Personal Independence Payment (PIP) helps cover the extra daily living and mobility costs of having a disability. But how well does the system work for people with narcolepsy?
Researchers at the London School of Hygiene & Tropical Medicine, working with Narcolepsy UK, analysed Department for Work and Pensions statistics alongside anonymised data from Narcolepsy UK’s benefits advice service (2020–2023).
Around half of applicants with narcolepsy were awarded PIP at the first decision. But for those supported by Narcolepsy UK, the story didn’t end there: many went on to succeed at appeal or tribunal, and in the end only a minority were left without an award. Supported applicants also tended to receive higher-value awards at the initial stage.
The findings show two things: specialist advice matters, and it’s worth challenging a refusal. They also highlight a gap in the official statistics, which don’t capture what happens when people appeal.
This work was presented at the British Sleep Society [2025] meeting and published in BMJ Open Respiratory Research.
If you’re applying for PIP or challenging a decision, Narcolepsy UK’s benefits advice service can help. Contact info@narcolepsy.org.uk