For the first time, the ONS has published data showing whether people with chronic illnesses are receiving all the benefits they are entitled to during their final year of life.
The new data shows that 34% of people who died from a chronic illness did not claim the non-means tested disability benefits they were entitled to under the 'Special Rules for End of Life'.
"Having a terminal illness puts pressure on household finances - benefits go some way to alleviate that - but 1 in 3 people are missing out on the non-means tested support available to them, worth between £110 and £187 each week. Not everyone will need financial support, but in the most deprived areas, after we adjusted for other factors, 34% of people did not claim the benefits they were entitled to. This suggests that lack of need for support is not the only factor driving the take-up deficit."
Dr Joanna Davies, Research Fellow from the Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation at King's College London
The research reveals wide variation in take-up by condition which was lowest for HIV (41%), liver disease (42%) and heart failure (54%), and highest for dementia (85%) and neurological conditions (90%).
Take-up rates also varied between local authorities, with the lowest take up in Wokingham (53%) and the highest in Merthyr Tydfil (78%). When other factors are accounted for, the analysis shows that 34% of people in the most deprived areas are not claiming the benefits they are entitled to.
Healthcare professionals provide access to these benefits under 'The Special Rule for End of Life' by completing an SR1 form. Dr Davies explains that they "do a fantastic job speaking to their patients about finances and providing this support. However, we need to raise awareness of this support and think about how the completion of SR1 forms could be incorporated into existing processes such as digital advance care planning or palliative care registers."
"The DWP are 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' - this is an important message because we know that some healthcare professionals worry about this.
"Our recent review of take-up initiatives for severely disabled people and those with serious, life-limiting illness found a real lack of proactive take-up work among stretched Local Authorities and voluntary and community groups. Proactive initiatives could improve take-up and should focus on the diagnosis groups and geographical areas with the lowest levels of take-up indicated in our study."
"Last year, Marie Curie's Dying in Poverty report revealed that more than 280 people die in poverty every day across the UK. Last year, Marie Curie's Dying in Poverty report revealed that more than 280 people die in poverty every day across the UK. A key step in addressing poverty at the end of life is to ensure the benefits system provides adequate protection to everyone who needs it. But this ONS research data, funded by Marie Curie, shows the extent to which people with a terminal illness are failing to be protected by our social security safety net. It's clear that further steps need to be taken so more people with a terminal illness are aware of, and able to easily access, the vital support that they need and are entitled to. Every dying person should be able to access the benefits they need, so they can spend their limited time focusing on what really matters: making memories with friends and family, and living their final months, weeks, and days as well as possible. I would urge anyone currently navigating the end of life benefits system to contact Marie Curie for support, via our free Support Line or web chat or to use our free online benefits calculator."
Dr Sam Royston, Executive Director of Research and Policy, at end of life charity Marie Curie
This analysis was completed as part of a wider project on benefit take-up towards the end of life led by King's College London and funded by end of life charity Marie Curie. The full report will be released in April.
