Not Benign Exercises

Chaminda Jayanetti writes:

Thousands of people with cancer, cardiovascular disease and respiratory diseases, and more than 200,000 people with arthritis are among the 1.3 million who could be rendered ineligible for the daily living personal independence payment (PIP) payment by the government’s disability benefit plans, according to official data.

Data published by the Department for Work and Pensions (DWP) this week, in response to a Freedom of Information request from disability rights campaigner Martin Bonner, revealed that 87% of the 1,283,000 working age people currently receiving the standard daily living PIP payment scored less than four points in each of the ten categories in the PIP assessment – meaning that they would no longer qualify for the daily living PIP benefit under Labour’s proposed new rules.

A further 13% of the 1,608,000 working age claimants receiving the higher, ‘enhanced’ daily living PIP payment would also fall foul of the planned changes – giving a total of about 1.325m current PIP claimants who would be rendered ineligible by the DWP’s proposals.

The Office for Budget Responsibility (OBR) – the government’s independent financial watchdog – suggested that around half of those hit by the rule change would adapt their PIP applications, or appeal rejections, in order to meet the new requirements, but the OBR itself described this forecast as a “highly uncertain judgement”.

The government’s plans, published last month in a DWP green paper, are set to be voted on by MPs this summer without any formal public consultation, sparking a furious backlash from disability activists and some Labour MPs. If they are approved by parliament, the changes will apply to new applicants from November 2026, and from then on will affect existing claimants when their claim is reviewed.

“These figures show how absurd it is to exclude the changes to the PIP assessment from the government’s consultation on the green paper proposals,” said Julia Modern, senior policy and campaigns manager at disabled people’s organisation Inclusion London. “It is unacceptable that a policy change this big – effectively wiping out the standard category of PIP daily living – is being implemented without consultation. This is not a minor ‘technical’ change: it is a serious threat to a wide range of disabled people living with substantial support needs.

“We are deeply disappointed that this Labour government is repeating past mistakes, proposing exactly the kind of ‘reforms’ that previously caused deprivation and despair in the disabled community while failing to save the government money because of knock-on effects on health and social care budgets. Taking money away from disabled people does not mean our needs will go away.”

PIP is the main disability benefit in England, Wales and Northern Ireland, and is not restricted by income or work status.

At present people qualify through an assessment that scores applicants under a series of ‘activities’ that measure the severity of their illness or disability. Ten of the activities concern the PIP daily living payment, while another two decide who gets the PIP mobility payment.

Applicants must score at least eight points in the daily living activities to get the standard daily living payment, with 12 points qualifying them for the enhanced payment. The same structure applies to the separate PIP mobility payment.

At present these totals can be accumulated across different activities – if someone scores two points in four different daily living activities, their eight point total will qualify them for the standard daily living payment. But under the DWP’s plans, they would have to reach those totals while scoring at least four points in any one specific daily living activity.

Despite claims that PIP has become too easy for people to claim, only about 54% of applications are successful. The government claims the new rules will ensure PIP only goes to people with serious disabilities. But someone who needs help to cut up food and wash their hair, and also needs an aid to dress and to be able to speak or hear, would currently qualify for PIP but would miss out under the proposed system.

DWP figures released in response to an FOI request from the Benefits and Work website show how many people with different disabilities and illnesses currently receive the PIP daily living allowance having scored under four points in all categories. They include:

• 214,000 claimants with arthritis – that’s 77% of all arthritis claimants receiving the daily living allowance
• 38,000 with cardiovascular diseases – 62% 
• 45,000 with respiratory diseases – 55% 
• 38,000 with multiple sclerosis and neuropathic diseases – 48% 
• 23,000 with cancer – 33% 
• 11,000 with cerebral palsy and neurological muscular diseases – 24% 26,000 with psychotic disorders – 23%

The figures also indicate how many new applicants with different conditions would over time fail to qualify for PIP from November next year if the plans are voted through.

The ‘four-point rule’ would also have a big effect on people with mental illnesses – a group of claimants that have faced a media and political onslaught. Around 282,000 claimants with anxiety and depression would fall foul of the four-point rule.

The DWP data only shows the main condition claimants are recorded as having – in practice many have more than one condition, and claimants may have both mental and physical problems.

“The latest DWP data on PIP highlights the ongoing challenges faced by people with mental health problems in accessing the support they need to live with dignity and independence,” said Nil Guzelgun, policy and campaigns manager for mental health charity Mind. “Benefits like PIP are a lifeline for people with mental health problems, helping them to pay for support like taxi fares when public transport feels impossible, help with chores due to fatigue, or food costs due to difficulties making food from scratch. 

“The proposed changes will mean that people whose mental health problems impact numerous elements of their daily lives will be left without the vital support they need. These reforms will only transfer costs and pressure to other government departments including already stretched mental health services by exacerbating poverty and worsening the nation’s physical and mental health.

“Behind every statistic is a real person struggling with their mental health and terrified by the government’s plans. We need urgent action to protect and improve support, not take it away. We are calling on the government to stop these planned cuts and instead commit to meaningful involvement of disabled people in shaping future benefit reforms.”

Around 480,000 of those currently receiving the standard daily living payment don’t receive the PIP mobility payment. This means that under the new rules, they would no longer receive any PIP benefit after they have been reviewed.

Moreover, the green paper outlined long-term plans for the health element of universal credit, which is paid to disabled people on low incomes and usually out of work, to be based on the reformed PIP assessment – including the four-point rule. This means that many disabled people will find themselves ineligible for any disability benefits at all – DWP figures published in response to a separate FOI request show that among all those receiving the UC health payment, 60% also receive the PIP daily living award, and of these, nearly 70% did not score four points in any daily living activity in their assessment.

“It is a particular problem that many of the people affected do not receive the PIP mobility component,” said Inclusion London’s Modern. “This is because PIP exempts recipients from the benefits cap. If the consequences of the policy change are that a large number of people lose PIP entirely and become exposed to the cap, this will increase homelessness among disabled people – already much higher than for non-disabled people – even further.”

Fingers Walker, spokesperson for grassroots disability activist group Crips Against Cuts, said: “Why, we wonder, is a policy supposedly intended to get claimants in all categories back to work almost exclusively targeting the most disabled people? There is zero fraud in PIP claims, according to the DWP, yet PIP claimants face exclusion from lifesaving income because [work and pensions secretary] Liz Kendall thinks it is us who are ‘taking the mickey’.

“The green paper was published with unseemly haste in a scramble to meet the chancellor’s Spring Statement. It has nothing to do with helping disabled people back into the work as a “moral” issue.  It is ill thought out; inconsistent and contains a number of inaccurate and misleading statements.

“The DWP has been forced to retract statements twice by the Office for Statistics Regulation for publishing wildly  exaggerated figures about the increase in the numbers of claimants.  It is highly likely that the DWP is also massaging the figures which say very few PIP claimants will be affected.”

A government spokesperson told Big Issue: “This data is partial. It doesn’t reflect that the majority of people who are currently getting PIP will continue to receive it, nor does it take into account our wider reforms to get people back in to work.

“This government will always protect the most vulnerable, it’s in our DNA. The social security system will always be there for those who need it most with severe health conditions, and we will ensure their income is protected.

“Too many people are being let down by a system that traps them out of work and holds them back. One in eight young people not working shows the system is broken. Our reforms will support those who can work – backed by £1bn additional funding to guarantee tailored help. This government will support everyone to thrive.”

And Steve Topple writes:

Rumours and comments from the government have been circulating for months over a Department for Work and Pensions (DWP) survey on how people spend their Personal Independence Payment (PIP). Since October last year, the corporate media has been drip feeding stories with little substance about the supposed DWP PIP research.

However, now people are coming forward saying they’ve got the survey – after a minister confirmed this week that it was going ahead. The first, and only thing, to say on this is: do NOT fill it in. How you spend your DWP PIP is none of the government’s business.

DWP PIP survey on how people spend their money: yes, it is real As the Canary reported last October, minister for disabled people Stephen Timms referenced the DWP PIP survey in response to a written question by Poole MP Neil Duncan-Jordan.

Duncan-Jordan was querying what assessments the department had made to assess the “adequacy” of PIP for supporting the “extra costs of disability.”

As part of his reply, Timms said that:

DWP pays close attention to the evidence base on the extra costs faced by disabled people; including academic research, analysis by Scope, and DWP’s own commissioned research on the Uses of Health and Disability Benefits from 2019. In order to understand more, DWP is now undertaking a new survey of Personal Independence Payment customers to understand more about their disability related needs. This project has an advisory group of experts including representatives of the disability charity Scope and academic experts.

Fast-forward to this week, Duncan-Jordan and Timms had another DWP PIP exchange. The latter confirmed that:

DWP is now undertaking a new survey of Personal Independence Payment customers to understand more about their disability-related needs. It is expected to produce findings in Autumn 2025.

However, that was all the detail provided. Buried on the DWP website was a shred of detail. On 7 April, it announced all research programmes that were being undertaken by private companies. Listed was:

April to July 2025, Verian – Areas of extra cost survey: If you are claiming Personal Independence Payment you may be contacted to take part in research. The aim is to understand disability-related needs and assess how these translate in additional costs that claimants incur.

Now we know

Now, thanks in part to Atlanta from campaign group Disability Rebellion, people have been coming forward with the details of the survey – as Verian has already being sending it out.

Replies to Atlanta’s post included this video – where the father of a DWP PIP, ‘Disability Talk With Steve’, claimant talks the viewer through the survey.

The questions in the survey revolve around things such as spending on aids and adaptations; travel, and food. Essentially what the DWP is doing is asking people about costs for each component (task) that features in the PIP Daily Living and Mobility elements of the benefit.

Meanwhile, Verian had also sent it to other people.

So, the much-talked-about DWP PIP survey has arrived. However, the department is not the only one conducting this kind of survey. Campaign group There For ME, which raises awareness around the illness myalgic encephalomyelitis (ME/CFS), along with other organisations is also conducting their own survey into DWP PIP and benefits.

This survey too, linked to a parliamentary group of MPs with an interest in ME, also asks questions on how benefit claimants spend their money. For the avoidance of any doubt, do NOT tell either the DWP or a charity how you spend your DWP PIP money – or any benefit money for that matter.

DWP PIP survey (and the others): not benign exercises

Firstly, it is none of the DWP’s business.

Secondly, this is not a benign exercise from the government.

By tailoring the questions to be specifically around each component (task) of the DWP PIP assessment, Labour is looking for ways it can cut PIP. For example, if a lot of claimants say they spend their PIP on aids and adaptations, then the DWP could argue this should be a matter for local authorities, who already fund adaptations – ergo, they can cut that financial part of PIP.

On a side note, There For ME and the other organisations conducting their own survey’s on DWP PIP claimant’s spending habits are being useful idiots for the government. They may think that they are showing the extra costs people with ME have, to use as some sort of leverage in mitigating parts of Labour’s planned cuts. However, Keir Starmer’s government is not going to care one iota – and if There For ME’s survey gets to them, the evidence will be used against chronically ill and disabled people.

So, in short the DWP PIP survey is here – and do not fill it out. It is a phishing exercise to help give a manipulated evidence base for Labour’s cuts. Anyone thinking otherwise needs to get their heads out of the sand, and quickly.

When 1.3 million chronically ill and disabled people are facing cuts, giving Labour a helping hand in doing it is perverse, at best.