https://www.mariecurie.org.uk/media/press-releases/dying-people-benefits
Thousands of terminally ill people are missing out on fast-tracked access to vital financial support because of barriers in the benefits system, according to new research funded by end-of-life charity Marie Curie and led by researchers at King’s College London.
The 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, carers and healthcare professionals about the issue, shows the system is failing too many dying people. It found that uncertainty around prognosis, low awareness of the rules, difficulties discussing finances and practical barriers can all stop eligible people getting the help they need.
The research follows earlier findings that, in England and Wales, more than one in three people (34%) who died from a chronic illness did not receive the non-means-tested disability benefits they were entitled to under the Special Rules for End of Life, which equates to around 120,000 people who die each year missing out.
Amy Bassinder, 30, from Barnsley, whose father Neil was denied Personal Independence Payment (PIP) while living with terminal prostate cancer and only received support in the final weeks of his life before dying aged 63, said: “It was heartbreaking to watch my dad, who was my best friend, continue working as a self-employed plumber through terminal cancer because he felt he had no other choice.
“He was a proud and determined man who was still working as a plumber, gas and heating engineer, while in pain and going through chemotherapy, just to keep money coming in. No one nearing the end of life should have to live like that.
“Families like ours need space to be together, not the fear and stress of fighting for financial help. People with terminal illness deserve essential support they can rely on when they are at their most vulnerable.”
The research found that:
Healthcare professionals said uncertainty around prognosis can make it harder to identify eligible patients and complete SR1 forms, essential documentation which allows people to access fast-tracked benefits under the Special Rules for End of Life.
Clinicians highlighted low awareness of Special Rules, uncertainty about whose responsibility it is to discuss financial support with patients and families, and a lack of confidence discussing money matters.
Patients and carers described how benefits helped cover travel, equipment associated with their illness, and household bills, as well as supporting time spent with loved ones.
Benefit take-up varies by condition, from 44% among people with liver disease, 46% among people with HIV and 52% among people with heart failure, to 75% among people with dementia and 90% among people with neurodegenerative diseases, such as Parkinson’s.
Published alongside the findings, a new Marie Curie report recommends better awareness and training for healthcare professionals on the Special Rules system and allowing a wider range of clinicians to confirm eligibility, such as paramedics employed by hospices. It also calls on the UK Government to consider removing the current 12-month prognosis requirement and introduce a more flexible definition of terminal illness, following the approach taken in Scotland. The previous six-month rule was changed in April 2023 following Marie Curie’s successful Scrap Six Months campaign with the Motor Neurone Disease Association.
Further funding from the Impact Centre for Palliative and End-of-Life Care at King’s College London will enable KCL to offer 10-minute training sessions to healthcare professionals on the Special Rules over the next six months.