Social Security Experience Panels - Seldom Heard research programme: vulnerable groups

Key challenges and barriers with the benefit system

As participants related their experiences with the benefits system, some significant themes emerged, pointing towards challenges and barriers commonly felt across the three sub-groups.

Key themes

• Many participants indicated that finding out about which benefits they are entitled to is difficult, due to lack of awareness on where to get information. The benefit system was perceived as complex, unfamiliar and participants felt there is a lack of readily available information.
• For some, a lack of face-to-face interaction with benefit agency staff was felt to perpetuate such difficulties, as they found it difficult to navigate the benefits system online.
• Participants commonly reported that applications forms and assessment procedures were too inflexible to accommodate their individual experiences.
• The complexity of some application forms for some benefits (e.g. PIP, DLA, UC, etc.) were described as a barrier for various participants.
• Some participants felt unsure whether they were filling in forms the 'right way'. Feelings of insecurity increased participants reliance on third sector services to help fill in forms.
• Some participants felt stigmatised and discriminated against when interacting with staff from the benefit agencies.
• Some participants felt official reports, based on health assessments, were inaccurate and one-sided, and that the nuance and complexity of their medical histories were not adequately captured.
• For those who had experienced trauma and other mental health issues, health assessment staff were found to be poorly trained/ insensitive to such issues.
• For participants who had experienced the benefits system over many years, the system was described as having become increasingly complex, inflexible and inaccessible, and less able to capture complex health issues.
• Many participants were positive about the regularity with which payments were received and the delivery method (via bank account). However, gaps in payments when transitioning from one benefit to another resulted in financial difficulties (this was particularly true when transitioning to/from UC).

Finding out about eligibility

The benefit system was perceived as complex and unfamiliar, with a lack of readily available information. Complexity, unfamiliarity and a lack of available information were experienced by participants as barriers to finding out about eligibility.

Many participants from across the three sub-groups found it difficult to find information about their eligibility for benefits. Complexity of the benefit system and not knowing where to look were given as reasons for this: "…the benefits system is so complicated" stated one research participant.

For some, a lack of face-to-face interaction with benefit agency staff was felt to perpetuate such difficulties, in particular they found it difficult to navigate the benefits system online.

Several participants, from each of the three sub-groups, commented on the coincidental or 'roundabout' way in which they were made aware of their eligibility for benefits. One research participant said they were motivated to take part in the research because they felt there were others like them who are eligible for "hidden benefits"; benefits that are unpublicised and inaccessible without expert knowledge.

One research participant complained of there being no "one-stop shop" to find out about eligibility. Others related how they had been given conflicting information on eligibility criteria from third sector organisations and job centres.

A research participant with several years' experience of claiming benefits explained that the eligibility criteria kept changing, so that they were no longer sure what they were eligible for: "they kept changing the rules on how far you could walk".

Another research participant found that as more information about benefits moved online, they no longer found information on eligibility accessible. They described how they previously relied on a "brown envelope" coming through the post containing information that explained which benefits they were eligible for.

[Participant] receives PIP, but only came to apply for it in a roundabout way via a welfare rights officer when he was in contact with them about something else. He had no idea he was eligible… Overall, he feels that the system is very complicated and that unless you have someone guiding you through it, you're liable to not be getting everything you're eligible for.

[Homeless participant, Glasgow]

Citizens Advice …suggested that [participant] would be eligible for Severe Disablement and Carers Allowance…She was surprised as she didn't think of herself as either severely disabled or as a carer. She was awarded both benefits.…

…she feels that there may be many similar individuals who are eligible for benefits that are "hidden"… "that the government doesn't publicise."

[HIV/Hep C participant, Glasgow]

Complexity of benefit application forms – filling it in 'the right way'

Many participants across the three sub-groups stated they found benefit applications too difficult to fill in for benefits including PIP, DLA, and UC. Reasons given ranged from the language used in benefit forms being too complex or full of jargon, to forms being too long and complicated.

There was also a strongly held perception of being a 'right way' and a 'wrong way' to fill in forms (precisely how to fill in forms the 'right way' was unknown to most participants). For many participants who felt unsure if they were filling in forms the 'right way', this increased their reliance of third sector services to help fill in forms (see section below on application forms in the veteran sub-group section for more information).

A few participants also reported that difficulties filling in forms were compounded by difficulties engaging with DWP support services. Long call waits were pointed out as a barrier to gaining help over the phone when filling in forms. Advice given by DWP advisors was also described by a few participants as being poor or unhelpful.

[Participant] describes how she "hates the forms and the form filling" and that the process is "horrible."

… Above all, she is negative because "they do not take account my personal situation." She added: "If you word it the right way then you are fine. If you don't then you aren't."

[Homeless participant, Edinburgh]

Although [participant] tries to fill in social security forms herself, she thinks they've become more complicated and at times she's had to ask for help (from Social Bite, from Citizens Advice). Sometimes she's been unsure what she is being asked.

"One question was, 'can you understand and read written, complicated words' or something....and one of the things underneath it says, 'would you understand it if you were encouraged?'...if I don't understand something, I don't understand it...maybe explain it to me."

[Homeless participant, Glasgow]

Inflexibility, no room for nuance or explanation

Some participants described how the rigid format of benefit application forms and assessment procedures were insufficient to accommodate information they wished to give about their individual circumstances. Across each of the three sub-groups, participants voiced concern and frustration at not being able to express, or have recorded the nuances of their individual life experiences.

Benefit application forms were characterised as being too rigid and too prescriptive in the kinds of response the DWP required. This extended to the assessment process. One research participant described how the lack of personalisation in the PIP assessment process added to their distress and frustration and they found it was difficult to respond to questions requiring very specific answers.

Some participants also felt that official reports, based on health assessments, were inaccurate and one-sided, and that their medical histories were not adequately captured.

…[participant] felt that with a lot of the questions designed to assess her, they either weren't relevant, she didn't think they were a good way to assess her situation and / or she wasn't allowed to explain herself / any nuance in the answers (they were often yes/no questions).

[Homeless participant, Glasgow]

She found the assessment stressful and frustrating: the questions were difficult to answer (for example how far, in metres, can you walk?) and seemed to require very specific answers. She was worried that she might be giving the "wrong" answers and felt that the questions were very "standardised", that they didn't take individual circumstances / experiences into account.

[HIV/Hep C participant, Glasgow]

Stigma: Mistrust inbuilt in the system

While some participants feared giving the "wrong" answer in benefit applications and assessments, others saw these difficulties as DWP trying to 'catch you out' - purposefully making it difficult so to discourage people from applying.

For a few participants, this left them feeling stigmatised and discriminated against. Some voiced concern that the benefits system often treats claimants with suspicion. As one research participant stated, they assume you are 'trying to "play the system"'. For others, feeling stigmatised and mistrusted was described as being made to feel less-than-human, as being deprived of dignity and respect. These feelings were notably voiced by participants who experienced the PIP assessment.

The perception of the system being rigged, alongside feeling mistrusted and stigmatised, increased participants reliance on third sector organisations to help fill out forms.

[The participant] described dreadful experiences of claiming PIP – in his view, when claiming the benefit, the DWP "treated me like a criminal, like I was a scrounger. They don't help people."

[HIV/Hep C participant, Edinburgh]

"I felt like a 2 year old sitting there and it [PIP assessment] was like an interrogation... you're no treated like a human being. She wasnae caring....it was like she was resentful that you're getting benefits....you could feel it just the way she was looking...it was like, 'why the **** should you get this and you're no working'."

[Homeless participant, Glasgow]

Writing the assessment record: a one-sided process

While a particular source of frustration for participants was their inability to express in their own terms their life experiences in application forms and during assessments, it was in relation to assessment reports that concerns were most strongly raised and precise examples given.

A few participants from the Veteran and HIV/Hep C sub-groups who had undertaken PIP and/or DLA assessments described their experience of reading assessment reports and finding them to be incorrect or not representative of their experience of the assessment (this is mentioned in more detail in the veterans sub-group section).

Each perceived that after the assessment the decision to award or deny them PIP/DLA benefit rested on information provided in these reports only; that reports were one-sided and based on the subjective view of the assessor during a single interaction. A notable concern was that medical evidence from GPs or mental health specialists was not taken into consideration.

Participants were critical of a social security system that does not allow for reports to be revised or co-authored by the research participant themselves or an independent witnesses, without going through a stressful appeals process.

The report of the meeting … did not correspond with his [the participants'] own account. In particular, he said that the nurse had described how he had shown her that he could draw up a syringe. But he said that he didn't leave his chair during the meeting and that he doesn't have syringes in the house… it was almost as if the report concerned a completely different person. However, it was on the basis of this report that he was denied PIP / was offered it at a lower level.

[HIV/Hep C participant, Kilmarnock]

Long term perspective: Increasing complexity of the social security system

Some participants had over a decade of experience of the benefits system, providing a long-term perspective on continuity and change.

For participants who had experienced the benefits system over many years, the system was described as having become increasingly complex, rigid and inaccessible, and less able to capture complex health issues.

One research participant perceived that the amount of evidence they are asked to provide has also increased, to more than they considered necessary.

Participants reported that they had increasingly found the benefits process more difficult to navigate, while, for a few participants, these changes left them feeling disengaged with DWP.

As someone who has had to claim benefits of varying kinds on and off over many years, his view is that the process has becoming "increasingly problematic" – in his view in the last five years "it has got more and more difficult to claim over time". He says that you now need more forms of ID, passport, driving licence and bank account details – [i]n his view this [is] "over the top" and leads to "disengagement" with the DWP.

[Homeless participant, Edinburgh]

Mental health and training of assessment staff

For participants who had experienced trauma and other mental health issues, health assessment staff were found to be poorly trained or insensitive to such issues.

PIP assessments were a particular source of grievance. Several participants described how assessors, rather than base their assessment on medical or psychiatric evidence provided by medical professionals, made their own assessment of the participants' mental health status within the assessment.

The assessors were perceived to be unqualified 'just nurses or assistants'. Yet participants felt that the outcome of an assessment was based on these one-off encounters.

Several participants detail how assessors pushed them, during the assessment, to justify how or even if they had a mental health condition. One research participant reported having several panic attacks during the assessment. This coincided with the participant feeling he had to re-tell stories of personal trauma to justify his PTSD diagnosis.

Another research participant reported how, during the assessment, she was told it was necessary to undergo a physical examination with a male assessor. As a survivor of childhood sexual abuse, the participant found the examination upsetting, more so as her request to be examined by a female assessor was denied (see below in the Veteran sub-group section for more detail).

Health assessments left many participants feeling humiliated and degraded, and in some cases, triggered additional traumatic experiences.

"All the questions...it was one of the most humiliating, degrading things that you can do to a human being...question their mental health. These people that are assessing you are not even qualified doctors or mental health workers...these are just nurses or assistants...it's wrong."

[Homeless participant, Glasgow]

Payments and financial hardship

When participants received benefit payments they were usually happy with the regularity of payments and the delivery method (with the exception of the homeless sub-group).

However, problems reportedly occurred in relation to UC. Notably, financial hardship was experienced during trials when UC was first rolled out, or when participants moved to UC from another benefit. This was largely due to the waiting time from a previous benefit being cut to receiving their first UC payment (reported to be between 8-14 weeks).

Participants described having experienced financial hardship due to the above factors, despite some reporting that they received advanced payments. Moreover, a few participants explained that in the 'early' days of UC, payments were 'chaotic', 'slow' and 'irregular'.

For some participants, they feared being moved over to a different benefit type, notably PIP, because they anticipate this will bring financial hardship.

He has general worries that his benefits are going to be reduced (for example when he's moved over to PIP) since money is already very tight, particularly when he's heard a lot of "horror stories" on the news / internet about people having their benefits cut with no rhyme nor reason.

[Veteran participant, Aberdeenshire]