More than 17,000 people with terminal illnesses have been forced to apply for benefits through the government’s Universal Credit system, raising fears gravely sick people are resorting to foodbanks or dying before vital payments arrive.
The figures, obtained exclusively by HuffPost UK, show the sheer number of people having to navigate the government’s complex new welfare system when they are facing the end of their lives.
The data, released by the Department of Work and Pensions (DWP) under a Freedom of Information request, shows 17,000 people answered “yes” when asked: “Have you been diagnosed with a terminal illness” on the digital application form between 2016 and 2018.
Of the almost 2.2million who applied for Universal Credit online in the same period, 31,000 also ticked a box saying “Please call me to discuss terminal illness” in a section asking if they required a call-back from the DWP.
Charities have called for an urgent reform of the system, saying thousands of terminally ill people could be missing out on crucial funds.
They claim people with terminal conditions are experiencing significant distress due to difficulties and delays in the system, and in some cases sick people are being placed at risk of infection by having to attend Jobcentre appointments – or dying before they receive payments.
Susie Rabin, head of policy at the Motor Neurone Disease Association, said: “The fundamental thinking behind Universal Credit is it’s a benefit trying to get people back to work – that’s the whole driving ethos behind it.
“That means that as a system, it really does not work well for people who are dying from a terminal illness, and who are moving out of work and not moving into work.”
People with incurable illnesses told HuffPost UK of the difficulty they face completing the online application for Universal Credit, which has more than 100 screens of questions.
One mother-of-three from Kent was denied extra payments despite having a huge 7.5 stone tumour. The teacher has a colostomy bag, is on morphine, being treated with chemotherapy and has lost all her hair, yet did not qualify under the strict criteria used to define terminal illness.
“A painful, hard life is made worse by Universal Credit”
She says the DWP told her she was not eligible because her life expectancy was more than four months, even though a doctor had filled out a form confirming her terminal prognosis.
The woman, who asked to be named only as Mel to protect her privacy, said: “I have been blocked every way possible from claiming the relevant benefits. Many consultants don’t want to say ‘you only have six months to live’, particularly when you are 40 with three children.
“I was a teacher but I am now jobless and in considerable debt and have been turned down from the council food bank. I honestly feel desperate. There is no way out and I can’t even afford to attend my hospital appointments, including chemo. Benefit reform was not meant for me surely?
“A painful, hard life is made worse by Universal Credit.”
Mel was also affected by the five-week delay in payments, which has come under sustained criticism ever since Universal Credit was launched. According to charities, the delay is also affecting those who have doctors letters showing they have less than six months to live.
The government has denied terminally ill claimants are left without cash for five weeks, and says advances on payments are available. But many are reluctant to claim these, as they are essentially a form of debt and repayments are deducted from future Universal Credit payments.
Charities argue the benefits system is not set up to deal with the complicated nature of claims for people who are dying.
Currently, a person with a terminal condition can apply to be processed under a Special Rules scheme, which leads to their Universal Credit application being fast-tracked and the claimant potentially accessing higher payments.
But in order to qualify under these rules, a doctor must certify on a special DS1500 form that someone has “a reasonable expectation of death within six months”. This is a definition which charities argue is arcane and inflexible – and one which doctors are reluctant to apply because it is completely against the ethos of supporting patients through serious illness.
Those who do not qualify under this definition have to apply for Universal Credit through the standard process, which includes attending meetings with work coaches and actively job hunting in order to receive payments.
Madeleine Moon MP, who introduced a bill to parliament calling for quicker, more compassionate access to benefits for terminally ill people, said it was “beyond belief” dying people had to sit down and discuss career aspirations as part of the Universal Credit application process.
Caroline Hodgson, a Macmillan care worker specialising in palliative care, has seen the stress this places on clients, including one woman with advanced cancer she assisted last month.
“It took two-and-a-half hours to complete the online Universal Credit claim,” she said. “The patient was knackered at the end of this.
“A couple of weeks later she had a call from a work coach to ask what jobs she can do, despite the fact that she’s very ill. She already has a job, and is only not working because she can’t.
“She finds speaking on the phone difficult because she struggles to breathe and talk due to her cancer. When she asked the work coach if they could speak to her sister who was with her, they said they couldn’t. She said she found the whole process so distressing.”
Advocacy workers say people are unable to fill out the online forms due to debilitating symptoms, such as being unable to lift their arms, talk or breathe easily. Many struggle to attend Jobcentre appointments due to immobility, being hospitalised, or having no money to travel.
The figures obtained by HuffPost UK have placed renewed pressure on the government to tackle the inherent problems in the system. Charities including Macmillan Cancer Support, Marie Curie and the Motor Neurone Disease Association, called on the government to act urgently.
“The government must change the rules to make it easier for people to get support to apply for Universal Credit from friends, family or services like Macmillan,” said Tom Cottam, head of policy and influence at the cancer support charity.
“Home visits should be guaranteed for anyone who needs one, such as those with a terminal illness, and the five-week wait for the first [Universal Credit] payment should be removed, to avoid people with cancer being put at risk of debt and hardship.”
Fundamentally, critics say Universal Credit has left terminally ill people facing a huge burden of paperwork and administration at a time when they should be focusing on end of life care.
“They are consumed by bureaucracy when they should be spending their time with their family and loved ones,” said Scott Sinclair, head of policy and public affairs at Marie Curie.
Universal Credit was created to streamline the welfare system – and it is the first government service of its scale to be implemented through a digital-only system.
Since December 2018, the online system has been in full operation across the UK for all new claimants. But the model has led to fierce criticism that vulnerable groups, such as those with terminal illnesses, are being excluded or missing out on benefits due to difficulties with digital access.
Research carried out for the DWP, in the Universal Credit Full Service Survey, shows fewer than half (46%) of people with a long-term health condition are able to complete their Universal Credit claim in one attempt.
The DWP says it is reviewing how people with terminal illnesses are supported and is working with charities to do this. The department says people accepted under the Special Rules system can have the work-related requirement under Universal Credit waived.
“Terminal illness is devastating, and our priority is dealing with people’s claims quickly and compassionately,” a DWP spokeswoman said. “That’s why we guarantee entitlement to benefits, waive the need for face-to-face assessments and continue to work closely with charities to improve access to support.
“With Universal Credit no one has to wait five weeks to be paid as your first payment is available as an advance on day one. Additional digital support is available, home visits can be arranged and our Help to Claim partnership with Citizens Advice provides further tailored support.”
Mother With Huge Tumour ‘Not Ill Enough’ For Universal Credit
When mother-of-three Mel first applied for extra benefits support for the terminally ill, she was told she wasn’t dying quickly enough.
The decision left her falling further into poverty - after having to give up her career as secondary school teacher due to her debilitating ill health.
“I have really complex medical problems including a terminal diagnosis,” said Mel. “I have a very visible seven-and-a-half stone tumour and I’m receiving chemotherapy. I also have other medical problems and they’re well documented.”
She described the onerous process of applying to be registered as terminally ill under the benefits system.
“When you apply for Universal Credit, if you’re going to apply under the terminal illness rules, they ask you to get your consultant to fill in a DS1500 form,” she said. “They’re quite complex, about three or four pages going into your medical needs, which was done by the head of surgery treating me. But I was told it wasn’t good enough, that the terminal diagnosis she’d given me wasn’t terminal enough basically and it had to be under four months.
“Obviously if you get the highest rate disability payment with Universal Credit you get about an extra £300-and-something a month. So I lost probably £4,000 before they started paying it. They asked for the form and I provided the form and then they refused it anyway.”
Mel, who lives in Kent, worked as a secondary English teacher before Crohn’s disease and cancer forced her to give up work.
“From leaving teaching I’ve lost probably £1,500 a month,” she explained. “A couple of days ago I had a letter to say I’m being evicted. For me to go to hospital, all my appointments are in London, so that is near enough £50 to £100 a time. That’s without going to chemotherapy every six weeks in a hospital that isn’t in my town. It is so expensive. Sometimes I have to choose not to go because I can’t afford it.
“As it is, I’ve had to ring the foodbank on more than one occasion because I don’t have enough Universal Credit to live on. The last time I phoned about the food bank I had about £2 in the bank. I don’t even have enough money to feed anybody, and that’s so embarrassing. There just isn’t any money there.”
Mel believes the system is so obstructive the intention must be to deter terminally ill people from making claims. “Personally I think the process is designed so that more than half of people give up,” she said. “It is time consuming and sometimes you just don’t feel very equipped to deal with things.
“I wear a morphine patch, I’ve got a colostomy bag, I’ve got a walking stick a wheelchair. I’ve got this enormous big lump which is very visible. I lost all my hair. You just wouldn’t think for a minute she’s trying to swing the lead. And yet I still was told I didn’t qualify, so what do you want? But sometimes you run out of energy.”
She said the welfare system needs to be reformed to show more sensitivity and not treat terminal illness cases using a “one size fits all” system.
“It’s been soul destroying and I don’t say that lightly. It could have been so much easier at a time when a little bit of empathy would have gone a long way.”
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