Idiopathic subglottic stenosis (iSGS) is a rare, progressive airway condition requiring lifelong management and recurrent interventions. Despite affecting breathing, communication and quality of life, evidence describing comprehensive multidisciplinary care beyond surgical management remains limited. This study explored institutional approaches and patient experiences of information provision by non-medical healthcare professionals across Northern England.

A convergent qualitative mixed-methods design integrated Freedom of Information (FoI) responses from five regional NHS trusts with semi-structured interviews from six women living with iSGS. Data was analysed thematically, comparing institutional responses with lived experiences, following COREQ and GRAMMS guidelines.

Disconnects emerged between the stated provision and patient reality. There was no description of emergency protocols despite its potentially life-threatening nature. All trusts reported providing verbal information, yet participants universally reported receiving nothing; therefore, they sought information online or through peer networks. Diagnostic delays ranged from months to years, with participants experiencing symptom dismissal or misattribution to anxiety. Despite universal nurse contact, no participants had access to specialist nurse services or received health promotion education. Essential self-management was learnt through peer networks rather than professional guidance. Follow-up was reactive and patient-initiated across the trusts, with stenosis monitoring quality varying among individual clinicians, creating a “consultant lottery”. Speech and Language therapy was incidental despite significant voice impacts. No participants were offered psychological support despite experiencing death anxiety and emotional exhaustion from constant self-advocacy.

The converged data revealed a consistent pattern: responsibility for self-monitoring & management, as well as escalation, was transferred to patients without providing education, coordination, or multidisciplinary support.  

The conclusion of this first UK study combining FoI and patient narratives identifies “responsibility without enablement” which highlights opportunities to strengthen rare disease care pathways through enhanced patient education, coordinated multidisciplinary support, and specialist nursing roles.

Dr Deborah Flynn is an Assistant Professor in Adult Nursing at Northumbria University and obtained her professional doctorate from Cardiff University, UK in 2018. Her research portfolio encompasses nursing education, student wellbeing, and healthcare equity, with particular focus on idiopathic subglottic stenosis, Generation Z student anxiety, unconscious bias, and humour in clinical settings. She co-coordinates innovative student support initiatives and publishes regularly in leading nursing journals.