Humanising the Healthcare Experiences of People with Learning Disabilities and/or Autism

针对温特本山庄、沃顿音乐厅、门迪普之家、斯莱德之家和红豆杉医院的丑闻、调查和报道揭示了对患有学习障碍和/或自闭症的成年人进行非人性化护理的悲惨后果。以前的研究已经证明了医疗保健中的一些顽固问题；包括专业人员的无知、冷漠和诊断失误(即遗漏了便秘或癫痫等潜在健康状况，并错误地将症状归因于学习障碍/自闭症)。每年的健康检查、筛查和随访预约的接受率很低，而且有证据表明精神药物处方不当。尽管以前曾试图促进赋权、以人为本和整体护理做法，但许多患有学习障碍和/或自闭症的人被医疗保健剥夺了人性。在大流行之前，学习障碍和/或自闭症患者已经比非残疾患者早死亡20-30年。到2020年秋季，被贴上标签的人死于该病毒的可能性是其他人口的6倍。有学习障碍和/或自闭症的人的价值和价值已经被与临床脆弱程度量表、医疗配给和全面部署“不复苏”命令相关的争议所贬值。未能优先安排疗养院，无法获得个人防护用品和检测，以及改变疫苗接种指导，有可能使学习障碍和/或自闭症患者成为消耗性和一次性的。我们认为，需要一种新的方法；特别是现在，因为我们计划在大流行后的世界中恢复和更新。因此，我们将发展“人性化医疗”的概念；确定移情、尊严、同情心、善良和认可的原则和实践。我们将调查神经科服务和学习障碍服务的文化、惯例、制度、关系和做法。这将使我们能够确定这两种不同的服务及其从业者提供人性化医疗保健的方式。我们由患有学习障碍和/或自闭症的研究人员、医学临床医生和社会科学家组成的团队在过去的18个月里一直在开会共同创建这个研究项目。首先，我们将撰写一篇文献综述，介绍学习障碍和自闭症患者健康的关键优先事项和决定因素。其次，我们将通过阅读医学人文、残疾研究、遗体和残疾激进主义文献来确定理解人性化医疗保健的想法和概念，并在联合制作研讨会上讨论这些想法的优点。第三，我们将通过对神经科服务和学习障碍服务的300天观察性研究以及对专业人员、患者和家人的120次叙述性访谈，对30名学习障碍和/或自闭症患者的医疗保健经历进行调查。第四，我们将通过联合制作研讨会和我们的理论资源来分析观察和采访。第五，我们将确定医疗实践--包括转介、评估、诊断、临床判断、调查、治疗、服务管理、委托、医疗培训和持续专业发展--以同理心、同情心、尊严、善良和认可为原则。我们将通过网站、宣言、医疗保健工具包、从业者培训材料、期刊文章、会议演示文稿和联合制作研究资源来分享这些信息，并由一个逐经验的专家咨询委员会以及临床和从业者专家组提供支持。最后，我们将通过节日、数码展览、社交媒体运动和播客系列，提高公众对学习障碍和/或自闭症患者的医疗保健现实和愿望的认识

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