Kloey Clarke, 28, from Devizes in Wiltshire, has had severe anxiety and type II bipolar disorder for six years. “I’m scared to leave the house,” says Clarke, who does not feel emotionally or physically stable enough to hold down a job and relies on her husband for care and support. “I have a constant fear of dying. I can’t socialise and I can’t communicate outside [the house].” For four years, Clarke depended on a Disability Living Allowance (DLA). The DLA was replaced by Personal Independence Payments (PIPs) in 2012 – and phased in from 2013 – but she was receiving them for less than a year before she was reassessed by the Department for Work and Pensions (DWP) and told she no longer qualified.

Clarke believes that the assessment for PIP is aimed at people with physical disabilities and does not account for mental illness. “I was asked if I could walk 200 metres unaided. No, I don’t need a stick or an aid, but I do need my husband or someone with me. Can I talk to people face to face? I talk to my family when they visit, but can I speak to strangers? No.”

She has had panic attacks as a consequence of losing her benefits, she says, and her family is now struggling financially. They have had to visit food banks twice since being rejected for PIP, but Clarke’s pride has stopped her from going more frequently. “I just find it so degrading. I don’t feel as if I should be there. I feel that, if I just had what I deserve, then I wouldn’t need to be in that place; I wouldn’t need to take food from, say, homeless people.”

Clarke’s marriage and her relationship with her children are suffering. “I’m useless to them, I’m not half the mum that I could be. I haven’t got enough funds. The government has no idea what these types of assessments do to people with mental health [issues]; how much it takes to walk into that room and talk about something so personal and then be told you aren’t ill enough.”

The evidence is mounting that people with mental health problems in particular are being failed by PIPs, with claimants reporting that the new system takes no account of the needs of people with conditions ranging from schizophrenia to severe depression. Figures released by the DWP in October showed that complaints about the PIP assessment process increased by 880% last year. The number of complaints that were upheld rose similarly dramatically, by 713%.

The DLA was first introduced in 1992 by John Major’s Conservative government and was paid to eligible claimants who had personal care or mobility needs as a consequence of a physical or mental disability. PIPs were introduced by the coalition government as part of the 2012 Welfare Reform Act, and have been steadily replacing the DLA since 8 April 2013. Some claimants who received indefinite DLA awards were not being reassessed, and the government then argued that it was necessary to have a system that frequently assessed people in order to determine if their needs had changed over time. In 2013, the then work and pensions secretary Iain Duncan Smith told the Daily Mail that “70% of people on it [DLA] have lifetime awards, which means no one sees you ever again. It doesn’t matter if you get better or your condition worsens – it’s quite ridiculous.”

The assessor's concerns were about what the reflection would be on her if I did go out of the door and kill myself

The big differences between PIP and DLA claims arise from the assessment criteria. DLA is based on an individual’s condition and the needs arising from this, while entitlement to PIP is assessed using a points-based system. Claimants are typically invited to a face-to-face assessment in a private consultation room, but are sometimes assessed in their homes. People score points according to their ability to complete a number of everyday activities, such as washing and cooking, and whether they need aids and appliances or help from another person to do so. According to Full Fact, an independent factchecking charity, between October 2013 and October 2016, 22% of DLA claimants with mental health conditions had their benefits reduced when they were reassessed for PIP, and a further 25% lost them altogether.

Many of the people I speak to say the PIP assessments do not take into account the effect their mental health conditions have on their lives. Some say that, even though they are physically capable of preparing a meal, driving a car, or dressing and washing themselves, the ability to do these things changes all the time. This is especially the case with conditions such as clinical depression or bipolar disorder, when, on some days, a person may find it difficult to get out of bed.

Daniel O’Connor, 64, from Glasgow, has led a tough life. He has severe depression and adjustment disorder, and has twice attempted to end his life. O’Connor had been receiving DLA for nearly 22 years when, this year, his application for a PIP was rejected. Since then, he has experienced financial hardship and says his condition has worsened. O’Connor says he felt as if he wasn’t being listened to at his PIP assessment and recalls telling the assessor that on some days he struggles to get out of bed because his depression is so debilitating. However, his assessor dismissed his story, citing the fact that he could drive as evidence of his ability to carry out everyday tasks. “We got to discussing a previous suicide attempt I had [made],” he says. In the final moments of the interview, the assessor asked him seven times if he was going to go out of the door, there and then, and kill himself. O’Connor adds he found himself in the position of having to placate the assessor. “It seems to me that her concerns were not about me; her concerns were about what the reflection would be on her if I did go out of the door and kill myself.”

Rejected PIP applicants have the right to appeal the decisions made by the DWP, and statistics from the Ministry of Justice show that 65% of appeals are ruled in favour of the claimant. Campaigners say this demonstrates a systemic ineptitude in the way the assessment criteria are being interpreted.

Alison Smith with her husband, Mark, at home in Beverley. Photograph: Darren O'Brien/Guzelian

Alison Smith, 55, from Beverley in Yorkshire, cares for her husband, Mark, who has bipolar disorder. Mark “is unable to go out without someone with him or socialise”, she says. He can go for days without washing, dressing or eating. He will neglect his medication if not reminded and has self-harmed. The couple have lost other benefits, including their housing benefit, since losing PIP and they have been relying on a lump sum from Alison’s pension to get by.

Alison had a difficult time at her husband’s appointment. “The woman who did the assessment was horrible. She wouldn’t let Mark speak. When he tried to say anything, she kept saying: ‘No, I’m not interested in that – I need to go through what’s on this computer.’ They don’t look at the mental illness side of things. Mark has the [physical] ability to make a sandwich, but he doesn’t have the mental ability to do it.”

“Often, we hear from people with mental health problems who tell us that they dread the face-to-face assessments,” says Paul Spencer, policy and campaigns manager at the mental health charity Mind. Spencer adds that, as well as reforms to the Work Capability Assessment, used to determine one’s eligibility for Employment Support Allowance (ESA), “we also urgently need the government to overhaul the PIP assessment process to make sure it is fit for purpose – and delivered by people who really understand how someone’s mental health problem can affect their daily life”.

Lorna Crofta’s story illustrates this lack of understanding. Crofta, 53, from Worcester, has had severe mental health problems since childhood. She was awarded DLA for three years and then invited to apply for PIP this year. Her application was refused because she failed to attend her assessment – she had received a diagnosis of bowel cancer and the assessment was scheduled just before an operation to have a tumour removed. “I had come to a complete standstill physically, and that had an additional impact on my mental health. I hadn’t even opened my post for weeks and had gone beyond thinking in a rational manner about anything. I would not have been able to handle someone being in my house.” Crofta says she has been living in poverty all her life. Even before losing her DLA, she says, the benefit wasn’t allowing her to do much apart from securing basic subsistence. “My life is just existing between one appointment and the next. I have lost hope. I dread how much worse things will be if my appeal is turned down.”

Lorna Crofta in Worcester. Photograph: David Sillitoe/The Guardian

The shadow work and pensions secretary, Debbie Abrahams, has seen first-hand some of the hardships disabled people are facing as a result of the government’s welfare reforms. “The number of cases I get, not just in my constituency but right across the country, is shameful – and shameful on the country as a whole,” she says, from her constituency office in Oldham. The system, she argues, is designed to put people off and to stop them claiming, “and, unfortunately, it’s working”. Abrahams adds that the assessors need to be held to account: “The fact that two-thirds of assessments are overturned on appeal just shows the fact that it is a warped system.”

The DWP responds: “PIP looks specifically at how someone’s life is affected by mental health, unlike the old system, which did not sufficiently recognise mental health problems.” They add that there are now more people with a mental health condition receiving the higher rates of PIP than their DLA equivalents. “PIP ensures that mental health conditions are given the same recognition as physical ones. It does this by considering how impairments affect a person’s life, rather than labelling individuals on the basis of a condition.”

My life is just existing between one appointment and the next

In February, the DWP was advised by judges at the Tribunals Service (the branch of the Ministry of Justice that oversees tribunals and adjudications) to award more points on the mobility assessment of the claim if people suffer from “overwhelming psychological distress”. However, because of concerns that these changes would cost an extra £3.7bn by 2022, the government enacted legislation reversing the judgment: it altered the mobility criteria to exclude people who had psychological distress – specifically, psychological distress caused by following the route of a familiar or unfamiliar journey when travelling alone. The move will mean that 292,500 claimants will no longer be entitled to any mobility component, which could affect people with a wide range of conditions including learning disabilities, autism, schizophrenia, anxiety conditions, social phobias and early-stage dementia. The government argued that the judgment had “interpreted the assessment criteria for PIP in ways that are different to what was originally intended”.

In April, Valerie Grant, 73, killed herself after her severely autistic son was told he did not qualify for disability benefits. Her death came after a UN report, published in November 2016, concluded that the UK government has failed to uphold the rights of disabled people, a verdict the UN reached again this August. Areas of concern highlighted in the UN’s report are high levels of poverty for disabled people and their families and reduced standards of living as a result of multiple welfare reforms and benefit cuts. One of the welfare reforms highlighted for criticism is the criteria used to assess people for PIPs.

In response to the UN’s findings, the DWP said: “We’re disappointed that this report does not accurately reflect the evidence we gave to the UN, and fails to recognise all the progress we’ve made to empower disabled people in all aspects of their lives.” It added that the government spends over £50bn a year to support disabled people and those with health problems and that “it is encouraging that almost 600,000 disabled people have moved into work in the UK over the last four years”.

Abrahams says that Labour, if elected to government, would aim to scrap both the Work Capability Assessment, the ESA and the PIP assessment, and devise a system that doesn’t look for ways to stop someone’s support. She says: “First of all, we should recognise and value what our social security system is for, and I make it absolutely clear it should be like the NHS. It is there for everyone in their time of need and we should value it.” In the meantime, disabled people will have to continue to battle the DWP for access to benefits.

O’Connor says he has experienced financial hardship since losing his benefit, but that has been mitigated by the fact that he is approaching state pension age, and the fact that he receives money from private pensions. “I’m very lucky that I’m in a situation where I will not be made homeless, but, even if I was, I still wouldn’t give up. They could sanction me to death, but I will not be doing their job for them; I will not be killing myself.”

In the UK, the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international suicide helplines can be found at www.befrienders.org.