'She didn't know what to do with me': the experience of seeking community mental health support after spinal cord injury

Context/Objectives: Adults with spinal cord injury in the UK do not currently have specialized access to SCI-informed community-based mental health support, despite their elevated risk of mental health decline. The lack of SCI-informed therapeutic support may increase the likelihood of mental health treatment failure. This study sought to qualitatively explore the experience of accessing, or attempting to access, generic (non-SCI-informed) mental health support when living with a spinal cord injury. Design: Qualitative, exploratory study using thematic analysis. Setting: Community-based sample in the UK. Participants: Twenty people with spinal cord injury (10 female, 10 male) were recruited from a UK-based, SCI-specific support charity. Interventions: Semi-structured interviews (mean length = 83 min, SD = 13.5 min). Outcome Measures: 9-item semi-structured interview schedule, addressing mental health service use. Results: Three themes were identified: (1) Therapeutic timeliness; (2) A disconnect with standard services; and (3) Successful systems for support. The inpatient-to-outpatient transition represents a critical time window during which mental health is vulnerable to decline, requiring responsive access to mental health services throughout the lifespan. The lack of tailored, SCI-informed mental health services inhibits therapeutic engagement and limits perceived treatment outcomes. Conclusions: Without SCI-informed care, generic mental health service referrals risk early termination of support and treatment disengagement. Mental health treatment withdrawal is initiated by both patients and their allocated healthcare professionals. This study demonstrates an evident need to develop programs for people with SCI to train as (peer) mental health practitioners, and to develop SCI-specific training modules for mental health care practitioners.