PIP survey - intriguing!

[SurveyServus]

Hi all

I've just been sent (in the post) an invitation to take part in a survey regarding Personal Independence Payment. It's being done on behalf of the DWP. Apparently they have randomly selected over 60,000 people who claim PIP.

It's called the "Areas of Extra Costs Survey". Apparently it's to identify the sort of extra costs disabled people face to overcome barriers to participating in society. (<- my paraphrasing.)

Presumably this is part of proposals to change PIP.

It's good that they are actually asking disabled people. It's also good that they are considering what actually costs money to inform how to target funds.

But I am concerned it's going to be one of those surveys with limited response options or no questions that cover where the money is actually needed.

Sharing here as I thought it might be of interest to posters.

No they are not. That is not what that refers to at all.

You can’t complain you were not consulted if you refuse to take part in the consultation.
Also, in some charities cases it’s in their best interest to have a ~fundraiser~ campaign on the go to keep their donations rolling in.

Can you share any links?

I had a Google before posting this thread but couldn't find much about it at all.

From our budget (working age adult with extensive physical disability.)

Personal care £110 per day (with unpaid familial carer doing overnight care and provision of 2 meals on top free of charge!)

Additional energy costs (heating due to limited movement and charging of electric wheelchair, bed and other assistive devices) estimated £70 per month average

Falls alarm and monitoring service £20 per month.

Microwaveable ready meals because agency carers are not allowed to heat up anything without a clear use by date, ie leftovers of home cooked meals.

Running a large, adapted wheelchair accessible vehicle £77 per week covered by higher rate mobility PIP on the motability scheme.

Incontinence products £14 per week.

Those are the costs that are easy to quantify. Then there’s the stuff that gets broken more frequently, the clothes, bedding and towels that get ruined, the wear and tear on the overworked washing machine…

and the cost to me, as the carer in this scenario, the being looked over for promotion at work because I’ve got enough on my plate, the damage to my own physical and mental health, the immediate loss of income and long term consequences of reduced pension contributions.

They already know! We fill in the forms faithfully every year!

Soon the whole country will be on PIP. No wonder they are going to reform it.

This is one of my main concerns.
So many people use it to top up incomes - incomes that are low due to disabilty.

If they send it to me it will be getting put through the shredder. I’ve filled in the public consultation about the proposed changes to PIP. What I do with the PIP I currently get is, quite frankly, none of their business.

Whilst looking for more info I came acros this other research survey:
https://www.icpr.org.uk/news/2025/survey-impact-disability-benefits

This study aims to gather people’s experiences of receiving Personal Independence Payment (PIP) or Adult Disability Payment (ADP) to highlight the impact that disability benefits can have on the wellbeing of disabled people.

Maybe a bit more useful as actual research? If anyone's interested.

The PIP is meant to cover any additional costs arising out of your disability - why shouldn’t they ask what those expenses are?

Surely the point of this survey is to calculate exactly what those costs actually are?

Please see my post upthread. All information that is already shared routinely with the county council!

I’m sure there’s plenty of people who receive PIP who can explain exactly what the additional costs are for them personally and are happy to fill out the form and share this information with the right people (there are a couple of people on this thread)

likewise, I’m sure there’s some people who receive PIP but can’t point at how the additional payment is used. These are the ones who will refuse to fill it out (some under the guise of being opposed to the survey).

Response rate will be interesting and will hopefully allow them to better tailor who receives what payments. I’m sure there’s some people where PIP doesn’t nearly cover the costs associated with their disability to allow them to lead a more normal life, and hopefully payments will be increased for the people that fit into that category

Child benefit is meant to pay towards children, but I don’t see them sending out letters asking where people are spending that money, do you? It’s none of their business what people spend their PIP on. They might think I spend it on luxuries, when what I do spend it on is absolutely necessary to me and my health.

IMO this is a very slippery slope to start going down and it’s not one I’m willing to take part in. We’ve already had the Tories start on about vouchers. I don’t trust any of them.

That’s a strange comparison. I would quite happily fill out a form showing how I spend much more than £26 a week just keeping my child warm and fed! If anything, it would lead to an increase to child benefit

It’s not a strange comparison, it’s pointing out that they’re only picking on the disabled again, as per usual.

Lots of disabled people will receive that survey and will be too scared to do anything but fill it in when it’s none of the Govt’s business. This won’t lead to an increase in benefits for disabled people, if anything it will lead to further cuts and the introduction of vouchers.

It may be a scam text. There are lots of them at present.

I would argue it’s pretty obvious what the additional costs related to having a child are. It’s not so obvious in relation to the very many types of disability that can give rise to eligibility for PIP

What does it refer to then? It says it’s a survey of PIP recipients?

GDPR rules are really strict though. It might not be possible to access that data as it wasn’t collected for this purpose.

There was a consultation already giving people the opportunity to oppose the cuts, that are being proposed.

They can liaise with disability charities who can provide them with the type of information that they require. If they require individual testimonies, then they can build that into the application form, and do the same for all other benefits, that they do not currently require a breakdown of what the money is spent on.

That is the Green paper consultation that everyone can access.
The OP is referring to a very questionable personal survey that is being sent out allegedly randomly (anecdotally few working physically disabled are being asked) and a £10 payment for doing it.

The public are easily confused and the main purpose of the green paper seems to be to see how much resulting push-back there is to the already planned chaos, and the £10 targeted survey is to justify that they are 'listening' to individuals.

There is an issue around growing numbers of disability benefits claimants, specifically in younger people, and whoever was in power would need to somehow address it, and what is causing it, and how to deal with it.
Most people recognize this, at the same time as being fearful that it would be done badly.

Building on the Tories stigmatizing and punching down campaigns and seeking to other disabled people and cut independence payments to make disability even harder to work and live with is populist gutter politics.
As are PIP reduction plans that will force working disabled workers out of work in order to fund minimally higher UC for able and disabled alike for childcare costs, unemployed, underpaid, or not able to or not interested in working, and voucher schemes that will create a whole new bunch of winners and losers, private profiteering, stigmatizing and burgeoning costs.
It about appealing to certain types of voters, not sensible fiscal plans.

That's why all those workers on UC top ups aren't being questionnaire'd on how they spend their money.

£600,000 payment to ask specific claimants only questions that suit them, is chump change in many ways, but could have been used for actual research into the unintended financial consequences of their current ideas.

There are three people; a comfortably off politician, (who claims expenses) an average worker (who claims childcare costs) and a disabled part time worker (who claims PIP) all sat around a table with a plate of (taxpayer funded) biscuits on it.

The politician hands the disabled person a questionnaire about what exactly are their needs for biscuits, and meantime removes all but one of the biscuits from the plate.

When only one biscuit is left on the plate, he whispers in the ear of the average worker; "You don't have to fill out a form, but careful now, that other person might not even really be disabled, but either way, watch them, they're trying to take your biscuit."

An old joke, and an old playbook, both rehashed for modern times.

Precisely this^

It’s absolutely not true. People who speak like this obviously never applied for PIP.
My daughter has disability and I applied for PIP on her behalf. You need to show medical evidence and answer very specific questions. In some cases you have F2F meeting.