Social Security Experience Panels - Seldom Heard research programme: wave 2 report

Key barriers to the benefit system

Common barriers and challenges were experienced across seldom heard groups. They are discussed below.

Difficulties finding information

Several participants and respondents highlighted the difficulty of finding information about what benefits they may be entitled. Some mentioned that this resulted in avoiding starting claims, missing out or delaying access to the benefits there were eligible for.

“I didn’t claim PIP until 6 months after I could. […] I should really have been told what I was entitled to.” (End of Life strand, living with a lifelong condition participant)

“I don’t think it’s that easy like to figure out like what to do or who you could speak to if I need to especially because I feel like it’s always like; well I feel like it’s almost like in the shadows […] I’d look like through social media or like through the Internet or something like, but you know, it is quite challenging to figure that out, […] I think it’s quite difficult from my experience. I think it’s really difficult because they say there’s so much out there, but at the same time, personally me right now, I’ve not managed to find any benefits that I’d be entitled to right now...” (Carers and Care Experienced strand, care experienced participant)

For many the information was unclear, confusing, and contradictory. They mentioned there are several sources of information, but it is not streamlined nor clear. A small number of participants thought the information was concealed and withhold in purpose.

“At the moment it is too hard to find out what you are entitled too, I checked online and there was like three or four things that was telling me all different things, so, it’s not easy I wouldn’t say. I reckon a lot of people would give up if they didn’t have any support.” (Carers and Care Experienced strand, Kinship/foster carer and adoptive parent participant)

Many thought that benefit staff from DWP and Jobcentres were not transparent about providing information about potential eligible benefits to clients. They said the staff usually withhold information to avoid people claiming benefits they are entitled to.

“The Jobcentre withhold information from you, they don’t tell you what you are entitled too. You have to find out through your own sources, through word of mouth or someone else helping you. I had it once where a social worker advised me about a leaflet that had all the up-to-date benefits information in it, they told me I’d have to ask for it at the Jobcentre. I asked for it and the person behind the counter went round the back and got it for me. And I asked them why they didn’t have them sitting out at the counter so everyone could pick one up and see that up-to-date information. They just ignored that comment. Really, it’s because they don’t want to advertise what people are entitled too. Even when they have the information, they are hiding it away. That made me very upset on behalf of other people who weren’t given a tip to get that booklet. (Vulnerable Groups strand, prisoner participant)

A few highlighted the complexity of navigating government websites. Related to this, some reported the challenges to find the correct information from official channels which in some cases were given conflicting information.

“I think on the Government’s website they could maybe like […] explain it a bit more simpler for people who maybe don’t understand what some of the stuff they’ve got written on the website means, because it can be quite confusing to figure out what you could be entitled to, and I think some people don’t apply for some stuff because they don’t think they would be entitled to it, when they actually are.” (Carers and Care Experienced strand, young parent participant)

“When I was told about Housing Benefit I checked online and there was like three or four things that was telling me all different things, so aye, it’s not easy I wouldn’t say.” (Carers and Care Experienced strand, single parent participant)

A small number of participants mentioned the lack of a joined-up approach of government services to signpost and provide benefit information to clients. This caused them to retell their personal circumstances several times before finding the right person with the correct information.

“I think it’s quite difficult [to find information] actually! I think it’s, even Universal Credit, although it’s a simplified system, it’s actually, it’s not really that simple, and I think then when you’re adding in like Disability Benefits, Child Benefits and then possible passporting so like Uniform Grants or Free School Meals; it’s really actually quite a complex system and I don’t think that that’s really clear to people.” (Carers and Care Experienced strand, kinship/foster carer and adoptive parent participant)

A small number of participants reported they were not told about their eligibility for passported benefits and they only found out about them circumstantially. Many said they knew about their eligibility to benefits by chance. One participant thought that being able to navigate benefit information will depend on the level of literacy of clients.

“I missed out on a pregnancy payment I think it was for 3 payments of £250. I didn’t know about it and when I found out about it, I was too late to apply.” (Carers and Care Experienced strand, single parent participant)

As a result, many participants mentioned that they only knew about possible entitlement to certain benefits from third sector organisations, council support workers or their support networks.

“If Citizens’ Advice hadn’t helped me, I wouldn’t have known that I would have qualified for this severe disability premium and all these other things that they don’t tell you. […] Between CAB and my own research and finding what the points system means and how they’re supposed to be basing the assessments, you wouldn’t have a clue. […] they didn’t inform me that I would qualify for this severe disability premium. It was Citizens’ Advice who informed me of that and we had to apply for that. I get it back paid, and also the cold weather payment, which I apparently qualified for.” (Survivors of Abuse strand, survivor of abuse participant)

Complexity of application forms

Many participants and respondents felt that the application forms were lengthy and complicated. The wording of the applications was considered complex and not user friendly. A few thought how because of this, application forms can be difficult to complete, especially for people with literacy issues. Some mentioned that the questions were too prescriptive and repetitive and they did not allow them to capture the nature of their health conditions or their particular circumstances. Others felt that the questions were designed to avoid successful claims.

“I think the way that the questions are worded it’s as if they’re trying not to award you the money, if you want my honest answer. The questions are very ambiguous, and they’re not really written in a way that lets you explain your whole situation - it’s patchy.” (End of Life strand, participant with a terminal illness)

“I am a relatively intelligent individual, but looking at that form [PIP application], to fill it in, I can only say that I feel heart sorry for individuals who maybe don’t have the level of intelligence that I have. I completed that form, and I found it myself, having only recently been diagnosed, an exceptionally distressing thing to do because you have to write down exactly what you can and cannot do in graphic detail to effectively justify why you’re asking for government aid and assistance. […] what can only be said was a harrowing experience of completing this monumental form to detail what I could and couldn’t do and enclosing all of the additional information that they requested from me was a mammoth task…” (End of Life strand, participant with a terminal illness)

“I suppose, I’ve been fortunate in that I’ve good a good standard of education and so has my wife and that has helped us with the [application] process [for PIP]. […] But individuals who are maybe not as literate as ourselves, that would be concerning. I notice that there is a lot of duplication in the PIP [application] form, and I know that it’s designed to ensure that you are eligible, and to confirm your answers are accurate - asking the same questions in a different way. But, for a lot of people, that can’t be easy.” (End of Life strand, participant living with a lifelong condition)

Many commented that they could have not completed the application forms without help, mainly from support organisations. A small number of participants thought that completing forms with these organisations would mean that the applications were more likely to be accepted.

“I usually go to Citizen’s Advice because I feel that, even though I can complete the forms myself, that [having it checked by Citizens Advice] usually rubber stamps it. I feel that if you just fill in the forms yourself, even though they’re probably fine, if you have it checked by Citizen’s Advice or approved by them then they [DWP staff] accept it without question.” (End of Life strand, participant living with a lifelong condition)

A few mentioned that some people are discouraged from applying for benefits due the complexity and the length of the forms. A small number of participants also highlighted that due to these complex applications, they commonly felt unsure about being eligible to claim benefits.

“I think some of the forms you get when you’re claiming a benefit, there’s questions in there that you need a PhD to understand. And I think they’re there to trick you, and I don’t think that’s very fair. You look at the form, and it’s over 100 pages, and if you don’t understand the question it’s asking you, you’re stuck. That’s why you need help. It’s not very easy.” (End of Life strand, participant with HIV)

“I’ve always struggled with all the forms, asking myself ‘Should I be claiming, or should I not be claiming’ and it’s just the inference that anyone who is claiming from the government is cheating the system” (End of Life strand, participant living with a lifelong condition)

A few participants were critical about being asked to complete new applications to continue receiving their PIP award as their health circumstances have not changed or they were likely to deteriorate due to their progressive nature of their heath conditions.

“I went through the equivalent of filling in a brand-new application form which involved her [staff member on the phone] asking me a series of questions about the details of the condition, the level of disability, what drugs I take, what effect they may have. All of that - it was about 45 minutes. […] then, I got a 40-page form in the post and spent hours filling it in. It came in hard copy, all of which was an entirely pointless exercise - very time consuming and deeply offensive. It’s almost as if they’ve deleted your history and everything they already know […] I don’t anger easily, but one of the worst experiences I have had, because it was so crass, was the call with them to review my continued PIP when I am clearly still terminal and am always going to be. They are trying to make you justify help on the basis of an illness that they already know is serious and is terminal and nobody wants to be in that situation, but that just didn’t seem to register with them.” (End of Life strand, participant living with a lifelong condition)

A small number of participants questioned having only the option of paper format for the PIP/DLA applications as some clients will find challenging to write due to the nature of some health conditions. They suggested that an online format should be an option.

“…for someone who has motor neurone disease, sending a form out where you have to write in it is impractical because obviously the deterioration in your fine motor skills means you can’t write. So, why, for these people [with MND], why you can’t have a form online is beyond me. In fact, there are no alternative formats, I don’t think.” (End of Life strand, participant with a terminal illness)

Challenges when accessing the benefit system online

Many highlighted the challenges related with applying for benefits online. These include not having access to a computer or a smartphone, not knowing how to use them, and not having access to internet. Some participants also thought that people who are not computer literate may feel embarrassed and struggle to get help.

“As it is all online, I struggle to understand and apply for benefits on my own.” (Carers and Care Experienced strand, survey respondent)

“…people do not want to admit when they aren’t good for technology. I know people that just hide that they can’t work it, they don’t ask for help. It might even be that they have problems reading and writing too, so even more issues than not working the computer. When you move things to be online forms and such you need to get in all the support to help people as part of the change.” (Vulnerable Groups strand, prisoner participant)

Some highlighted the difficulties of only having the option to apply to benefits online, specifically stressing the challenges with Universal Credit processes. A few participants highlighted the various problems vulnerable people face when the only option to get benefits - like UC - was through digital services. They mentioned that this can result in excluding many people from accessing benefits they are entitled to.

“Simple basic things like email addresses, lots of our clients are so chaotic that they can’t have a mobile phone for more than a day without selling it or losing it. So, expecting people to have access to the internet and set up an email address and then liaise with job workers on Universal Credit, I find is a bit unrealistic to be honest. Most of our clients will give us their logins and we’ll check it and tell them what they need to do, because otherwise they’d fall off their benefits virtually every month. I don’t think it’s really workable to have all those things in place. […] I think UC could be looked at and realise that maybe not all people have access to technology or if you’re homeless, the internet. To assume everyone can do that online I think is a huge problem.” (Vulnerable Groups strand, homeless participant)

Many who did not have a support network or access to digital services highlighted that they knew about benefits only through their support workers or informal networks. They also relied on them to help them with application processes due to their lack of computer literacy. A small number of participants mentioned that they could not have been able to complete applications without help due to learning difficulties such as dyslexia.

“The fact that you had to apply for that benefit [UC] online. I feel that, for someone with dyslexia, that’s a bit harder. So, for most of my stuff, it was my daughter who did it online. So, someone who had not got a family, they’d be struggling to understand. You know, you’re not allowed to phone up and apply for it over the phone or, you know, go into the job centre and apply for it. You just have to fill it all in online.” (End of Life strand, bereaved participant)

“They have been helping me with that in the Hub here a bit [Simon Community], trying to email or look at things and find out what the latest is. Because I’m a wee bit dyslexic so that helps. I’m okay at reading and counting but spelling and that I’m not. So, it helps to have someone to read over. And then computers I’m shit at too, so again they help me with that in here.” (Vulnerable groups strand, homeless participant)

Gathering information and evidence for application processes

Some participants reported various challenges for getting personal information or evidence required as part of their application processes.

A few participants from the carers and care experienced groups highlighted their difficulties to gather personal information and evidence they needed to apply for benefits. Challenges included providing background information for care experienced people or benefit history for an adopted child.

“I thought it [application process] was quite, you know; quite difficult because there’s so much of it and there’s so much information that they need and they need to know whys and hows and wheres and a lot of your background and […] luckily for me I’m aware of my background and my details and stuff, but there are a lot of .care experienced children that I know that maybe don’t have a greater understanding that I do, so it would be quite difficult for them to access it themselves.” (Carers and Care Experienced strand, care experienced participant)

“…adopting the girls at the age they were, and even then it’s difficult to do because when you do apply for things like that [child benefit], you have to give their history. Now, in an adoptive situation, especially as ours was, we’re not told which foster parents, if any, or their birth parents, have applied for that […] there’s things that we can’t answer as adopted parents, that folk can’t get, that we simply can’t answer the question, which makes it a little bit more tricky.” (Carers and Care Experienced strand, kinship/foster carer and adoptive parent participant)

Some participants from the vulnerable groups, in particular those who experienced homelessness or were in custody, highlighted challenges because they did not have a permanent address, a bank account or an identity document to start and follow up benefit applications. Furthermore, a small number of participants who experienced homelessness reported delays on their benefit payments because they were changing their address frequently.

“When I got release from prison, they were just introducing UC, that was the hard part. A lot of people come out of situations like that or living on the streets, they’re not gonna have ID or papers like that. Lack of ID’s a big problem for a lot of people. If you don’t have a driving license or a passport, then you’re pretty much screwed.” (Vulnerable Groups strand, homeless participant)

“What I found with the benefits system it was like, ‘Give us your address or your email address’ and I said I didn’t have an address, ‘I’m homeless’. And they said ‘Okay, well then give us your email address’ and even that I had to ask the library if it was alright to set up an account. This was just one person’s journey to get the money I was entitled to and it took almost a year to get it all set up. It’s not a glitch, the whole thing’s screwed.” (Vulnerable Groups strand, homeless participant)

A few participants noted challenges to obtain evidence as part of their application. A couple of participants felt that they were frequently asked to provide further evidence during the application process when they thought they already provided all the necessary evidence for their claim.

“…in the background they’re constantly reviewing everything and playing a little bit of catch up or something’s going on. Thinking, like you say you’re on that page I’m on and I’m making the right track now - everything is fine. And then something comes along or they’ve found another thing that you need to provide and you go backwards. (Survivors of Abuse strand, survivor of abuse participant)

Some noted that getting evidence related to mental health conditions was difficult. Related to this, a small number of participants felt that the medical evidence they provided was not recognised as much as it should be as part of their medical assessments.

“…when you’re working with people with mental ill health, to try and get that evidence, I think it’s a really misunderstood area around the disability benefits in general…” (Carers and Care Experienced strand, kinship/foster carer and adoptive parent participant)

“All the time I’ve been having to ‘prove’ I have a mental health condition. You have to repeat yourself to different people, and that’s even with my doctor, who has known me for years, telling them. They should trust him as a professional and an expert. Whereas the benefits people getting in touch with me don’t have any medical expertise.” (Vulnerable Groups strand, prisoner participant)

A couple of participants mentioned the short timescales given for the turnaround of the evidence as part of their benefit applications. Others highlighted that it took them a long time to collate several pieces of evidence to start completing the application forms.

“The other thing is the timescales. If you fill out the form, they only give you a week to send in your documentation which is a very short period ’cos, by the time you get through to them, and they write the letter and send it over. And it’s the same with the GP.” (Vulnerable Groups strand, participant with HIV)

“It’s a 70 + page paper form which requires loads of evidence. It took me over a year to get round to applying and finding all the evidence.” (Carers and Care Experienced strand, survey respondent)

Health assessments

Many participants experienced stress and humiliation when attending health assessments. Some thought the process of medical assessments is dehumanising and it is carried out in a distrustful atmosphere.

“I think when you go for assessments with the DWP, they do treat you differently, they don’t treat you like a person. They do speak down to you and, with some of the health issues I’ve got, you really don’t need that. Firing questions at you and not giving you time to answer. They don’t treat you like a human being.” (Vulnerable Groups strand, participant with HIV)

“It is barbaric and it has caused me a number of dark moments of upset, grief, crying, rage and anger at the entire system and what it is forcing me to do. It is utterly degrading…” (End of Life strand, participant with terminal illness)

Others noted the questions during the assessment were closed questions based on a tick-box exercise with no room to account for fluctuating health conditions, in particular mental health conditions. A few thought the assessments were purposefully designed to make it hard to get successful benefit claims.

“I’d say the overall scenario is that you’re coming at it [treated] with total mistrust. From the very start you’re having to prove every single thing, and as someone with an actual disability, it is quite demoralising. If you’ve got access to people’s medical records, it shouldn’t be advisors even though it’s been a few days training online. That’s the message being given to the public: we’re here to make sure you get cut off. […] I believe it’s meant to be confusing; I don’t think it’s a mistake. I think they specifically try to confuse you to make it seem like you’ve failed some sort of test and then they can cut off your benefits.” (Vulnerable Groups strand, homeless participant)

Some participants felt that that the views and comments of assessors were subjective. They thought that the outcomes of the benefit award decisions were the result of chance, mainly depending on the subjective comments of the assigned assessor.

“So many people have received decisions that are just not fair and that’s a real downside to me. It’s a lack of consistency even for people living with the same conditions.” (End of Life strand, participant living with a lifelong condition)

Others noted that the medical assessment reports gave inaccurate accounts of their health conditions. They said the reports did not reflect correctly what was said during the assessment nor how the evidence provided was considered for the outcome of the award.

“They send you a copy of the assessor’s comments, and you see what they’ve said. And loads of it was a pack of lies. Saying I’d said stuff that I didn’t say and saying that the assessment took 40 minutes when it only took 20 minutes.” (Vulnerable Groups strand, participant with HIV)

“It doesn’t explain their reasoning behind their decision, so they’ll say I’ve decided that you don’t need help, or your daughter doesn’t need help with X, Y, Z, but it doesn’t really explain how they’ve came to that conclusion […] there’s no sense of them actually looking at all the evidence in front of them and not being biased.” (Carers and Care Experienced strand, kinship/foster carer and adoptive parent participant)

Some participants noted that attending the assessment with support or advocacy workers helped them to be treated more fairly by assessors. They thought with advocacy support during the assessment they were more likely to get successful claims.

“BLESMA have supported people who have got their benefits taken off them, told to work, but then they have appealed and got them back. […] I’ve been told when I do get my PIP assessment BLESMA will send someone to accompany me, another regional representative. Charities are having to get involved and supervise things in order to help people be treated fairly.” (Vulnerable Groups strand, veteran participant)

“I’d get a letter saying my claim was about to end. So upon getting that, I’d just get in touch with my support worker and the disability rights group. I’d get my doctor to write out the documentation to show that this is real life: there’s a MRI, CT scan, all the medical documents. Then when it comes to going to the means test, just to make sure I had somebody there to witness what was going on in the office. At least that way it doesn’t matter what happened in that office. I find that when you bring someone else they ken they cannae demoralise you.” (Vulnerable Groups strand, homeless participant)

A few were critical about the frequency of health reviews for some long-term health conditions unlikely to change. A small number mentioned that they requested in home visits but those were denied.

“Now, surely, if you got DLA for life, you should get PIP for life instead of having to apply yearly or three yearly. Some people are never gonna change, like me, so surely they can put something on [their system] that notifies them that this person is not going to get any better. You know, because every time I have to relive my horrific experience again and again and that feels like they’re punishing me for having an accident […] I’ve seen doctors, I’ve seen panels - it’s obvious that I’m seriously disabled and that’s never ever going to change.” (End of Life strand, participant living with a lifelong condition)

“When I did the form last time, I asked for a home-visit ’cos I said it makes me really uncomfortable [going in], but they said no, if you don’t come in you get your money cut off.” (Vulnerable Groups strand, participant with HIV)

Stigma and distrust from the benefit system

Many participants felt discriminated and stigmatised against when interacting with benefit staff and when applying for benefits with the DWP and JCP. They thought the system treats clients as ‘scroungers’ or criminals trying to commit fraud by using the benefit system.

“It’s a completely different thing dealing with benefits. Everything becomes harsh and rude and undignified. You’re made to feel like you’re scum because you’re needing help. […] The whole process for me, from the get-go, as soon as you enter that Jobcentre, the whole thing is set up for you to fail. The whole thing’s just a run-around, a demoralising thing.” (Vulnerable Groups strand, homeless participant)

“Makes you feel that you are not applying for a benefit, you are getting a reward for being good. That’s how it feels. I understand some people milk the system, I’ve seen people to in the past who have got away with doing that. But the system sets you up to be adversarial.” (Vulnerable Groups Strand, participant with HIV)

Some participants said they felt the whole culture of the benefit system is underpinned by distrust and suspicion towards the client. They felt frequently judged for relying on benefits and not being on paid work. Some felt that their individual circumstances were not considered as an explanation for needing financial support. Many thought the benefit processes were a dehumanising experience.

“I think if you’re on benefits you’re probably being looked down on. You’re just seen as not even a human sometimes; the way people treat you. They don’t care, it’s like they look at you like well you chose to go and get pregnant and not have a job and things like that. Nobody cares that you might have been working your whole life and things have happened that are out of your control. It’s just seen as well you’re on benefits, you’re not helping the economy, you’re not helping anything, you’re just sponging off everyone that works.” (Carers and Care Experienced strand, single parent participant)

“I feel degraded, I’d rather they were honest […] And that’s affecting my mental health and it’s affecting me. Sometimes I just think I could go get dodgy Valium and that, I don’t want to do that. I just want help to do things properly.” (Vulnerable Groups strand, homeless participant)

This negative perception towards the benefit system made many participants anxious and stressed when having to carry out benefit processes. A few mentioned that going through these processes exacerbates their mental health conditions. A small number of participants would avoid in person communication with benefit staff as a result of how they made them feel.

“They [benefit staff] don’t know your history or your medical history, but they’re judging you. So you’ve got a doctor saying you’re unfit to work, they fill out a form, and then they turn round to say you are fit to work. […] I don’t like face-to-face interviews because the person assessing you, they’re not very nice and my anxiety shoots through the roof. The last time, I came out and I was shaking, my heart was beating really fast. They don’t treat you like a person at all, they have no communication skills.” (Vulnerable Groups, participant with HIV)

“I am on medication for anxiety and so something like this [application process] obviously makes that a lot worse. And, I don’t think they take things like stress and depression and anxiety into account. […] it’s really stressful and I’m not sure they’re really thinking about that when you speak to them [DWP staff].” (End of Life strand, participant with terminal illness)

Some felt distrust and suspicion towards benefit staff. They thought they were not providing all the benefit information about what they could be eligible for. Others were afraid of making any mistake during the benefit process as they felt that would result in their claim to be unsuccessful.

“When I’ve gotten advice on the past, say from the Jobcentre, I’ve felt like people are trying to lead you. Trust means so much, you need to trust the people helping you. When I have been given advice from the Jobcentre you feel that they are trying to tell you as little as possible to help you...” (Vulnerable Groups strand, prisoner participant)

Waiting times, benefit changes and financial hardship

Several participants gave accounts of the lengthy waiting times for various benefit processes. They reported how these waiting times made them experience financial hardship.

Many participants who had experiences with UC processes highlighted that the waiting times for their first payments were too long and impacted negatively on their finances. A small number commented the adverse consequences of asking for advance payments as they had to pay them back when receiving the next payments. Few others also noted the lengthy wait times for receiving the new UC payment once they reported changes in their circumstances. They stated feeling stressed or worried because of these waiting periods.

“I was reeling from losing my job and then because of my health deteriorating it made sense to move back to [place] and back to where I had family near. And the day I moved back I put in a Universal Credit application. If I didn’t have the support from my parents I would have suffered because that 5 week wait is shocking.” (Vulnerable Groups strand, participant with HIV)

“…they [benefit staff] say to you ‘do you want a loan to tide you over’. But of course, but then you are paying the loan back. They take it right back off you […] It was just changing addresses all the time. Sometimes your benefit was late because they were updating your details again, and then the payment was late. […] It was hard to budget and buy things. (Vulnerable Groups strand, homeless participant)

Some participants also experienced lengthy waiting times for getting award decisions, mostly for some disability related benefits like PIP or DLA. They also highlighted the lack of updates during the waiting period and the financial uncertainty that it caused them. A small number of participants stressed the pressure of time against their particular circumstances such as living with a terminal illness or needing to pay for the funeral of their loved ones.

“For the funeral payment, I’m sure I did it over the phone. That was okay, but again it was the time. I think I got the money on the actual day of her funeral and so it’s a worry. I didn’t have money to pay the funeral director. I paid them what I could, like £300 on the day, but it’s a long wait if you don’t know what else you’re going to get. And, I remember, on the day of the funeral, I handed £300 to the funeral director and he was saying, ‘you don’t need to worry about that just now’, but I was.” (End of Life strand, bereaved participant)

“… the way in which the DWP have dealt with my claim […] is abhorrent and barbaric. We should not, when we have this diagnosis, given the timescales that we are given, we should not have to wait 6 months for the DWP to get their arses in gear, to be frank. We should not have to be chasing them up, going to our MSP and Citizens Advice Bureau. We should not have to lodge complaints; we should not have to be on the phone begging people to show some humanity in processing this claim.” (End of Life strand, participant with terminal illness)

Some participants also negatively perceived the lack of any updates about various benefit processes. They were not made aware of waiting and specific leading times or they did not receive any acknowledgment from agencies about receiving their applications or new evidence they provided as part of their claim. As a result, a few of them were proactively trying to communicate with the DWP or JCP without success.

“The PIP benefit took a long time; it was a paper application and took over five months before I got any sort of response. I tried to call and was put on hold for over an hour quite a few times. There is just no communication.” (Carers and Care Experienced strand, single parent participant)

“…one thing that would help people would be to know how long changeovers are going to take. If it’s going to take six months, you need to let people know. The DWP must have known how long it was going to take them to get through all of the applications and conversions, and to me they could have communicated that better.” (End of Life strand, participant living with a lifelong condition)

Many participants reported that the lengthy waiting times for getting payments and receiving award decisions caused them financial difficulties such as a needing to use foodbanks, borrowing money and relying on their family networks to get by.

“Once you get your benefits, you got to sit and wait weeks you know. So that’s a worry. I had to use the foodbank, because I didn’t have any money for food.” (Survivors of Abuse strand, survivor of abuse participant)

“I don’t feel like the amount is enough even to cover the basics; food, bills and clothes. I would get nearer the end of the month and find we had run out of hot water, I couldn’t put more money in the electric meter.” (Vulnerable Groups strand, prisoner participant)

Other participants mentioned experiences of benefit overpayments, sanctions, or lack of knowledge about benefit eligibility as factors which caused them financial hardship.

“… [difficulties due to overpayment] it basically means I have to rely on, to borrow money from my family until I can afford to pay rent, and then I have to pay them back. So, I think I’m in a very fortunate position that my family can lend me money. I know a lot of people don’t have that.” (Carers and Care Experienced strand, single parent participant)

“… I’m like trying to get help from my partners and my family and like foodbanks and things like that because we don’t know what’s out there [benefits]. It’s not really kind of highlighted or anything.” (Carers and Care Experienced strand, care experienced participant)

“I met someone who’s been sanctioned for three years and he’s got two years left and I just said, ‘How do you survive?’ He’s just living off foodbanks and charities.” (Vulnerable Groups strand, homeless)

Many participants expressed their views in relation to the value of benefit payments being too low, and not matching the cost of living. Others thought the value of the payments were low because it deters people to rely on benefits. A few participants who had experiences of being in custody mentioned that they felt their basic needs such as housing and food were better covered when being in jail.

“Since Universal credit was introduced the amount of money everyone gets has gone down. £40 reduction in a month is huge for people. That means £20 less a fortnight to spend on things like your bills. And you end up depending on foodbanks when you didn’t used to. The dole doesn’t cover the amount things cost.” (Vulnerable Groups strand, prisoner participant)

“You end up thinking to yourself, well I’d be better off in the jail than I am now. Because you have a roof over you and a three-course meal. I wake up and think about the stress and the struggle and think I’d be better off in there. […] They expect you to live off £7 a day or something to cover everything. I couldn’t cover my bills with my benefits, I ended up on the street.” (Vulnerable Groups strand, homeless participant)

“They [benefit systems] haven’t thought about benefit amounts to cover the costs of things now. […] People I know are having to make choices on feeding their family or paying for their housing, they pick feeding the family, but then if you end up evicted it ends up even worse for your family. I know a lot of people like that where I’m from. People are having to make tough choices every day.” (Vulnerable Groups strand, prisoner participant)