This is what the cost of living crisis means for those with a terminal diagnosis | Helen Barnard
“I’ve had to heat up rice and put it in a pillowcase to keep patients warm.” These are the shocking words of Beth Namara, an end-of-life nurse.
And here’s Victor, who has terminal cancer and lost his job during the pandemic. “I haven’t got enough money, really, to live. I often borrow from loan sharks, for which you can borrow £20, pay back £40 – that sort of thing. I’ve had days where I’ve got no food in my cupboard.”
New research by Loughborough University, commissioned by the charity Marie Curie, throws fresh light on one of the least discussed impacts of rising poverty: the unnecessary pain and hardship it creates for people experiencing terminal illness.
Every year, more than 90,000 people experience poverty in the UK in the last year of their life. We also know that those reaching the end of their lives are far more likely to be trapped in poverty than those who are not, especially if they are of working age. The health impacts of grinding hardship increase the likelihood that people become ill and die early. But becoming ill or disabled also pulls people into poverty through the loss of work and higher costs such as specialist equipment, dietary supplements or heating. It is a vicious circle.
Every year, terminal care nurses go into homes and provide care and comfort for thousands of people with terminal illnesses. They see first-hand how poverty exacerbates the symptoms of illness, weakens the immune system and heightens the risk of more infections and a faster, more painful death.
What’s more, they see families suffering stress, pain and guilt because they are unable to keep their loved ones warm and comfortable in their final days. Many people on low incomes are trapped in homes that are cold, damp and mouldy – miserable for anyone, but especially dangerous for someone who has advanced cancer or chronic kidney disease. On average, energy bills double after a terminal diagnosis, due to the need for warmer environments. Four in 10 Marie Curie nurses say fuel poverty made their patients’ physical and mental health worse.
Food Foundation research shows that the number of adults in “food insecurity” jumped from 4.7m in January to 7.3m in April this year. Record numbers are turning to food banks and seeking debt advice from charities such as Citizens Advice. The Bank of England predicts inflation will reach 10% this year. Energy bills could rise by another £900 this autumn.
When we focus on those on benefits needing end-of-life care, the picture becomes starker: six in 10 people with a terminal diagnosis rely on benefits. These are manifestly failing to protect them from rising prices. After years of cuts and freezes, the government’s steadfast refusal to raise benefits to cover anything close to the actual cost of living effectively amounts to a £500 cut, according to estimates.
We must urgently provide more immediate help through the benefits system for those in this situation. But we also need to plan for the future – an ageing society and more people living with multiple health conditions. Demographic change is colliding with economic trends – low pay, insecure work, unaffordable housing – to trap more people in poverty. This is undermining our national resilience in the face of the global forces that are driving up prices.
We need to get people into more secure, better-paid jobs that will protect them from poverty, enable them to build up savings to help when illness strikes and reduce pressure on social security spending and public services.
We also have to grasp the housing nettle. Among pensioners, those still renting into old age are more than twice as likely to live in poverty than those who own their properties. Today’s new research finds a similar pattern – people ending their lives in private or social rented homes are much more likely to be doing so in poverty. Unless we change course millions of people are set to end their lives with few savings, little pension, paying high rent and living in a cold home that they can’t afford to heat or repair.
The pandemic revived our awareness of how important it is to end your life well, and for your loved ones to be able to care for you as you do. It’s simply wrong that poverty forces so many people to end their lives in unnecessary pain and hardship. That’s why Marie Curie has launched a petition calling for urgent government action to help people dying in poverty.