I proved I'm disabled – why do I have to do it again to get the benefits I need?

Punteha pictured smiling sitting in a cafe

I used to be a person who sorted out household letters as soon as they arrived.

Then I had the anxiety of dealing with the Department of Work and Pensions (DWP) and now I face my letterbox with trepidation, if at all.

I’m scared of receiving post that says my payments will be cut off and this fear makes me go days without opening my mail. Sometimes I even ask my husband Andy to open all our letters because it gives me that much anxiety.

It has been over six months since I had to file more than 20 pages of soul-destroying explanations on why I should still receive Personal Independence Payment (PIP) – a benefit in place for people like me who have disabilities and/or long-term health conditions – from the DWP.

PIP is designed to help with some of the extra costs incurred by the disabled, estimated by charity Scope to be an extra £583 a month on average.

But I am still waiting to find out if my payments of just over £340 a month will continue.

I only started claiming PIP in 2020, despite living with severe endometriosis for 20 years, and a chronic hip issue that impacts my mobility. Both issues cause me intense pain and affect both my ability to care for myself and to do things independently.

PIP has allowed me to pay for things like physiotherapy, chiropractor appointments and talking therapy. When I have had to pay a consult fee, I’ve used my PIP. It’s also covered all the little things that have needed replacing – like my shower stool, electric heat pads and hip pain cushions.

But despite endometriosis being classed as one of the top 20 most painful conditions by the NHS, I was informed by DWP in February this year that they wanted to reassess my right to claim. This is because my PIP allowance has a review date and, as I called six months before mine lapsed, a reassessment was triggered.

Why? What do they expect has changed?

Some might argue if my condition has deteriorated, I would be entitled to more than the standard rates. True, but I can let the DWP know that at any time and start the ball rolling for a reassessment.

It makes me anxious knowing at any point, the DWP might do a 180 on my legitimate right to claim because one of their assessors decides it.

In my experience, many assessors are woefully inadequate in understanding what claimants go through on a day-to-day basis.

After crying my way through 90 minutes of what should have been a 45-minute initial telephone assessment in 2020 because I felt so anxious, my assessor’s report said I coped well emotionally and didn’t appear anxious during the call.

When I read this, I felt angry because they had clearly lied. Even on the call, she had said to me, ‘I can hear you are quite anxious’. Inaccuracies like this not only shake your belief that the DWP assessors are capable, truthful and equipped for the job, but could potentially impact the scores you’re given and therefore if and how much you’ll receive by way of PIP.

Meanwhile, a friend took the DWP to tribunal and won, proving her assessments were all flawed.

I wish every day for my physical health to improve, my mobility to increase and my disabilities to vanish into thin air. But it’s simply not going to be the case.

Not for a lack of trying on my part either. I’ve had eight major surgeries since 2012 to manage my endometriosis and hip issues. I’ve lost an ovary, had more steroid injections than I can recall and still need to take fistfuls of hormones, opiates, and anti-inflammatories every day, just to function at this rubbish level.

I work, parent, endure, and survive in deep daily pain. I pay out of the nose every month for private healthcare, physiotherapy, chiropractor and talking therapy. If I didn’t, I’d have to lay in bed 24/7 and give up on having any semblance of a life because the NHS cannot support my needs.

My PIP payments help me halfway to covering some of these extra vital costs. Never mind the fact my health, life and critical illness insurance all cost me more, and now the heating I need to have on (when I am cold, my pain is worse so I am having to choose between suffering and paying bills) threatens to bankrupt me.

The list of extra financial penalties I pay for being disabled is never-ending. The stress is eternal; the anxiety all consuming.

So why does the DWP need to reassess my PIP every 24 months – sometimes less – subjecting me to lengthy forms that, quite honestly, impact my mental wellbeing to a huge degree?

They leave me feeling depressed, anxious, and angry. The forms make you feel like you are not only a burden to society, but to your partner, kids and anyone else who loves you.

But having to quantify how disabled and immobile you are in such excruciating detail is not only humiliating but dehumanising and that mental impact stays with you. For me, it was the start of understanding and accepting that I was disabled and that is a huge mindset shift. A very difficult one.

Once you’ve submitted the forms too, there’s a significant backlog to process PIP reassessments, and the wait for PIP outcomes for disabled and chronically ill people like me is utterly inhumane.

Every time I’ve called DWP for an update since April, I’ve been on hold for up to two hours. I gave up four times before finally, on the fifth call last month, I learned my reassessment papers had been received on time but are yet to be allocated to an assessor.

They’re not even in the queue to be looked at yet.

The DWP advisor told me it was because during Covid-19, many workers left the department and never returned – so the DWP is having to train new assessors from scratch, which, he said, takes 12 months.

Understaffing is the DWP’s crisis, but the constant, gnawing anxiety that comes with waiting month after dragging month to find out what’s happening with the little financial support the Government gives me to cope with the extra costs of living with my disability is doing me in.

Quantifying how disabled and trapped in your body you are is emotionally damaging and making people live with this sort of reassessment uncertainty is unethical and cruel.

If the DWP cannot clear reassessments quickly, it should cease asking for them. Instead, it should extend PIP payment claims to three or five years from now, when the backlog has been properly cleared.

The current delays are a vital issue that needs resolving now.

For the sake of people like me whose daily lives are turned upside down by health issues and disabilities – and for those whose very will to live depends on these decisions – things must change.

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