Cost of living is killing terminal patients early says charity

The rising cost of living is killing terminally ill patients early according to the end of life charity, Marie Curie.

A survey of its front-line staff, including Healthcare Assistants, Registered Nurses, Doctors, Social Workers and others who support terminally ill people in their own homes, has revealed the level of financial hardship facing patients at the end of their lives.

The charity is calling for:

• The UK Government to give all terminally ill people, regardless of age, early access to their State Pension to stop them falling into poverty after a terminal diagnosis.
• The Welsh Government to immediately provide targeted support to terminally ill people who are struggling with fuel bills and the costs of keeping warm and running vital medical equipment at home

Of the Marie Curie staff surveyed in Wales, the vast majority (94%), have cared for patients struggling financially, and more than three quarters (83%) said the situation was worse now compared to the previous winter.

The impact that poverty is having on patients’ physical health is severe, with 23% of Marie Curie Wales staff saying that financial insecurity hastened the deterioration of their patients’ conditions.

This finding from the survey is in-line with witness statements to a report on housing and fuel poverty from the All-Party Parliamentary Group on Terminal Illness, and data from National Energy Action, based on modelling from the World Health Organisation, that said cold homes caused over 4,000 excess winter deaths in England and Wales last year.

Stacey Morris, a Healthcare Assistant for Marie Curie in Carmarthenshire, who completed the survey, said:

“I’ve seen people worry about finances as they have to quit their jobs to care for their loved one.  So many people are needing help, but things are taking time with regards to benefits coming through or financial support with energy bills.  I’ve noticed water isn’t as hot as people are turning the water down, they’re turning off lights, closing curtains all the time to keep the heating in and living in as few rooms as possible.

“Money is the last think you would want anyone to worry about during coordinating end of life care for any loved one. It makes me think how many people will not get to have their final wish and pass away peacefully at home because their loved ones are worried about the cost of living.

“This isn’t the end of life that anyone would imagine for themselves, but the reality is that this could happen to any of us.  In this day and age it shouldn’t be happening, but the truth is some people are dying sooner because of the cost of living crisis.”

Rising energy bills were a big concern among respondents with 85% having seen patients struggling to afford their energy bills.

More than a third (34%) have seen patients struggle to afford running medical devices at home, with one Marie Curie Healthcare Assistant saying that a family she supports is worried about accepting a medical mattress that prevents pressure sores for their loved one because of the impact on their electricity bill.

Nearly all front-line Marie Curie staff (94%) reported that they were concerned about how their patients would keep their homes warm over winter and nearly two-thirds (64%) were ‘very concerned’.

Some staff reported having to sit with their coats on and under blankets while providing care because patients’ homes were so cold.

The survey also revealed some of the emotional impact that financial hardship has on patients and families at the end of life. Most Marie Curie staff ( 85%) had witnessed a negative impact on the mental health of their patients because of financial insecurity, with  45% saying it increased social isolation.

This survey from Marie Curie is part of its Dying in Poverty campaign, which found that one in every four people who dies in working age in the UK spends the last year of their lives in poverty.

The charity’s campaign highlights that added costs – travel to appointments, home adaptations and higher than average energy bills – spiral when you are given a terminal diagnosis.

This often coincides with having to give up work due to the illness, or to provide care to a loved one. All this combined with inadequate welfare support for dying people of working ages can cause terminally ill people to fall below the poverty line.

Natasha Wynne, Senior Policy Manager (Wales) at Marie Curie says:

“We know people with terminal illness are struggling right now but it was shocking to hear how widespread the problems are. Poverty at the end of life is having a devastating effect on patients’ quality of life in their final days. This is a time that should be comfortable, peaceful, and spent with family,  not consumed by money worries. We called on the UK Government to provide more support for dying people but the Spring Budget didn’t do enough to ease their worries.

“We need the Welsh Government to provide targeted support to terminally ill people who are struggling with fuel bills and the costs of keeping warm and running vital medical equipment at home. This would help to prevent people falling into poverty at the end of life and provide greater dignity and security in those final months, weeks and days.”