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.     

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 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.     

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.     

Cognitive behaviour therapy and people with learning disabilities: implications for developing nursing practice

People with learning disabilities are an ageing and increasing population and have been the subject of policy initiatives by the four countries of the UK, detailing the range of supports that need to be in place for this group. The evidence base of their mental health needs is growing and with it the need to ensure the full range of psychotherapies available to the general population are made available to people with learning disabilities. Cognitive Behaviour Therapy (CBT) is now a widely accepted and effective form of psychotherapy for many mental health problems and the evidence base is growing on the effectiveness with the learning disability population; however, the model needs to be applied differently for this group to take account of their cognitive impairment and support needs. Registered Nurses in Learning Disabilities are well placed to apply this approach within their clinical practice; however, there is an absence of leadership and direction in the development of CBT for this group of clinicians. There is a need to support education and practice development to contribute to addressing the emotional needs of people with learning disabilities. Action is required to support education to prepare Registered Nurses in Learning Disabilities to practice CBT and to contribute to the ongoing development of research in this area of clinical practice.     

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.     

Involving people with learning disabilities in nurse education: towards an inclusive approach

There is limited evidence that explores how to effectively include people with learning disabilities in nurse education in the U.K. The majority of reported work relates to mental health nursing and social work training (Morgan and Jones, 2009). This paper specifically reports on the processes and activities undertaken by the authors with people with learning disabilities in the development of a new BSc learning disability nursing programme, a specific branch of nursing in the U.K. In doing so, findings and discussion from two separate projects involving students and people with learning disabilities will be integrated into the paper. EPICURE (Engagement, Processing, Interpretation, Critique, Usefulness, Relevance and Ethics (Stige et al. 2009) is adopted as a qualitative framework throughout the paper to evaluate the reported work that took place between September 2006 and October 2010. Suggestions are therefore made regarding the benefits and challenges of striving towards an inclusive approach to user involvement in nurse education, with particular reference to learning disability. The work presented in the paper demonstrates how through careful involvement of this population, deeper learning opportunities for all nursing students can be created.     

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.     

Integrating data for learning disabilities service providers: are the barriers and solutions technical or organisational?

Since the publication of the Government White Paper 'Valuing People: a new strategy for learning disability for the 21st century', the responsibility for providing health care for people with learning disabilities has shifted rapidly to primary care. However, people with learning disabilities are supported by a disparate group of providers, from health care through local authorities to the voluntary sector, with resultant difficulties in providing seamless care. There would seem to be considerable potential for 'joined-up' data and information services to improve this situation, and Semantic Web technologies offer many enticing possibilities in this regard. However, to be effective, many organisational and policy issues have to be addressed; not least among these is the concern of patient confidentiality. This is particularly pertinent given that people with learning disabilities might be less able to make informed decisions. The approach that this paper takes is to review the policy and service scenarios that would benefit from 'joined-up' data, and then, based on user feedback from a series of seminars with stake-holders on these issues, explore what works well, what works less well, and to offer suggestions for future developments.     

Indicators of choking risk in adults with learning disabilities: a questionnaire survey and interview study

Purpose. Feeding and swallowing impairments are key predictors of increased morbidity and mortality in adults with learning disabilities. This postal survey and interview study sought to identify risk factors in adults with learning disabilities who have histories of choking. Method. A total of 2000 questionnaires were sent to carers of all adults with learning disabilities registered as service users by three local health authorities. (A 'service user' may be using any specialist learning disability health or social care facility with day, residential or therapeutic services). Of the 674 service users for whom surveys were returned, 47 were living in hospital, 396 were living in residential or group homes and 208 were living with relatives, or in their own homes. Eighteen subjects who had reported serious or repeated episodes of choking were interviewed in depth in their residences or workplaces. Responses were subjected to frequency analyses. Personal characteristics were analysed. Choking patterns were differentiated by food texture. Results. A total of 34% of questionnaires on 674 service users were returned; 42% of respondents reported one or more choking episodes. There was a significantly greater occurrence of choking among people with more severe learning disability, with Down syndrome, people who had an incomplete dentition or were taking a greater number of psychotropic drugs. Antisocial eating habits learnt in institutional settings presented an additional choking hazard for some individuals. Conclusion. Choking is a serious hazard for many adults with learning disabilities. This study establishes many of the characteristics associated with swallowing problems in this population. Clinicians and carers should benefit from awareness of these predictors, leading to better management of eating behaviours and habits. A choking and swallowing risk assessment should be included in routine health assessments of adults with learning disability, paying especial attention to the condition of a person's teeth; possible side effects from prescribed medication, and abnormal eating behaviour.     

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.     

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.     

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.     

Indicators of choking risk in adults with learning disabilities: A questionnaire survey and interview study

Purpose.?Feeding and swallowing impairments are key predictors of increased morbidity and mortality in adults with learning disabilities. This postal survey and interview study sought to identify risk factors in adults with learning disabilities who have histories of choking.

Method.?A total of 2000 questionnaires were sent to carers of all adults with learning disabilities registered as service users by three local health authorities. (A ‘service user’ may be using any specialist learning disability health or social care facility with day, residential or therapeutic services). Of the 674 service users for whom surveys were returned, 47 were living in hospital, 396 were living in residential or group homes and 208 were living with relatives, or in their own homes. Eighteen subjects who had reported serious or repeated episodes of choking were interviewed in depth in their residences or workplaces. Responses were subjected to frequency analyses. Personal characteristics were analysed. Choking patterns were differentiated by food texture.

Results.?A total of 34% of questionnaires on 674 service users were returned; 42% of respondents reported one or more choking episodes. There was a significantly greater occurrence of choking among people with more severe learning disability, with Down syndrome, people who had an incomplete dentition or were taking a greater number of psychotropic drugs. Antisocial eating habits learnt in institutional settings presented an additional choking hazard for some individuals.

Conclusion.?Choking is a serious hazard for many adults with learning disabilities. This study establishes many of the characteristics associated with swallowing problems in this population. Clinicians and carers should benefit from awareness of these predictors, leading to better management of eating behaviours and habits. A choking and swallowing risk assessment should be included in routine health assessments of adults with learning disability, paying especial attention to the condition of a person's teeth; possible side effects from prescribed medication, and abnormal eating behaviour.     

Learning disabilities within mental health services: are we adequately preparing nurses for the future?

Current government policy dictates that where possible patients who have learning disabilities should be cared for within the framework of ordinary generic national health services, with specialist provision kept to a minimum. The mental health care of this client group may be problematic and diagnostic overshadowing can occur because of complex physical, emotional and behavioural issues. If the government agenda is to be followed, this will have an impact on both the pre- and post-registration education of mental health nurses and therefore this must be addressed by the nursing regulatory bodies. There is also an argument for people who have a learning disability in addition to mental health problems to be considered a specialist group within generic mental health services as are other specific groups because of the complexity of their conditions.     

Attitudes of nurses in a general hospital towards people with learning disabilities: influences of contact, and graduate-non-graduate status, a comparative study

A review of the literature suggests people with learning disabilities are viewed negatively by others in society Such negative views have also been found among many health care professionals, including nurses This study measured the attitudes of a randomly selected sample of nurses in a general hospital (n=31) towards people with learning disabilities The study involved a triangulation approach utilizing a Likert scale attitude measurement questionnaire Two comparisons between subjects in the study were undertaken—a comparison of the attitudes of graduate nurses and those who were non-graduates, a comparison between nurses who had most contact, and those who had least contact with people who have learning disabilities From the sample of 31 nurses, 10 subjects were selected for more in-depth interviews which were tape recorded, transcribed and, using the process of 'content analysis', quantified
Findings suggest the attitudes held by the total sample towards people with learning disabilities were more negative than would be expected from those in a caring profession The graduate nurses were found to be more positive in their perceived attitudes towards people with learning disabilities than non-graduate nurses Nurses in the sample who had high contact were found to have more positive attitudes than nurses who had lower amounts of contact with people who had learning disabilities     

The needs of older people with learning disabilities

There has been a growing realization that the needs of older people with learning disabilities are not being met. There has been little attention paid in nursing literature to the needs of this client group. This article will explore the issues about older people with learning disabilities and highlight some of the important areas that learning disability nurses may need to address. It is evident that there needs to be more collaboration between a range of different services and professionals. Areas of good practice can be used in developing innovative and flexible services, which are client led. Learning disability nurses may need to update their skills and knowledge and develop a 'critical practice' approach to meet the many challenges that older people with learning disabilities may pose.     

Assessing health and rehabilitation needs of people with disabilities in Cameroon and India

Purpose: To assess the association between disability and serious health problems, and the access and uptake of health and rehabilitation services in Cameroon and India.

Methods: We undertook a population-based case–control study, nested within a survey in Fundong Health District, North West Cameroon (August–October 2013) and in Mahbubnagar District, Telangana State, India (February–April 2014). Disability was defined as the presence of self-reported difficulties in functioning or clinical impairments. One control without disability was selected per case, matched by age, gender and cluster. Information was collected using structured questionnaires on: socioeconomic status, health, access to health services and rehabilitation.

Results: Cases with disability were significantly more likely to report a serious health problem in the last year compared to controls in both India (OR?=?3.2, 95% CI 2.1–4.8) and Cameroon (OR?=?1.9, 1.4–2.7). The vast majority of people sought care when seriously ill, and this did not vary between cases and controls. Awareness and use of rehabilitation services was extremely low in both Cameroon and India.

Conclusions: Further focus is needed to improve awareness of rehabilitation services among people with disabilities in India and Cameroon to ensure that their rights are fulfilled and to achieve the goal of Universal Health Coverage.

• Implications for Rehabilitation

• People with and without disabilities equally seek health care in India and Cameroon.

• However, people with disabilities experience more frequent serious health problems than people without.

• Extremely few people with disabilities were aware of rehabilitation services despite their existence in the study settings.

     

People with learning disabilities admitted to an assessment and treatment unit: impact on challenging behaviours and mental health problems

This study describes the evaluation of an assessment and treatment unit for people with learning disabilities. Results showed the main reasons for admission for the 48 people admitted to the unit were because of challenging behaviours and mental health problems. Valid and reliable scales were used to measure the behaviours and mental health problems of those admitted across three-time periods: pre-admission, during admission and post-admission. The analysis found significant reductions in challenging behaviours and mental health problems following admission to the unit. The unit was staffed by a multidisciplinary team with nurses making up the largest group of staff. A number of issues of concern are discussed including access to mental health services for people with learning disabilities, the need for robust community services and areas that require further research. In conclusion, the study found evidence supporting the value of the unit and how it may lessen distress in learning disabled people who are behaviourally disturbed. It is suggested that nurses played a key role in the unit but they need to make the support and caring they provide more visible. Nurses need to harness and make explicit the caring they provide for people with learning disabilities.