Widening Access to Palliative Care for People with Learning Disabilities

This publication represents an important step towards greater partnership by sharing some of the thinking, good practice and resources that have been developed throughout learning disability and end of life care services in a form that will be accessible to all practitioners but especially those in a hospice setting. It includes sections on the definition and incidence of learning disability, healthcare for people with learning disability, as well as a glossary and an extensive section on resources

An audit of the quality of inpatient care for adults with learning disability in the UK

OBJECTIVES: To audit patient hospital records to evaluate the performance of acute general and mental health services in delivering inpatient care to people with learning disability and explore the influence of organisational factors on the quality of care they deliver. SETTING: Nine acute general hospital Trusts and six mental health services. PARTICIPANTS: Adults with learning disability who received inpatient hospital care between May 2013 and April 2014. PRIMARY AND SECONDARY OUTCOME MEASURES: Data on seven key indicators of high-quality care were collected from 176 patients. These covered physical health/monitoring, communication and meeting needs, capacity and decision-making, discharge planning and carer involvement. The impact of services having an electronic system for flagging patients with learning disability and employing a learning disability liaison nurse was assessed. RESULTS: Indicators of physical healthcare (body mass index, swallowing assessment, epilepsy risk assessment) were poorly recorded in acute general and mental health inpatient settings. Overall, only 34 (19.3%) patients received any assessment of swallowing and 12 of the 57 with epilepsy (21.1%) had an epilepsy risk assessment. For most quality indicators, there was a non-statistically significant trend for improved performance in services with a learning disability liaison nurse. The presence of an electronic flagging system showed less evidence of benefit. CONCLUSIONS: Inpatient care for people with learning disability needs to be improved. The work gives tentative support to the role of a learning disability liaison nurse in acute general and mental health services, but further work is needed to confirm these benefits and to trial other interventions that might improve the quality and safety of care for this high-need group

Understanding research, consent and ethics: a participatory research methodology in a medium secure unit for men with a learning disability

People with learning disability have historically been the subjects or recipients of research, rather than participants or contributors. Whilst there is considerable literature on issues of informed consent, little is known about what people with learning disability understand about research, participation in research or how to facilitate understanding. Ways of facilitating consent have been offered by a number of studies (Fisher, 2003, Murphy and Clare, 1995, DeRenzo et al 1998) but these studies have not researched the effectiveness of such methods from the perspective of the participants. Understanding what is meant by research is fundamental to involving people with learning disabilities in research and to developing and maintaining informed consent (Gilbert, 2004). This study set out to discover how men with a learning disability living in a Medium Secure Unit understand research, consent and ethics and what enables them to learn about these concepts. Seven men and ten staff were invited to become co-researchers with two researchers from Northumbria University, over 20 months. Lessons learned from this study about research can now be used to educate other adults with learning disability concerning research, how it can be helpful, and how it can make a difference in the lives of people with learning disability

Theorising disability: a practical and representative ontology of learning disability

This article contributes to the ongoing development of the theorisation of learning disability, focusing on the value of the ontological turn. We argue that while social theory has influenced understandings of disability within academia, particularly within disability studies, it has had a limited impact on the discursive and practical use of the term ‘learning disability’. How ‘learning disability’ is constructed is of direct consequence to the lives of people with learning disabilities. Owing to this, we present a practical and representative ontology of learning disability in order to progress the ontological turn into everyday understandings of disability. To do this, disability theory is discussed, critically appraised and progressed. We then outline how this new theorisation could be re-contextualised within policy, with a view to further re-contextualisation into practice and the everyday. It is hoped that this article will spark discussion regarding how the ontological turn can be used for change

The use of therapeutic untruths by learning disability nursing students

Background: The use of therapeutic untruths raises a number of ethical issues, which have begun to be explored to some extent, particularly in dementia care services, where their use has been found to be high. Little is known, however, about their use by health professionals working in learning disability services. Research question: The study aimed to explore the frequency of use of therapeutic untruths by student learning disability nurses, and by their colleagues; how effective the students perceived them to be as a means of responding to behaviours that challenge; and their level of comfort with using them. Research design: A correlational design was used to gather data from an online version of the Best Interest Scale, adapted for a learning disability context. Participants were 30 learning disability student nurses (female = 28, ages 18–48 years, M = 26.8, standard deviation = 7.3) studying at a university in the North-East of England. Ethical considerations: The study was reviewed and received ethical approval from the first author’s university ethics committee. Findings: Overall, 96% of participants reported using therapeutic untruths. ‘Omission’ was the most frequently used type of therapeutic untruths, the most effective and the type that the students felt most comfortable using. Frequency of use of therapeutic untruths correlated significantly and positively with perceived effectiveness and the level of comfort that the students felt when using them, for all types of therapeutic untruths. Conclusion: The use of therapeutic untruths by the student nurses was consistent with that found in research in dementia care services in the United Kingdom and abroad. Further research to explore the generalisability of the results to the wider context of learning disability services is needed. The study highlights that there may be a need for more formal guidance and educational input to student nurses in the use of therapeutic untruths with people with a learning disability

Learning Disabilities and Serious Crime – Sex Offences

This review paper follows on from two previous reviews of the literature with regard to, firstly, learning disability and murder and, secondly, learning disability and arson. This paper, in turn, examines the relationship, if any, between learning disability and sexual offence. The approach taken in all these papers involves the concept of Disruptive Behaviour Disorder as being the group of behaviour and personality disorders most involved in the aetiology of these criminal and anti-social behaviours. Disruptive behaviour disorders (Read 2007) comprise: Oppositional Defiant Disorder Conduct Disorder Anti-social Personality Disorder Intermittent Explosive Disorder (DSM IVR 2001) The common characteristics of these disorders comprise aggression, irritability, over-activity, high arousal, and repetitive behaviour

Quality here, there and everywhere: the application of a multi-dimensional learning tool to learning disability health services

The following paper examines the applicability of Maxwell’s (1984) Multi-dimensional Quality Evaluation model to community learning disability health services. The model defines seven dimensions against which the quality of any given service can be measured. Effectiveness, Efficiency, Economy, Equity, Access to Services, Appropriateness and Social Acceptability. A number of examples in relation to community learning disability services are given and discussed

Futures planning, parental expectations and sibling concern for people who have a learning disability

The aim of this questionnaire was to explore the existence of future plans, parental expectation and sibling concern regarding people who have a learning disability. A questionnaire was sent via email to siblings of people who have a learning disability. 21 completed questionnaires were returned and responses were anaylsed using descriptive statistics and thematic analysis. A full discussion regarding sibling support was reported to have taken place by 12 (57%) of respondents, 7 (33%) stated this discussion had not taken place and 2 (9%) were unsure. 12 (57%) of participants reported no clear future plan however where a plan did exist, 7 (33%) of respondents claimed it was fully agreeable to both them and their parents. 11 (52%) of respondents reported no difference between their wishes regarding their future role and parental wishes. Key themes generated were; satisfaction with services, parental influence, sibling concern about the future, futures planning, the impact of the disabled person upon sibling lives and siblings needs. Further qualitative exploration into the personal wishes, reality and parental expectations for future support of siblings of adults who have a learning disability is required. Keywords: adult siblings, futures planning, learning disability, parental expectatio

Living in Sandwell: An Exploratory Study into the Key Issues and Challenges that Affect a Small Group of People with Mild Learning Disabilities

This paper is concerned with a small group of people with a mild learning disability; who they are and what their lives are like. This group is not typically known by the label of mild learning disability in research, social policy or in service provision, due to a lack of suitable assessment or identification methods. This small study, using focus groups as a data collection method and undertaken as a pilot study for further research, has shown this group experienced wide ranging social disadvantage, and difficulties and challenges in daily living due to their learning disability. These included travel, shopping, parenting, lack of IT skills, plus experiencing local anti-social behaviour on a regular basis. Lack of recognition and appropriate support can leave them vulnerable to a range of difficulties and issues including social isolation and harassment