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

对温特伯恩景观、沃尔顿大厅、门迪普之家、斯莱德之家和紫杉医院的丑闻、调查和报道揭示了对有学习障碍和/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，冷漠和诊断阴影（其中潜在的健康状况，如便秘或癫痫被遗漏，症状被错误地归因于学习障碍/自闭症）。接受年度健康检查、筛查和随访的人数很少，有证据表明精神药物处方不当。尽管此前曾尝试推广赋权、以人为本和全面的护理做法，但许多有学习障碍和/或自闭症的人在医疗保健方面受到非人性化对待。在大流行病之前，有学习障碍和/或自闭症的人已经比非残疾人早死20-30年。到2020年秋季，被贴上这种标签的人死于这种病毒的可能性是其他人的六倍。由于与临床虚弱量表、医疗配给和“不复苏”命令的全面部署有关的争议，学习障碍和/或自闭症患者的人类价值和价值已经贬值。未能优先考虑护理之家，缺乏个人防护设备和检测，以及不断变化的疫苗接种指导，有可能使有学习障碍和/或自闭症的人成为消耗品和一次性用品。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;确定同情，尊严，同情，善良和认可的原则和实践。我们将调查的文化，公约，系统，关系和神经病学服务和学习障碍服务的做法。这将使我们能够确定这两种不同的服务及其从业人员提供人性化医疗保健的方式。我们的研究团队有学习障碍和/或自闭症，临床医生和社会科学家在过去的18个月里一直在开会，共同创建这个研究项目。首先，我们将写一篇文献综述，抓住学习障碍和自闭症患者健康的关键优先事项和决定因素。第二，我们将通过阅读医学人文、残疾研究、后人类学和残疾行动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期间讨论这些想法的优点。第三，我们将通过对神经病学服务和学习障碍服务进行为期300天的观察研究，并与专业人员、患者和家庭成员进行120次叙述式访谈，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，我们将分析观察和采访，通过共同制作的研讨会和我们的理论资源。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-这些都是以同理心，同情心，尊严，善良和认可为基础的原则。我们将通过一个网站，宣言，医疗保健工具包，从业者培训材料，期刊文章，会议演示文稿和共同生产的研究资源，由专家按经验咨询委员会和临床和从业者专家组的支持，分享这些。最后，我们将通过节日、数字展览、社交媒体活动和播客系列，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