It never crossed my mind I might need disability benefits. Now I don’t know where I’d be without PIP

Haitham Elmasri, a 44-year-old based near Manchester who has Parkinson’s disease, shares his experience of claiming personal independence payment (PIP) and his fears that it could be taken away while the government planned disability benefit cuts. 

Ministers have announced concessions which will mean that current claimants are protected from the cuts – but future claimants will still be affected.

Elmasri says that it is “massively” worrying that people with Parkinson’s won’t necessarily be able to get the support for which he has been eligible. PIP and universal credit protected him from losing his home after he was forced out of work because of his health.

Here is Elmasri’s story.

I’ve not been claiming PIP for very long. I submitted my claim in January last year and it was a difficult time because I had come to realise I wasn’t fit to work. That realisation was a shock, and then claiming PIP was a hassle. They declined me on my first application. 

Thankfully, Parkinson’s UK were fantastic helped me through the first stage of appeal – the mandatory reconsideration. Eventually, I was awarded PIP with backdated payments. That was a huge relief, as I was genuinely worried I wouldn’t be able to pay rent. I live alone with my dog who, charming as he is, doesn’t exactly contribute to the bills.

At the time, I’d just been advised to leave my job as an area manager for a car company. I was left thinking: ‘How am I going to pay my bills?’

PIP made the difference between keeping my home and losing it. I live up north and my family are on the south coast. I’ve got a great network of friends, but there’s no one who could support me financially. 

Read more: 

• Starmer finally backs down on disability benefits cuts – but are the concessions enough?
• I’m a Labour MP and this is why I still can’t support the government’s disability benefits cuts
• Labour’s disability benefits bill is supposed to help people into work – but the jobs aren’t there

I was relieved when I found out about the government rolling back on some of the proposed PIP cuts. The whole situation had been causing me sleepless nights. I already struggle with sleep due to tremors, but this has weighed heavily on my mind in recent months.

Still, I’m deeply concerned that future claimants may not be protected. I understand that the country’s in debt and money needs to be found, and someone’s got to foot the bill somewhere, but why target people who are struggling? There’s people out there with huge amounts of money who probably shouldn’t have so much (as an example, the big chiefs of water companies).

I’ve been told Parkinson’s is not usually hereditary, but my brother (I’m the eldest of four) is worried he might be developing it. If PIP becomes harder to access, what will it mean for people like him in the future? I wasn’t the first and I definitely won’t be the last in that situation. If I hadn’t got PIP, I honestly don’t now where I’d be now.

I feel strange admitting this, but it never crossed my mind that I might need disability benefits. When I was diagnosed in 2019, I was 39. I’m 44 now, but in those first few years, I guess I was fortunate because it didn’t impact me much. But over the past couple of years, it’s become more of a struggle. It’s not yet a daily battle, but week to week it’s increasingly tough.

I’m stubborn and hate admitting defeat. That’s how it felt last January when I was effectively told I could no longer work. Looking back, it was probably for the best. I had pushed myself too far and risked making things worse. I may even have put myself – and others – in danger.

After being let go, I visited the Jobcentre. The advisor asked what my plans were. I confidently said I’d have a new job within a fortnight. But the reality was, some days, I couldn’t even make a cup of tea. It wasn’t safe for me to drive between sites or manage a fleet of vehicles. The potential for serious accidents was real.

I thought maybe I could do bar work – but I can’t lift a glass to my mouth without spilling it. I even considered training as a barber – not a great idea either. The truth is, I wasn’t fit for many roles.

There should be more support. Parkinson’s is so individual. It progresses at different rates in different people. People need different treatments. I’ve been approved for something called DBS – deep brain stimulation. TIt’s not a cure and not suitable for everyone, but for me, it offers hope. A light at the end of the tunnel. If it goes well, I hope to return to some form of work. But without that, and if PIP were taken away – what then? For people who won’t qualify under future rules, what are they supposed to do?

Surely there’s a better way to generate money than cutting back on disability benefits. What’s needed is greater understanding. The people who make the decisions on what allowances disabled people receive should have medical qualifications in the relevant specialism. That would lead to more informed decisions, fewer complaints, and a more effective system overall – a win-win for everyone.

There are already so many challenges living with Parkinson’s. Add to that the stress of navigating PIP, and it becomes overwhelming. I’m just one of many trying to raise awareness of what life is really like with a condition like this – day in, day out. When the government made these announcements, many people didn’t grasp the real-world impact of losing PIP. I’m just trying to bring a bit of reality to the debate.

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