- A new study from the University of Sheffield and Marie Curie estimates three quarters of a million people across the UK provide unpaid care to terminally ill loved ones every year
- Up to 15 per cent of household end of life carers are believed to be living in poverty, with this number doubling in the year following bereavement
- Caring for someone at the end of life can harm a caregiver's physical and mental wellbeing, and deal them with financial burden, as they may be forced to take unpaid leave, change jobs, or leave work entirely to cope with the demands of caring
Up to 762,000 people across the UK are providing unpaid care for someone living with a terminal illness every year, a report from the University of Sheffield and Marie Curie estimates.
The new report also reveals 13-15 per cent of end of life carers who live with the person they are caring for (at least 22,500) are believed to be living below the poverty line.
Alarmingly, this number sharply increases in the year following a bereavement (to 22 per cent-32 per cent, depending on the measure of poverty used) with funeral poverty, loss of benefits and pensions, housing insecurity and impacts on employment being considered as contributing factors.
The research was carried out by the University of Sheffield, University of Leeds and Loughborough University and provides the first ever UK population level estimate of the number of end of life carers.
Professor Clare Gardiner, Professor of Palliative Care at the University of Sheffield, said: "This research reinforces the hugely important role that unpaid carers play in supporting those at the end of life. And, whilst we have always known that caring has financial consequences, this is the first time that research has shown this financial burden persists into bereavement, pushing many carers into poverty at a time when they are already facing the significant challenges of grief and bereavement."
According to the report, the negative impacts on unpaid, end of life carers are overwhelming. Caring for someone at the end of life can harm a caregiver's physical and mental wellbeing, and deal them with financial burden, as they may be forced to take unpaid leave, change jobs, or leave work entirely to cope with the demands of caring.
Audrey Buckham, 64, from County Durham, cared for her husband of 37 years, Eddie, when he was diagnosed with pancreatic cancer. She said: “Before all of this, Eddie had a really good wage. I worked for the NHS full time, then went down to part time so I could look after him. He got PIP [Personal Independence Payment] and ESA [Employment and Support Allowance], and we had to both apply for Universal Credit, but because I was working, they took my wages off what he was getting, so he was only getting £39 a month.
“I didn't have enough money to pay all the bills, and the credit cards and things, so that’s when I had to declare myself bankrupt. I tried to not burden Eddie about money, but sometimes you have to because you have to talk about things. One morning I said to him, 'Eddie, I need to talk to you. We're having problems with money, and I'm going to have to declare myself bankrupt.'
“He got really upset and cried. Both of us cried together. Nearly three years on, I am still dealing with the consequences of going bankrupt. I have only now been able to get credit from some places to try and rebuild a good credit history.”
Marie Curie is urging the UK Government to extend Carers Allowance entitlement, from two months to six months after a bereavement. The charity is also calling on the UK Government to use its Employment Rights Bill to introduce a new statutory right to paid Carers Leave, to help unpaid carers balance their caring and employment responsibilities.
Additionally, Marie Curie is also proposing a State Pension-level of income guarantee for working-age people living with a terminal illness, to provide better financial support for them and their household at the end of life.
Dr Sam Royston, Executive Director for Research and Policy at Marie Curie, said: “This report highlights the harsh reality of those who give up so much to care for the people they love at the end of their lives. Not only does evidence consistently show that the presence of an unpaid carer leads to better experiences for people at the end of life, it also reduces costs and pressures on wider health and care services.”
