1 in 3 terminally ill people don’t claim benefits

One in three people living with a terminal illness in the most deprived areas of England and Wales aren’t claiming the Department for Work and Pensions (DWP) benefits they’re entitled to. This is despite the constant government and media narrative about the increase in benefit claimants.

DWP: many miss out on vital benefits

Terminally ill people with less than 12 months to live are eligible to receive fast-tracked benefits without a medical assessment. This is under the DWP Special Rules for End of Life (SREL). This applies to both non-means-tested and means-tested benefits, so it includes Personal Independence Payments, Disability Living Allowance, and Universal Credit.

However, new research shows that many are missing out

The Office for National Statistics has published a report with Marie Curie that explores the take-up of benefits from those living with a terminal illness. Although SREL applies to all benefits, the ONS specifically looked at means-tested benefits.

It found that over 350,000 people who were terminally ill did not claim the benefits they were entitled to in the last 12 months of their life. That’s around 34%. And the uptake is even worse in the more deprived areas of England and Wales. In Wokingham, the take-up was just 53%.

The claimant rate also varied significantly between different terminal conditions. 59% of people dying of HIV don’t claim. There’s also a huge portion of people living with liver disease (58%) and heart failure (46%) who didn’t claim. The highest conditions that were claimed for were dementia, with 85% claiming and neurological conditions, with 90% claiming.

Better access needed

The problem is that many don’t know that they are entitled to claim, so they miss out on vital support. The analysis was carried out as part of a broader study by King’s College London into the take-up of benefits by terminally ill people

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.

The study aims to find out how they can best uncover “groups most at risk of underclaiming” in order to make policy recommendations to the DWP on how to better target people.

In 2024, the KCL researchers reviewed the campaigns put out by the government, local authorities, and the non-profit sector carry out to encourage “severely disabled people and those with serious health conditions to apply for benefits.”

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”.

This report found that the government needs 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.

DWP failing terminally ill people

Dr Joanna Davies, from the Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation at King’s College London (KCL), told Hannah Sharland at Disability News Service that there needs to be a “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, also told Sharland:

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 continued:

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.

It’s clear that the government isn’t doing enough to ensure that sick people don’t die in poverty. At a time when all you hear about is the increased benefits bill, it’s almost like they’re banking on people not applying. At the rate it’s going, people will be offered assisted dying before support their final months.

I suppose it’s easier for the DWP if people die before they claim than for them to have to finish the job by cutting their benefits.

Featured image via the Canary