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.

I’ve received it, filed it in the fuckit bucket.

😄

Right decision, I think.

Wonder if a government has ever written to child benefit recipients asking what the money is spent on? Or asked pensioners what they spend their state pension on?🤔

That's actually a well-known scam, trying to get your bank details.

If the DWP commissioned a study about PIP they would use a third party market research study and contact people by POST to outline the legitimacy and veracity of the reeearch?

A few months ago I received a letter from the NHS (via a kosher market research company).

They wanted opinions of people using NHS services. They picked me because I disclosed have a life limiting incurable cancer illness with less than 3 years prognosis (for a specialist F2F focus group)

We were offered a fee of £150 plus some £35 travel expenses for me and my husband carer to acccompany me.

I am on maximum PIP (since April 2024).
previous to this I had paid £95k national insurance over my working life.

i have fully paid up my state pension contributions but won’t reach the age to claim it.

I will check on the Benefits and Work website to see if there is any mention of this spurious PIP online survey

I don't think anyone asked to fill it in sees all the questions, because the answers you give lead to more specific questions. So eg if you said you buy stuff to help you eat it would ask more detailed questions such as whether that's pre prepared food, partly prepared food like chopped veg, specialist food items, aids to help you physically eat, etc etc.

From what I saw it seemed a pretty decent survey, from a survey point of view (I learnt about making surveys as part of my degree). Before it even gets to questions is when they do the more open ended research to decide what sort of questions to put in the survey. So I don't know how they decided that.

As well as asking specific things depending on answers given, it also asked frequency of spending on those things. So eg if you needed taxis it asks how often with answers like "every week" or "at least once a month" (there were many more options, I don't remember!) I do wonder if the different options capture frequency well enough though - for example I can't remember if "at least once a week" was the most frequent. If it was there's quite a difference between that and say, "five times a week". But I don't remember the exact options.

I was surprised at how much it covered though. Such as things like paying for extra tickets for someone to accompany you places, paying family/friends to help or buying them things like coffee/meal out to say thanks (it was something like that, again I don't remember exactly). As well as the more obvious or formal expenses such as equipment or paying for therapies or prescriptions, or professional care.

It didn't specifically mention work related expenses but that stuff would be captured in everything else, as far as I could see. So eg paying for transport to get there, paying for aids or adaptations, paying someone to help you. Is there something obvious I'm missing that wouldn't be captured by other questions on expenses?

Oh and I remember it asked about paying for heating and what temperature do you need to set you thermostat to.

Edited to say - Letter was from Verian but also had DWP branding on it. Looked like the letter posted in link upthread.

To improve the lives of disabled people . That's it. There's no criteria for what is should/must/will be spent on. So no justification for "checking". You can't check something with no criteria to check it against. What improves the life of the disabled person who receives the PIP is upto that person to decide . Therefore whatever the person spends it on is a correct use of the money, no matter what.
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If the government wanted to know what the extra costs of being disabled are they could just ask that.
Instead they're asking what people spend their PIP on and it's a flawed question.

PIP is nowhere near enough to cover most people's disability related expenses, if they were to live as normal a life as possible, so often a low-income disabled person makes outgoings match income by going/doing without all manner of things that would help their physical and mental well-being.

( Before anyone starts up saying "but that's what working people without benefits have to do". Well yes, but not all too-disabled-to-work would be earning minimum wage if they were working. That's all PIP and other, out of work, benefits tries to level people upto - someone earning minimum wage at about 30hrs/wk. (Plus housing benefit to put a roof over people's heads, how much of that you get is partly based on your personal needs and partly based on rental costs in your locality). Some were earning a lot higher than minimum wage before disability struck. Or perhaps a person has never worked but would have gone on to be a moderate-to-high earner had they not had the misfortune to be born disabled/developed disability in childhood.)

If DWP want to know the costs of being disabled just ask people to write down what they need, stuff that isn't being funded by the council for that individual person, and how much those things would cost. PIP spends is irrelevant when it would only cover a proportion anyway.

Take someone who sits around a lot because they can't do much of anything else. Maybe they'd benefit from eg regular weekly physiotherapy and massage to manage pain better, which might also make them more functional as well as improving mental health by making them feel less shite. Round here that's about £60 and £80 a session respectively. Let's say it's a £15 each way taxi ride because they can't find the energy to use public transport and don't have a car. So that's £60 on transport to both appointments. Maybe they also need an assistant/carer to attend the appointment with them or they couldn't go. The appointment is an hour each, the travel time half hour each way, and the assistant/carer's fees £20/hr. That's £80 per week in wages for both appointments. Then they need a wheelchair to get from the taxi to the appointment room, but there's a huge NHS waiting list so they have to purchase their own, no idea how much a wheelchair is, let's say £200 one off cost for a basic one. We're now at £280/wk for those two appointments plus the one-off wheelchair cost on top. PIP high rate care component is around £85/wk and higher rate mobility payment is around 70/wk. This is kind of a rough guess, but you get the picture. It falls far short of the amount needed. And that's without any other disability related costs the person has. So maybe someone in that circumstance, who can't do much, might spend part/all of their PIP on something they don't technically need but that cheers them up, something that to an outsider perhaps looks frivolous or wasteful, like eg takeaways all weekend, a bottle of gin and buying some lottery tickets. Asking "how do you spend your PIP?" in no way paints an accurate picture of such a person's reality or demonstrates their needs.

Is there going to be a section of the form that allows for eg someone who spends twice as much on rent as their housing benefit allowance is, so they're topping up the rent with their other benefits, because due to their disability they really need to live in the nice part of town, where the neighbors are less likely to display long term intrusive antisocial behaviour and where they can set foot outside their front door with minimal risk of being mugged etc each time? If someone did spend their money this way, would it be assumed they had no other "real"/justifiable/socially acceptable disability related expenses?

Or would asking these hypothetical people what they spend their PIP on just make them look like entitled dicks...which is maybe the purpose of the survey?

Could this be a scam? I've had something similar and I'm pretty sure I read somewhere that there's a scam doing the rounds.

Yep, Verian are the ones requesting the information for and on behalf of the DWP who apparently will not be informed about and the individuals actual answers that the person may provide and that the survey will maintain anonymity. But here is the rub, they then go on to say they will then allocate the persons awarded PIP scores in the various categories and so the DWP must have provided them with the personal information of the person that they make the request of. Is this not very curious and does it not suggest that the survey will go specifically to those with less than 4 points in any particular category?

@SurveyServus Thank you. Finished very late last night, and am late for work this a.m. so will respond later.

@Erabus
But here is the rub, they then go on to say they will then allocate the persons awarded PIP scores in the various categories and so the DWP must have provided them with the personal information of the person that they make the request of.

Where did you get this information, please?
I've tried Googling but found very little info.

Is this not very curious and does it not suggest that the survey will go specifically to those with less than 4 points in any particular category?

I have scored 4 points in one category (and 2 points in others).

Well at least that’s heartening. On the reverse of the letter issued to me it states the following:

If you take part, the DWP research team will use the ID code to add some information that they already have about you. Including your PIP scores, to your survey answers. Your identity will not be used or revealed to anyone at DWP during the study.There are strict systems in place to make sure that the DWP researchers do not use this code to identify you. We have published more information about how we will use your data on theFAQ page on the survey website.

Now, considering that is all a quotation taken directly from the letter, doesn’t it sound remarkably like a PIP review in some ways. OK, I do agree that it’s more interested in my expenditures that I have relating to my conditions of which I have a few. But why would my PIP scores be pertinent? Also I was actually assessed back in 2020 and awarded and ongoing award until 2029 on the advice of a Tribunal after appealing for a mandatory reconsideration. The result was that the DWP decided not to pursue their case for refusing me the benefit.

I understand that expenditures are important, and I could detail mine if needed but why should I? What I can say is that it generally exceeds the amount awarded to me and supports other people’s employment because of the services that I use the money to procure. (It goes back into the system).

I understand that expenditures are important, and I could detail mine if needed but why should I? What I can say is that it generally exceeds the amount awarded to me and supports other people’s employment because of the services that I use the money to procure. (It goes back into the system).

I think that this is pertinent, and somewhat overlooked by many posters bemoaning the scale of the PIP benefit. The fact is that disabled people contribute to the economy, by paying for services, employing others, and spending in general, whether they are working, or not.

Yes, it’s quite interesting really. I understand that they are not looking towards the Motability component of the benefit. I assume this is because they fear that it may have a detrimental effect on the motor industry should it be withdrawn. If anything, looking at this side of things would give a clear indication as to how some of the money is being spent. (This is easily traced as this doesn’t go to the recipient if they use it for a mobility car, scooter or powered chair). When you take what’s left which is just over £400 pounds per four week period it really doesn’t leave much for other necessities that we need due to our condition.

I can't believe some posters are so naive. What do you think this is being done for? To investigate which pip applicants need more support and higher rates? Get real. It's a cost cutting exercise. I can't believe that some people are so trusting. Shockingly naieve.

Tbh it is the questioning of why people would not want to fill them in from some posters, which dismays me. Some of us do not have complete trust in Government, and will question their motives, especially when they have declared open season on the disabled. It is not being done to benefit PIP claimants, imo.

I can't believe some posters are so naive. What do you think this is being done for? To investigate which pip applicants need more support and higher rates? Get real. It's a cost cutting exercise. I can't believe that some people are so trusting. Shockingly naieve.

It’s definitely a survey that will be used to substantiate cost cutting. That’s why I don’t agree with it.

Can confirm that PIP scores are added to the form. My scores used to be 8's and 6's in some areas. I queried why I was then awarded 4's as improvement isn't physically possible. Was told no suggestion that I had improved, just new ways of scoring, and my award was unchanged, so why was I making a fuss?
I now know those 4's can easily become 3's, no matter the reality..

It's why, while I have reservations too, I want those of us working with minimum 4 scores, to be heard, because it's harder to cut PIP if it clearly results in higher disability unemployment, which it will.
Surveying the working disabled hopefully would expose why independence payments don't work without the independence to choose where, what, and when to spend, for ALL disabled people. Maybe it's naive to think they want us in employment...
We are what they say they want from disabled people, so it seems to me, we should be holding the front line in protesting against what will trash all of us.

Re capturing working disabled expenses: I'm a self employed free lancer and creative, in a wheelchair, with a number of different strings to my bow but a portfolio of physical disabilities necessary to minimize to clients. I work hard within a limited situation and have ways round most things, but they cost.

I have most of the standard domestic expenses of disability but my highest additional expenses are ad hoc work assistants, (not carers, though I have them too, to start and end my day.) transport, and issues caused by it including fines as I have to be able to park close to where I'm working and usually move every few hours. It takes little to disrupt that.
I assume my work transport needs are captured under domestic, but suspicious the rest isn't.
Some areas I work within are stripping out disabled parking or charging heavily for it with just a bit of extra time thrown in on top as a disabled concession.

That's leading to having to pay exorbitant private parking fees in many places, and unable to 'hop out' as my peers do on a rented bike, bus or tube, to buy in solutions to unexpected problems, so I have to use dispatch riders.
If an assistant doesn't show, things like clamps etc have to be got urgently to replace their assistance. I can only carry so much and prepare for so many eventualities.
Disabled loo access is often problematic, despite assurances it exists.
In reality it often turns out to be in use as storage; a misery with Chron's on top of primary disabilities. Paying for consequent emergency use of a shower, (as well as additional emergency clothing, if not able to have Tardis support vehicle with me,) isn't an uncommon work related disability expense.
Every few weeks I either push myself too hard, or a job runs over, and I can't legally get myself and vehicle home, at which point if I can't get anyone to come get me, I have to buy in a bed for the night in order to be able to work again in the morning.

It's swings and roundabouts as to if having or not having a support vehicle with me, works out more expensive or cheaper. It's very situation dependent, with lots of variables.
As things stand, If needs be, PIP allows me to not make a monetary profit on a short job, and get more work from them later for having met whatever challenges encountered the same as any peers would. The end users benefit.
Loss of PIP = loss of work for me and many others, complete with the hidden costs of that.

I know that this thread is not necessarily about the introduction of a voucher scheme, that some bright spark in the last Government thought up. But the above post really sums up why such a scheme will not be viable. The needs of disabled people are so varied, and cannot be condensed.

They do loads of research with claimants when they do changes. It's probably a good idea to take part. Make sure you tell them we don't want vouchers for any of these things that they suggest. We want money to spend on what we choose. I'm sure that must be the angle they going for? But if I were you I'd do the survey.

They do loads of research with claimants when they do changes

Do they? Or do they give people the opportunity to have the illusion that their voices are being heard? I don't think that they just send out these forms randomly. They are targeted for whatever reason, this is just my opinion, of course. Yes I am cynical, when it comes to anything to do with the Government.

The above post echoes my views

It’s pretty clear that the questions are engineered with a bias towards supporting proposed policy changes and will be used as justification for such. At best if everyone is truthful it may shed light on spending trends but no one size fits all. Clearly, the benefit amount was worked out in the first place and so the only issue should be whether you are eligible or not. The existing system is horrendous to navigate and to be awarded anything is extremely difficult as they don’t except the opinions of medical people such as specialists and doctors and often take the opinions of proposed assessors with little medical knowledge over these to determine if you qualify. Where’s the sense in that? Sometimes I actually think that they are trying to redefine disability itself and how they think it should affect us all. Let’s remember that PIP is not about the conditions themselves but how they affect your ability to function and how you feel. That’s from their Bible.

Here’s a great idea or two. Let’s raise minimum wage to the average salary, only pay footballers or sportsmen full wages when they win and half when they don’t. Make Politicians in the UK accountable and properly assessed on their competency to do a job. Tax people and Companies fairly. Stop selling off our national assets to other countries and making us dependent on our historic enemies. Yep, I know, I’m just being silly now.

Then you do the same for all benefits

It will no doubt be picked up by the media who will just twist "I use pip to get someone to wash my hair" into "taxpayers cash is used to fund someone getting their hair done"