommendations for future development. Throughout the project, patients with learning disabilities and their carers were consulted along with professionals and focus groups representing people with learning disabilities. The project group identified the need for new audit tools and integrated care pathways, changes to documentation and working practices, as well as the need to develop training. The group presented its findings to the executive of the newly formed Sheffield Teaching Hospitals NHS Trust, which gave full support for the group's recommendations to be implemented throughout the trust.     

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.     

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.     

Issues emerging from the London Learning Disability Plan

This article gives an overview of the draft of the London Learning Disability Plan developed by the Department of Health, Social Services Inspectorate and the National Health Service Executive. The London Plan is founded on a social model of disability in which there is not only a strong focus on health and social care, but also an integration with housing, education, employment, leisure and other relevant organizations. It advocates integrated commissioning and delivery of specialist learning disability services that will require both health services and nurses to change existing structures and interventions. New forms of workforce development will emerge and clarification will be required about the future role of learning disability nurses within London. Information specific to the Plan is gathered from the Department of Health's learning disabilities Web site. The Plan is laid out in four booklets, one of which (Booklet 2: 'Services to Improve People's Lives') was not available at the time of writing. The article thus contains information and proposals that may be altered by subsequent publication.     

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.     

Parents of Children with Intellectual Disabilities: Their Expectations and Experience of Genetic Counselling

Background Following the birth of a child, parents and other family members have to adapt to their new circumstances. This process takes time and can become more complex when the child is suspected or diagnosed as having intellectual disabilities. When a child has a disability, parents often seek answers as to the origin and nature of the condition as part of the adaptation process. For some parents, this will result in genetic investigations and could lead to the provision of personal genetics about the child and parents. Materials and methods This paper reports a mixed‐method project that combined questionnaires prior to and interviews after an appointment with a geneticist. The project sought to identify the expectations and experience of parents who had a child referred to specialist genetics services. Results and conclusions The findings identify that parents felt largely unprepared for their appointment and reported feelings of failing to maximize the opportunity present. The need for more effective liaison between specialist regional and local primary care and learning disability services is also highlighted. Parents made practical suggestions relevant to all the above services about how they could be better supported at this difficult stage in the adaptation process.     

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.     

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.     

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.     

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.     

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.     

Maintenance of oral health in people with learning disabilities

The oral health of people with learning disabilities is often compromised, which has a deleterious effect on their well-being. This article explores the need for specialist intervention. Barriers to effective care are scrutinised and potential solutions are suggested. As many people with learning disabilities are reliant upon their carers for the maintenance of their oral health, the article concludes with an analysis of advice to carers.     

Multiprofessional working, interprofessional learning and primary care: a way forward?

Across all sectors of health and social care there is a growing need for collaboration between professionals, agencies, providers and above all with the people they seek to serve.The significant challenge is how to create, within the existing and future workforce, the capability to work in multi professional teams capable of effective collaboration.The intention of this paper is to explore the implications that multi- or more specifically inter-professional learning may have for collaboration within primary care. As part of this, the state of the current evidence base regarding this form of learning will be explored. However, just as this way of learning is but one element in a wider picture of health care, so the focus will also include the implications for a workforce relevant to future primary care.     

The way forward for learning disability nursing

This article looks at a possible future or direction for learning disability nursing. Taking into account the physical, emotional, spiritual, social, medical, dental and mental health needs of people with learning disabilities, and reports from Mencap, this article outlines the need for flexibility and innovation from within the nursing profession. One forward-thinking residential home is identified who employ their own learning disability nurse to to support the residents in achieving good health and encourage communication skills between staff and residents and to promote individual rights, choice, privacy and dignity.     

A qualitative analysis of the 'management of schizophrenia' within a medium-secure service for men with learning disabilities

Within secure psychiatric services, nurses trained to work with people with learning disabilities are often called upon to deal with those experiencing psychosis; a role that they are not routinely prepared for in generic learning disability nurse training. Psycho-social interventions (PSI) are recommended as an adjunct to routine pharmacological treatment for people experiencing psychosis. There is a small literature that suggests that PSI has utility with people with learning disabilities. As part of a wider evaluation of the introduction of a PSI framework to a 10-bedded medium-secure unit for men with learning disabilities and mental health problems, 13 members of nursing staff completed the 'Management of Schizophrenic Patients Checklist'. The responses were analysed using a grounded theory approach. Principle themes identified are described. The therapy vs. security quandary frequently reported in forensic psychiatry was evident in responses. The findings are guiding a programme of training and ongoing supervision within the service and are discussed in the context of wider therapeutic issues and institutional environment.     

Inclusive nursing care for people with intellectual disabilities using urology services

The need to address the health needs and provide equity of access to health care for people with intellectual disabilities has been highlighted nationally within the UK, as well as internationally. Despite a similar likelihood (if not an increased likelihood) of urological problems among people with intellectual disabilities, this topic appears to have received limited attention within the wider nursing or the specific intellectual disability literature. This paper considers the potential challenges that may be encountered in seeking to provide care and support a person with intellectual disabilities who may require the support of a urology nurse and provides some suggestions for practical actions to respond effectively.     

Educating the future sonographic workforce: membership survey report from the British Medical Ultrasound Society

The British Medical Ultrasound Society (BMUS), the Consortium for the Accreditation of Sonographic Education (CASE), education providers and the NHS are working together to review how best to develop education for the future sonographic workforce. There is currently a national vacancy rate of approximately 12% across NHS Trusts. Education course placements are often limited to the number of clinical training places available within departments, resulting in a disparity between vacancies and the numbers of qualified sonographers graduating. Clearly there is a need for education to match the service demand. A term often used as a solution to the workforce problem is ‘direct entry’ ultrasound education. Anecdotally this term has caused confusion amongst health care professionals and as such the aim of this work was to gain an understanding of the views and opinions of BMUS members and interested professionals about direct entry training and subsequent development of any future training programmes. BMUS undertook an online survey with 286 responses. The survey provided insight into the opinions of ultrasound practitioners and the complexities of developing a relevant educational programme for the future sonographer workforce. The results suggested a number of concerns with direct entry ultrasound programmes, including insufficient training places, lack of health care background knowledge, lack of imaging knowledge and no state registration specific to sonographers. Benefits of direct entry to ultrasound training were perceived to be increasing the number of sonographers trained each year, whilst training people in their first choice profession with skills developed specific to the sonographer role. Support for direct entry ultrasound training was limited to 51% of respondents who would advocate this form of ultrasound training if it led to qualified sonographers with the same skills as sonographers exiting from current CASE accredited programmes.     

People with learning disabilities who also have mental health problems: practice issues and directions for learning disability nursing

The plight of people with learning disabilities who have mental health problems has become an issue of contemporary importance in the provision of health services to this section of the population. This paper will argue that learning disability nursing has a central role to play in the promotion of mental health for this client group ( Department of Health 1995a ). However, learning disability nursing presently operates without a clear model of mental health. Therefore, before this potential can be realized there is a need to establish the common ground between the discourses of learning disability nursing and those of psychiatric nursing which might be related to this client group. This paper begins by identifying the background issues relating to the problems of meeting the mental health needs of people with learning disabilities. It then proposes that an applied behavioural approach has the potential to provide a coherent theory that can link the discourses of normalization, developmental psychiatry and mental health nursing, whilst also establishing the applied behavioural approach as a powerful technology upon which meaningful interventions can be designed.