‘Made-up policy fudge’ bringing significant financial hardship to terminally ill people

A “made-up policy fudge” is bringing significant financial hardship to terminally ill people struggling to access benefits, according to a report.

The Government’s definition of terminal illness as when a person’s death can be reasonably expected within six months is “outdated, arbitrary and not based on clinical reality”, the All-Party Parliamentary Group for Terminal Illness (APPG) said.

The six-month rule, introduced into law 30 years ago, means that terminally ill people expected to live longer than half a year are missing out on being able to have their benefits claims fast-tracked and simplified under special rules for terminal illness.

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, who set up the APPG in 2018, said: “Forcing somebody living with terminal illness to go through an intrusive face to-face assessment process is unfair and undignified – unbelievably, this can even include asking people with months to live to attend work capability assessments.

“This is to say nothing of the weeks-long delays and significant financial burdens families face getting the support they need if their doctor is unable to say with confidence that they will die within six months.”

The six-month rule was introduced in 1990 to exempt terminally ill people from the six-month qualifying period for the Attendance Allowance.

Since then, it has been extended to new benefits including Universal Credit and Personal Independence Payment.

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”.

Matthew Reed (pictured), chief executive of 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, every day 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.”

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.

They found that one in four cases saw doctors give inaccurate prognoses when using the question: “Would you be surprised if this patient died within the next x months?” as their approach.

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 process.

The report recommends that the Government scrap the six-month rule and adopt a new definition, based on incoming law in Scotland, allowing clinicians to use their own judgment to certify whether a patient is terminally ill.

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.

Out of 21 health professionals, 13 told the Motor Neurone Disease Association their prognosis had been challenged, while 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 group 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.”

A DWP spokeswoman 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.”

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