Terminally ill people face devastating and far reaching financial hardship and crippling debt because of a “made-up policy fudge” invented three decades ago, a report has claimed.
The inquiry report from the All Party Parliamentary Group (APPG) on Terminal Illness stated that the current benefits system rule that someone must only have six months or less to live to get fast access to benefits is outdated, arbitrary and not based on clinical reality.
Information uncovered during the inquiry shows that the current six-month rule definition of terminal illness, used extensively to determine how quickly someone gets access to benefits, was invented by politicians and has no clinical evidence to support its use.
The rule was introduced into the benefits system in 1990 to exempt terminally ill people from having to wait to qualify for Attendance Allowance, a specific benefit which could only be accessed if someone was ill for a minimum of six months.
However, the six-month timescale was then extended to other benefits over time and has become the benefits system’s definition of terminal illness by default.
Drew Hendry MP, chair of the All Party Parliamentary Group for Terminal Illness, warned that the current rules seriously restrict access to vital financial support for many terminally ill people, whose condition will never improve and only deteriorate until they die, but who may live for longer than six months.
“The policy is not only very hard on people living with terminal illnesses, it also causes a great deal of financial pressure and worry on their families at the very worst time in their lives,” he said.
The Brain Tumour Research said that on average families with a brain tumour patient are nearly £15,000 worse off a year. Similarly, the Motor Neurone Disease Association estimates the financial impact of living with MND is around £12,000 per year and Parkinson’s UK estimates people with Parkinson’s disease lose around £16,000 in income per year on average.
The APPG recommends the UK government scraps the six-month rule and adopts a new definition of terminal illness, based on a new law in Scotland that will allow clinicians to use their own judgment to certify if a person is terminally-ill, with no arbitrary time limit.
Matthew Reed, chief executive of Marie Curie, said the six-month rule is making terminally ill people’s lives a total misery, when they should be focused on living well for as long as they can.
“Whether somebody with a terminal illness has six months to live or longer, their needs are the same – it cannot be right to deny them access to the financial support they need based on a ‘made up policy fudge’ invented decades ago,” he added.