DWP is ‘penalising’ terminally ill people for ‘not dying fast enough’, campaigner warns

The government is pushing people into poverty for “not dying fast enough”, according to a campaigner who says terminally ill people are forced to spend their last days dealing with benefits red tape.

Mark Hughes, who was given six months to live in 2010 after a bone cancer diagnosis, is petitioning Westminster to fast-track the benefits claims of all terminally ill people.

Under current Department for Work and Pensions (DWP) policy, so-called special rules mean people in England, Wales and Northern Ireland with 12 months or less to live can access benefits faster, claim more money and avoid regular medical assessments.

People in Scotland with terminal diagnoses can claim financial assistance under the special rules regardless of the time-frame put on their condition.

But the 61-year-old says this still leaves thousands of terminally ill people struggling to navigate red tape and cover costs without the financial support they need – all based on predictions which are notoriously difficult for doctors to make, and which often have little correlation with someone’s care needs or ability to work.

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Two-thirds of people likely to die from their condition rely on benefits as their main source of income, according to research by end-of-life charity Marie Curie.

“The way this government treats terminally ill people is disgusting,” Hughes said. “It’s inhumane. Dying people and their families have got enough on their plates to deal with.

“To be told you are dying, then told you’re not dying fast enough for your time to be seen as valuable – it’s impossible. People are trying to come to terms with new prognoses while having to fill in form after form after form just in the hope of getting some financial support, knowing they might not receive it for months even if they’re successful.”

Doctors told Hughes, based in Great Wakering near Southend-on-Sea, that he had less than six months to live with a rare type of bone cancer in 2010. He was forced to quit the career he loved as a long-distance lorry driver. It meant he and wife Jane urgently needed to claim benefits to replace their lost income, finding the process “maddening” at what was already a devastating time for his family.

After spending weeks trying to fill in the “War and Peace” forms they’d received from the DWP, it was only after securing the help of an adviser from cancer support charity MacMillan that Hughes was able to submit a benefits claim and he was awarded full PIP (personal independence payment).

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Shortly after, however, he received his private pension – worth £35,000 – and his benefits were halved. People with more than £16,000 in savings are ineligible for most benefits, according to DWP policy. The department sent someone from their fraud team to Hughes’ home unannounced, who asked him if he could do things for himself such as washing and eating.

Based on his answers, his benefits were subsequently stopped entirely. “You’re penalised for being honest about what terminal illness can look like,” Hughes said.

His payments were partly reinstated upon appeal and he was told he wouldn’t be contacted again until 2025. But in 2018, he received application forms to apply for other benefits, including employment and support allowance, in the post without explanation.

Hughes contacted the DWP who told him not to fill it in. Feeling wary after the ordeal of applying the first time, he and his wife decided to fill them in anyway – but his benefits suddenly stopped before they even got started on the forms.

No reason was ever given for his payments being cut entirely. His PIP payments were, again, partly reinstated only after Hughes submitted the forms the DWP had told him not to fill in.

Doctors have since removed the six-month life expectancy on his diagnosis, but Hughes says he feels his condition worsening – pain and fatigue stopping him from being as active as he wants to be and making it difficult to do the things he loves, like gardening.

Hughes was part of the campaign to extend the special rules policy to people given 12 months or less to live, which was previously only applicable to people told they had six months or less. The government eventually conceded and implemented the change in 2022.

Marie Curie and the MND (Motor Neurone Disease) Association led the campaign, and their success means “more dying people can concentrate on making the most of the limited time they have left, rather than worrying about their finances”, said Mark Jackson, senior policy manager for Marie Curie. “But there is always more to be done.”

Terminally ill people can need financial assistance from the DWP for a multitude of reasons, Jackson explained, from having to give up work to needing to heat their home more than usual due to their condition, or paying for medical equipment and the energy they use. Families also often have to leave jobs to care for loved ones, placing even more financial pressure on households at an already vulnerable time.

The charity’s own research showed that around 90,000 people are dying in poverty in the UK each year, with people who die in working age twice as likely to spend their final year of life struggling to make ends meet compared to people of pension age.

That’s why the organisation is also pushing for everyone with a terminal diagnosis to gain access to their state pension, regardless of age, estimating this would cost around £114m per year – just 0.1% of the UK’s annual state pension bill. Most people who die while of working age have already paid more than 23 years of national insurance, according to the charity.

It’s “unfinished business” as long as some terminally ill people are being treated differently, as far as Hughes is concerned. He’s spreading awareness on Twitter and working to get 100,000 signatures on his petition which would see the issue of benefits for terminally ill people debated in parliament.

People with a condition they are likely to die from simply “do not have the time or capacity to be fighting for what they deserve”, said Jackson.

“There are still people across the UK, with a terminal illness, who will be jumping through hoops to get them and their families the support they need. Our systems must be better at meeting people’s needs quickly.”

A DWP spokesperson told The Big Issue: “We understand how difficult and life-altering a terminal diagnosis can be, and our priority is providing people with financial support quickly and compassionately.

“That is why we have ensured that those sadly nearing the end of their lives can already get fast-track access to a range of benefits without needing a face-to-face assessment or waiting period, with the majority receiving the highest rate of those benefits,” they said, adding that the government is committed to keeping the state pension age universal.

“In 2022 we have gone further and extended that support so thousands more people nearing end of life would be able to access benefits earlier through special benefit rules.”

Ill and disabled people are frequently made to feel “invisible” in society, Hughes said. He believes the government’s treatment of them reflects able-bodied attitudes that sickness is a distant prospect impacting others but not themselves, making it difficult to build movements for improved rights.

“People who haven’t experienced it think it won’t affect them, but it’s an issue that should be of concern to everyone,” he said. “It can affect you, it can affect your family and your friends, because terminal illness can creep up at any time.”

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