The House Article | No one should spend their final months fighting for financial support

4 min read12 min

When someone is living with a terminal illness, time becomes particularly precious. Their final weeks and days should be spent in dignity and comfort, with the people they love, not lost to paperwork and phone calls proving they are ill enough to receive essential benefits.

As Andy Burnham puts social care reform back at the centre of Westminster debate, he is right that palliative and end-of-life care urgently need fixing. The government’s promised Modern Service Framework for Palliative and End of Life Care should set out how the NHS delivers the right care, in the right place and at the right time. This ambition must include financial security, because people cannot die with dignity if they cannot afford to live safely and comfortably.

The Special Rules for End of Life are designed to give dying people quicker access to benefits without unnecessary assessments or delays. A terminal diagnosis can bring an income shock, as people may have to leave work while facing higher household costs, including heating and medical equipment. Fast-tracked benefits can help families to manage those pressures and support people to remain safely at home for as long as possible.

Yet the Special Rules are still failing to reach too many people they are supposed to protect. Research funded by Marie Curie and led by King’s College London found that, in England and Wales, more than one in three people who died from a chronic illness did not receive the disability benefits they were eligible for through this route, around 120,000 people each year. With more than 100,000 people dying in poverty annually across the UK, this cannot be dismissed as a narrow benefits problem. It is a moral failure spanning health, social care and welfare policy.

The research also helps to explain why people are missing out. Interviews with patients, carers and healthcare professionals found that uncertainty around prognosis and low awareness of the Special Rules can delay access, while discomfort discussing money and difficulties completing the relevant forms create further barriers.

For families already facing an extremely difficult time, missing out can mean being unable to heat their home or afford transport to appointments. It can make receiving care safely at home harder, even when that is where someone would like to be, while carers may feel forced to choose between taking time off work and paying household bills.

These problems are solvable, but they require coordinated action. The Department for Work and Pensions (DWP) should work with the Department of Health and Social Care and the NHS to make the Special Rules easier to understand and use. This should include raising awareness among clinicians, providing clearer guidance on Special Rules forms and embedding questions about financial hardship and eligibility into advance care planning, hospital discharge planning and GP palliative care registers, so people are offered help before reaching crisis point. The DWP should also collect better data on who completes the forms, consider expanding the group of approved clinicians who can confirm eligibility, such as hospice paramedics, and allow completion to be delegated once eligibility has been confirmed.

Ministers should also review the 12-month prognosis requirement used in England, Wales and Northern Ireland. Prognosis can be uncertain, particularly for conditions with less predictable trajectories, such as heart failure or HIV, both of which are linked to lower take-up under the Special Rules. Scotland has moved to a more flexible model without a fixed time limit, and the DWP should examine what can be learned from that approach.

Everyone deserves a good death, and dignity at the end of life cannot depend on whether a clinician knows about the relevant form or a family has the strength to keep chasing help. The government has accepted that terminally ill people should receive fast-tracked benefits; it must now deliver on that commitment before financial hardship adds to the distress of their final days.

Dr Sam Royston Executive Director of Research and Policy at Marie Curie