Patient experience of living with benign essential blepharospasm

Background: The fundamental rights of people with benign essential blepharospasm (BEB) to access timely care and treatment is significantly challenged in the United Kingdom and across the world. The condition causes intermittent and sustained spasms, temporary blindness, facial contortion and social stigma which debilitates the lives of those affected. Patient feedback and personal observation as a specialist practitioner within an outpatient clinic suggest the care provided fails to meet individuals' needs at a time of acute relapse. In the absence of qualitative evidence, a systematic quality of life review was undertaken in relation to BEB care and treatment. Although people with BEB were shown to have poorer quality of life than healthy individuals, quantitative evidence with numerical scales fails to represent the lived experience of BEB. Retrospective to the findings of the current research, a metasynthesis of BEB care and treatment experience was examined through text and opinions from the UK, the United States of America (USA), Australia and Canada dystonia websites. This offered health professionals a model guide on how to improve services. Aim: The aim of this study is to explore the impact of BEB outpatient treatment and care on patients' lives. Method: The study data emerged from 10 individual interviews and one focus group discussion. It provided a deeper understanding of BEB lived experience. A lack of knowledge, visual, functional and psychological decline, namely the anxiety experienced from untimely care and treatment in an acute relapse. Qualitative assessment of the patient experience provided the means to give patients a voice to improve the service. This study offers a novel contribution - it bridges the gap between policy, theory and practice. Outcome: The service has been configured through electronic treatment records, NHS Attend Anywhere video severity assessment to improve access, greater community through focus group discussion, uniform practitioners' training, the introduction of more injectors and clinics to improve geographical disparity. The service is set to address delayed referral, communicating a list of BEB red flags to primary care.