Social Justice

'I'm terrified': Disabled and mentally ill people share harrowing experiences of benefits system

Big Issue readers have shared their 'disgust' about the proposed changes to the disability benefits system and personal independence payments

rishi sunak/ dwp disability benefits changes

Rishi Sunak has called for an end to a "sick note culture". Image: Simon Dawson / No 10 Downing Street

The Department for Work and Pensions (DWP) has recently announced a series of proposals to reform the disability benefits system in what has been described as an “assault” on disabled people.

Changes could include personal independence payments (PIP) being replaced with vouchers or one-off grants to cover extra costs, although it’s important to remember that these are currently just proposals and are not yet set in stone.

It follows prime minister Rishi Sunak saying he wanted to eradicate a so-called “sick note culture” amid increasing numbers of people with mental health conditions claiming sickness benefits.

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“We don’t just need to change the sick note, we need to change the sick note culture so the default becomes what work you can do – not what you can’t,” Sunak said in a speech on 19 April.

“We now spend £69bn on benefits for people of working age with a disability or health condition. That’s more than our entire schools budget, more than our transport budget, more than our policing budget.”

Sunak added: “I worry very much about benefits becoming a lifestyle choice.”

The government has also announced changes to the work capability assessment which could see more than 450,000 people miss out on the extra health element of universal credit by 2029.

Big Issue readers wrote in to react to our reporting on the changes. Read their thoughts below.

Responses to the DWP proposals for the disability benefits system

I suffer from severe and enduring mental illness including bipolar disorder, ADHD and histrionic personality disorder. I cannot work. I am terrified at the government onslaught on disabled and mentally ill people. They see us as easy targets to save money because they have been reckless with money and need to get money from somewhere.

It’s all about saving money but disguised as “helping” us realise our potential. This government are attacking and demonising the disabled. I need the substantial risk element to protect me because I am a high suicide risk. When unwell I have made several attempts on my life. If the substantial risk factor no longer applied to me I would be terrified. I fear the changes to the work capability assessment and stripping GPs of their power to write sick notes.

Debbie

I appreciate that the costs to fund such benefits are increasing exponentially but surely logic would advocate that to remove PIP and replace with vouchers is unworkable.

How is a voucher going to help when I wet myself or cannot get dressed in the morning? Care is usually provided by my wife and daughter but as I am soon to be divorced and single, such provision is very costly.

What about when I get brain fog and cannot cook a simple meal or manage to get a drink? Will a voucher correct my inaccurate data entry to my diary or correct the umpteen copy errors in my texts and emails?

As with many reactive pre-election soundbites, this proposal is problematic on numerous levels and whilst the care system remains in crisis, the associated welfare costs will continue to rise, whether through a voucher scheme or continuance of cash payments.

Dick

No one or nothing is being talked about the white elephant in the room, the employer! To make reasonable adjustments to employ disabled people is usually at a cost, for example I had an ergonomic chair following health and safety check which cost the employer £350 and was tailor made.

Also, with some health diseases, good days and bad, would the employer be fine with this person continually taking those bad days off sick? The European Qualities Act is in place but not effective in many workplaces.

Employers have to make money to employ people, we will be at a disadvantage from the offset, unless it is a huge company which can absorb the costs. So like apprenticeships perhaps an incentive with grants to help both the employer and the disabled person Cutting cost to the disabled person is backwards and cruel!

Stephanie

After reading your article about DWP disability benefits being reduced, I wanted to say that, as someone who has struggled with several chronic conditions for many years, and who finally had to give up a job they loved in 2023, this is very concerning.

I am still awaiting my health assessment and am anxious that I will be placed in the fit to work group by the DWP. I had a well paid job, working from home. I would not have given it up if I was able to continue.

It is naive at best, cruel at worst, to believe stopping people’s benefits will mean firstly that they will magically be without a disability and able to work, and secondly that they will find an employer willing to give them a job.

Tina

When I watched the benefits reforms speech by Rishi Sunak, I was in disbelief. I worked all my life as a primary school teacher and loved it however I developed lung disease and chronic obstructive pulmonary disease in 2016 and was unable to work so left my job.

I struggled for years after that only being paid £300 from universal credit a month and no other income. I lived in a tent for a year at one point as I was so poor and had no savings from work as my £1,600 a month salary didn’t go far enough to save back when I was working.

I’ve only recently been given LCWRA after years of being told I couldn’t apply due to Covid backlogs and prior to that not knowing about universal credit sickness benefit. I also get full PIP and still struggle to survive. I’ve also just applied for social care for a carer to look after me but had to then turn it down as I couldn’t afford the £70 a week they wanted me to pay the council for that care.

Rishi says people on benefits make it unfair for the tax payer but what about those who were taxpayers for many years? I did two degrees at university to get my job and did not choose benefits instead of working… It was a bad hand of fate that landed me here.

Shouldn’t he be looking else where for savings rather than from the needy? Is he trying to make everyone work so when the war comes and conscription no one can refuse on health reasons?

Won’t these cuts just result in more homeless people, more hungry, more sick people as they can’t afford to care for themselves efficiency? And in turn cost the taxpayer more in the long run.

The work capability test for universal credit is horrific and scary as it is. The system punishes people who are too poorly to engage with the process already. If your too poorly to jump through hoops your benefit is stopped. If your well enough to jump through hoops you shouldn’t need benefit. The system does need changed but not in the way Rishi Sunak has proposed at all.

Annaliese

I understand what the government wants to do, but these policies are not about helping people, only about finding ways to stop paying benefits. My son turns 20 next week and has a rare condition. He has suffered brain damage over the years due to his condition and can’t work.

He basically functions at age six for some things. He gets full disability benefits and universal credit. I worry that this support will be taken away. Even though he is permanently signed off as unable to work by a doctor the fear is some how money he needs to live on will be stopped. I believe in helping people to work but this government seems interested in only stopping people’s money.

Vic

I am totally disgusted by the prime minister. I get the standard rate of PIP and it is currently in the renew stage. I have depression, anxiety, osteoarthritis and eating disorders, am deaf in one ear and a little in the other. I can’t hear anything behind me. I take nine tablets a day very rarely go out of the house and when I do it is with a family member. I can’t look after myself properly at this moment in time. How can I work?

Tracy

These disability reforms are making second class citizens of anyone with illness or disability. People with anxiety can be totally crippled by the condition. They have no idea. We need to stand together to protect our most vulnerable citizens.

Kay Frizell

Do you have a story to tell or opinions to share about this? We want to hear from you. Get in touch and tell us more.

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