Thousands of terminally ill people across the West Midlands are missing out on fast-tracked financial support.
The shortfall is due to barriers in the current benefits system, according to research funded by Marie Curie and led by King’s College London, which found that nearly one in three people in the West Midlands who died from a chronic illness did not receive disability benefits under the Special Rules for End of Life.
This equates to around 12,078 people each year who are not claiming support they are entitled to in their final year of life.
Dr Sam Royston, executive director of research and policy at Marie Curie, said: “Nobody should spend their final days worrying about money.
“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.”
The study, which interviewed patients, carers, and healthcare professionals, highlighted several issues with the current system.
These include uncertainty around prognosis, low awareness of the Special Rules, challenges discussing financial matters, and practical obstacles completing the SR1 form required to access fast-tracked benefits.
Healthcare professionals also reported a lack of clarity about who should discuss financial support with patients and families, and a lack of confidence in having money-related conversations.
Marie Curie is calling for improved awareness and training for healthcare professionals and for a broader group of clinicians, including hospice-employed paramedics, to be able to confirm eligibility for the Special Rules.
The charity is also urging the UK Government to consider removing the 12-month prognosis requirement in favour of a more flexible definition of terminal illness, similar to that used in Scotland.
Marie Curie provides free and confidential support through its support line, web chat, and online benefits calculator, which helps people understand what financial help they might be entitled to.
More information is available at mariecuire.org.uk/support or by calling 0800 090 2309.
