Making our voices heard: the “cost of dying crisis” can’t be ignored any longer

Marie Curie's shocking new report, Dying in Poverty 2024, reveals that more than 300 people are now dying in poverty every single day in the UK. But what can we do about it?

At Marie Curie, we've known for a long time that people who are diagnosed with a terminal illness are more likely to experience poverty. With the rising cost of living, we've all seen significant increases in our food and energy bills, but those at the end of life have been particularly hard hit. Our previous research found that 93,000 people died in poverty across the UK in 2019, and that number increased by 19% to 111,000 in 2023.

After a terminal diagnosis, many people incur unavoidable additional costs from day-to-day needs like transport and personal care. They may also need to pay out of pocket for home adaptations or specialist equipment. On top of this, people living with a terminal illness often have energy bills that are thousands of pounds higher than the average household, due to the extra heating and other utilities they may need to manage their symptoms. So when the cost of living increases, the cost of dying does too.

People who die before reaching retirement age are at an even higher risk of dying in poverty, while having to give up or reduce their paid work and rely on working-age benefits. But unlike the State Pension, which has increased in real terms in recent years thanks to the "triple lock", working-age benefits have been subject to a range of real-term cuts and freezes that have reduced their value considerably.

Simona's husband, David, died in June 2024 from a stage four glioblastoma, six months after he was diagnosed. She says: "David had to stop working straight away after his diagnosis, because he couldn't walk or move. And I had to stop work to be his full time carer. The amount of money we had through state benefits was barely enough to get us to the end of the month."

"His condition meant that he was constantly cold, so we had to keep the heating on all the time. We discussed this with our energy companies, and the only things they provided was an electric blanket and a discount of £200 – it wasn't enough.

"All the medical equipment David needed was electric. It really raised the cost of our energy bills, and I still have an outstanding bill of £5,000 from the energy company.

"When David was on oxygen towards the end of his life, I spoke to the provider as the oxygen machine needed to be on all the time. They told me they would refund the cost of running the equipment, and later I had a cheque through the post from them for £13."

No one should have to face their final days worrying about money or whether they can afford to heat their home. But the current benefits system falls short of meeting the additional costs many terminally ill people face, especially those who are below State Pension age.

Urgent action is needed, and with a new government elected on a manifesto that promised to "confront poverty" and "slash fuel poverty", it's time for us to make sure that the issues faced by terminally ill people and their loved ones can't be ignored any more.

That's why we're launching our new petition calling on the UK Government to:

Together, we can bring attention to the urgent need for change and show the UK Government that this is an issue they need to act on. And we're inviting our supporters to join us in asking Liz Kendall MP (Secretary of State for Work and Pensions) and Ed Miliband MP (Secretary of State for Energy Security and Net Zero) to use their roles in the Government to fix the cost of dying crisis.

If you or a loved one are affected by terminal illness, and are concerned about finances, we can help.

Our website has helpful information about the main state benefits and entitlements available to people who are ill or disabled. There's help for family and carers, and information on how to top up your benefits and have your needs assessed. Our free benefits calculator will also help you find out which benefits you can claim if you're affected by terminal illness.

You can contact the free and confidential Marie Curie Support Line for practical or clinical information and emotional support if you're living with or caring for someone who has a terminal illness, or have experienced a bereavement, whatever your situation. We have dedicated Energy Support Officers on hand, who can give you expert information on things like supplier-specific support, grants, and energy efficiency updates.

No one is turned away, so please do not hesitate calling if you need any kind of support. Call free on 0800 090 2309, book a call at a time that suits you or email us at support@mariecurie.org.uk

Nobody should die in poverty, and we're calling for change. Please sign our petition if you agree that the UK Government needs to fix the cost of dying crisis.