People who rely on disability benefits fear future claimants will be pushed into poverty once the Government’s “unfair” welfare reforms kick in. Labour is tightening eligibility for personal independence payments (PIP) so that new applicants must score four points in at least one category, such as cooking, dressing and washing. Current PIP claimants told The i Paper they are “relieved” that a backbench Labour rebellion sparked a U-turn which means they will not be affected by the four-point rule. However, they said the benefit payments are barely enough to pay for the cost of their disability – condemning the “two-tier” system which could see some future PIP applicants receive less or no money at all. They explained exactly where their disability benefit money goes, and why they are still worried about Labour’s review of PIP assessment tests. Phoebe Day, 36-year-old from Hampshire, has relapsing-remitting multiple sclerosis (MS), which means periods of worsening symptoms followed by periods of recovery. She struggles with “terrible fatigue” as well as anxiety and depression. She gets around £600 every four weeks in PIP. However, Day estimates that her disabilities can cost her at least £700 a month. (Photo: MS Society)

'PIP is not simply pocket money'

Day works four days a week as a partnership manager for a charity. She spends around £200 on taxis a month since she struggles with public transport. She spends another £300 on counselling to manager her anxiety and depression, an extra £100 on pre-prepared food since she struggles to cook, and another £100 on incontinence pads. “There is this misconception that PIP is pocket money – it couldn’t be further from the truth,” she said. “We’re not going on 5-star holidays. PIP provides a drop of hope and stability for someone like me. Thanks to PIP I can stay in work,” she added. “Without PIP I would be forced to try to work full-time, which would plunge me into further illness. So I’d likely be completely out of work and it would cost the government and NHS more.”

Recent government U-turns 'bittersweet'

The charity worker said the recent U-turns by Sir Keir Starmer were “bittersweet”. She said it was “disgusting” that the four-point rule change will “still make it much harder for disabled people in future”. “It’s bizarre to put us in different silos – it’s horrifying,” added Day. “More disabled people will be plunged into poverty in future. I’m so disappointed in Labour.” (Photo: Stefan Rousseau/PA)

'Living with epilepsy costs £700 a month'

Murray Goulder – who has a form of epilepsy that gives him dozens of seizures a month – also gets around £600 every four weeks in PIP. The 45-year-old from West Sussex estimates that living with his disability costs at least £700 a month. Goulder, who works full-time for Royal Mail, spends between £400 to £450 a month on taxis, mostly to get to and from work. Goulder also spends £100 on medications, and another £150 extra on pre-prepared food since he cannot use a cooker. He is also paying off more than £100 a month after spending around £7,000 of his own money on adaptions to his bathroom. “It feels like everything costs a bit more when you’re living with a disability,” said Goulder. “Whether it’s going through more clothes because they get ripped during one of my falls, or on more cutlery, like the sporks [adaptive spoons with forks] I have to buy.” Goulder describes the recent U-turn by the Government as “a relief”. But he added: “It’s definitely unfair on new claimants. It’s going to be hard for some people to get those four points,” he added. “I don’t see how they would get by on less [than the PIP sums he receives].”

On the maximum PIP amount

Maria Fuccio, a 68-year-old who lives alone in Hampshire, gets the maximum PIP amount of around £750 every four weeks. But she estimates that her health problems can cost between £750 and £950 to manage a month. The former social worker has joint hypermobility syndrome, causing pain and regular dislocations of her joints. She also has chronic fatigue syndrome and hereditary liver disease, which creates inflammation problems. Fuccio sometimes goes to a food bank when she cannot afford enough for her shopping. She worries this will become the norm for younger disabled people. “I feel worse off than in years gone by,” said the pensioner. “The food and electricity bills have gone up so much. There’s been a lot of repairs on the house. So even with PIP and my state pension it is not quite enough to get by.” She estimates that she spends anywhere between £300 and £500 a month on taxi journeys, with a journey to hospital for regular appointments costing up to £60. Fuccio spends around £250 on her cleaner, who helps her manage the house. And she £100 a month on extra food to keep her healthy and £100 for supplements to help her liver. “It’s dreadful for young people if they need help in the future – I don’t know how they’ll manage. It’s wrong that they will find it harder [to get PIP],” said the pensioner. She added: “It’s so difficult to trust them [the Government] now. It’s still hard to believe they went after the most vulnerable section of society.”

A PIP review 'fit for the future'?

Labour’s disability minister Sir Stephen Timms (pictured) is leading a reviewed aimed at reforming the PIP assessment process. The Government has said the exercise is not aimed at finding further cost savings. However, ministers are considering ways to overhaul the tests so the focus is no longer solely on a person’s ability to carry out day-to-day tasks like cooking, dressing and washing. Other factors – such as personal circumstances and living environment – could also be used to decide whether someone qualifies. Campaigners say it is unclear exactly what ministers have in mind. Disability Rights UK has argued there is “no reassurance” that eligibility won’t be further tightened. Day said it was “hard to trust them because they wanted to save money”. The 36-year-old added: “It’s difficult to know if the assessment process could get even more difficult.” A Government spokesperson said the PIP review would make sure the assessment process “is fit and fair for the future”. They said reforms were aimed at supporting people who can work into employment and put the “spiralling welfare bill on a more sustainable footing”. (Photo: Stuart Wilson/Getty)