‘Like a puppet on a string’: The ‘sick note’ culture, from those who live it

Since the appointment of PM Rishi Sunak in October 2022, claimants of disability benefits and those who are unable to work due to mental ill-health, physical health difficulties or neurodivergence have been increasingly targeted as the cause of the UK’s economic issues.

Benefits, fitness for work, and long-term sickness – what’s happening?

Last year, the PM argued that providing for the number of  people who are not working and claiming disability benefits was ‘not fair on taxpayers’ and ‘not good for our economy’. The following month, he emphasised his belief in the ‘inherent dignity’ of a good job, and described the number of people of working age who are not currently working as a ‘national scandal’ and an ‘enormous waste of human potential’. Detailing his plans to prohibit GPs from issuing sick notes in order to reduce the number of people signed off work, Rishi Sunak, in a speech made last Friday, expressed concerns about the UK’s ‘economically inactive’ population, claiming that the increase in people off work due to mental health issues was the result of ‘over-medicalising’ the ‘everyday challenges and worries of life’.

It’s becoming harder for benefit claimants to receive the support they so desperately need, too. Earlier this month, Resolution Foundation, an ‘independent think-tank focused on improving the living standards of those on low-to-middle incomes’ published research into the impact of the Universal Credit system roll-out, which has been replacing legacy benefits since its introduction in 2013. According to the research, disabled people – and in particular those who are single, do not have a full-time carer and are unable to work due to their disability – can be ‘around £2,800 per year worse off on Universal Credit in 2024-25 than on legacy benefits’. This places people unable to work due to a disability or health condition at an increased risk of poverty, especially at a time when the majority of those applying for Personal Independence Payment (PIP) do not receive the benefit, and planned changes to Universal Credit will prevent claimants from receiving additional income to support their disability or health condition unless they are also in receipt of PIP.

It’s a frightening time to be someone claiming benefits, and a frightening time to be someone who cannot work. We’re watching the prime minister of the UK drip feed a nation with an extremely ableist rhetoric intended to radicalise, scapegoat and ostracise. We are being demonised for our suffering – and for those of us who experience mental ill-health and distress, our suffering has been openly ridiculed and minimised. The narrative that disability benefit claimants are lazy, fraudulent or ‘leeching’ from taxpayers is louder and more unashamedly public than ever.

Who is affected, and what’s the effect?

The real depth and scale of the impact of the Government’s torrent of criticism towards disabled people is difficult to measure, and may not become apparent for many years, but for people like me and those whose words are collated in this blog – people who rely, or have relied on benefits to live – the impact is both immediate and immense.

I started receiving PIP aged 18 whilst living in a therapeutic community for people with eating disorders, having spent the last five years of my life surviving incapacitating mental illness and the last two years of my life detained in psychiatric hospitals. I hadn’t been able to work before this point and was still not well enough to work, so PIP helped me to engage with the world in ways I couldn’t have done otherwise, for instance, by enabling me to study at college. After COVID-19 lockdowns had ended in 2021, I applied for Universal Credit, which provided me with the means to start a degree with the Open University and live independently of the therapeutic community. Over the next two years, I tried (and struggled) to hold down work – benefits kept me financially secure whilst I attempted to find a job that I could do, and that would employ me despite my patchy employment history, lack of experience and lack of qualifications at GCSE level and above.

My PIP claim was reviewed last year and, after a brief phone conversation with a medical professional I had never met, it was decided that I was no longer eligible for PIP. At the time I was a part-time student, which meant I was only entitled to Universal Credit if I was in receipt of PIP –  without PIP, I was not eligible for Universal Credit, and all the income I had was gone. Just like that. Without any notice, without any warning, without any support. A complete stranger had decided that I didn’t deserve money to live on.

Unfortunately, I’m not alone in being unexpectedly removed from benefits. I connected with five current or previous claimants through social media, each with a story to share about their experience of claiming benefits, like Katie* – Katie isn’t sure why she was taken off her PIP a few years ago, because she was never given an ‘official reason’. She believes they decided, without speaking to her, that she was no longer in need of it. At the time, PIP was Katie’s only income, and having it removed left her in ‘great financial difficulty’. Katie says being taken off PIP made the issues that had meant she had to apply for PIP in the first place worse: ‘I did feel awful. It was like my issues were being minimised even though they affected me day to day significantly’.

Paula also stopped receiving benefits several years ago, but this took place at her own request. Despite experiencing significant mental ill-health leading to hospital admissions and a placement in a therapeutic community (where she was receiving treatment at the time she applied for Universal Credit), Paula felt guilty about being in receipt of benefits as a result of negative external perceptions of benefits, particularly revealed in posts and comments on social media. And it’s not hard to see why – scrolling through the comments on a recent BBC article into Universal Credit (UC) and long-term sickness, perceptions of those receiving benefits can be extremely dismissive and cruel, with many commenters particularly targeting those who are out of work due to mental ill-health:

Selection of screenshots showing comments on a news article about Universal Credit and long-term sickness, demonstrating dismissive and cruel attitudes towards people receiving benefits. Comments include:

"Universal Credit payments are too generous and especially so for people pretending to be 'sick'."

"Who doesn't have ADHD or anxiety these days. The 2024 illnesses of choice to avoid work"

"Too many people imagining that they have mental health problems, I believe"

After just five months of receiving UC, Paula wrote that she felt she ‘didn’t deserve’ benefits in her online journal; without any further assessment of her needs, her claim was immediately cancelled.

Universal Credit “journals” are a part of the online UC system where claimants can make contact with their work coach. The journal isn’t computer operated; messages are seen and received by real people working for the DWP. This means that a human being read Paula’s message, and, rather than instigating a welfare check or reassuring her that the benefits system was created to support people in her position, they decided that her claim should be cancelled. The lack of compassion, empathy or understanding in this decision is horrifying and reflective of a government that, in the words of our prime minister, aims to prevent ‘economic inactivity’ and stop young people getting ‘parked on welfare’.

For those who are ‘parked on welfare’, the threat of having benefits removed is real and constant. Phoenix, who is unable to work because of his disability, recently had his benefits taken away from him because of a prolonged hospital stay. This is standard practice for PIP recipients – if a claimant is admitted to hospital for a period of four weeks or more, their claim stops until they are discharged (see here for more info).

When Phoenix started receiving PIP in 2020, he received no other help or additional support – but as soon as they wanted to remove his benefits, Phoenix described receiving pressuring letters ‘every other day’. Phoenix believes his health deteriorated because of both the toll of having his PIP taken away from him, and the stress of being a benefit claimant: ‘My mental health got worse because of PIP for a while, because of just the way that I was treated – they treated me like shit. The whole process made me feel like I was begging. It was awful. I hated it. And I have to go back on it when I leave – I’m dreading it. I honestly feel like the PIP process made me more sick.”

Phoenix wasn’t the only person I spoke to who found the process of claiming for PIP or other disability benefits distressing in itself. Katie explained that although she could have appealed the DWP’s decision to remove her benefits, she ‘didn’t want to have to go through the process of being degraded all over again’. Mae, who has been a Disability Living Allowance and PIP claimant since she was 15, described the process of applying for and being on benefits as ‘horrible’, ‘invasive’, and ‘not easy at all’. She also feels aware of the threat of having her benefits removed: ‘My PIP was reassessed only a couple of months ago. The stress and terror of having it taken away was awful. Because it’s not just “money” (it’s really not even that much) – I rely on it to keep myself as well as I can whilst being at uni. As an autistic person who also has mental and physical health problems, working whilst being at uni just isn’t possible for me, and without my PIP, I wouldn’t be able to afford to be at uni.’

It’s no surprise, then – considering the humiliation, terror and disempowerment that the DWP puts disability claimants through – that some people choose to take themselves off benefits, despite being in desperate need of them. Lucy, who was a PIP claimant for 8 years, chose to come off benefits recently when the DWP informed her that her PIP was due for a review. She felt that, despite the complexity of her needs and experiences, the DWP would now view her as ‘fit for work’, and her entitlement would end: ‘When I left inpatient care, I ended up with no adult mental health or social care team, which I knew meant I wouldn’t be able to get the evidence that [the] DWP would ask for at my review. My experiences have led me to need a different kind of employment – when you apply for benefits, nobody tells you that 9-5 office hours might not work for you because of how complex your needs are, nobody suggests self-employment or  running a small business; nor do the DWP or care teams really actively support and help people to do so. Now I’m in a position where I’ve got no employability skills and no experience because I’ve been institutionalised and out of work and education for 10+ years, but I know my needs don’t fit the parameters of what PIP would assess – so in some ways I’m not eligible, but I should be. If I turned around and said to PIP, you’re lucky if I can get a full night’s sleep once a week, you’re lucky if I can go shopping for basics or take the dog for a walk, I’d still be seen as ‘fit for work’.’

Lucy feels that the benefits system as a whole is unable to meet the needs of those who are relying on it for income, and fails to adequately assess people’s needs in the first place: ‘It feels like you’re a puppet on a string. If the DWP were really trying to support people, they’d be helping people into meaningful occupations that actually meet claimants’ needs on an individualised basis. They’re not looking at the person as a whole, who needs support and time to find something meaningful that may also generate income for themselves. That’s what getting people ‘back to work’ should be about. Instead, they just give you the money and then you’re waiting year after year for when the next review will happen. It’s like dealing with an abusive partner – knowing that they’re out there, watching, and could contact you at any minute to turn your world upside down and take away everything you’ve got.”

One of the most abhorrent things that has come out of our government’s latest deluge of abuse directed at the disabled and those who experience mental ill-health and distress is the pigeonholed image of young people out of work due to long-term sickness depicted by Rishi Sunak at his speech last Friday, who were described as ‘a generation of young people [sat] alone in the dark before a flickering screen watching as their dreams slip further from reach every passing day’.

It’s the typical Conservative ‘snowflake’ insult, intended to generate a combination of hatred, pity, disgust and shame. It’s language that portrays those of us who cannot work as lazy, self-absorbed, and responsible for our own “imagined” illnesses; if only we’d just turn off the telly, turn on the lights, and start providing for ourselves. Once again, we’re viewed as synonymous with frauds and parasites; not content with sucking the light out of our own lives, we must make it the problem of the good old tax-paying British population.

The reality for those of us who claim benefits and/or who are unemployed due to disability or ill-health could not be further from the prime minister’s words. For most of us, like Mae, whose benefits currently enable her to study at university, being on benefits creates a platform from which we can build or rebuild our lives – whilst I was receiving PIP, I had the capacity, energy and finances to co-establish an organisation for young people who have experienced iatrogenic harm. I was an organiser for a vigil to commemorate the closure of an abusive inpatient unit. I co-wrote and illustrated a book which amplified the voices of ex-inpatients at children’s psychiatric hospitals. I worked different jobs, studied academic courses, started my own novel, and generally – using Rishi Sunak’s words – was as “economically active” as I have ever been, far more so than I am now that my benefits have been taken from me.

Nobody wants to be the victim of an oppressive system that makes those who rely on it believe they are a burden to the society we live in. People don’t claim benefits because they want to – disability claimants need the income they receive from benefits to survive. Pushing people off benefits isn’t going to fix a broken economy, and it certainly won’t help the country “level up”; the only way the welfare system can be effective is if the systems that surround it – social care and the NHS – are effective, too.

A growing population of people who are unemployed due to long-term sickness doesn’t reflect a growing population of layabouts and cowards. It reflects a government that has failed to protect, improve and expand its national healthcare to meet the needs of a suffering population.

*Some of the names of those whose words are included in this blog have been changed to protect their identities.

Nima Cas Hunt (she/her) is a writer and co-founder of non-profit group First Do No Harm. She is committed to ensuring the voices of those with lived-experience of mental ill health and distress are actively involved in the design of mental healthcare, and a firm believer in the power of services that move away from the pathologising of distress. Her Twitter/X is @nimacashunt.