A terminally-ill woman was told by the Department for Work and Pensions (DWP) that she risked being charged with an “offence” and would lose part of her benefits if she used an insurance policy windfall to pay for her own funeral.
DWP bosses told Sue Smith that spending the £3, drug 700 in advance on her funeral would be seen as “deprivation of capital” – deliberately spending her savings in order to maintain entitlement to benefits.
Smith, from south Devon, had contacted DWP after being told about the £3,700 refund, because she wanted to be sure that she did not fall foul of any regulations if she spent the money on paying in advance for her funeral.
But when she approached DWP, and made it clear that she was terminally-ill, she was told that she could lose part of her employment and support allowance (ESA) payment – she has estimated that it could have cost her about £15 a week – and could even be seen as committing an “offence”.
Smith, who uses oxygen 24-hours-a-day, said she felt “threatened, hurt and distressed” by the warning, and was now at her “wit’s end”.
Smith said: “I expected them to agree that it was a good use of my own money.
“I could understand it if someone was given £100,000 from a lottery win or inheritance, blew it on a Ferrari, and then went back to DWP and said, ‘Sorry, I’m skint now, I want my benefits.’
“But this is not the case with me. Surely they need to rewrite the rules so there is clear provision to allow someone to pay to bury themselves once they are terminally-ill.”
Smith was told in May 2014 that she had between 12 and 18 months left to live, as a result of emphysema and other health conditions, and had an end-of-life care plan put in place by her local hospice, which involved making her will and funeral arrangements, and tidying her financial affairs.
She spent nine years with the Royal Navy, and then ran her own successful business for 15 years.
She became ill in 2001 after becoming injured in a chemical incident, but carried on working for another seven years.
Smith said: “If you can’t spend your own capital on your own burial, there is something seriously wrong with the regulations.
“I intend to fight on as best I can, but any little thing that causes anxiety and stress affects my breathing and tires me out more.”
After Disability News Service approached the department about her case, a DWP manager phoned Smith and told her that she could cash the cheque and spend it on her funeral.
Smith said she now wanted this position to be written into ESA regulations so that if someone is terminally-ill, they have “the automatic right to spend a lump sum within reason on their funeral”.
A DWP spokeswoman said: “Income-related ESA takes into account all of a claimant’s available capital, including any policies or assets that can be cashed in.
“This is to ensure that there is provision for those with limited funds of their own.
“A decision-maker looks at each case on its own merits to decide whether any capital asset should be taken into account. These decisions carry a right of appeal.”
She added later that Smith had been advised “in general terms” that if she went ahead with her plans “without seeking advice from DWP it may have an impact on her ESA claim”, and that paying for her funeral “could be considered deprivation of capital”.
She said that Smith was “given general advice and then provided with specific guidance on her individual circumstances”.
But when asked to clarify whether Smith was or was not originally told definitively that she could not use the money to pay for her funeral, and that to do so might be considered an offence, she declined to comment further.