Revealed: Universal Credit Requires The Terminally Ill To Meet ‘Work Coaches’

Furious campaigners have accused the government of “cruelty” amid revelations that terminally ill people are assigned “work coaches” under Universal Credit.

The Department for Work and Pensions (DWP) has been forced to defend the situation, described as “outrageous” and “beyond the pale” by end of life charity Marie Curie.

SNP MP Drew Hendry is now leading calls for changes to the way Universal Credit handles the claims of terminally ill people.

It comes as campaigners told HuffPost UK that people with terminal illnesses such as cancer, motor neurone disease and dementia face a raft of “thoughtless” regulations under Universal Credit.

Charities say they’ve seen those with just weeks to live:

• suffer delays in payments so lengthy some claimants have died before receiving their entitlements;
• forced to confront distressing details of their medical condition, despite many not wishing to do so;
• required to meet officials, dubbed “work coaches”, whose role is to “challenge” and “motivate” claimants into work;
• and undergo “deeply humiliating and degrading” assessments.

The conditions could end up affecting many thousands of people by the time Universal Credit completes its roll out in 2022, though the number of terminally ill claimants is “relatively low”.

Unlike under previous so-called “legacy” benefits, Universal Credit does not have a team dedicated to helping the terminally ill.

The DWP said it ensures terminally ill claimants are handled “as quickly and sensitively as possible” and that work coaches adapt to an individual’s circumstances.

But Elaine Donnelly of the Highlands Macmillan Citizens Advice Partnership in Scotland, told HuffPost that she has advised terminally ill cancer patients who have been made to undertake face-to-face visits with a work coach as part of the process of signing up for Universal Credit.

‘Everyone has a work coach’

“Anybody undergoing cancer treatment will still be invited in to speak to a work coach because of the way the system is set up,” Donnelly said. “Everyone has a work coach.”

“The onus is on the client to prove they are clinically ill,” she added. “Sometimes they send somebody out to the house to check an ID, but sometimes a work coach will go along with them.

“They tend to, once they know [a claimant is terminally ill], kinda back off a bit.”

The main job role of a work coach has been described by MPs as “to support claimants into work by challenging, motivating, providing personalised advice and using knowledge of local labour markets.”

“It is remarkable,” Donnelly said.

“It’s almost like the government have forgotten that many people claiming Universal Credit are unwell or terminally ill,” she added.

“We’ve not seen one claim go well from start to finish.”

Jill Fennell, whose partner, Mark, applied for Universal Credit after a terminal diagnosis, described her encounter with a work coach.

“Mark subsequently found out he has to have a fitness to work telephone interview,” she wrote in an open letter which went viral on Facebook this year.

“I called the Universal Credit work coach to ask if she was aware he is terminally ill and has difficulty speaking as he has mouth cancer. She said she did, but said it still had to be done.

“I cannot think of any words that express my contempt for her callous and emotionally bankrupt approach to Mark’s predicament.”

Disability News Service reported last year on government proposals to force people with debilitating, lifelong conditions, including the terminally ill, into repeated contact with work coaches.

[Do you or someone you know receive Universal Credit? Share your experiences with our reporter at George.Bowden@huffpost.com]

Delays to payments

Donnelly said she has even advised clients who have died before any payments were made through Universal Credit.

“We’ve not seen anybody fast-tracked through for an earlier payment. In fact we’ve seen people who are terminally ill dying before their Universal Credit is processed,” she said.

“They’re in rent arrears and are dying thinking they are in rent arrears and it’s through no fault of their own.”

Drew Hendry, MP for Inverness who held a Commons debate on the issue this week, told HuffPost several of his own constituents had reported they were forced to understand every detail of their prognosis, even if they preferred not knowing.

A requirement for claimants to “self-certify” means that they must tell the DWP if they have received a terminal diagnosis.

Further rules governing “explicit consent” restrict the ability of relatives and advisors to handle benefits claims on their behalf, a change on previous systems.

Those rules mean a form called the “DS1500”, which estimates the likelihood that someone will live for six months or more, cannot be submitted on a claimant’s behalf by their doctor, forcing them to confront their own prognosis.

And, if it is likely someone will live beyond six months, their claim is not considered more quickly.

‘No special help’

“There are no special help facilities for terminally ill people,” Hendry said.

“It’s still not possible for health professionals to do everything that is required to get a diagnosis through the system,” he added. “The person claiming still needs to do something to get it through.”

And during his Commons debate on Wednesday, Hendry told MPs: “Those with severe and progressive conditions, including terminal illnesses, are all given work-focused interviews, which is clearly insensitive.”

He cited the example of a constituent, John, who was forced to conduct a capability assessment despite having a terminal diagnosis.

“When asked if he could walk 50 yards he said no, so he was asked again if he could do it and asked if it would be possible to do it even if it took a long time,” Hendry said.

“When again he said no, he was asked if it was an emergency and he absolutely had to walk 50 yards could he do it, at which point he felt so pressurised he said yes,” he added.

“The overview of the assessment said he could reasonably walk 50 yards, the assessment process is deeply humiliating and degrading, putting claimants in a position were they often feel bad about not being able to carry out certain tasks.”

Now Hendry is calling for changes to the system to help those most in need.

“A cruel condition like this can easily be overturned and replaced with something that gives terminally ill people dignity and respect,” he told HuffPost.

“We want to see the waiting time removed for terminally ill people, to make the process simpler for a terminally ill person, to allow implicit consent and to reinstate the severe disability allowance, which is a huge sum across the year.”

The additional costs of a terminal illness are estimated to be around £12,000 a year.

Simon Jones, head of policy and public affairs at terminal illness charity Marie Curie, told HuffPost that assigning work coaches to those who are terminally ill “imposes indignity”.

“It is clearly not appropriate for someone who has been clinically assessed that they are terminally ill to have a visit from someone who is going to help them back to work,” he said.

“You have been given what must be one of the most life-shattering pieces of news you can get, and then to impose the indignity on someone by even suggesting there is a route back to work in those circumstances is quite frankly outrageous, it’s beyond the pale.

“In those circumstances, all anyone should be thinking of is ‘what can we do to support this person to give them the best quality of life before they die’.”

Jones said that any delay to payments for those with less time left can have a real impact on quality of life.

“With motor neurone disease, the time between diagnosis and death is particularly quick and it affects younger people, which means it is more likely that benefits will help support your life, especially if you had been working,” he said.

‘People cannot afford to wait’

And Macmillan Cancer Support Head of Policy, Tom Cottam, said: “Everyone with cancer should have timely access to support when they need it, and this absolutely applies to Universal Credit.

“We know some people with terminal cancer are having difficulties accessing the benefits they are entitled to, and are concerned that there is a serious problem with the system.

“Many of these people cannot afford to wait and should not be put through any additional and unnecessary stress.”

Work and Pensions Minister Damian Hinds responded to Hendry’s Commons debate with a defence of the policy, describing individual examples of problems as being “unintended”.

A DWP spokesperson said: “We make sure terminally ill people receive support immediately. This includes helping people make their claim and ensuring it is handled as quickly and sensitively as possible.”

[Do you or someone you know receive Universal Credit? Share your experiences with our reporter at George.Bowden@huffpost.com]