The piece below was written in February 2025 and entered into the 2025 Curae Prize, which is for writers who are also unpaid carers. It hasn’t made the shortlist, but I remain proud of it so am sharing it today (1 May 2025). Congratulations to everyone who has been shortlististed; I’m looking forward to reading your work when it is published.
Have you ever heard a politician attack a section of society and felt your blood run cold? Read a quote from a government minister and thought to yourself ‘oh shit, they’re talking about me’?
I hadn’t, until recently. As a white, middle-aged man, I’m usually insulated from the rhetoric of populists. However, in addition to being white, male and over 40 I am also autistic. In 2023, I became unable to work because I was burned out by decades of masking my neurotype at work, in social scenarios and by the fallout from my diagnosis, which I had received two years earlier. On top of that, my wife’s health issues were becoming chronic, and my son’s additional needs were and are too much for her to manage alone.
So, I gave up work and became my wife’s carer, plunging our family into the world of Universal Credit. In December 2023, the Department of Work and Pensions also assessed me as having a “Limited Capacity for Work Related Activity”, which was a bit of a shock after 27 years in the workplace. It was, however, fair enough. When I sat down and thought about my working life, I noticed a clear pattern. If I stayed in a job long enough, I became ill. Sometimes it was called “stress”, other times the label was “depression”. Occasionally, both came up at once. Now I understand I’d reached a state commonly referred to as “autistic burnout”. Each time, I’d got just well enough to go back to work but now that wasn’t an option.
This ” Limited Capacity for Work Related Activity” is what has made me a target for both the Chancellor, Rachel Reeves and Liz Kendall, the Secretary of State for Work and Pensions. Writing in a tabloid newspaper in January 2025, Reeves said: “as a country we cannot keep footing the bill for the spiralling numbers of people out of work. The UK is the only major advanced country whose employment rate has not returned to pre-pandemic levels. We’ve got 2.8 million people not working due to bad health.”
A fortnight later, Kendall reinforced Labour’s stance on disability benefits, telling ITV “I have no doubt, as there always have been, there are people who shouldn’t be on those benefits who are taking the mickey and that is not good enough – we have to end that.”
Ms Kendall is entitled to her view, but her own department’s annual report on fraud and error in the benefits system records the amount of people who fraudulently claimed Personal Independence Payment (PIP) during the 2023-24 financial year as so small that statistically it registered as ‘zero’. The total ‘error rate’ for PIP – the main disability benefit in the United Kingdom – was just 0.4%.
Anyone who thinks being awarded PIP is ‘easy’ has obviously never applied for it. Let me walk you through the renewal process for a claim I began in 2021.
The initial stage was a 24-page form, which needed to be completed in longhand before a specific date. This covered a range of activities which form the Daily Living component and two questions around mobility. The form is completed and returned on 5 November 2023 (well ahead of the deadline) with accompanying medical evidence.
My documentation was reviewed and DWP decided a telephone assessment was required. Telephone calls are extremely difficult for me and always have been. This was recorded on the renewal form, but no alternative offered. The assessment was eventually scheduled for 29 May 2024, but the Health Professional tasked with carrying it out was off sick. I agree to wait 20 minutes to see if another assessor is available. After almost an hour, the independent contractor doing this work on DWP’s behalf calls back to ask if I can be on ‘standby’ for the entire day. When I explain this isn’t possible, this is logged as “rebooked as claimant couldn’t wait”.
On 18 June 2024, the telephone assessment is carried out by a former paramedic. This takes almost two hours and by the end of it I am shaking like a leaf and sweating profusely although this, of course, is not apparent to the assessor. In the subsequent report, I am awarded zero points for either component, where I had previously had eight points for Daily Living and ten for Mobility.
On 21 June 2024, DWP ends my claim for PIP with immediate effect, based on the telephone assessment.
My response is to submit a 16-page request for a Mandatory Reconsideration of my case. This includes a latter which highlights 35 separate areas where I consider the decision to be flawed and copies of various items of correspondence, including the Work Capability Assessment and a letter from a charity which was providing me with counselling.
On 29 August 2024, DWP confirms that the Mandatory Consideration has been completed. I am awarded two points for one of the Daily Living elements, which is insufficient to qualify for PIP.
An appeal is lodged. DWP responds to it at the last possible moment, but I don’t receive my copy of the documentation until I speak to a manager who requests a reprint. This arrives a few days later; the original about a week after that.
On 18 November 2024, I submit my response to DWP’s evidence bundle, setting out a series of counterarguments across a six-page document which is later called ‘remarkably lucid’ by the doctor in attendance at my appeal hearing.
Fast forward to 11 February 2025, four days after Liz Kendall’s interview with ITV. A First Tier Tribunal consisting of a judge, a doctor and a disability expert ruled that the Department for Work and Pensions (DWP) had made the wrong decision when stopping my claim for PIP, awarding me nine points for Daily Living and ten points for Mobility. This qualifies me for the standard rate for both elements of this benefit; DWP now has to be any money I would have been due between 21 June 2024 and the hearing on 11 February..
When first claiming PIP, I had to go to a Tribunal on that occasion too which suggests that if anyone is “taking the mickey”, it is Liz Kendall’s department. There were 364 days between my initial phone application for PIP and the first Tribunal, during which time I was twice assessed as scoring zero points in respect of the qualifying criteria. When it came to renewal, there were ‘only’ 233 days between DWP ending my claim and it being reinstated, which might be considered an improvement until you remember that DWP had my renewal paperwork for eight months before erroneously deciding that I no longer needed the support I had already proved a requirement for. If you start counting from the date I signed and returned the renewal form until the day my appeal was heard, what should have been a straightforward matter took 464 days to resolve. Almost a fortnight on, I am still waiting for DWP’s letter confirming what is due to me and when.
How much time and money does DWP burn every year preparing for these Tribunals? Reducing the number of cases which go to appeal would be a win-win. Approximately 70% of hearings result in victory for claimants, according to Disability Rights UK. Claimants must be provided with hard copies of evidence by post, where both DWP and the Tribunal have electronic copies. For my second hearing, this wasn’t done in a timely manner, so I chased the file up and ended up with two copies (the ‘original’ arriving after the copy I asked for). My file was 225 pages long, so that’s a lot of paper and ink going to waste.
In 2022, then Minister of State, Chloe Smith, conceded in a written answer to a parliamentary question that in more than half of all the PIP Tribunals which see a DWP decision overturned, “the Tribunal reached a different conclusion based on substantially the same facts”.
To Liz Kendall, I say ‘that is not good enough – we have to end that’.
The frustrating thing is that Labour know this. During campaigning for the 2024 General Election, Angela Rayner discussed her lived experience as a parent of a PIP claimant on the BBC’s Access All podcast:
“We are committed to reviewing it… and it’s so bureaucratic, it’s almost impregnable. And it’s awful to have to go through that. I understand intimately the challenges that many people are facing at the moment. And this is about it being inaccessible as opposed to being accessible and that’s what we have to change, a cultural change, but also the system has to change because at the moment it is not working – the delays that people are facing, whether it’s a work capability assessment or whether it’s PIP. The delays in that, the appeals and the amount of people that have to go through appeals to then be successful, which shows again an example, that the system isn’t working for people.”
I find it incredibly depressing that this anti-claimant language is coming out of a Labour government. It was Clement Atlee’s post-Second World War Labour administration which established the ‘welfare state’ as we know it today by standardising benefit rates and setting up the National Health Service. According to the party’s own website “Labour has changed Britain for the better, through the most progressive governments in our country’s history”, but I fail to see what is progressive about ‘punching down’ and targeting the sick and disabled to reduce spending.
When Rachel Reeves complains about “spiralling numbers of people out of work” and Liz Kendall declares “there are people who shouldn’t be on [disability] benefits who are taking the mickey”, who are their messages aimed at? Perhaps they are designed to placate voters who would instinctively vote Conservative but turned away from a clapped-out and chaotic Tory Party out of a desperation for something – anything – to change. By the 2024 General Election, the United Kingdom was in a significantly worse state than it had been when David Cameron became Prime Minister in 2010. Labour knew this, of course, and surely had plans in place to tackle some of the issues. It is possible that the mess left behind by the outgoing government was somehow even greater than had been envisioned and this has made the Starmer Government’s task harder still. But trying to rebuild a broken nation is a bit like trying to do a three-point turn in an oil tanker. On someone’s driveway. In a cul-de-sac.
Perhaps, by the next Election, the oil tanker will have got back onto the main road. There will have been some collateral damage of course but whether it equates to tyre tracks in a couple of flowerbeds or taking out the side of a house remains to be seen. Without the ‘power steering’ provided by a friendly mainstream media, the Labour top brass have clearly decided that, to keep the Daily Mail and Reform UK off their backs, they need to chuck some red meat their way occasionally. That informs the pejorative language choices in newspaper columns and television interviews and isn’t limited to disability benefits. On immigration, Labour doesn’t talk about establishing safe, legal routes asylum seekers can use to start their claims, or of clearing the backlog of cases stuck in the system. Instead, it declares it wants to “smash the gangs” and make it virtually impossible for anyone who arrives in the UK on a small boat to become a British citizen.
It is so one-dimensional. Imagine being doorstepped and the canvasser saying
‘No, we can’t levy a windfall tax on oil and gas producers or leave the Winter Fuel Allowance alone. And for God’s sake don’t ask us to do anything about Brexit! But we will demonise the sick, the disabled and desperate brown people. Can we count on your vote?’
Rachel Reeves is a year older than I am; Angela Rayner was born a week before me. Our childhoods were all spent in Thatcher’s Britain; we came of age during the Cool Britannia phase of the first New Labour government. Surely my conviction that the Blair / Brown era improved people’s lives isn’t just nostalgia for lost youth?
With the thumping majority the current administration has, they might have pushed through a radical programme of legislation. Instead, I have watched aghast as a Labour Chancellor impoverished pensioners and one of her cabinet colleagues used aggressive language to target the vulnerable. Surely this is the opposite of what the Labour Party should stand for?
It could be argued that, by moving into a roughly centre-right position, Labour were just doing what they had to. By October 2024, seven European Union members – Croatia, the Czech Republic, Finland, Hungary, Italy, the Netherlands and Slovakia – had far-right parties in government. France and Germany have their own issues; Alternativ fur Deutschland won the second largest vote share in the recent General Election in Germany. In the United States, figures close to President Donald Trump have been seen giving ‘fascist’ salutes and when he went to Washington, India’s Prime Minister Modi aligned himself with Trumpism, declaring he intended to “Make India Great Again”. If politics is shifting inexorably to the right, to the point where even a nominally left-wing party such as Labour is pursuing policies even Thatcher would have rejected, then I fear for my children’s future.
Labour promised “change” in their pre-Election messaging. There wasn’t much in Reeves’s and Kendall’s pronouncements which was different to what went before. It might take a long time to turn around an oil tanker, but seven months should be long enough to put it into gear.
I might be worrying over nothing, I suppose. The tough talk coming from the Treasury and DWP might lead eventually to positive change and maybe even some money saved. Reeves and Kendall are right, up to a point. There is a problem with the benefits system in this country. It just isn’t where they said it is.
For the last decade, Universal Credit has been taking over the social security landscape in the way a thick fog rolls in off the sea. It has replaced or is replacing a huge number of different benefit schemes, including Housing Benefit, tax credits and support for the unemployed. The idea is that claimants apply once and are awarded an appropriate level of financial assistance based on their individual circumstances. In theory, this should make life easier for claimants and the administration of the system more efficient.
The reality is somewhat different. The same DWP report which recorded PIP fraud as 0% reported that the equivalent figure for Universal Credit was 10.9%. Because it has such a vast remit, the administration of a Universal Credit claim can be quite onerous. Claimants must keep records of childcare costs, declare educational grants, provide evidence of their rent and any number of other things. Errors can occur on both sides of the calculation so when accidental mistakes are added, the overpayment rate for Universal Credit was 12.9% in 2023-24. That was 32 times higher than the equivalent figure for PIP, which was 0.4%. As the old-style benefits are withdrawn, literally everyone who applies for social security in the United Kingdom will have to apply for Universal Credit. And yes, some applicants will try to “take the mickey” but they won’t need to game the disability element to do so.
Of course, I say all this from a privileged position. I have enough knowledge of the system to stand my ground, a loving and supportive family who helped me cope with the mental health issues triggered by my PIP claim being wrongly terminated and a secure social tenancy which wasn’t adversely affected by the loss of PIP. At some point in the coming weeks, a substantial payment will drop, probably without warning, into my bank account. But thousands of disabled people don’t have the ‘happy ending’ I did. They get worn down by the bureaucracy, or struggle to show a monolithic agency why they need and deserve support. Or perhaps, terrified by the state of the world and the aggressive rhetoric uttered by senior members of the UK Government, they just don’t start the process, out of fear of being labelled a ‘fraud’ or a ‘scrounger’?
That is not good enough – we have to end that.