Amanda has experienced difficulties with her mental health since she was a teenager. In 2016, when she was 26, she was having a particularly difficult time with anxiety and depression, as well as the chronic pain condition fibromyalgia.

Amanda’s mental health nurse suggested she apply for PIP. Her mental and physical health were creating additional barriers in her day-to-day life, including causing her difficulties with her job that were leading to her hours at work being cut. PIP could help her address the financial impact of these barriers.

Amanda hadn’t realised when making the application that she would have to attend a face-to-face assessment:

Things got worse during the assessment: “The assessor didn’t seem to listen to anything I said. I felt like she had already decided I was making things up. I became more and more distressed and upset as I realised what she was doing - discounting everything I said and asking questions in a way that skewed the answer in an unfair way. I began to cry.”

Amanda felt her integrity was being questioned:

Despite Amanda’s obvious distress the assessor pressed ahead with her questions:

Waiting for a decision on her PIP application, Amanda’s mental health spiralled: “The stress of the assessment on top of what was already going on in my life was too much. I tried to take my own life less than a month later and ended up in hospital for a week.”

It was while in hospital that Amanda heard back about her application: “I received a text to say that I had been granted the lowest level of PIP. It was too late then though – I had made a serious attempt on my life and had thought I was going to die.”

Amanda doesn’t think the DWP knows the details of what happened to her, but she isn’t convinced that, under the current system, it would have made much difference to tell them: “At the moment it seems that’s just the way it is, and everyone knows that this is the impact it has. And it feels like - whether it’s true or not - they don’t care.”

Chris receives Employment and Support Allowance (ESA) because his mental health makes it hard for him to work. In 2019, when he was 37, his ESA suddenly stopped: “I’d not had a letter to say why. I only realised when I checked my bank account and saw I had not received any payments for over a month.”

When he contacted the DWP he was told they couldn’t see why the benefits had stopped but that there was a note on his file saying Chris needed to call a particular member of staff: “I contacted her and she told me there was a fraud investigation going on and until it was resolved all my benefits would be stopped. And that was it.”

Chris then realised that other support such as his Housing Benefit had also been stopped. He then received a fine for ‘lying’ about his eligibility for free prescriptions. When he queried this, he was told to call the same member of staff. “This time she told me that I had over £30,000 in savings that I'd hidden from the DWP and I'd be facing a prison sentence.”

Chris had to send years’ worth of bank statements to try to demonstrate that he didn’t have anywhere near that amount in savings: “They wouldn't tell me anything more about the money I supposedly had but expected me to prove I didn't have it.”

The situation took a huge toll on Chris’s mental health:

A month later, Chris still wasn’t receiving any benefits and hadn’t been given an update on the fraud investigation. He was having to use what little savings he did have to survive. Eventually, after making more phone calls to the DWP, they disclosed to him that someone with his name and date of birth had £30,000 in a Post Office account.

“I said I’d never had an account with the Post Office, and I wouldn’t be claiming benefits if I had £30,000!”

Chris was told he needed to prove that the Post Office account wasn’t his, but it took many more difficult phone calls to eventually achieve this and get his benefits reinstated. Chris put in a formal complaint. He was offered £70 in compensation.

The whole experience had a lasting impact on Chris’s mental health:

Rochelle was receiving Universal Credit when, in 2016 at the age of 22, she applied to study an undergraduate course at university. She informed the DWP through the Jobcentre that she would be studying full-time and would be in receipt of student finance: “They should have reassessed my claim and adjusted it according to the income I would be receiving.”

However, a few months after starting her course, she was told that there had been an error in her payments: “I received a letter from the DWP informing me that they had overpaid me by around £2,000. After making further enquiries about why this overpayment had been incurred, it turned out they had not adjusted my claim for my changed circumstances.”

This came as a huge shock to Rochelle, especially as she had queried the amount of Universal Credit she’d been receiving when she started the course: “The advisor I spoke to at the DWP said I was receiving the correct amount.”

She was told the overpayment would be deducted from subsequent benefit payments in instalments, even though it had not been due to her doing anything wrong.

However, the situation got even worse the following year, when she heard from the DWP again: “I was advised I had been overpaid again by approximately £10,000. This overpayment was due to the DWP losing paperwork I had shared with them, and not communicating that the original overpayment had increased by roughly £8,000.”

With this huge debt hanging over her while she tried to complete her studies and support her three-year-old son, Rochelle’s mental health suffered:

With the support of her university and her local MP, Rochelle did manage to get the DWP to acknowledge that the overpayment was their fault. However, all this led to was £100 in compensation, and she was still required to repay the outstanding debt: “Irrespective of who caused the overpayment, the law says that the person who received it has to pay it back.”

Although Rochelle managed to complete her degree and start a job, she was still living in the shadow of the DWP:

Four years on, Rochelle eventually managed to get the DWP to waive part of the debt, but she is still paying back the remainder, and managing the longer-term impact on her mental health:

Maria was on Universal Credit and wasn’t required to look for a job because of her mental health problems. However, she wanted to work and kept trying to find suitable employment: “I’d be in a job for about nine months or so and then the wheels would just come off and I’d end up with a catastrophic crisis and find myself back in hospital.”

In 2018, Maria was 28 and working in a coffee shop when she began to struggle with her mental health again: “The cracks were starting to show and I was thinking I needed to cut down my hours”.

At the same time, the DWP had decided to assess her health again and called her in for a WCA.

Maria became terrified that the DWP would declare her ‘fit for work’ just as she was feeling she needed to step back from working: “I was faced with what seemed like an impossible dilemma - I can’t work because I feel too unwell, but I’m worried I’ll be seen as not unwell enough to stay on my current benefits.”

Worried that she would be left destitute, Maria tried to take her own life:

Due to this this suicide attempt, Maria was in hospital when she was due to have her Work Capability Assessment:

Looking back now, Maria feels that better communication from the DWP could have helped to avert the crisis she experienced: “Having a specific point of contact in my local area, from a team of people who understand mental health would be a godsend. I’ve had good interactions with some individual members of staff, but there’s no consistency.”

Maria feels the constant threat of a difficult interaction with the DWP undermines her efforts to improve her mental health:

As well as the problems with the DWP’s communication, Maria thinks the system is not flexible and understanding enough to provide the support and security she needs: “I want to work but it seems like I’m in this all or nothing situation where I’m either expected to work full-time and be fine or prove that I’m too unwell to work at all.”

Stuart has experienced depression and anxiety since he was a teenager. More recently, he has also been given a diagnosis of autism. In April 2012, when he was 34, he was asked to attend a WCA to decide if he was still eligible for Employment and Support Allowance.

The assessment was conducted by a physiotherapist, rather than someone with mental health expertise. Stuart felt that he didn’t get the opportunity to explain why his mental health made it difficult for him to work, and that what he did say was being twisted: “I felt like they were committed to misunderstanding me from the very beginning.”

A couple of months later, Stuart received the outcome of his assessment - he had scored zero points and had been declared ‘fit for work’, despite additional evidence provided by his consultant psychiatrist and his GP:

Stuart used diazepam to control his anxiety: “My partner doesn’t live with me but she was scared to leave me alone in case I did something dangerous”.

On one occasion he took an overdose of diazepam and ended up in A&E. Although Stuart’s psychiatrist and GP knew about this incident, he doesn’t think the DWP were made aware: “They’ve never understood the impact of all of this.”

Stuart asked the DWP to reconsider the outcome of the assessment, but they stuck with the original decision. He had to take the case to a tribunal, but this didn’t take place until November 2013, causing a long and uncertain wait.

Stuart’s partner, Kat, remembers the day of the tribunal: “It was obvious that Stuart had quite severe difficulties with things like communication and everyday tasks. The tribunal quickly awarded him over 40 points.”

Although this was a huge relief, it also highlighted how unnecessary the previous 18 months of distress had been:

Fortunately, Stuart has had support from advice services with subsequent reassessments and has not had to appeal the outcomes. However, his experience back in 2012 has had a lasting impact:

Even though he now feels better able to navigate the assessment process, he believes it is inherently damaging:

Jane has a number of serious physical health problems as well as mental health problems, including Dissociative Identity Disorder caused by severe early childhood trauma. She had been receiving PIP for many years in recognition of the additional costs she faces. Last year, when she was 55, her benefits suddenly stopped.

She was told that she had failed to return a review form by the deadline. Jane had received this form while she was detained in hospital under the Mental Health Act after a suicide attempt:

The letter informing her that her PIP had stopped arrived on a Saturday: “There was nothing I could do about it that day - I was unable to get hold of anyone for support. On the Monday I also got letters from the council saying my council tax support had stopped as a result. Then later in the week I got a letter from Motability saying I had to return my adapted car.”

This was all immensely distressing for Jane, and it had a devastating impact on her mental health:

It turned out that the DWP had received Jane’s review form but, because they had a three-week backlog of forms to process, they hadn’t seen it before her PIP award ended: “They knew they were running three weeks behind, but rather than checking the backlog for my form they just stopped my benefits.”

Fortunately, Jane had support to rectify the situation: “My advocacy worker called the DWP and told them they had nearly caused my death. After a long conversation they looked at my form and agreed that my award should remain as it was.”

The DWP did seem to acknowledge that the situation should not have played out the way that it had: “They said they would now mark me as a ‘vulnerable claimant’ so that my benefits wouldn’t be stopped without me being contacted, but they already knew that I am easily destabilised and at high risk of suicide.”

These events have had a long-term impact on Jane’s confidence and wellbeing:

Charlie has experienced depression and anxiety for as long as she can remember but had never sought support from benefits. However, in 2012 when she was 27, she also developed physical health problems: “I’d recently lost my job due to my health and so my hand was forced to some extent, but with a physical condition it somehow felt ok to ask for help.”

After applying for ESA, she was asked to attend a WCA. Even though she had mentioned mental health problems in her application, she wasn’t asked about this in the assessment:

Although Charlie was awarded ESA, the experience of this first assessment set the tone for her relationship with the DWP going forward: “Every interaction with them felt so begrudging, as if they were saying ‘you should be grateful for any help you’re getting.”

She was reassessed frequently, sometimes as little as six months after her previous WCA: “It felt like at any moment this support could be taken away from me.”

Some of these subsequent assessments did focus more on her mental health, but this was almost worse than having the subject ignored: “When you’re experiencing mental health problems, you’re often struggling to understand yourself. The invalidation of trying to justify yourself to someone else when you already feel unsure of yourself is terrifying.”

This cycle of reassessments had a significant impact on Charlie’s mental health:

On number of occasions, soon after one of these assessments, Charlie’s distress became so intense that she made attempts to take her own life.

Charlie told the DWP many times about the damage this process was doing to her: “I’d say ‘you do realise what happened after the last assessment?’. Sometimes they would say ‘I’m sorry that happened’ but it never seemed to be logged in a meaningful way. On one occasion I was told ‘well you do have mental health problems - that’s part of the challenges that you’re living with’, so it was excused as just part of my life experience.”

Charlie has now managed to build a career for herself, working in wellbeing and mental health:

In 2011, following a Work Capability Assessment, John’s younger brother Mark was unexpectedly declared ‘fit for work’. He had been on unemployment benefits for many years but had not been expected to work because of his severe depression: “He suddenly had to start going to the Jobcentre for appointments and show he was trying to find a job.”

Mark was very private about any problems he was experiencing, always wanting to sort things out on his own. However, John could see he was struggling: “I knew he was having problems with his benefits, and he’d asked to borrow some money, which I lent him. But he kept everything that happened afterwards to himself, until he died by suicide. He was 43 years old.”

After Mark’s death, John and other family members tried to piece together what had happened: “We discovered that he’d been sanctioned because he hadn’t attended an appointment at the Jobcentre. That led to him and his family having nothing to live on and he had taken loans out."

It seemed that Mark had tried to challenge the sanction before he ended his life: “As far as I can tell, he must have contacted them because there was a letter in response from the DWP asking for proof as to why he didn’t attend the appointment. I can’t know for sure why he hadn’t attended but I would suspect it was because he wasn’t well enough.”

John has no doubt that these issues with the DWP contributed to his brother’s death:

The coroner at Mark’s inquest agreed that the DWP had played a part in his suicide, and John expected this to lead to a response from the department:

John has long-standing mental health problems himself and has had to rely on benefits for most of his life. He knows only too well the type of stress and pressure Mark must have been feeling:

Although John understands why Mark might have found it hard to ask for support, he wishes he’d had the opportunity to help: “If I’d known, I would have tried to sort it out for him. When you’re struggling with your mental health, it can be so hard to get on top of things, and the benefits system is such a hostile and harmful environment.”