One in Three Dying People in England and Wales Miss Out on Benefits They Are Entitled To

Roughly 120,000 people each year in England and Wales die from a chronic illness without receiving disability benefits they were almost certainly entitled to claim, according to what researchers describe as the first population-based study anywhere to measure benefit take-up in the last year of life. The analysis, published in SSM – Population Health, linked death registrations, census records and government benefits data for more than one million people who died between May 2018 and April 2021, and found that only about 66 percent received a non-means-tested disability benefit during their final twelve months.

The United Kingdom operates a fast-track route, known as the Special Rules for End of Life, designed precisely to prevent this kind of shortfall. Under the rules, a doctor or specialist nurse completes a medical evidence form, the SR1, confirming that a patient is likely to be in the last year of life. That single signature removes the need for further functional assessments and expedites access to disability, unemployment and low-income benefits. Personal Independence Payment, worth up to £194.60 per week for working-age adults in 2026-7, and Attendance Allowance, worth up to £114.60 per week for those of state pension age, are non-means-tested, meaning income and assets are irrelevant to eligibility. Yet the new findings show that even with this deliberately simplified pathway, roughly one in three potentially eligible people never received the money.

The research team, led by Joanna M. Davies of the University of Kent with collaborators including palliative care researcher Katherine Sleeman and ONS data scientist Vahé Nafiliyan, constructed an observational retrospective cohort by linking Office for National Statistics death registrations to the 2011 and 2021 censuses and to the Department for Work and Pensions’ Benefit and Income Data Set. Of 1,690,146 deaths recorded over the three-year window, about 12 percent could not be linked across datasets and were excluded. The final study population comprised 1,049,493 people aged 16 and over who died from one of seven categories of chronic progressive illness, including cancer, dementia, heart failure, chronic respiratory disease, renal failure, liver disease and neurodegenerative conditions such as Parkinson’s and motor neurone disease. These are the diagnoses most likely to be recognisable by clinicians as marking the final year of life, and therefore the conditions under which Special Rules eligibility would be expected.

The headline figure conceals dramatic variation by cause of death. People who died with neurodegenerative diseases showed a take-up rate of nearly 90 percent, the highest of any group, while those who died with dementia reached about 75 percent after adjustment. At the other end of the spectrum, take-up among people who died from liver disease was just 44 percent, HIV 46 percent, and heart failure 52 percent. Cancer, the single largest diagnostic group at nearly 400,000 deaths, sat near the middle at roughly 62 percent. The researchers suggest the pattern reflects disease trajectories: dementia and neurodegenerative illness involve a long period of declining function, giving patients and families both greater need and more time to claim, whereas heart failure is characterised by episodic deterioration and an uncertain prognosis, and cancer often follows a shorter final decline.

Statistical modelling using Poisson regression with robust standard errors, adjusted for age modelled as a natural spline, sex, ethnicity, deprivation, education, language proficiency, region and cause of death, revealed a set of sociodemographic gradients that complicate simple narratives about who misses out. Women were more likely than men to receive benefits, with adjusted predicted take-up of about 64 percent versus 59 percent. Perhaps counterintuitively, take-up rose with deprivation: people in the most deprived quintile of neighbourhoods had an adjusted take-up rate of 66 percent, compared with 59 percent in the least deprived quintile. People with no formal qualifications and those with limited English or Welsh proficiency also claimed more often than their counterparts, findings the authors attribute partly to greater financial need and partly to the streamlined Special Rules application process lowering barriers for disadvantaged groups.

Ethnicity produced one of the study’s most striking results. When analysed in refined categories rather than a single aggregate minority grouping, most ethnic minority groups showed higher take-up than White British decedents, with Bangladeshi and Pakistani groups among the highest. However, after full adjustment, people of Chinese ethnicity had a significantly lower take-up rate of about 50 percent, and Black African decedents about 59 percent, compared with roughly 62 percent for White British people. The authors argue this demonstrates the importance of granular ethnicity data, noting that previous studies collapsing minority groups into one category would have missed these divergent patterns entirely.

Geography mattered as well. Age and sex standardised take-up rates across 329 local authorities ranged from 52.5 percent to 78.3 percent, with Wales and northern England generally outperforming southern England and London showing the lowest adjusted rate of any region at about 58 percent. Because take-up correlated positively with area deprivation, the researchers flagged seven local authorities, all in London or the South, where deprivation was high but take-up nonetheless lagged, including Haringey at 59 percent and Kensington and Chelsea at 56 percent. These areas, the team suggests, could be prioritised for proactive take-up initiatives.

The financial stakes are substantial. Attendance Allowance and Personal Independence Payment are worth up to roughly £5,960 and £10,120 per person per year respectively, and receipt of either can act as a gateway to means-tested support such as Universal Credit or Pension Credit. Living with terminal illness has been estimated to cost households up to £16,000 a year in lost income and extra expenses for heating, transport, equipment and care, and an estimated one in six people in the UK, some 111,000 annually, die in poverty. The authors caution that lack of need cannot explain the entire deficit: even in the most deprived neighbourhoods, the adjusted non-take-up rate was 34 percent, indicating that many people with clear financial vulnerability were still not receiving support.

Why does under-claiming persist when the administrative burden has been deliberately stripped away? The evidence points to barriers upstream of the application form itself. Healthcare professionals act as gatekeepers for the Special Rules, yet qualitative research cited in the paper shows that prognostic uncertainty, discomfort discussing finances, and worry about repercussions if a patient outlives the twelve-month estimate, despite official guidance that there are none, all deter clinicians from initiating the SR1 process. Patients and families meanwhile report delays, insensitive handling, stigma around claiming, and confusion about eligibility. A recent meta-analysis of field experiments found that interventions targeting informational and administrative barriers can raise take-up, but the new study demonstrates that removing administrative complexity alone is insufficient where awareness, professional support and prognostic confidence remain lacking.

The study has limitations the authors acknowledge. Cause of death is an imperfect proxy for recognisable terminal illness, some people die suddenly from chronic conditions before any claim is possible, and the dataset lacked diagnosis dates, comorbidity and symptom severity. The analysis also predates the 2022-2023 policy change that extended Special Rules eligibility from a six-month to a twelve-month prognosis, a reform the researchers say future work should evaluate using the same linkage methodology. Still, the paper establishes a replicable method for monitoring take-up in the last year of life, in the UK and in countries such as the United States, Canada and Australia that operate analogous fast-track provisions. With disability benefit spending rising and public finances constrained, the authors argue that understanding whether this financial support actually improves dignity, independence and outcomes at the end of life, including place of death and unplanned hospital admissions, should now be a research priority.

Subject of Research: Population-based study of take-up of non-means-tested disability benefits among people in the last year of life in England and Wales

Article Title: Benefit take-up in the last year of life: a population-based study using linked data for England and Wales

Article References: Benefit take-up in the last year of life: a population-based study using linked data for England and Wales. (n.d.). https://doi.org/10.1016/j.ssmph.2026.101986

Image Credits: AI Generated

DOI: 10.1016/j.ssmph.2026.101986

Keywords: end of life, benefit take-up, terminal illness, social security, palliative care, health inequalities, England and Wales, disability benefits, Special Rules, population health, administrative data, poverty