The Impact of Disability Benefits Survey

Hi everyone!

My name is Alex and I am a disabled researcher working at Birkbeck. I look at disability benefits as well as our courts and tribunal systems. I am looking to gather peoples experiences of receiving disability benefits to examine the impact they can have on the wellbeing of disabled people.

I have made a short survey for people to complete if they receive Personal Independence Payment (PIP) or Adult Disability Payment (ADP). The survey asks what you spend it on and how it impacts on your work life, social life and how you feel about yourself and your life. You don’t have to answer all the questions, you can give as much detail as you want and you can save and go back later if you need more time to complete it.

The findings from the survey will be submitted to the government consultation into changes to disability benefits. So much of the conversation around this has been about the cost to the taxpayer, but not about how essential cash benefits are to disabled people and what impact they have on wellbeing.

You can fill out the survey on MS Forms until the end of May, which has lots of accessibility features:

https://forms.office.com/e/7Kda0UzP6G

If you have any questions, you can also email me alex.murray@bbk.ac.uk

Please share this with anyone else that you think might want to fill out this survey.

Image is a research flyer with information about the study. What is the purpose of the study? 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. PIP is a cash benefit to help with the additional costs of disability. PIP was introduced in 2013, replacing Disability Living Allowance for adults. The ADP replaced PIP for those living in Scotland in 2022. The findings of the survey will be submitted as evidence to the consultation on changes to disability benefits being conducted by the Department for Work and Pensions at the end of June 2025. Who is carrying out the research? This research is being carried out by Dr Alex Murray, a disabled researcher at the Institute for Crime and Justice Policy Research (ICPR), Birkbeck, University of London. She looks into people’s experiences of the court system and disability benefit processes. Who can take part and how can I take part? Taking part in this research involves filling out an online survey on MS Forms. You can take part if you live in England, Wales, Scotland and Northern Ireland and receive PIP/ADP, or if you are responding on behalf of someone who does. If you want to take part in this research, you can contact Alex by emailing alex.murray@bbk.ac.uk or you can go direct to the survey by clicking on the link below. The survey can be completed until 31 May 2025. https://forms.office.com/e/7Kda0UzP6G

Find more posts tagged with

PIP reform

ADP

PIP Survey

Comments

AMurray

The link is here: https://forms.office.com/e/7Kda0UzP6G

Rosie_Scope

The above post has been moderated and checked by the Scope Community Team

Our website contains links to third parties’ websites for your information only. We have no control over the content of those sites or resources and we don’t endorse or accept liability for the content of them.

Read the full Terms and Conditions and our Community House Rules.

MW123

https://forum.scope.org.uk/discussion/comment/1026074#Comment_1026074

Done.

mrsBB

Started to complete the form, its going be a long one, I didn't realise just how much I pay out for extra essential items from PIP.

As an example, my local council fitted a stairlift and bath lift through OH but will no longer pay for their yearly maintenance/breakdown insurance, its not cheap, the councils argument is - you get PIP, you will have to use that, fair enough but still annoying somewhat, in that if I lived in social housing a company is employed to take care of the yearly maintenance and breakdown for free. My OH assessor tried to argue this with my local council but she got nowhere so I pay as I need these. It wasn't until I started filling in the form that I realised just how much I actually do use PIP for.

AMurray

https://forum.scope.org.uk/discussion/comment/1026268#Comment_1026268

That's a really good example. I think there is a lot that we end up using PIP for that (in an ideal world) would be covered in other ways by local authorities, NHS etc. I think it is really useful to show the government these things because if they take away PIP for many people they cannot easily replace what it pays for!

Not sure if this is too late for you, but you can save the form (just click through to the end) and come back to it! long answers are very much welcome!

Yadnad

Being 76 (Enhanced Care & Mobility PIP) with my wife 81 (Day and Night rate AA) you would think that we MUST have some extra costs in consequence of our disabilities & illnesses.

For the life of me I cannot think of any extra expense on top of what we would have normally covered out of our pensions etc.

MW123

@Yadnad

I sometimes think it’s easier to imagine how you would manage without the extra money from PIP and AA. For example, in the winter (and even in summer if it’s cold), would you keep the heating on more than you would if you only had your pension? Have you thought about how you’d manage without that extra income for heating, especially if you feel the cold more? Then there’s the internet and phone bills, which can be essential, particularly if you rely on them for online services like having shopping delivered.

Do you also spend money on running a car or using taxis since public transport is difficult? How would you manage without that extra support? What about special diets, are there extra costs for foods you need that aren’t covered by a standard food shop.? And if you have a cleaner, gardener, or any other help around the house, how would you cope without that extra help? Without that money, I imagine you’d have to cut back on some of these services, and daily life could become much more difficult.

chiarieds

Yadnad has previously said this @MW123 :

https://forum.scope.org.uk/discussion/comment/1019407#Comment_1019407

MW123

https://forum.scope.org.uk/discussion/comment/1028163#Comment_1028163

Thanks for sharing Yadnad's earlier post. I initially thought I was offering helpful insight, as PIP is a lifeline for me. It helps cover the cost of a cleaner, gardener, laundry services, and medical appointments. But it’s clear their view of PIP is quite different from my own experience.

Girl_No1

@MW123 your post was useful and insightful for me, and I'm sure too for many others.

Given we just tend to cope/manage/deal with our limitations, it's easy to forget we sometimes just don't recognise instantly that we have put additional measures in place to overcome our limitations, and a lot of those measures have costs attached.

Yadnad

https://forum.scope.org.uk/discussion/comment/1028155#Comment_1028155

Try as I may I have always tried to see the problems that others endure. You mention Winter/Summer heating costs. We have for many, many years always paid for our gas and electricity costs by Direct Debit they being 1/12th of the anticipated annual cost. No we don't reduce the amount used. The heating stays on for as long as we need it. Every year we always build up credit balances, helped by the £150 credited to the electricity account going into the Winter period. This doesn't even take into account the £300 we get annually. That contribution is added to our savings pot.

We pay £20 a month for the internet service. I use that service in the main for the research subjects that I undertake as well as receiving on line TV/telephone/laptop. As for online shopping, I had enough of that during the covid lockdowns! I do the shopping mainly for us both at the major supermarkets - Sainsburys and M&S.

Yes we have always owned our own car however in 2023 I decided to give Motability a try. Why? simply because of the financing costs of a new car every 3 years. I used to pay somewhere between £400 and £500 a month x 36 just on finance, insurance and maintenance was extra. I find that I am saving a small fortune by having a Motability car. We no longer do 12000/15000 miles a year - there is no need to. The friends and our family are no longer with us so we now travel something like 4000 miles a year. We don't bother with holidays etc. as neither of us enjoy driving like we used to coupled to being unable to fly anywhere due to our medical issues and not able to get travel insurance.

No special diets are involved we both eat what we want to. Our daughter does our cleaning in exchange for the odd pickup from school we do for her daughter. We spend most of our time in our garden during the summer and in the winter, in front of the TV.

We are able to save approx. £800 every 4 weeks out of our pensions and benefits (AA, PIP, & Pension Credit). This does cause a problem as our Pension Credit award is now £60 a week less due to the level of savings than what it used to be at the beginning.

MW123

@Yadnad

Thanks for your reply, I appreciate you sharing your experience, and I recognise the stability you've managed to achieve.

However, I think it’s important to remember that everyone’s circumstances are different. You mention being able to manage the food shopping, and I really wish I could do the same. Unfortunately, I am physically unable to walk around a shop anymore. As a widow living alone, I no longer have a husband to help with these tasks, so I rely on home deliveries, which naturally come with added costs.

Many of us don’t have family support, and it’s also worth pointing out that a lot of disabled people no longer receive Winter Fuel Payments, as that is a means-tested benefit. In contrast, PIP and AA are not means-tested. You can receive them even if you have substantial savings or are still in paid employment, because they are awarded based on need, not financial circumstances.

For many of us, these benefits help cover the extra costs that come with living with a disability. While they go some way towards easing the financial pressure, they do not always stretch far enough. Some people may have fewer additional needs, but for those of us with more complex conditions, these payments are vital in managing day-to-day living.

It is also important to recognise that not all disabilities are the same. Some people may be well enough to enjoy hobbies or take the occasional holiday, but that doesn’t mean they are any less disabled. For many, hobbies, holidays or short breaks are not luxuries, but necessary for maintaining mental and emotional wellbeing.

PIP and AA are there to help improve quality of life. If someone can use their support for something that brings them comfort and contentment, whether that is a hobby, a two week holiday or short break , or something else, I do not see that as misuse. I say good luck to them. Enjoy it while you still have the ability to do so. If I were well enough to travel, I would be the first to book a holiday somewhere warm, as the sun and warmth can be so beneficial, not just for physical health, but also for mental outlook.

chiarieds

Personal Independence Payment (PIP) is not just for help with extra living costs it's a mainstay in providing food & warmth, etc. to many of our members, not just in trying to let disabled people be able to live 'Independently' like someone that doesn't have a disability, which I thought was the idea.

Many of us don't have the same quality of life as a non-disabled person. Like @MW123 I rely on online shopping. I only eat once a day due to struggling to cook, which I try to do realising the importance of trying to eat healthily, & due to suffering from dysautonomia which can make me feel really ill when eating fairly often, pain whilst making a meal, etc. Many people can't even afford the 'luxury' of buying foods that aren't processed as these are cheaper; they simply don't have the choice.

My heating costs are extra as I only have LPG not mains gas; my electricity is higher because I have to repay our Park Home owner for this at his business rates, & yes, if I'm unable to keep warm this increases the pain I have, & there have been times where I couldn't put the heating on until 8 pm in winter; some people on benefits such as PIP have to choose between heating & eating, which quite honestly is dreadful in today's society.

I'm very fortunate that my son lives a few houses away as he said to come & live near him so he could help me. He or his wife take me to medical & dental appointments (oh, & yes, I only have the 'choice' of paying for private dental care as non is available on the NHS near me).

I've been there when I had at most £450 every 4 weeks when all I had was DLA, & my outgoings were £250+ before food & fuel. I know the stark choices people have to make.

I'm fortunate that I can now afford a 1 week self catering holiday about an hour away from home between Feb & April (as I can't sit long as that increases my pain) once a year with my son & his wife, allowing us all to recharge our batteries, just like non-disabled people. My son has the same genetic disorder inherited from myself; he works hard, & doesn't claim any benefits, so we try to enjoy time together whilst we can, tho I've likely had my last holiday.

Perhaps you realise that your comments may therefore come across as rather 'insensitive' @Yadnad - & I'm struggling to see how the amount of benefits you receive has become problematic as your Pension credit has reduced due to how much you've been able to save, rather than actually 'need' to use, due to all the benefits you receive. Simples, don't claim them, or use them perhaps at least to support charities for those less fortunate than yourself.

mrsBB

Yadnad, you seem unable to empathise with anyone on this forum, I really do not know why you still post. You seem to purposely go out of your way to get folks backs up, you have been doing this for years. I am sorry I am not being very empathetic to you right now, or as caring as others here have been with you but in my book you get back what you give out. I am fed up of hearing how you don't need this and you have enough money blah blah, count yourself lucky and stop with the silly comments. Folk here are in panic mode just now and can do without your ridiculous comments. I need my PIP, if you don't need yours donate it to folk here who could use it to fight for their lost PIP. You just had to insert yourself into a conversation for the hell of it, nothing ever changes with you or your opinions. Sorry Mods but sometimes things need to be said, Yadnad does this all the time and its not on when folk are petrified.

Rosie_Scope

Hi everyone,

Please try to keep things civil with each other as per the House Rules.

Everyone's experience with the benefits system and life in general will be different. Some might find that there are lots of expenses due to their disability, while others might not. It's really unique to the individual, but I know it can sometimes be difficult to understand and empathise when someone else's life experience is vastly different from your own.

It can be a really emotive topic for many but I'd like to hope that we all still have much in common even if we don't agree on everything.

mrsBB

https://forum.scope.org.uk/discussion/comment/1028594#Comment_1028594

Hi Rosie, I thought my post might get flagged, sorry about that. I had to get my feelings out, maybe I should have taken a deep breath instead 😄

Rosie_Scope

No worries @mrsBB, it's one of those topics that can cause some difficult feelings for many. I didn't mean to target anyone individually with my post, just a friendly reminder for everyone involved ☺️

WhatThe

I'm disappointed by some of the above comments.

Hi Alex and welcome to Scope 😃 I don't receive PIP but thank you for this survey and your important research. I am very concerned about HMCTS moving online. Keep posting your thread to keep it live and catch more members.

"The findings from the survey will be submitted to the government consultation into changes to disability benefits. So much of the conversation around this has been about the cost to the taxpayer, but not about how essential cash benefits are to disabled people and what impact they have on wellbeing."

You can fill out the survey on MS Forms until the end of May, which has lots of accessibility features:

https://forms.office.com/e/7Kda0UzP6G

DeerNewt92

I have worked 30 years full time, lone parent and low income.

I was advised in 2016 by council I was not elegible for any housing benefit or Councill tax deduction apart from 25% after divorce, always had mortgage no equity sold what was owed and I ended up getting a housing association house

I had to pay rent and childcare from salary and lived in a 1000 overdraft and personal loans take never year

I had 2 disabilities aswell

I health was worse in 2024 and I was told about PIP and UC.

I have had to give up my job in law and bedbound and lone parent and I'm 43

Because I worked and did not get income benefits I am not elegible for premium, I was only allowed newstyle ESA because I worked which is deducted from universal credit

So why now the government has stopped income ESA if you worked and didn't get income benefits you only get newstyle ESA and universal credit and can't survive

I have lost my career my health and 30 years of income tax and NI contributions only get you newstyle ESA

People who were in olinvone ESA got all disability premiums and they now migrated over to universal credit get ESA newstyle aswell

So can someone tell me how working 30 years paying rent and childcare and council tax becomes disabled is struggling to work

I now have to get a IVA because of borrowing money to survive

This is wrong and unlawful

People are being migrated to universal credit and not happy paying 11 council tax a month and getting about 2800 on universalal credit

LWRCA is also given to people working or wanting to work

Taxpayers are now penalised for not claiming income benefits but paying into treasury and get ESA deducted and now get LWRCA and can't work anymore

Rosie_Scope

Sounds like you've been through a lot @DeerNewt92, I hear your frustrations. It's not easy when you've worked hard and then are faced with a system that doesn't support you.

That said, it's important to remember that lots of people on Universal Credit are struggling too and deserve help and support. Universal Credit is also not as generous as some of the press like to report and many people don't receive anywhere near £2800 a month. Council tax reductions can vary from council to council so that's not universal either. I know this comment may have come out of frustration though, I realise it's a really tough time.

You won't be the only one feeling angry about what's happening. We're doing what we can to fight against changes that are harmful to disabled people of all backgrounds. And we hope the government will provide support to people who have worked and contributed as well as those who can't.

Hope you're doing okay today.

Welcome!

Quick Links

Popular tags

Please note:

If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out more