One in three terminally ill people miss out on benefits in the final year of their life

A third of people are missing out on benefits they are entitled to in the final year of their lives, stark new data has shown.

People diagnosed with a terminal illness and expected to live for less than 12 months are eligible for fast-tracked access to certain non-means-tested disability benefits.

But, for the first time, official Office for National Statistics figures show that 34% of those who die from a chronic illness do not claim this support.

Such unclaimed benefits are worth between £110 and £187 per week, per claimant, according to end-of-life charity Marie Curie.

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Experts say the findings expose serious gaps in the social security system.

Dr Sam Royston, executive director of research and policy at Marie Curie, said the data shows people with terminal illnesses are “failing to be protected by our social security safety net”.

“It’s clear that further steps need to be taken so more people with a terminal illness are aware of, and able to easily access, the vital support that they need and are entitled to,” he added.

“Every dying person should be able to access the benefits they need, so they can spend their limited time focusing on what really matters: making memories with friends and family, and living their final months, weeks, and days as well as possible.”

The analysis forms part of a wider research project on end-of-life benefit take-up led by King’s College London and funded by Marie Curie.

It reveals inequalities in benefit take-up depending on condition. Uptake was lowest among people dying from HIV (41%), liver disease (42%) and heart failure (54%), while it was highest among those with dementia (85%) and neurological conditions (90%).

Geography also plays a role. Take-up ranged from just 53% in Wokingham, Berkshire, to 78% in Merthyr Tydfil in Wales.

Not everyone living with terminal illness needs benefits – but a lack of need does not explain lagging take-up, researchers found.

Even after adjusting for other factors, 34% of people in the most deprived areas were still not claiming the support they were entitled to – the same proportion seen across the wider population.

Dr Joanna Davies, a research fellow at the Cicely Saunders Institute at King’s College London, said this suggests “lack of need for support is not the only factor driving the take-up deficit”.

Previous Big Issue reporting has highlighted how people nearing the end of life can face severe financial hardship, particularly if illness forces them to stop working suddenly or increases care costs.

For working age people in poverty at the end of life, almost three-quarters of their income comes from the benefits system, separate research by Marie Curie revealed last year – more than double the proportion for those not at the end of life. The same study found that more than 280 people die in poverty every day across the UK.

Anyone navigating the benefits system during a terminal illness can contact Marie Curie via its free support line, web chat, or online benefits calculator.

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