From inequity to action: Co-producing equitable access to specialist epilepsy care for adults − findings and approach from the PROPEL project (UK)

Background Ensuring equitable access to specialist epilepsy care is a challenge globally. How inequities arise in high-income settings – and how they might be reduced without major new resources – remains poorly understood. PROPEL examined how inequities in ongoing adult epilepsy care emerged within an exemplar English epilepsy service and co-produced feasible service improvements. In doing so, PROPEL also provides a transferable framework for epilepsy service redesign. Methods An 18-month, multi-stage mixed-methods study. Six knowledge-exchange focus groups involving clinicians, administrators, people with epilepsy and significant others explored experiences of care and barriers to access. Findings informed iterative discussions by a six-member multidisciplinary panel which were refined through a subsequent mixed-stakeholder workshop. Data were analysed using rapid qualitative techniques. Results Across the initial focus groups involving 24 participants, stakeholders identified fragmented access pathways and inconsistent triage as contributors to delayed and inequitable specialist support. Access was perceived to depend partly on patients' ability to navigate complex systems rather than clinical need. Patient-Initiated Follow-Up (PIFU) – where patients request appointments when needed rather than receive scheduled follow-up appointments – was valued for its flexibility, but concerns remained regarding whether all patient groups knew when and how to seek help. Following 7 panel meetings and a stakeholder workshop involving 8 participants, two linked service modifications were co-produced: (1) a Single Point of Access to centralise and triage support requests; and (2) enhanced PIFU communication and safety-netting through clearer information and reminders. Conclusion Organisational complexity was identified as itself driving inequities in epilepsy care. This co-produced redesign identified practical stakeholder-supported changes intended to improve equity, responsiveness and patient navigation without substantial workforce expansion.