FOR the last four years Bernadette Brown’s life has revolved around the anxious filling-in of a forest of forms and stressful tick-box benefits assessments where faceless officials cut and paste answers that distort her daily reality.

Most mornings she watches, with a racing heart, for the arrival of the postman, fearing another brown envelope landing on her mat. But on some mornings, she can’t seem to peel herself from under the duvet when she wakes, sometimes staying there for days, unable to eat, or cope, or do anything but hide away.

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In 2015 the Department for Work and Pensions (DWP) stopped Brown’s disability living allowance (DLA) and instructed her to apply instead for personal independence payment (PIP), causing the already severe anxiety she suffered from to catapult to levels she didn’t know possible.

Now 59, her mental health deterioration began what seems like a lifetime ago – it’s 18 years since she found herself wandering the streets of Glasgow for hours, not knowing where she was or why.

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A combination of ongoing mental and physical health issues – including clinical depression and anxiety – mean she hasn’t been able to work since, though she loved her former job as a home improvements officer.

She survives on employment support allowance (ESA) – unemployment benefit paid to those too unwell to work – topped up now by PIP, a much criticised, points-based benefit. Many disabled people rely on it to pay extra costs associated with their personal care, support and transport.

But last June, after a year-long reassessment process, she was told she no longer qualified. It left her hundreds of pounds worse off every month and, to her horror, reliant on the financial help of her 25-year-old son.

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“I felt like I had a rope round my neck,” she said. Finally she was given the number of Glasgow Disability Alliance’s (GDA) Rights Now project, a specialist welfare services for disabled people, who fought her corner and helped her to take it to tribunal. It was a feat in itself – only 9% of people refused PIP have their case taken to a tribunal, recent figures show.

Without her welfare rights officer, Siobhan Smith, Brown says she wouldn’t have been one of them. “It’s too much for my anxiety levels,” she says, twisting and re-twisting a hair bobble in her hands as she speaks. “My nerves were shattered.”

She won, with the court finding that the DWP had made an unlawful decision and compelling them to re-instate her benefits, as it does in 73% of all appeals. The success rate of the Rights Now project is even higher – 88% of the appeals they have taken forward for the 62 people they helped to win back their benefits from September 18, 2018, to the end of April this year have been successful.

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Yet for Brown, what might have tasted like victory turned to ashes when she heard she was due to be reassessed in February next year.

“The only thing I could think was that I’ve not got long to go until I have to start that process all over again,” she says. “Now I feel like I have a noose around my neck and I’m waiting to see if the floor below me drops or not. That’s the only way I can describe it. It feels like I am being strangled.” Smith, who has supported dozens of people through the process, understands. “People get so downtrodden by the system that without lots of support and encouragement they would just give up,” she says.

“I don’t know how many times I’ve sat with people in the waiting room at appeals who just want to run away because it’s terrifying for people.

“Someone like Bernadette had to fight this for a year, with all of that stress hanging over her and all the onus on her to provide the evidence of what she was due.”

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SITTING beside her at GDA’s bright and airy office, Liz – who doesn’t want to give her second name – wasn’t able to provide that evidence until the Rights Now team took on her case.

She has a diagnosis of emotional instability disorder (formerly borderline personality disorder), as well as mobility issues, but has struggled to prove she needs the additional financial support PIP provides.

“I’ve only been awarded PIP for the first time this year and I wouldn’t have got it at all if it wasn’t for GDA,” she says. “I had applied for PIP on at least four separate occasions with the same health issues, the same condition – the same questions and the same answers – and been turned down at every stage.”

The forms, she says, are not designed with mental health issues in mind. “They ask you: “Can you cook a meal from scratch?” Well, actually, I can. But because of my mental health issues I don’t. I have no inclination to do that. I’m depressed.

“I generally work, which I’ve been told shows I’m capable and able. But I don’t cope well. I had seven different jobs in a year. At my PIP tribunal one of the panel said I must be good at interviews. But that misses the point – I lost six of those jobs because of my condition.”

The assessment – done by private companies contracted by the DWP such as ATOS – isn’t based only on the set questions though, claims Ian MacCorquodale, a project worker.

“When someone stands up in the waiting room they are being observed,” he says. “Their name is being called, they are anxious, so they might push through the pain to get to that room. But then it’s noted that they walked that distance with no bother, even if they have to stop and hold on to the wall on the way.’’

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Then there is the covert filming by DWP investigators to prove claimants are not telling the truth. Last year Sainsbury’s revealed its policy to hand over CCTV footage to the UK Government benefit agency.

It’s hard, says Liz, not to feel like disabled people are under attack. “They make you feel as if you’re lying, that your condition isn’t as bad as I say it is. I have a CPN, a psychiatrist and [the DWP] ask you to name these specialists and you have to ask them to write you a letter [as evidence].

“Then they send you a stranger who knows nothing about you, and who is not qualified in your particular illness, and they ask you if you can move your arms apart to see how flexible you are. What has that to do with my mental health?”

Brown shares Liz’s frustration. “I had eight letters from the CPN, the psychiatrist, the different surgeons, my GP,” she says. “I had all that evidence and I didn’t pass my assessment. It was a waste of my time and theirs as well.” Her voice drops. “It makes me feel worthless.”

Tressa Burke, the chief executive of GDA, says the UK benefit system “pathologises” people instead of recognising the systemic problems.

“In assessments a lot of dangerous assumptions are made,” she says. “Comments might be made about how someone – who has made an effort to wash their hair and put on make-up – doesn’t need the support without regard to the fact that they are really suffering from fatigue based on getting ready and attending the assessment.”

But Burke is hopeful that an improved system will soon be introduced. Social Security Scotland is due to roll-out its disability benefits for working age people – the Scottish replacement of PIP – early in 2021. Originally it was scheduled for next year. The delay is disappointing for both the claimants and advisors at GDA, though they concede that if the Scottish Government does indeed fulfil its promises to get it right, maybe it’s worth waiting a little longer for.

A Scottish Government spokesman said it is building “a rights-based social security system”.

“We want to remove unnecessary barriers to those entitled to make a claim. We will not use the private sector in our disability benefit assessments and we will reduce the need for face to face assessments,” he added.

But there is no commitment to stop using surveillance, only to use it “as a last resort” – despite benefit fraud rates standing at little more than 1%.

“Social Security Scotland needs to take as a starting point an approach that says we believe people, we will treat people with dignity and respect- even if they don’t meet the test for Personal independence Payment,” says Burke. “In reality most people wouldn’t put themselves through applying if they didn’t feel they needed the support and met the test.

“It remains to be seen how well our Scottish system will be implemented, of course.

“But we are hopeful things can change for the better and that we will ultimately create a system that sees social security as a way of helping people to thrive and not just survive.”