Title: Humanising the Healthcare Experiences of People with Learning Disabilities and/or Autism
Funder: Economic and Social Research Council

Abstract: To assume that the NHS is inherently humane, caring and healing ignores the fact that some people do not experience healthcare in these ways. This project responds to this uncomfortable truth by calling for a new approach to 'Humanising Healthcare' that identifies principles and practices of empathy, dignity, compassion, kindness and recognition with a specific focus on adults with learning disabilities and/or autism. Responding to the ESRC's priority call for 'innovation in health and social care', we have spent the last 18 months building a team of researchers with learning disabilities and/or autism, medical clinicians and social scientists. We propose a novel approach to co-production, fieldwork, analysis, impact and public engagement in which our researchers and clinicians draw upon new insights from medical humanities, disability studies, posthumanities and disability activism. There is an urgent need for our research. Recent scandals, inquiries and reports have revealed that healthcare threatens to render people with learning disabilities and/or autism as expendable and disposable. Previous research has evidenced a number of stubborn failings; including professional ignorance, indifference and diagnostic overshadowing (where underlying health conditions are missed and symptoms incorrectly attributed to learning disability/autism). Uptake of annual health checks and follow up appointments are low and there is evidence of inappropriate prescriptions of psychotropic drugs. Despite attempts to promote empowering, person-centred and holistic care practices, people with learning disabilities and/or autism continue to be dehumanised by healthcare. We address this problem through two AIMS: (1) To qualitatively investigate the cultures, conventions, systems, relationships and practices of a neurology service and a learning disability service through co-production, ethnography and narrative interviews. (2) To identify the ways in which two distinct services and their practitioners deliver humanising healthcare for people with learning disabilities and/or autism. And we will tackle these aims through six research OBJECTIVES: 1. Identify the key priorities and determinants of health of people with learning disabilities and/autism through a literature review of legislation, policy, clinical guidance and datasets. 2. Identify key theoretical resources from the medical humanities, disability studies, posthumanities and disability activism to conceptualise humanising healthcare. 3. Implement an investigation of the healthcare experiences of 30 people with learning disabilities and/or autism through 300 days of ethnographic research of the two services and 120 narrative interviews with patients, professionals and families/carers. 4. Analyse data from our ethnography and narrative interviews through the deployment of our theoretical resources. 5. Identify and share healthcare practices - including referrals, assessments, diagnoses, clinical judgements, investigations, treatments, service management, commissioning, medical training and continued professional development - that are under-pinned by humanising principles of empathy, compassion, dignity, kindness and recognition. 6. Increase public awareness of the healthcare realities and aspirations of people with learning disabilities and/or autism. Co-production workshops will help us address each objective. Humanising healthcare practices will be shared via a website, manifesto, toolkit, practitioner training materials, journal articles, conference presentations and co-production research resources produced in consultation with an experts-by-experience advisory board and clinical and practitioner expert group. Public engagement will be met through the curation of festivals, a digital exhibition, a social media campaign and podcast series. Our findings will be of interest to a wide community of practitioners, services, commissioners, patients and families.

Lay abstract: Scandals, inquiries and reports into Winterbourne View, Whorlton Hall, Mendip House, Slade House and Yew Trees Hospital have revealed the tragic consequences of dehumanising care for adults with learning disabilities and/or autism. Previous research has evidenced a number of stubborn problems within healthcare; including ignorance, indifference and diagnostic overshadowing on the part of professionals (where underlying health conditions such as constipation or epilepsy are missed and symptoms incorrectly attributed to learning disability/autism). Uptake of annual health checks, screening and follow up appointments are low and there is evidence of inappropriate prescriptions of psychotropic drugs. Despite previous attempts to promote empowering, person-centred and holistic care practices, many people with learning disabilities and/or autism are dehumanised by healthcare. Prior to the pandemic, people with learning disabilities and/or autism already died 20-30 years earlier than their non-disabled counterparts. By Autumn 2020, people so-labelled were six times more likely to die from the virus than the rest of the population. The human worth and value of people with learning disabilities and/or autism have been devalued by controversies associated with the Clinical Frailty Scale, healthcare rationing and the blanket deployment of 'Do Not Resuscitate' orders. The failure to prioritise care homes, a lack of access to PPE and testing, and changing vaccination guidance, risk rendering people with learning disabilities and/or autism as expendable and disposable. We believe that a new approach is needed; especially now, as we plan for recovery and renewal in a post-pandemic world. Therefore, we will develop the concept of 'Humanising Healthcare'; identifying principles and practices of empathy, dignity, compassion, kindness and recognition. We will investigate the cultures, conventions, systems, relationships and practices of a neurology service and a learning disability service. This will allow us to identify the ways in which these two distinct services and their practitioners deliver humanising healthcare. Our team of researchers with learning disabilities and/or autism, medical clinicians and social scientists have been meeting over the last 18 months to co-create this research project. First, we will write a literature review that captures the key priorities and determinants of health for people with learning disabilities and/autism. Second, we will identify ideas and concepts to understand humanising healthcare by reading medical humanities, disability studies, posthumanities and disability activism literature and discuss the merits of these ideas during co-production workshops. Third, we will implement an investigation of the healthcare experiences of 30 people with learning disabilities and/or autism through 300 days of observational research of a neurology service and a learning disability service and 120 narrative interviews with professionals, patients and family members. Fourth, we will analyse the observations and interviews, informed by co-production workshops and our theoretical resources. Fifth, we will identify healthcare practices - including referrals, assessments, diagnoses, clinical judgements, investigations, treatments, service management, commissioning, medical training and continued professional development - that are under-pinned by the principles of empathy, compassion, dignity, kindness and recognition. We will share these through a website, manifesto, healthcare toolkit, practitioner training materials, journal articles, conference presentations and co-production research resources, supported by an experts-by-experience advisory board and clinical and practitioner expert group. Finally, we will increase public awareness of the healthcare realities and aspirations of people with learning disabilities and/or autism through festivals, a digital exhibition, a social media campaign and podcast series

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH;NEUROLOGICAL