I use my PIP payment to live and work, I'm terrified of the DWP taking it away
When news broke in March that the government planned to overhaul the benefits system, a knot of anxiety settled in my stomach — and it hasn't eased since. At first, I tried to ignore the headlines. However, with the first stage of the review now underway, the worry remains constant.
Under the current proposals, I'd be among more than a million people at risk of losing disability support through the personal independence payment (PIP), despite being disabled and working full time.
PIP is a non-means-tested benefit awarded based on how your condition affects your ability to carry out daily activities — things like showering, preparing food, or using the toilet. It's not about your diagnosis, but how that diagnosis affects your ability to function safely, repeatedly, and in a reasonable time during these tasks.
For me, PIP has been a lifeline, enabling me to stay in work - and I don't have a plan B if it's taken away.
If you think disability is a remote issue then bear in mind 16 million people in the UK are currently living with disability.
I live with Cerebral Palsy (CP), the most common motor disability in childhood. It's a lifelong condition that makes standing for long periods, cooking, cleaning, or even washing my hair unaided extremely difficult. And after a year-long, draining assessment process, the Department for Work and Pensions (DWP) agreed in 2023 that I qualified for PIP.
So why, when I tick every box — lifelong disability, working full-time, already assessed — should I now potentially lose this support? Because under the new rules, you need to score four points in one 'Daily Living' activity to qualify. Even though I went through an exhausting battle to prove my eligibility, I only scored three points in a single activity.
The proposed criteria essentially now say that unless you require direct assistance or supervision to do these activities, many of us who still need help risk being excluded entirely. Proving I needed support was gruelling. It took six weeks of gathering letters, a 3,000-word application detailing my condition, logging a diary of daily challenges, and chasing multiple physiotherapists who could back up what I said.
Proving I needed support was gruelling. It took six weeks of gathering letters, a 3,000-word application detailing my condition, logging a diary of daily challenges, and chasing multiple physiotherapists who could back up what I said.
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One of the most challenging parts — even before applying — was knowing where to find accurate information. I didn't know what evidence was enough. Did I need everything, or just certain documents?
I scoured websites like Disability Rights UK, a charity, which set me on the right path. There are plenty of support groups on Facebook or Reddit that discuss benefits, but it's too easy to get lost in misinformation on general forums. I wasted about three weeks chasing my GP for something Scope UK eventually advised wouldn't be necessary and it delayed my application by a month.
Once I submitted, after another six-month wait, it was the assessment. This part was brutal — I was grilled for over an hour on the phone by a nurse who, as far as I could tell, had no real understanding of my condition. In my experience these assessments have never been in person which would enable them to see the full extent of my disability.
I was frustrated; it felt rushed, like the assessor was just ticking boxes rather than trying to understand the full picture of my daily challenges.
Even when I was finally awarded PIP, what stayed with me wasn't relief — it was the humiliation and vulnerability that came with the whole process.
It's hard to describe the shame that comes with explaining to a random, if well-intended, medical professional, the very personal reasons why I need help putting on clothing, why I find it hard to cut up food or why baths are out of the question (though I promise I do shower!).
The whole PIP process was exhausting and infantilising, and one I had hoped not to repeat, at least so soon, if the new changes go through.
The whole PIP process was exhausting and infantilising, and one I had hoped not to repeat, at least so soon, if the new changes go through.
I'm fortunate to be able to work as and when I can - and thereby contribute to the Government through income tax - but even then, PIP isn't a luxury. As is the case for many disabled people, my outgoings are significantly high. It's what's known as The Disability Tax, or Disability Price Tag, and it means spending more on goods and services just to maintain the same quality of life as a non-disabled person.
My PIP helps cover essentials: clean bedding, taxis, a housekeeper, private physio (wait-lists via the NHS are painfully long), meals when fatigue overwhelms. To be clear, fatigue to me is that I can barely move not that I'm just 'a little tired'. For context, if I am feeling fine it will still take me three times as long as a non-disabled person to get dressed.
To give you an example, last month alone, I spent:
£368 on taxis to get from A to B (the hot weather drains me of energy)
£127 on groceries (delivered, of course)
£250 eating in or out (I'm appalled at this figure in particular, though yes, the Deliveroo drivers practically know me on a first-name basis). This is because most days, with working and living alone, I'm just too tired to cook
£150 for a private physio appointment
£152 (£38 a week) for a cleaner
£120 (£30 a week) at the hairdressers because I can't wash and dry my hair
£40 on dry cleaning (I can't wash or dry bedding myself)
That's well over what I receive from PIP each month — and it doesn't include rent, bills, or anything non-essential. My wages go towards those.
I'm not using PIP for anything but to live. The idea of losing it — not because my needs have changed, but because the system might — is terrifying.
I'm not using PIP for anything but to live. The idea of losing it — not because my needs have changed, but because the system might — is terrifying.
I know I can cut down the food bill, but everything else generally has the same price tag a month (or higher). So much depends on my CP — on the day, the week, and how much energy or fatigue I'm dealing with. PIP is also a vital support that can keep everything going if I need, for example, to reduce hours.
Losing PIP wouldn't make me less disabled, it would just make life harder. And like so many others, I'm not asking for anything more than the right to live with dignity and support. That shouldn't be up for debate.
PIP isn't the only disability benefit under the microscope at the moment. The government also announced potential changes to Universal Credit (UC) and the Work Capability Assessment. Regardless of which might apply to you, it's an uncertain time for millions around the UK.
But just to remind you: Nothing has happened yet. You can only do what you can — whether that's gathering all your medical documents, speaking to your MP, or sharing your story.
Your health condition is valid, and you were awarded PIP for a reason.
Alex, a helpline adviser at disability equality charity Scope UK, agreed it is a stressful time for everyone potentially affected: "At Scope, we regularly hear from disabled people who are applying for benefits and are finding the process very stressful and anxiety-inducing."
Scope offers this advice for anyone feeling overwhelmed:
Try grounding yourself with self-care. "Self-care is important, distracting yourself by journaling, reading, meditating or crocheting can be therapeutic."
Channel anxiety into action. "You may find it helpful to channel that anxiety into action by writing to your MP, joining the Scope forum or getting involved in local campaigning groups. The news can be both positive and negative,' Alex said. "Sometimes it's better to step back when it's not helpful."
If you're currently applying for PIP and worried about returning the form on time, you can call the DWP and ask for an extension — just be prepared to explain why you need more time.
"Don't leave it all to the last minute," Alex advised. "Break the process into smaller, manageable chunks — and get support if you can. Friends, family, or organisations like Scope can help.
If it's affecting your mental health, speak to your GP or contact a charity like Mind. If you need urgent support, you can contact NHS 111."
Read more on benefit cuts:
Who will miss out on PIP under Labour's reforms? The new DWP assessment explained (Yahoo News, 5-min read)
What Labour's universal credit changes mean for your benefits payments (Yahoo News, 6-min read)
Major PIP and universal credit benefits changes confirmed by DWP - what you missed (Yahoo News, 8-min read)
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