One in three terminally ill people in deprived areas aren’t claiming DWP benefits they’re entitled to at the end of life

A third of terminally ill people living in the most deprived parts of England and Wales are not claiming benefits they’re entitled to in the final 12 months of life.

Contrary to successive government and mainstream media narratives around the soaring numbers of benefit claimants, the new data backs up what many disabled activists have repeatedly warned: that the up-take of benefits is instead far lower than it should be.

In reality, many disabled individuals aren’t receiving the benefits they’re eligible for – as this new research once again proves in the context of terminally ill people.

On Friday (27 March), the Office for National Statistics (ONS) published the findings of a Marie Curie-funded research project exploring the take-up of benefits by those living with terminal illness.

Terminally ill people are eligible to access certain benefits faster, and without medical assessment, under the Department for Work and Pensions’s (DWP) Special Rules for End of Life (SREL).

Those who are likely to have less than 12 months to live can apply for DWP to fast-track their applications for particular benefits. This covers non-means-tested benefits like personal independence payment (PIP), attendance allowance (AA), and disability living allowance (DLA), as well as means-tested benefits such as universal credit and employment and support allowance (ESA).

The new research sheds light on the rates that benefits go unclaimed in the final year of life. The analysis specifically explored this for non-means-tested benefits.

It revealed that more than 350,000 – 34 per cent of terminally ill people in their final 12 months – did not claim the benefits they were eligible for.

Significantly, the research found that more than a third of terminally ill people in the 20 per cent most deprived neighbourhoods who would be entitled to non-means-tested benefits, had failed to claim them within the 12 months leading up to their death.

Dr Joanna Davies, from the Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation at King’s College London (KCL), who co-authored the research, said: “Benefits can help people meet some of the additional costs of serious illness and the ‘Special Rules for End of Life’ are set up to provide fast-tracked access to that support.

“We know from this analysis that 1 in 3 people are missing out on that support and some groups are more likely to miss out than others.”

Davies pointed out that the findings show how “lack of need for support is not the only factor driving the take-up deficit”.

Take-up rates also varied across different terminal illnesses. People living with HIV were least likely to claim – with 59 per cent failing to do so. Those living with liver disease and heart failure were also less likely to claim the benefits they were entitled to, at 58 per cent and 46 per cent respectively.

By contrast, people with neurological conditions and dementia were more likely to claim, with just 10 per cent and 15 per cent not doing so.

KCL researchers carried out the analysis as part of broader study into the take-up of benefits amid people living with terminal illness.

The study says: “Around 90,000 people die in poverty each year in the UK. Better access to benefits for people living with a terminal illness can help to lift people out of poverty and improve dignity.”

It adds: “We don’t know how many people living with a terminal illness miss out on benefits, but in the wider community, benefits often go unclaimed.”

The project aims to find out more about the demographics of terminally ill people who are missing out on the benefits available to them, and so uncover “groups most at risk of underclaiming” in order to make policy recommendations for interventions “that could improve take-up”.

A 2024 study the KCL researchers carried out reviewed the campaigns the government, local authorities, and non-profit sector have in place to encourage take-up among “severely disabled people and those with serious health conditions”.

The report from this previous research called on DWP to “develop and fund a comprehensive strategy for actively promoting and monitoring take-up of benefits by severely disabled people and people who have serious long-term health conditions (including those with life-limiting (terminal) illness), their families and carers”.

But Davies also highlighted healthcare professionals’ role in ensuring terminally ill people access the benefits they are entitled to.

She explained that they are the “gateway to these benefits” and noted that “clinicians already work hard” to help patients “complete these forms”.

However, she argued that there needs to be “wider awareness” around “access to benefits”, and suggested that applications “could be better integrated into other processes, such as advance care planning and hospital discharge”.

Dr Sam Royston, executive director of research and policy at end-of-life charity Marie Curie, said: “Last year, Marie Curie’s Dying in Poverty report revealed that more than 280 people die in poverty every day across the UK.

“A key step in addressing poverty at the end of life is to ensure the benefits system provides adequate protection to everyone who needs it. But this ONS research data, funded by Marie Curie, shows the extent to which people with a terminal illness are failing to be protected by our social security safety net.”

He added: “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.

“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.”

People nearing the end of life can contact Marie Curie’s free support line on 0800 090 2309 or use its web chat service. The charity provides a free online benefits calculator to help those navigating the benefit system towards the end of life.