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 (...
Saved in:
| Main Author: | |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
SAGE Publishing
2025-04-01
|
| Series: | Journal of Patient Experience |
| Online Access: | https://doi.org/10.1177/23743735251333601 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1850184542490460160 |
|---|---|
| author | Sarah Clark |
| author_facet | Sarah Clark |
| author_sort | Sarah Clark |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-652f85b665aa4be2bac261e6027832fb |
| institution | OA Journals |
| issn | 2374-3743 |
| language | English |
| publishDate | 2025-04-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Journal of Patient Experience |
| spelling | doaj-art-652f85b665aa4be2bac261e6027832fb2025-08-20T02:17:00ZengSAGE PublishingJournal of Patient Experience2374-37432025-04-011210.1177/23743735251333601The Complexities of Navigating the Healthcare System as an Autistic Individual with Ehlers-Danlos Syndrome: A Patient PerspectiveSarah ClarkAutistic 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.https://doi.org/10.1177/23743735251333601 |
| spellingShingle | Sarah Clark The Complexities of Navigating the Healthcare System as an Autistic Individual with Ehlers-Danlos Syndrome: A Patient Perspective Journal of Patient Experience |
| title | The Complexities of Navigating the Healthcare System as an Autistic Individual with Ehlers-Danlos Syndrome: A Patient Perspective |
| title_full | The Complexities of Navigating the Healthcare System as an Autistic Individual with Ehlers-Danlos Syndrome: A Patient Perspective |
| title_fullStr | The Complexities of Navigating the Healthcare System as an Autistic Individual with Ehlers-Danlos Syndrome: A Patient Perspective |
| title_full_unstemmed | The Complexities of Navigating the Healthcare System as an Autistic Individual with Ehlers-Danlos Syndrome: A Patient Perspective |
| title_short | The Complexities of Navigating the Healthcare System as an Autistic Individual with Ehlers-Danlos Syndrome: A Patient Perspective |
| title_sort | complexities of navigating the healthcare system as an autistic individual with ehlers danlos syndrome a patient perspective |
| url | https://doi.org/10.1177/23743735251333601 |
| work_keys_str_mv | AT sarahclark thecomplexitiesofnavigatingthehealthcaresystemasanautisticindividualwithehlersdanlossyndromeapatientperspective AT sarahclark complexitiesofnavigatingthehealthcaresystemasanautisticindividualwithehlersdanlossyndromeapatientperspective |