Clark Sarah
Bournemouth University, Poole, UK.
J Patient Exp. 2025 Apr 15;12:23743735251333601. doi: 10.1177/23743735251333601. eCollection 2025.
Autistic individuals with hypermobile Ehlers-Danlos syndrome (hEDS) often face unique challenges navigating healthcare systems due to lack of clinician awareness, diagnostic delays, misdiagnoses, and systemic barriers. Drawing on my own lived experience within the UK's National Health Service (NHS), this patient perspective article integrates personal narratives with the research and literature, highlighting critical gaps in clinical care, offering practical recommendations to enhance equity and inclusion. improved clinician education on neurodivergence and overlapping conditions, improving holistic patient-centred communication, and collaborative care models that prioritise patient needs, learning from lived expertise.
患有高活动型埃勒斯-当洛综合征(hEDS)的自闭症患者在医疗系统中常常面临独特挑战,原因包括临床医生缺乏认识、诊断延误、误诊以及系统性障碍。基于我在英国国民医疗服务体系(NHS)中的亲身经历,这篇患者视角文章将个人叙述与研究及文献相结合,突出临床护理中的关键差距,提出增强公平性和包容性的实用建议。加强临床医生对神经发育差异和重叠病症的教育,改善以患者为中心的整体沟通,以及优先考虑患者需求的协作式护理模式,从实际经验中汲取知识。