Dying in Poverty: Navigating End-of-Life Support in the Benefits System was the focus of a powerful session delivered by Becca Stacey, Senior Policy Manager for Financial Security at Marie Curie, at the Universal Credit Conference 2026. Her presentation examined the financial reality facing many terminally ill people, the support available through Universal Credit and disability benefits, and why too many people still miss out on help when they need it most.
The session is now available to watch on demand as part of the Universal Credit Conference 2026 On Demand, offering valuable insight for welfare rights advisers, policymakers, healthcare professionals, local authorities and anyone supporting people at the end of life.
The Financial Shock of a Terminal Diagnosis
Becca Stacey began by setting out a stark but often overlooked issue: a terminal diagnosis can bring both a sudden drop in income and a sharp rise in costs. For many people, work becomes impossible or hours must be reduced. In some households, a partner or family member may also need to leave work or reduce hours to provide care.
At the same time, everyday costs do not stop. Rent or mortgage payments, bills and food costs continue, while new expenses can quickly appear. These may include higher energy bills due to medical equipment or needing to stay warm at home, increased transport costs for appointments, and care-related costs.
Drawing on Marie Curie’s Dying in Poverty work, produced in collaboration with Loughborough University, Stacey highlighted that more than 100,000 people die in poverty every year in the UK. In 2024, this equated to more than one in six people who died in the UK experiencing financial difficulty in their final period of life.
Dying in Poverty: Navigating End-of-Life Support in the Benefits System
A key part of the session focused on how the benefits system is designed to respond to terminal illness, particularly through the special rules for end of life. When working well, Stacey described this as one of the most effective parts of the social security system, because it can fast-track terminally ill people to vital financial support.
In England, Wales and Northern Ireland, a healthcare professional can complete an SR1 form when they would not be surprised if a patient died within 12 months. This form can then support a benefits application under the special rules for end of life.
The intended benefit of this route is that people do not have to go through the usual assessment process or wait long periods for a decision. Instead, applications can be processed more quickly, and people may be awarded higher rates of support without the same level of delay and uncertainty.
Why the SR1 Route Matters
For someone nearing the end of life, speed matters. Financial support is not simply about income; it can help people remain at home, manage essential costs, reduce stress and focus on time with loved ones. Stacey emphasised that no one who has received a terminal diagnosis should be spending their remaining time worrying about money or how their family will cope financially after they die.
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Why Terminally Ill People Still Miss Out
Despite the value of the special rules route, the session made clear that the system is not reaching everyone it should. Stacey referred to research commissioned by Marie Curie and conducted by King’s College London, known as the Take Up Study. This found that one in three people who died from an expected cause of death in England and Wales did not claim the benefits they were entitled to under special rules. That equates to 120,000 people each year.
This is not simply because people do not need support. Stacey noted that low take-up also appears in deprived areas, suggesting that people who could benefit financially are still being missed.
The 12-Month Prognosis Barrier
One major challenge is the 12-month prognosis requirement. Special rules are designed to identify people likely to be in the last year of life, not everyone living with a terminal condition. This means someone with an incurable illness who may live for 18 months, two years or longer may still be forced to use the normal benefits route.
Stacey illustrated this through a realistic scenario developed from Marie Curie’s clinical expertise. A person with advanced, incurable cancer may face significant pain, worsening symptoms and no prospect of recovery, but still not qualify for special rules if clinicians cannot say they would not be surprised if death occurred within 12 months.
Clinician Confidence and Awareness
Another issue is clinician confidence. Even where Department for Work and Pensions guidance allows some flexibility, healthcare professionals may feel uncertain about making a prognosis. This can be especially difficult for non-cancer conditions or cancers where disease progression is less predictable.
Stacey also explained that many patients are simply never told about the special rules route or the benefits they may be able to claim. In busy clinical settings, conversations about money can feel difficult, sensitive or outside a clinician’s usual role. Yet without those conversations, people can be left to navigate a complex system alone.
Working-Age People Face Particular Risks
The session also explored differences between working-age people and pensioners. Marie Curie’s research found that being in the last year of life is associated with a greater risk of poverty for both groups, but the risk is higher for working-age people.
Stacey was careful to stress that many pensioners also experience serious financial difficulty. However, the working-age benefits system often provides a less adequate safety net for people who are terminally ill. For example, Marie Curie’s research found that a working-age couple including someone with a terminal illness can receive nearly £500 less per month than a pension-age couple from the social security system.
What Needs to Change?
The session ended by looking at reform. Stacey highlighted an important success: the special rules prognosis threshold was extended from six months to 12 months in April 2023, following a multi-year campaign by Marie Curie and the Motor Neurone Disease Association. Research has indicated that this change helped more terminally ill people access support, particularly older adults and people with non-cancer diagnoses.
However, Stacey argued that further progress is needed. One area for consideration is whether prognosis should remain the central test for eligibility. Scotland has taken a different approach, using a more flexible definition of terminal illness that does not require death to be expected within a specific timeframe. Early insights suggest this may help more people access support more quickly.
Embedding Financial Conversations in Care
Policy reform is only part of the answer. Stacey also called for better awareness and training for clinicians, including routine prompts to consider whether a patient may be eligible for special rules. She pointed to the importance of embedding financial questions into palliative care registers, hospital discharge plans and advance care planning.
This practical shift could help ensure that financial support is not treated as an optional extra, but as part of holistic end-of-life care.
Making End-of-Life Support Easier to Access
The benefits system contains mechanisms that can help terminally ill people, but too many are still missing out because of eligibility rules, lack of awareness, delays and discomfort around discussing finances. If you want to watch this session, you can find it through the Universal Credit Conference 2026 On Demand.
For professionals supporting people at the end of life, the takeaway is clear: ask about money earlier, understand the special rules route, and help people access support before crisis point. For policymakers, the challenge is to build a system that recognises terminal illness with greater flexibility, speed and compassion. At the end of life, financial security should not be another burden for people and families to carry.
Marie Curie’s policy briefing on the Special Rules has also now been published – this builds on the Take Up Study research discussed above. There is an important mechanism within our social security system – the Special Rules for End of Life – which allows terminally ill people to quickly access social security support through a streamlined process.
“No-one should be worrying about their finances or fighting to get the social security support they vitally need at the end of their life.” – Marie Curie
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