{"title":"作为一个患有埃勒斯-丹洛斯综合征的自闭症个体,在医疗保健系统中导航的复杂性:一个病人的视角。","authors":"Sarah Clark","doi":"10.1177/23743735251333601","DOIUrl":null,"url":null,"abstract":"<p><p>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. <i>Recommendations include:</i> 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.</p>","PeriodicalId":45073,"journal":{"name":"Journal of Patient Experience","volume":"12 ","pages":"23743735251333601"},"PeriodicalIF":1.6000,"publicationDate":"2025-04-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033544/pdf/","citationCount":"0","resultStr":"{\"title\":\"The Complexities of Navigating the Healthcare System as an Autistic Individual with Ehlers-Danlos Syndrome: A Patient Perspective.\",\"authors\":\"Sarah Clark\",\"doi\":\"10.1177/23743735251333601\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>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. <i>Recommendations include:</i> 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.</p>\",\"PeriodicalId\":45073,\"journal\":{\"name\":\"Journal of Patient Experience\",\"volume\":\"12 \",\"pages\":\"23743735251333601\"},\"PeriodicalIF\":1.6000,\"publicationDate\":\"2025-04-15\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12033544/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Patient Experience\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1177/23743735251333601\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2025/1/1 0:00:00\",\"PubModel\":\"eCollection\",\"JCR\":\"Q3\",\"JCRName\":\"HEALTH CARE SCIENCES & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Patient Experience","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1177/23743735251333601","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/1/1 0:00:00","PubModel":"eCollection","JCR":"Q3","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
The Complexities of Navigating the Healthcare System as an Autistic Individual with Ehlers-Danlos Syndrome: A Patient Perspective.
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. Recommendations include: 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.