Because there were far too many comments for us to analyse, we asked AI to do so. Thus the article below is AI generated, but from the hundreds of comments we have reviewed, it appears to be a credible summary of what readers told us.
What almost 4,000 comments tell us about cost-based PIP awards
More than 5,000 people have responded to the Benefits and Work survey asking what they think of the suggestion that individual PIP awards could be based on a fair contribution towards disability-related costs.
By 17 September, 5,414 people had taken part.
Of those:
- 79.8% – 4,318 people – said they did not support the idea
- 10.0% – 543 people – said they supported it
- 10.2% – 553 people – said they did not know
The optional comments box produced an unusually large response of its own. Excluding two test entries, 3,931 people left written comments.
This was an open, self-selecting survey, not a representative poll of everyone who receives PIP. The percentages above therefore describe the people who chose to take part and should not be treated as estimates of the views of all PIP claimants.
We also analysed the written responses to find out what was driving people's answers.
For this analysis, each comment could be tagged with more than one issue. So somebody who raised both fluctuating costs and loss of independence, for example, would appear in both categories.
Costs go far beyond equipment, transport, clothing and bedding
The most frequently identified concern among people who opposed the idea was that disability-related expenditure extends far beyond the examples currently put forward.
Almost 32% of the 3,218 “Don’t support” commenters explicitly mentioned costs or services outside those categories.
Heating and energy were mentioned by 13%, food or dietary costs by 11%, therapy or treatment by 7%, cleaning, gardening or other home help by 6%, and care or personal support by 6%.
One respondent listed the problem this way:
“This doesn't include the support costs we incur, to do the things we cannot. Cleaners, gardeners, support workers, physiotherapists. Higher electric and gas costs, pre-prepared fruit and vegetables, continence products and extra costs of cleaning. The list goes on!”
Another commented:
“It's not just physical items we need help for. Extra energy costs because I need to keep warm. Help with cleaning. Taxis because I can't use public transport ”
The Timms Review's own interim findings have acknowledged that disability-related costs can be continuous, variable and interconnected, including energy use, transport, equipment and care and support.
Choice, independence and control
The second most commonly coded concern was about what would happen to people's ability to decide for themselves how PIP is used.
Almost one in four – 24.4% – of those who opposed the idea and left a comment explicitly mentioned choice, flexibility, control, independence, autonomy or dignity.
One respondent said simply:
“I do not feel there should be any changes to the cash awards as people themselves should have control over how they spend their money.”
Another wrote:
“The key word is INDEPENDENCE. We use PIP for everyday living, bills, eating, clothing.”
This concern does not necessarily reflect what the Timms Review has said it intends to do. Its September proposals state that cash would remain the foundation of the award, and that a reformed benefit should promote independence, choice and control. But the same proposals also say that cost categories could be used to discuss someone's circumstances “and therefore determine their award”.
The comments suggest that many respondents want to know how those two ideas would work together in practice.
Fluctuating and unpredictable needs
Almost 15% of comments opposing the proposal explicitly referred to fluctuating, variable, changing or unpredictable costs and needs.
One respondent wrote:
“The extra costs I face are unknown until they occur. Being able to deal with unexpected problems quickly, as they arise, has a significant positive impact on my health.”
Others described transport costs changing according to hospital appointments, heating costs changing with the weather, and the amount of paid help they need varying according to their condition.
The Timms proposals themselves say that an award should reflect “fluctuating and cumulative impacts”, while the Review's interim report found that levels of need are often dynamic rather than static.
The unresolved question for respondents is how a costs-based assessment would capture those fluctuations.
“One size does not fit all”
A further 12% explicitly raised the fact that people with the same diagnosis can have very different circumstances and support needs.
One respondent said:
“Everyone's needs are different and can be very complex and needs can change from day to day, week to week and month to month.”
Another put it more briefly:
“Different disabilities have different needs at different times and at different levels”
This is closely related to the concern about fluctuating costs, but it is not quite the same. Respondents were arguing that even at the same point in time, two people with apparently similar conditions may use PIP in entirely different ways.
Receipts, proof and additional bureaucracy
Almost 12% of those opposing the proposal explicitly raised concerns about receipts, proving or justifying expenditure, vouchers, reimbursement, approved suppliers or additional administration.
It is important to stress that the Timms Review has not announced that PIP will become a receipt-based reimbursement or voucher scheme. Its current published proposal says cash would remain the foundation of the award.
But respondents were clearly concerned about where a stronger link between awards and identifiable costs might lead.
One person who already has to justify disability-related expenditure to a local authority said:
“It’s really upsetting and humiliating. Some of my costs are for treatments that I can’t get on the NHS and it’s hard to get those approved.”
Another respondent described a similar existing arrangement as:
“a cumbersome, difficult, administrative nightmare.”
For some commenters, the burden of recording and evidencing expenditure was itself a significant concern because of fatigue, cognitive problems or mental health conditions.
Mental health, neurodivergence and less-visible conditions
Just over 11% of comments opposing the proposal explicitly mentioned mental health, autism, ADHD, neurodivergence, learning disability, cognitive problems or less-visible disabilities.
A typical concern was:
“For those with mental health and or neurodivergent conditions, costs can be difficult to quantify. It also limits what the money can be spent on. Things that may improve someone’s life may not be considered an approved cost.”
Another respondent wrote:
“But need support.”
after explaining that schizophrenia did not necessarily create a need for aids and equipment.
The concern was not simply that these conditions would be excluded. The Review's proposals explicitly say that evidence from mental health professionals, social workers, carers, family and friends should be accepted.
Rather, respondents questioned whether needs that do not translate easily into a priced object or service could be valued fairly under a greater focus on costs.
Not every need produces a bill
A related issue, although one that was expressed in many different ways and is therefore harder to quantify with a single tag, was unpaid or informal support.
Respondents described help provided by husbands, wives, partners, parents, children, friends and other relatives.
One wrote:
“Because you can’t always put a price tag on the support needed - particularly if it’s unpaid carers support.”
Others pointed out that somebody may simply go without support because they cannot afford to buy it.
That raises a basic difficulty for any system in which expenditure becomes important: actual spending and actual need are not necessarily the same thing.
Disability can also reduce people's income
A smaller but distinct group – at least 3.4% of opposing commenters – explicitly referred to being unable to work, working reduced hours or losing earnings because of their disability.
One respondent with myasthenia wrote:
“My disability precludes me from working full-time, no amount of aids, adaptation or travel costs can change the fact my body can only operate in short bursts unsuitable for employment”
Others argued that PIP helps compensate indirectly for having a much lower household income because disability limits the amount they or a family member can earn.
That is conceptually different from paying an identifiable additional disability cost and was one reason some respondents felt the proposal did not capture the full financial consequences of disability.
Some respondents believe the proposal would mean cuts
Almost 8% of people who opposed the idea and commented explicitly said they feared that the result would be reduced awards, tighter eligibility or cuts in expenditure.
That is their interpretation rather than something the Review has stated as its objective.
The Review's terms do, however, require its recommendations to remain within the Office for Budget Responsibility's projections for future PIP expenditure.
Some respondents therefore questioned whether a fundamental redesign could genuinely be separated from questions about overall spending.
Why some people support the proposal
It is equally important to reflect the views of the 543 respondents – 10% of the total – who selected Support.
Their comments were not all unconditional endorsements of a particular model.
Some people felt that identifying actual disability-related expenditure could result in support being better matched to what an individual genuinely needs.
One respondent said:
“I have budgeted fixed costs that I use pip for. So aslong as these costs ste met im happy with that.”
Another wrote:
“I think this is a fair and reasonable argument. The overall cost of the benefits system is rising significantly, and it is therefore understandable that the government may need to review and reform the system.”
But supporters also raised many of the same practical questions as opponents.
Almost a quarter of the 341 supporters who left comments explicitly mentioned costs such as food, heating, care, therapy or other needs beyond the three examples in the survey.
One supporter said:
“I do support this in principle but also given that PIP is awarded on how your disability affects you, the higher costs incurred from other services such as delivery services, food deliveries, laundry etc should also be taken into consideration and not just purchasing items that aid mobility.”
So support for the broad principle did not necessarily mean support for a narrow list of recognised costs.
Why people answered “Don’t know”
The 553 people who chose Don't know were also far from indifferent.
Of the 372 who left comments, around one in five explicitly said that they did not understand the proposal sufficiently or needed more detail before deciding.
One said:
“I don’t understand what a fair contribution means or how this would be calculated. A lot more detail is required.”
Another wrote:
“I don’t understand what this means. People are already allocated PIP to areas of needs. I worry this could become a voucher system and also restrict the items that can be bought - ones that are personal and have the expertise for the individual.”
Around one in five of the Don't know commenters also explicitly raised wider disability costs beyond the examples given.
For many, their answer appeared to mean “it depends how this actually works”, rather than having no view on the principle.
Six questions respondents repeatedly raise
Taken together, the comments point to six practical questions which recur across all three groups:
- Which disability-related costs would count?
- How would fluctuating and unpredictable needs be valued?
- How would unpaid help or needs that do not involve a purchase be recognised?
- How much control would claimants retain over how their cash award is spent?
- What evidence or proof of costs would be required?
- What does a “fair contribution” actually mean – and who would decide what is fair?
There is considerable overlap between these issues and evidence already gathered by the Timms Review itself. Its call for evidence found that disability costs are often ongoing, variable and dependent on individual circumstances, and its emerging principles emphasise independence, choice, control and fluctuating needs.
The Benefits and Work survey shows that, among the people who chose to respond, there is currently strong opposition to using costs in this way. But the written comments add an important qualification to the headline result.
The central concern is not simply whether PIP should help with disability-related costs – many respondents accept that it should.
The recurring question is whether the amount of PIP someone receives can fairly be determined by putting the consequences of disability into cost categories without losing the flexibility, individualisation and recognition of needs that do not produce an obvious bill.
Note: About this analysis: We analysed 3,931 substantive written comments received by 17 September using AI-assisted thematic coding. Each response could be assigned to more than one theme, so percentages do not add up to 100%. Figures for individual themes refer to the proportion of written comments in the relevant answer group that explicitly mentioned that issue. The survey was self-selecting and is not intended to be representative of all PIP claimants.