Social Security Experience Panels - Seldom Heard research programme: carers and care experienced

This report presents the main findings of the first wave of research with carers and care experienced people as part of the ‘Seldom Heard Voices’ research programme.

This document is part of a collection

Key barriers with the benefit system

Common barriers experienced by carers and care experienced people in our research are presented below.

Lack of existing knowledge and difficulty finding information

As set out above, people from the carers and care experienced strand often lacked knowledge of the benefit system in general, and knowledge about their potential entitlement in particular. This was compounded by difficulties finding the right information. These twin issues were a key barrier and could lead to participants and respondents missing out on or delaying benefits they were eligible for.

Participants and respondents also told us that when their circumstances changed, and there was a potential impact on benefit entitlement, once again the lack of knowledge and hard to find information became an issue that was experienced as a barrier.

“As a foster carer, I am not sure what I would be entitled to for the child within my care, then moving onto being an adoptive parent. I can now apply but due to never using benefits in the past, I do not know what or if I am entitled to anything.”

[Kinship/foster carers and adoptive parent, online survey]

Another issue experienced by the respondents and participants was potential misinformation. They told us that not only was the information not streamlined, but that they found Government websites, public sector workers, benefit staff and some third sector organisations could provide inconsistent information and incorrect information which compounded the confusion they felt. Participants felt that information supplied by DWP and Job Centre Plus staff should have been correct and consistent but a few of them were given conflicting, confusing and insufficient information.

“Trusted organisations don't have the correct information to inform people.”

[Care experienced respondent, online survey]

“I’m still getting the medical certificates because I’m still unable to work. I wasn’t told that I could be getting other things on top of this because of my mental health, and I’ve only been advised by the support worker here [support organisation] just now that there is other options out there that I could have been getting. They [Job Centre Plus staff] didn’t tell me the options that they should have told me in the first place. It’s their job to inform me that this is what I could have applied for.”

[Single parent, interview]

Participants told us this inconsistency led to a tendency to distrust public sector workers to provide them all the information of benefits they could be eligible for. This distrust was experienced more typically when interacting with Job Centre Plus staff.

“You’re probably better off Googling it than asking at Job Centre Plus. So, things they say you’re entitled to things that you’re not entitled to. There’s a lot of misinformation.”

[Single parent, focus group]

Challenges with accessing the benefit system online

There were mixed experiences concerning accessing information and applying for benefits online. Whereas some mentioned their online experiences as simple and straightforward, others highlighted barriers to accessing information and the application processes online.

Some did not have access to a computer or a smart phone so could not get online. Others had access but not the experience of using the internet. A small number of participants and respondents told us that when they did use the internet, online searches did not help to find accurate or clear information on benefits they may be entitled to.

One issue was that some found government websites difficult to navigate, another that the information could be limited or confusing. Participants and respondents also reported they found digital services difficult because they were impersonal and they would prefer face to face.

Further, we found that some people experienced long delays waiting for information that they had requested online.

“And everything is like online. Everything is online. And people aren’t geared up. A lot of people can’t do things online. You don’t get a face to face person.”

[Kinship/foster carers and adoptive parent, focus group]

“…the difficulty for people that can’t be online. It’s a barrier for a lot of people. You see a lot of people in libraries struggling with it.”

[Single parent, focus group]

Stigma and distrust from official channels

People from the carers and care experienced strand of research reported feeling stigmatised, judged and discriminated against by public sector staff.

Participants and respondents reported experiencing a negative attitude from some benefit advisors, work coaches and other public sector workers, when claiming benefits. This was particularly the case when communicating with DWP and Job Centre Plus staff.

Further, people reported feeling a lack of empathy and compassion when interacting with benefit staff, including staff who carried out work and health assessments.

The attitudes they experienced were not helped by the physical environment of Job Centre Plus which they found unfriendly and not welcoming.

Some in the research also distrusted that DWP and Job Centre Plus staff as mentioned above. They expanded on this distrust saying that benefit advisors did not have accurate and comprehensive knowledge about the various benefits and their eligibility criteria. In some cases participants and respondents found that DWP and Job Centre Plus advisors simply did not want to provide information and they perceived that this was put potential clients off claiming benefits, even if they were entitled to them.

All these experiences made some respondents and participants nervous, anxious, embarrassed and stressed. They reported that they had experienced a general negativity in the whole culture of the benefit system and this prejudice against claimants was a symptom of that. They worried that some claimants might not speak up or question the information provided by the benefit staff out of fear of being rejected or sanctioned.

“The questions that were asked in my fit to work assessment really made my mental health a lot worse. But it’s not the questions, it’s the way they ask them. […] And I’ve heard a lot of people say that, and it put me off going in the first place. And if I hadn’t been taken by my friend to go, I never would have gone and I never would have got the benefits because every time I set foot in the Job Centre Plus, I’ve felt very much like a number and very much beneath the staff. And the questions, everything, even to do with suicide, self-harm, they’re monotone, straight-faced, can’t even look at you.”

[Care experienced participant, interview]

“It’s so scary. You always feel like they are trying to trip you up. You feel guilty, for applying. They sometimes are so abrupt that you feel belittled.”

[Care experienced respondent, online survey]

Complexity of the application forms

People from the carer and care experienced strand reported difficulties with application forms.

Respondents and participants typically mentioned that the structure and the wording of the application forms were prescriptive, complex and long. The language and jargon was unfamiliar and the closed (tick-box) questions did not allow them to convey the nuances of their particular circumstances. Many also felt that the questions were repetitive and intrusive. A few noted that they did not understand some of the questions. These difficulties led to a perception in this group that the forms were designed to make it hard to complete the forms correctly.

Many relied on help to fill out the forms correctly and we found a few cases where participants had claims rejected because they did not have help to complete them. This was not to do with eligibility rather that without support they were not completing them correctly, as once they got support to complete the application form; their claims were accepted.

Altogether, the complexities led to an amount of effort, time, confusion and stress which led some to postpone a claim. A few also had second thoughts when it was time to reapply due to these barriers.

DLA and PIP application forms were highlighted as the most complex and difficult forms.

“…the repetitiveness of it [the form] is very strange. And it’s very difficult, if you care for somebody who needs a significant amount of care, it’s quite difficult to put what that’s like in a box. They ask, is it one time a night, is it two times a night. Well sometimes yes and sometimes it’s six times a night they get up, sometimes it’s seven times. Sometimes it will only be two times. But there wasn’t a bit where you could actually write a narrative around that rather than tick a box…So, it’s quite scary to know where to put your tick, to accurately describe your role caring for this individual. It’s quite tricky, what do you want me to say here, because none of these really apply. He’s a human being, not a statistic, if that makes sense.”

[Kinship/foster carers and adoptive parent, interview]

“I’m entitled to disability for my son…it’s such a rigmarole and I’ve just not reapplied for it. My son’s got severe ADHD, ADD and Tourette’s, so he’s entitled to disability. But because he’s at a middle age where he’s 16 in a couple of weeks, I’d have to change it when he’s 16 to PIP. It’s disability for under 16, then it changes to PIP. And I was like, do you know what? I’m not even going to bother. And I am entitled to it and its quite a bit of money, and he used to get a bus pass and everything. It’s the form is massive. It’s about 60 pages long, you need letters from the ADHD doctor, you need to take it to their school and get them to confirm what he’s like at school. You need another family member as well, or somebody that you know, to say what the child is like. It’s like three or four people have to fill out a form about your own child.”

[Kinship/foster carers and adoptive parent, focus group]

Challenges with health assessments

Most participants and respondents who had health related assessments experienced embarrassment, anxiety, stress and humiliation.

They reported that Work Capability, DLA and PIP assessments were characterised by an environment of suspicion and scrutiny, and assessors lacked empathy and gave respondents and participants the feeling of being distrusted.

As assessors were not health professionals, many reported a perception that they were not qualified to identify some health conditions, in particular they lacked expertise to identify and recognise the varying nature of long-term and chronic illnesses. This led some participants and respondents to question why there was no recognition of the medical evidence they had already provided to the assessors.

This was compounded by, a similar issue reported with application forms above, the restricted nature of the closed (tick-box) questions they were asked in the assessment. Such questions left no room to capture the fluctuating nature of some health conditions.

In addition, a few people in the research found the questions unnecessarily intrusive and they were made to feel shame and embarrassment.

The research found that people were left with a feeling that assessors wanted them to fail and many highlighted that without the support from third sector organisations, they would have not been able to go through the assessments processes.

Finally for this issue, a small number of carer and care experienced people noted that assessment reports were inaccurate and one-sided. And some were critical about the frequency of reviews for some long-term health conditions that are unlikely to change or resolve.

“I just don’t get how one person can sit there and judge you on one session by asking questions repetitively like you would do in a call centre, they read off these things and that is it”.

[Single parent, focus group]

“It’s almost like they’re undermining you, cause they’re trying to make out that you’re lying to them. They speak to you in a way like, ‘you’re not telling me the truth’”.

[Kinship/foster carers and adoptive parent, focus group]

Long waiting times, changing benefits and overpayments

Respondents and participants reported experiencing financial hardship due to long waiting times, changes in eligibility during transfer to new benefits, interactions across different benefits and overpayments. They reported precarious economic experiences such as getting into debt, rent arrears and the need to use foodbanks. In few cases, these difficulties led to some experiencing constant stress and the intensification of mental health problems.

Long wait times between applying and receiving benefits were commonly noted in relation to UC, disability related benefits, Tax Credits and KCA. These also occurred when people were transferred to UC. Participants told us that their only choice was to request advance payments which left them short when the payments came through. Further, when transferred some perceived that they received less money because of changes such as the benefit cap and the ‘bedroom tax’.

A few also indicated that timescales to obtain decisions from assessments and appeals left people without any financial support during the long waiting period.

Interactions across benefits led to some people experiencing a reduction in the amount they received and even the termination of benefit payments.

Further, losing eligibility for some benefits due to being transferred to other benefits was not unusual. In some cases, benefit payments were stopped without the client being made aware of the changes.

One example of losing eligibility came from a student who reported being disadvantaged in the benefit system.

“I’m a student so it’s a total mess. I’m hugely disadvantaged when it comes to benefits and different advisors say different things.”

[Care experienced respondent, online survey]

Another source of financial difficulty was overpayments. Even where participants had provided information on their change of circumstances well in advance, they still had to pay the money overpaid through no fault of their own back.

“The period you have to wait for a decision. I had to wait 5 weeks for a payment, I am a care leaver with no family support so this was really difficult. I was made to get into debt including with the Job Centre Plus with the advance payment you get to have to wait. So my payments are now reduced due to the advance payment I had no choice but to take to live.”

[Care experienced respondent, online survey]

“…the application time for any of these benefits, it’s absolutely ridiculously unrealistically long. I mean, eight weeks you need to wait for a reply? And sometimes if there’s a backlog, it can be 10-12 weeks. You try surviving on reduced benefits for 12 weeks, you know what I mean? I’ve never had to use foodbanks as much as I’ve had to use foodbanks this year. And it’s embarrassing, because I’ve always provided for my children as best as I can on the money that I get. I’m not the kind of person that likes going cap in hand and asking people for things.”

[Single parent, interview]



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