Mental health support across the sight loss pathway: a qualitative exploration of eye care patients, optometrists, and ECLOS

Visual impairment ranges from normal vision to complete blindness and affects at least 1.1 billion people globally, with 36–43 million experiencing blindness and 217–295 million having moderate to severe visual impairment. The experience of becoming sight impaired or severely sight impaired is highly emotional and is associated with increased risks of depression, anxiety, and post-traumatic stress disorder. Prior research indicates that eye care patients may require mental health support at various points along the care pathway and that anxiety contributes to non-attendance at eye clinics. Although early support is recommended because patients may delay seeking help until crisis, the provision, accessibility, and quality of mental health support across the UK eye care pathway remains largely unknown. ECLOs may provide valuable support but are not universally available across clinics, and the extent of signposting by referring optometrists is unclear. This preliminary study aims to examine the perceived accessibility and quality of mental health support across the eye care pathway from the perspectives of eye care patients, referring optometrists, and ECLOs, with the goal of informing future research and policy.

The literature indicates strong associations between visual impairment and mental health conditions, including depression, anxiety, and PTSD. Anxiety has been identified as a driver of non-attendance at eye clinics. Early provision of support is advocated because many patients seek help only at crisis points. Mental health support modalities (emotional support, counselling, support groups, and primary/secondary care services) benefit wellbeing among people with visual impairment. ECLOs are reported to provide valuable support, yet their availability across the UK is inconsistent. The extent of mental health signposting by referring optometrists and the prioritization of eye-related diagnoses within mental health triage systems are not well understood. Prior work also suggests low rates of referral by ophthalmologists to mental health services and varying comfort in addressing psychological issues, indicating potential training needs.

Design: Qualitative study using semi-structured individual interviews with narrative synthesis. Participants: People with various eye conditions (including those registered as sight impaired or severely sight impaired and those without registration), Eye Clinic Liaison Officers (ECLOs), and referring optometrists. Recruitment: Purposive sampling via third-sector advertisements, re-contact of participants from prior eye-related research (with prior consent), word of mouth, and marketing leaflets. Ethics: Approved by Anglia Ruskin University School of Medicine Ethics Panel (MED-SREP-21-003); all participants provided informed consent including for publication of quotes. Data collection: Approximately 30-minute interviews conducted by a single researcher (MT) to minimize inter-rater variability. Patients were asked to describe their eye care journey (symptoms, referral, diagnosis, treatment, post-acute care) and access to mental health support; practitioners described the eye care pathway and areas for improvement with focus on mental health support. Data processing and analysis: Interviews were transcribed and independently checked (RD, MT). Two researchers (MT, RD) conducted analysis using NVivo (Version 12). Findings were synthesized through narrative analysis.

- Sample: 28 participants (results section): 18 patients with various eye conditions, 5 referring optometrists, and 5 ECLOs. - Three key themes emerged: (1) Emotional trauma of diagnosis for patients and families: patients reported feelings of abandonment and distress; familial impact was noted particularly in genetic conditions (e.g., LHON). (2) Lack of signposting and limited availability of mental health support: many patients reported never being offered mental health support or not being informed of available services; ECLOs and optometrists concurred that provision is insufficient. Some ECLOs faced constraints (e.g., lack of private space if not embedded in HES). (3) Points of need along the sight-loss pathway: patients emphasized need at diagnosis; ECLOs stressed support should be available throughout the journey due to fluctuating needs; optometrists had differing views, with some advocating for support in secondary care, others across primary and secondary care, and expressing need for training and clearer signposting pathways. - Positive impacts when support was available: ECLOs and peer support groups provided meaningful emotional benefit, helping some patients avoid despair. - Practice implications: Referring optometrists and other clinicians often do not signpost to mental health services; there is a need for better awareness, training, and integrated pathways for emotional support across the eye care pathway.

The study addressed the research question by revealing a consistent perception across patients, ECLOs, and optometrists that mental health support is insufficiently provided and poorly signposted across the eye care pathway. The emotional trauma at diagnosis underscores the need for timely, proactive support, aligning with prior evidence recommending early intervention. The findings suggest that responsibility for emotional support and signposting should be shared across the pathway—from referring optometrists and ophthalmology services to ECLOs and third-sector organizations—and delivered in accessible, understandable language. Training gaps were identified, with some optometrists unsure where to refer patients and evidence from prior studies indicating low referral rates by ophthalmologists to mental health services and limited comfort discussing psychological issues. Enhancing clinician training and embedding routine signposting could improve patient wellbeing, clinic engagement, and long-term adjustment to vision loss. Interventional studies testing systematic signposting and integrated emotional support at key points—including diagnosis and subsequent stages where needs may resurface—are warranted.

Referring optometrists and other clinicians should proactively recognize the mental health needs of people with eye conditions and be able to signpost to local and third-sector support at any point in the referral process. The study highlights the scarcity of mental health support along the sight-loss pathway and the importance of availability at diagnosis and throughout the patient journey. Larger, UK-wide research into referral practices and signposting is needed to inform improvements that safeguard patient wellbeing.