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.
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. Uncertainty about how long someone has left to live, low awareness of the rules, difficulties talking about money and practical barriers can all stop eligible people getting the support they need.
The research follows earlier findings that more than one in three people (34%) in England and Wales 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. This means that around 120,000 people who die each year are missing out on this support.
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."
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
Research findings
- Healthcare professionals said uncertainty around prognosis can make it harder to identify eligible patients and complete SR1 forms. This essential documentation 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.
- 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.
- 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.
Dr Joanna Davies, Research Fellow from the Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation at King's College London said:
"Having a terminal illness can place significant pressure on household finances, and for many people these benefits provide a vital source of support, worth between £114 and £194 each week.
"Our research shows that around 1 in 3 people miss out on this support. Many healthcare professionals do a fantastic job speaking to their patients about finances and providing access to this support through the Special Rules system, but we know there are barriers, some of which could be addressed with policy changes.
"The Department for Work and Pensions is clear that there are no negative consequences for the clinician or patient if a patient who claims under the Special Rules lives longer than expected, which is an important message, because we know that some healthcare professionals worry about this.
"We hope these findings help to raise awareness of the support available, and the challenges people face, to ensure more people can quickly access the help available to them when they need it most."
Dr Sam Royston, Marie Curie Executive Director of Research and Policy, said:
"Nobody should spend their final days worrying about money. Living with a terminal illness can lead to soaring household costs, including higher energy bills, while many people and their loved ones are forced to reduce their hours or leave work altogether.
"Our research shows that more than 280 people died in poverty every day across the UK last year, many of them let down by a benefits system that should be there to support them.
"The Department for Work and Pensions must urgently ensure people at the end of life can quickly access benefits through the Special Rules including by ensuring a wider range of clinicians can confirm eligibility for this, while healthcare professionals also need the training, support and resources required to make conversations about financial support a routine part of care.
"Everyone deserves a good death, spending the time they have left living as well as possible with the people they love, not worrying about money or fighting for the support they are entitled to."
Marie Curie recommendations
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 and physician associates. 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.
Bite size training for healthcare professionals
Further funding from the Impact Centre for Palliative and End-of-Life Care at King's College London will enable King's College London to offer 10-minute training sessions to healthcare professionals on the Special Rules over the next six months.
