Up to 25,000 dying people could be over £2,000 worse off after benefit changes
Press release published
- Government's benefit reforms could see Universal Credit for seriously ill people fall by over £2,000 a year from April 2025
- Marie Curie calls for government to urgently set out protections for people living with terminal illness
Leading end of life charity Marie Curie warns nearly 25,000 dying people a year could be more than £2,000 worse off under the government's benefits reforms, even if they fall under the 'Special Rules' protections.
Universal Credit reforms published in a Green Paper last month would reduce the health-related part of Universal Credit by almost half for new claims. The Green Paper sets out no protections for people living with a terminal illness, even if they are eligible for the 'Special Rules for Terminal Illness' protections currently in place. The Special Rules allow people who are likely to have less than 12 months to live to get faster access to certain benefits, and higher benefit payments without undergoing lengthy medical assessments.
The new data was revealed in response to a question from Paulette Hamilton MP, co-chair of the APPG on Hospice and End of Life Care, which recently launched an inquiry into the additional costs of a terminal diagnosis.
"No one with a terminal illness should spend their final days battling financial hardship," she said. "Measures to help seriously ill and disabled people return to work must not inadvertently push terminally ill individuals, especially those relying on Universal Credit, deeper into poverty during the most vulnerable time of their lives.
"As part of our ongoing inquiry into the additional costs of terminal illness, the APPG will examine how to strengthen protections to ensure that everyone at the end of life has the financial security, compassion, and dignity they deserve."
These latest figures are in addition to more than 300 people dying every day in poverty in the UK, according to the charity's Dying in Poverty 2024 report, based on research conducted in partnership with Loughborough University.
"The last thing people facing a terminal condition need is even more worry about whether they can make ends meet," Jamie Thunder, Senior Policy Manager at Marie Curie, said.
"Government protections in place are already woefully insufficient. Rather than putting even more pressure on people already facing hardship, more needs to be done to ensure those dealing with terminal conditions can die with dignity, and spend their remaining days with their loved ones, rather than scrambling to keep the heating on.
"Ministers must urgently set out how terminally ill people will be protected, including dying people with longer prognoses or with rare conditions that are hard to predict."
The government proposal to amend benefits also comes after an FOI submitted by Marie Curie last year revealed that as many as 44,000 terminally ill pensioners across Great Britain will lose the Winter Fuel Payment. Due to government's changes to eligibility criteria, only those in receipt of means-tested benefits like Pension Credit are eligible for the Winter Fuel Payment, worth up to £300.
Marie Curie says the cost of powering at-home medical devices, having the heating on longer and higher to help with symptom management, along with a number of other expenses associated with terminal illness, can all add up to unsurmountable pressures for affected households.
As part of the Cost of Dying Campaign, Marie Curie is calling on the UK Government to introduce a social tariff to protect people living with a terminal illness from spiralling energy bills, and to make sure that all terminally ill people have enough income to live comfortably until the very end.
For support from Marie Curie, including a free benefits calculator or to speak to an Energy Support Officer, visit mariecurie.org.uk or call 0800 090 2309.
-ENDS -
Notes to editor
For more information please contact: Suzanne van Maurik at suzanne.vanmaurik@mariecurie.co.uk/ 07908 472719. Or contact the Marie Curie Press Office: media@mariecurie.org.uk / 0845 073 8699.
Notes to Editors
Read the full Dying in Poverty 2024 report here: www.mariecurie.org.uk/policy/poverty
*There are four years between datasets. The first report, Dying in Poverty, was based on data from 2019. The second, Dying in Poverty 2024, was based on data from 2023.
More about the Cost of Dying Campaign can be found here:
The cost of dying crisis | Marie Curie
Please note: Marie Curie is no longer called Marie Curie Cancer Care.
About Marie Curie:
• Marie Curie is the UK's leading end of life charity.
• The charity provides expert end of life care for people with any illness they are likely to die from, and support for their family and friends, in our hospices and where they live. It is the largest charity funder of palliative and end of life care research in the UK, and campaigns to ensure everyone has a good end of life experience. Whatever the illness, we're with you to the end.
• If you're living with a terminal illness or have been affected by dying, death and bereavement, Marie Curie can help. Visit mariecurie.org.uk or call the free Marie Curie Support Line on 0800 090 2309 or email support@mariecurie.org.uk
• Marie Curie have partnered with the UK Gas Distribution Networks to help give people with a terminal illness the support they need to cope with energy costs. Dedicated Energy Support Officers can provide information on support available from energy suppliers, grants and energy efficient updates. Visit www.mariecurie.org.uk/energy for more information.
Everybody living with a terminal illness should be able to spend the last months and days of their life focusing on what really matters: making memories with their loved ones.
Please sign the petition if you agree that the UK Government needs to fix the cost of dying crisis.
Marie Curie Campaigns
Whatever the illness, wherever you are, Marie Curie is with you to the end.
This table shows the total number of Universal Credit claimants who had a Limited Capability for Work and Work-Related Activity (LCWRA) award during 2024 broken down by the number with a LCWRA award under SREL and the number who died during the year.
LCWRA claimants in 2024 LCWRA claimants in 2024 under SREL
Total number 1,858,800 17,400
Number who died in 2024 24,100 5,900
Percentage who died in 2024 1.3% 34%
This is a selection of additional expenses associated with terminal illness:
• Heating needing to be on longer and higher to help with symptom management.
• Cooling (using a fan) to help with symptom management.
• Powering at home medical equipment.
• Increased rent - especially if you want to live in an accessible property (less than 10% of homes in England have basic accessibility features!), or a property with an extra bedroom. May also be willing to put up with rent increases to prevent having to move a terminally ill loved one.
• Home adaptations - e.g. stair lift, grab rails, access ramps, hospital style adjustable bed.
• Food - e.g. because a person may only be able to eat certain foods without choking, and/or because sickness and changing tastes means needing to buy more food than previously. May also need to buy food that is easy to prepare - e.g. ready meals or pre-made sandwiches, depending on the availability of care. May also need to have groceries delivered.
• Laundry - more time spent in bed + incontinence.
• Incontinence pads and/or briefs (typically need to be changed 4-6 times a day). If incontinent briefs are approx 75p each (based on a pack of 10 being £8.99), that's £21-£31.50 per week!
• Adaptive clothing - e.g. loose-fitting clothing to accommodate a catheter, easy fasten items.
• Travel to and from appointments - e.g. accessible vehicle + petrol + parking or accessible taxis. Obviously there are greater costs if you live further away from hospital/doctors, and/or if you need to go very regularly (e.g. some people who are on dialysis may need to spend 3-5 hours in hospital 3x a week).
• Childcare - nursery fees, after school clubs, holiday clubs needed if caregiver is unwell and cannot provide full time care (or if caregiver is caring for a terminally ill loved one)
How we've arrived at the figures
Today, someone with less than 12 months to live can get guaranteed access to extra money in Universal Credit, under the Special Rules for Terminal Illness. This extra is currently worth more than £400 a month. You can also get this extra money if you're considered too ill to work after a Work Capability Assessment.
For new claims from April 2026, government wants to slash this extra money by about 50% - so about £200 a month, or more than £2,000 a year. It says there will be some sort of 'premium' to protect people with the most severe illnesses/health conditions, but it hasn't said who will qualify or what this premium will be worth.
So at the moment there is no guarantee a) that people under the special rules will get this (unknown) protection, or b) people with a terminal illness not under the Special Rules get this protection. That second group is important - they could be people who have a longer prognosis, e.g. are likely to have 18 months to live, or just people with hard-to-predict conditions, including rare or poorly understood conditions.
Any groups that don't get this protection and make a new claim after April 2026 stand to be more than £2,000 a year worse off.