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Introduction Personal Independence Payments (PIP) are UK benefits supporting disability-related daily living and mobility costs. For individuals with narcolepsy, a disabling neurological condition, robust data on PIP access is needed to inform clinical and patient support services amid policy changes. This study examines application patterns and award rates for people with narcolepsy.Methods We conducted a descriptive analysis using publicly available PIP statistics from Department for Work and Pensions (England and Wales, 01/2020–12/2023) and anonymised administrative data from NUK’s benefits advice service (01/2020–12/2023). PIP data included claims stratified by disability, covering entitlement decisions, award types, local authority, and success rates. NUK data captured applicant-level details including award dates, decision stages, PIP types, points and durations.Results PIP statistics reported 776 completed narcolepsy assessments but omitted total registration numbers. At the initial stage, 55.3% (n=429/768) received an award. From those (n=429), the most common awards were the ’enhanced award for mobility only’ (n=228, 53.1%; £64.50/week at 2022/2023 rates) followed by ‘enhanced daily living (DL) and enhanced mobility’ (n=91, 21.2%; £156.90/week).NUK provided data for 128 individuals, of whom 47.7% (n=61) were awarded PIP at the initial stage, 16.4% (n=21) at first appeal, 4.7% at pre-tribunal (n=6) and 28.1% (n=36) at final appeal/tribunal. Four applicants (3.1%) had their PIP application and appeal rejected. Most applicants received ‘standard DL and enhanced mobility award’ (36.1% at initial stage; 38.3% overall; £126.35/week) and ‘enhanced DL and enhanced mobility’ (34.4% at initial stage; 32.8% overall; £156.90).Discussion Around half of applicants were awarded PIP at the initial stage. NUK supported applicants were awarded greater financial support at the initial stage and were often successful at the first appeal or tribunal stage. Our findings demonstrate the benefits of NUK’s services and the need for more comprehensive PIP data covering all stages of the application process.