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

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

A problem with inclusion in learning disability research.

People with severe learning disability are particularly difficult to include in the research process. As a result, researchers may be tempted to focus on those with learning disability who can be included. The problem is exacerbated in this field as the political agenda of inclusion and involvement is driven by those people with learning disability who are the higher functioning. To overcome this we should first detach the notion of consent from ideas about autonomy and think instead of it as a way to avoid wronging others; this fits the original historical use of consent in research. This allows us to think in terms of including participants to the best of their abilities rather than in terms of a threshold of autonomy. Researchers could then use imaginative ways to include the least able and to ensure they are not wronged in research or by exclusion from it

Parents with learning disabilities - the lived experience - a study for equal say, Glasgow

In order to more clearly identify the key issues with regard to parents with learning disabilities, Equal Say commissioned the Glasgow School of Social Work to undertake a small pilot study which aimed to: identify the likely demand for advocacy services to support parents with a learning disability living in the community, illustrate the lived experiences of parents with a learning disability and to highlight examples of good practice in terms of what works in supporting parents with a learning disability. A short survey questionnaire was sent to 94 relevant social work, health and voluntary sector organisations within Glasgow City. Five parents from within the Equal Say service who had the capacity to give informed consent were selected at random and interviewed to discuss a range of issues in relation to their parenting. Their experiences of being a parent were also discussed as were the range of support services and mechanisms in place to assist them with this role

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

Attracting psychologists to learning disability services: starting with assistants

Assistants employed in a split support worker/psychology assistant post rated the experience of working with people with a learning disability positively and as an opportunity to increase knowledge of clinical psychology theory and its direct application to practice. Drawbacks included role ambiguity