Thousands of dying people miss out on vital fast-tracked benefits
Special Rules for End of Life is an important mechanism in the benefits system designed to give people with a terminal illness fast-tracked access to vital financial support. But this qualitative study, the first to interview patients, caregivers and health care professionals about the issue, shows the system is failing too many dying people. Uncertainty about how long someone has left to live,…
Thousands of individuals battling terminal illnesses are being denied vital financial assistance due to flaws in the Special Rules for End of Life system, according to a new qualitative study. This groundbreaking research, the first to interview patients, caregivers, and healthcare professionals, reveals that uncertainty about prognosis, low awareness of the rules, difficulties discussing money matters, and practical barriers are preventing eligible people from receiving the support they need.
The study highlights that around 120,000 people in England and Wales who die each year are missing out on non-means-tested disability benefits under the Special Rules. This means that approximately one in three individuals with a terminal illness are not receiving the financial support they are entitled to, worth between £114 and £194 per week.
Amy Bassinder, whose father Neil missed out on Personal Independence Payment while living with terminal prostate cancer, shares the emotional toll of watching a loved one continue working despite severe pain and chemotherapy to make ends meet. "Families like ours need space to be together, not the fear and stress of fighting for financial help," she asserts.
Dr. Joanna Davies, a research fellow at the Cicely Saunders Institute, emphasizes that terminal illnesses can place significant financial pressure on households. Many healthcare professionals do an excellent job discussing finances and providing access to benefits through the Special Rules system, but barriers remain. These include prognostic uncertainty, low awareness, unclear clinical responsibility, discomfort discussing finances, and practical difficulties.
Dr. Sam Royston, executive director of research and policy at Marie Curie, stresses that nobody should spend their final days worrying about money. He notes that living with a terminal illness can lead to soaring household costs, such as higher energy bills, while many people and their loved ones are forced to reduce their hours or leave work altogether.
The Department for Work and Pensions has stated that there are no negative consequences for clinicians or patients if patients live longer than expected while claiming under the Special Rules. However, the study urges urgent action to ensure that more people can quickly access benefits when they need them most. This includes training and supporting healthcare professionals to make conversations about financial assistance routine care.
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