Terminally ill people are facing devastating financial hardship and crippling debt due to an “outdated benefit system” based on “fudged policy”, a new inquiry has found.
A damning report by the All-Party Parliamentary Group (APPG) on Terminal Illness has heavily criticised the divisive “six months to live rule” that prevents potentially thousands of sick and dying people accessing fast-track benefits.
The six-month rule, introduced into law 30 years ago, means terminally ill people expected to live longer than half a year are missing out on being able to have their benefits fast-tracked under a “special rules” system for terminal illness.
The inquiry by the cross-party committee of MPs found the current rule is “outdated, arbitrary and not based on clinical reality”.
In cases where patients were supported in their claims by doctors, assessors from the Department for Work and Pensions (DWP) with no first-hand knowledge of the case were challenging their judgments in a “wholly inappropriate way”, the report found.
And the department was criticised for processes that are “overly time-consuming, demeaning and insensitive”, with terminally ill people who were not found to qualify for the special rules required to undergo work-focused interviews as part of their Universal Credit claims.
Drew Hendry MP, chair of the APPG for Terminal Illness, said: “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.”
HuffPost UK has exclusively revealed at least 17,000 with terminal illnesses made claims for Universal Credit from 2016-2018, showing the potential scale of those affected by the policy.
The six month rule was introduced by government in 1990 in relation to specific benefits for terminally ill people.
But it has been “arbitrarily extended” to other benefits - such as Universal Credit and the disability benefit Personal Independence Payments (PIP) - to become the benefit system’s definition of terminal illness by default, the report by the committee of MPs found.
The group said it was ironic that, 30 years later, it has had “the unintended consequence of denying many more people the quick and easy “lifeline” they need”.
Charities said the current system was not fit for purpose and was making people’s lives a “total misery”.
One bereaved husband told the inquiry: “My wife was terminally ill for over three years – we effectively lost everything we ever worked for and I am now left with debts of over £20,000.”
Martine Adams, 28, from Barry in Wales, was diagnosed in January 2019 with a rare cancer of the central nervous system, the inquiry heard.
She said: “My life has changed dramatically, so drastically. I can’t be on my own with my children. I can’t do the normal things that I would have done, it hurts, I’m in too much pain.
“I can’t work, I’m not reliable enough, but I’m 28 and I don’t want to live the rest of my life on £600 a month.”
Like others, Adams has experienced significant difficulty in trying to access higher rate benefits due to the stringent six month rule.
“I remember ringing PIP, pressing the number for terminal - because I had been told it was terminal, and the lady on the phone said ‘Hello, have you got six months or less to live?’,” she said.
“I said no, and she said ‘Oh, well that’s what this is for.’ I remember questioning whether I was terminal, and I second guessed it. I spoke to my nurse and she said ‘Yes, it’s like Alzheimer’s, dementia, they are terminal illnesses, that’s what you’ve got’.
“I remember thinking it didn’t make any sense.”
Citizens Advice said one terminally-ill single mother forced to stop working due to her illness had fallen into £3,000 of rent arrears due to problems accessing Universal Credit and was forced to rely on friends and family to get by.
The APPG has recommended the UK government scrap the “six-month rule” and adopt 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.
A majority of GPs told the Royal College of General Practitioners that they would support this change, the report said.
It added that it was “greatly concerned” to learn that DWP officials were overturning and challenging clinicians’ judgments.
Researchers at the Marie Curie Palliative Care Research Department at University College London found that clinicians are frequently inaccurate when predicting how long those living with terminal illnesses will survive.
Doctors told the APPG it is “very difficult” to estimate how long someone with a non-cancer condition has to live.
And St Christopher’s Hospice said more and more time was being taken up by attempts to ascertain how long someone had left.
The APPG report also said that some doctors feared patients may be negatively impacted by learning they were expected to live less than half a year, and found evidence of a “generalised fear” of being held to account if a patient did live longer.
Nearly one third of GPs (31%) said they had never signed the form, known as the DS1500, which supports a claim under the fast-tracked benefits process.
Matthew Reed, chief executive of terminal illness charity Marie Curie, said: “The inquiry’s findings are clear – the current system is not fit for purpose and the six-month rule does not make sense.
“Yet, everyday it 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.”
The National Association of Welfare Rights Advisers said the DWP would often notify the claimant instead of the doctor if an application was rejected.
The APPG report said: “This practice is unjustifiable, gives lie to the DWP’s assertion that it treats the claims of terminally ill people with ‘the utmost sensitivity and care’, and should be discontinued immediately.”
Responding to the findings of the inquiry, a DWP spokesman said: “Terminal illness is devastating and our priority is dealing with people’s claims quickly and compassionately.
“That’s why terminally ill people can get their claims fast-tracked and access benefits without a face-to-face assessment. We’re looking at how we can improve our processes and in the meantime we continue to work with charities to help terminally ill people access the support they need.”