Facilitating Healthcare Access for Adults with Learning Disabilities : The Challenges and Experiences of Community Support Workers in England, the United Kingdom

Sitali, Clement and Swarbrick, Caroline and Holland, Paula (2026) Facilitating Healthcare Access for Adults with Learning Disabilities : The Challenges and Experiences of Community Support Workers in England, the United Kingdom. PhD thesis, Lancaster University.

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Abstract

People with learning disabilities (PWLDs) suffer disproportionately higher levels of morbidity and mortality in comparison with the non-disabled population in the United Kingdom. Despite the improved longevity in the rest of the population in recent decades, the lives of men and women with learning disabilities are still shorter than those of non-disabled people. In addition, when PWLDs seek access to healthcare, they face healthcare systems that do not readily accommodate their specific and varied impairments. Most PWLDs access healthcare with the support of other people such as paid carers. Supported access to healthcare facilities brings with it unique challenges and opportunities for PWLDs and those who support them. Among these challenges is the capacity to communicate healthcare needs to healthcare providers. The aim of this study is to explore the experiences and challenges of community support workers (CSWs) as they facilitate healthcare access for PWLDs. This aim is achieved in two ways. Firstly, the challenges and facilitators that CSWs experience when they facilitate access to healthcare for PWLDs are identified. Secondly, the role of CSWs in the coordination of healthcare needs for PWLDs is examined. The aim and the objectives are underpinned by the research question: How do community support workers construct the challenges and experiences they encounter in facilitating healthcare access for people with learning disabilities? This is a qualitative study using Critical Realism (CR) as its theoretical approach in conjunction with the Social Model of Disability (SMD). The two approaches are used in tandem to complement each other. A literature review was conducted to identify the role of CSWs in the facilitation of healthcare access for PWLDs. The review identified a gap in the literature regarding the unique barriers and facilitators to healthcare for PWLDs from the perspective of CSWs. However, the review’s contribution is in the use of CR and SMD in the identification of structural issues which act either as enablers or hindrances in the facilitation of healthcare. In addition, the review situates the role of CSWs as communicators, advocates, ardent learners and collaborators of healthcare access for PWLDs. The key findings of this study are: the CSWs were assertive and proactive in ensuring the provision of reasonable adjustments for PWLDs; healthcare provision by healthcare providers can be an obstacle to healthcare access for PWLDs; CSWs’ were willing to be assertive in advocating for PWLDs; CSWs were aware of their roles in health care facilitation; CSWs were willing to collaborate with other agencies; CSWS were effective communicators with health care providers; additionally, CSWs were able to identify their own staffing and training needs as well as those of health care providers. This study highlights the vital role of CSWs in the facilitation of healthcare access for PWLDs. CSWs bring to their role skills in advocacy, collaboration, and assertiveness. Beside enablers, the study has highlighted serious barriers to healthcare access and facilitation such as CSWs’ lack of skills in early identification of signs of ill-health. In addition, the lack of awareness of key legislation such as the Mental Capacity Act (2005) in some HCPs remains an obstacle to both access and facilitation for PWLDs and CSWs respectively.