‘I’ll lose my ability to be part of society’: Disabled people fear life after Labour’s benefit cuts

Disabled people have described feeling “terrified” that they could lose their benefits as the government prepares to announce its plans for the welfare system.

Labour ministers are yet to officially reveal their proposals, although they have repeatedly said they hope to slash the welfare bill and push more disabled and unwell people into work.

According to the Joseph Rowntree Foundation, if the government were to cut £6bn as rumoured, it would be the largest cut to disability benefits since 2010.

• ‘Being alive is utterly exhausting’: How Covid forced people out of work and onto benefits
• Disabled and mentally ill people feel ‘broken and without hope’ over Labour’s plans for benefits
• MS has left me virtually housebound – I fear what disability benefit reforms mean for my future

The Department for Work and Pensions (DWP) green paper on welfare reform is expected this week, which will reveal more details ahead of the chancellor’s Spring Statement on 26 March.

It could include tightening the criteria for personal independence payment (PIP), designed to help cover the extra costs of a disability, and the ‘limited capability for work’ elements of universal credit.

A DWP spokesperson has told the Big Issue “millions of people have been trapped out of work which is why we’re bringing forward reforms to health and disability benefits in the spring, so sick and disabled people are genuinely supported back into work, while being fairer on the taxpayer”.

This includes a £240m investment in employment support, with work coaches providing intensive and personalised support to tens of thousands of benefit claimants.

However, the “uncertainty” around the plans for sickness benefits is leaving disabled and seriously ill people – many of whom are unable to work because of debilitating health conditions – fearing that the money they rely on is going to be ripped away.

Ross Barrett, policy manager at the MS Society, says: “We strongly oppose cruel cuts to disability benefits, as there’s a real risk this would push more of those who are struggling into poverty and worsen people’s health.

“Living with MS can be debilitating, exhausting and unpredictable, not to mention costly. PIP is a lifeline for so many, helping them manage the enormous extra costs of their condition – from mobility aids to physiotherapy.

“While lots of people with MS rely on means-tested benefits like universal credit and employment support allowance to survive. Our MS Helpline is flooded with calls from the community asking what these proposed changes could mean for them. We urge the government to drop any plans to cut benefits.”

The Big Issue spoke to two disability benefits claimants, both of whom have multiple sclerosis (MS), about their worries for the future.

Dave Johnston, 57, Suffolk

I feel terrified. Claiming PIP has got to be the most stressful process I’ve ever had to go through. I was so relieved when I was given the benefit. It has made a huge difference to be able to continue being part of society. I get the enhanced rate which means I am eligible for a mobility car, so I can still go out. 

But with what’s being planned now, I wake up and think: ‘What now?’ It’s the uncertainty. I’m just trailing the news all the time.

I’ve had MS for 29 years. In that time, it’s deteriorated. It has progressed from waking up one morning and not being able to see out of the right side of my right eye to where I am now. It affects the whole right side of my body – my ability to walk any distance, my cognitive ability and being able to think, my memory. It has just continued to take parts of me over time, and there is no cure for it.

Every three years, you get a review for PIP to see if there’s progress, and you have to fight every step of the way. I had to appeal to get the enhanced rate. 

And now you get news that Labour wants to cut billions from the weakest to encourage people back to work. That would have helped me back in 2011 if I was still working. Now I’m so scared that if they take PIP from me I’ll lose my ability to be part of society. 

To lose £430 a month, more or less, would be devastating. I would be spending more money on food and energy, just day-to-day living, than would be coming in. I use my heating sparingly already. I prefer to walk around with a blanket. I only put my heating on four or five times when it was very cold over the winter, to make things stretch.

It’s like living in a George Orwell novel – like 1984. You fear what the future holds for people.

MS is not a pleasant disease. It’s your body attacking you. Every day is different, whether you wake up in pain or you don’t sleep at all. I keep coming back to the word ‘terrifying’. I didn’t ask for this.

I was a baker when I was initially diagnosed with this. I was basically railroaded out of my last employment. I had been with the company for 18 years and tried to get reasonable adjustments. The pressure was unbelievable at that time. My mobility was getting worse. I was using aids to get around. I wanted to drop some responsibilities and I was pushed out of the job.

I despair at how the weak are being punished. Why scare so many people into how they are going to have to fill a gap of hundreds of pounds? I’m going to have to look at selling my possessions to make the money go further.

Ellie Pavone, 38, Basingstoke 

I’m extremely apprehensive about what cuts they’re going to come out with. It feels precarious. It’s very scary. 

I first applied for PIP in 2021 and at that point I didn’t know I had MS. I lived with fibromyalgia, and had recently been diagnosed with autism and ADHD. I got help from a local autism charity to apply for PIP and I couldn’t have done it without their support.

Still, my claim was refused. It took until July 2023 to be awarded the standard rate of PIP.

By that stage, I had a diagnosis for MS. The application process doesn’t allow for fluctuations in conditions like MS. They ask how you manage tasks – but on a good day, I’m alright and on a bad day, I can’t do it at all. It wasn’t until I got to tribunal stage that I could explain that.

The left side of my body is intermittently numb with pins and needles. It’s usually triggered by immense stress or the weather.

I get double vision and have to wear an eye patch, or a temporary prism lens on prescription glasses. I have to go to hospital every four weeks for an infusion, and that cycle is such a drain. I have to arrange my whole life around getting infusions.

I got backdated pay from my first application but during that time, I had no income. I wasn’t able to work. My son is 11 and autistic, and we’ve had to educate him at home because he wouldn’t cope in a mainstream school. My husband works but it’s tough because his pay hasn’t really gone up.

PIP helps me cover extra costs like supplements and therapies. It meant I could buy a treadmill to keep me mobile in winter, because my pain shoots up when it’s cold so I can’t really leave the house. Last year, I gained so much weight and I can’t put my body through that again. I use a crutch every so often when I feel wobbly.

I have tried to work over and over again, but I’ve been in and out of retail jobs and never able to stick at it because of my autism. There’s a lot of rhetoric around benefit claimants being scroungers or lazy or opting out of society, but the reason we aren’t able to take part in it is because society is so ableist.

It’s so hard because I don’t want to be living this life. I don’t want to have to just exist. I want to be able to thrive and I want my son to be able to thrive.

The impact of cuts would be huge for me. A lot of the public seem to think that if you’re sick, you get medication, and you get better, but that isn’t the case for me. Constant uncertainty is awful for anyone, but not knowing if your home is going to be ripped away from you, or whether the money that you rely on is going to be taken away, is very scary. 

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