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 fears it could be taken away while the government planned disability benefit cuts. 

It is believed that ministers are set to announce 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 long been claiming PIP. I registered 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 was a shock, and then claiming PIP was a hassle. They declined me on my first application. 

It was thanks to Parkinson’s UK, who’ve been excellent, who helped me through the first stage of appeal – the mandatory reconsideration – that I finally got backdated pay. That was brilliant, because I was worried I wouldn’t be able to pay rent. I live alone with my dog, who doesn’t exactly contribute to the bills.

I was at a point where I’d been advised to leave the business I was working in, as an area manager for a car company, and I thought: ‘How am I going to pay my bills?’

PIP was the difference between me keeping my house and just about being OK and not. I live up north and my family are on the south coast. I’ve got a good network of friends, but there’s no one who could help me out 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 backtracking on the full-blown PIP cuts. It’s caused me loss of sleep at night. I struggle with sleeping anyway because of my tremor, but it’s definitely been on my mind the last few months.

But it does massively worry me that future PIP claimants won’t be protected. I get that the country’s in debt and there’s money owed, and someone’s got to foot the bill somewhere, but why would you 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).

Parkinson’s is not usually hereditary, I’ve been told, but my brother (I’m the eldest of four) is going through the motions because he thinks he might have it. If PIP changes in the future, it could be even more difficult to get. I wasn’t the first and I definitely won’t be the last in that situation. If I hadn’t got PIP, where would I be? I honestly don’t know.

I feel stupid saying 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. It’s only in the last two and a bit years that it’s been a battle – not to get through the day yet, but certainly week by week, it’s difficult. 

I’m a bit stubborn sometimes, and I don’t like admitting defeat, and that’s how I felt last January when the decision over me working got taken out of my hands. But I guess in hindsight, it was a good thing. I carried on working to the point of putting myself in a bit of danger. I was probably being detrimental to my health.

When I was asked to leave, I went to the Jobcentre, and she asked me what my plans were. I told her not to worry and that I was 90% sure I’d be in a new position in a couple of weeks. But I couldn’t even make a cup of tea at times of the day. That’s probably not the best time to be driving multiple vehicles. There were all sorts of potential ways to hurt myself and others, at quite a lot of expense, because vehicles are not cheap.

I thought, well if I can’t do my role, I’ve still got to do something. I thought I’d do bar work. But I can’t hold a glass to my mouth without spilling it all down my top. Maybe a barber, but that would be a bad idea. I wasn’t fit for all sorts of things.

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. That’s not an option for everyone, and it’s not a cure, but it’s a light at the end of the tunnel where I can see myself hopefully getting back to some sort of work in some capacity. But if I wasn’t able to have that, the prospect of having PIP taken away… what would be next? For the people who aren’t going to be eligible for support in the future, what are they going to do?

Surely there’s a better way to generate money than cutting back on disability benefits. There needs to be more understanding. The people who make the decisions on what allowances disabled people receive need to be medically-qualified in that particular healthcare specialism. They need to be able to make more informed decisions. It’s a win-win for the government too – there would be less complaints and a more efficient operation.

There are so many challenges with Parkinson’s and then there’s all this with PIP, and I’m just one of (I hope) a lot of people trying to raise awareness of what it’s like for us on the ground, on the frontline, on a day-to-day basis. When the government made these announcements, a lot of people didn’t know what it means to have a health condition like Parkinson’s and what it would mean for us to have our PIP taken away. I’m just trying to bring a bit of reality home to it.

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