Downing Street claimed that “no disability applicant will lose out as a result of the changes to personal independence payment (Pip)” but, in my experience, hardly a day has passed without hard evidence to the contrary. It’s heartbreaking.

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Pip is a benefit that helps with the extra costs of living with a long-term health condition or disability for people aged between 16 and 64. It is gradually replacing the disability living allowance (DLA) but, for many, navigating the new assessment system is an ordeal. Benefit recipients and those acting on their behalf are struggling to ensure that claims are correct and being made in full.

Claiming Pip is time-consuming. The application form is a monstrous 40-page document that needs to be handwritten. And Pip is assessed using a completely different set of criteria to DLA. You now need to score a certain number of points in relation to 12 activities. These comprise 10 daily living activities – including preparing food, washing and bathing, managing toilet needs, dressing and making decisions about money – plus two mobility activities: planning and following a journey, and moving around.

The application usually also requires a face-to-face consultation with a health professional to confirm individual needs.

What I have found particularly hard, in my experience of assisting claimants, is the apparent lack of understanding or empathy from healthcare professionals and telephone representatives at Atos and Capita, the two private companies that carry out the assessments. For someone with a physical or mental health condition, for example, there are challenges involved in simply travelling to the assessment. A client who lives in Cardiff was asked to attend an assessment in Swansea, with no recognition that this could be difficult.

Someone may present as very capable at an assessment but in reality needs a high level of support

Claimants are also forced outside their comfort zone during the appointment. Often they are asked lots of personal questions, many of which they don’t fully understand because they have very little insight into their own health conditions. Someone with a mental health condition may present as very capable at an assessment but in reality needs a high level of support.

At one recent assessment, in a hot, cramped room in Croydon, I had to sit on an examination bed because there were no spare chairs. The heating was stuck on high, so the health assessor had an electric fan on the table. I asked how he could work in such conditions. When our 90-minute assessment drew to a close I overheard him complain to a colleague that he’d had no lunch break.

The following day a support worker came to me in tears after being turned away from an assessment with a client. She was terrified that the client might lose his benefit. He didn’t fully understand the situation and began to behave in a challenging way. We complained and the client eventually received compensation, but many of those affected have no access to professional support, either to help fill in the application form, go to an assessment or appeal an unfavourable decision.

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With all this going on, it is tricky to reassure people – especially those with mental health issues – that their benefits are being properly dealt with, and even more of a challenge trying to explain why it takes so long for the government to process a claim. Sometimes, when a phone call is not enough to allay their concerns, I have to write to them as well, even if there’s nothing new to report.

While it’s easy to understand the role of benefits in ensuring basic conditions for living, people also rely on them to fund activities vital for their quality of life. Pip enables them to take up a hobby, travel to visit friends and relatives, or take part in unpaid voluntary work that can be a route into paid employment.

One recent decision under the new regime meant a man with an acquired brain injury lost his motability car. For him this meant a total loss of independence. Even going to the supermarket is now fraught with difficulty.

The new mobility guidelines make it harder in particular for people who experience psychological distress when they undertake a journey, perhaps as a result of phobias or anxiety, to have this taken into account as the basis for a claim.

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The changes mean that those with learning disabilities, autism, schizophrenia, anxiety disorders, cognitive disorder due to a stroke, dementia, depressive disorders, post-traumatic stress disorder, phobias and OCD will all be affected. How can the government claim nobody will lose out?

Regard is offering advice and support to other providers struggling with the new process and its implications for individuals they support. Official government guidance for Pip can be found here.

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