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

Annex A: Main challenges concerning specific sub-groups

Participants highlighted a range of issues which represent challenges and barriers for accessing benefits. Some of these were more common for specific sub-groups.

Homeless

Key themes

• Of the three sub-groups, the homeless strand reported experiencing the least amount of help from third sector organisations.
• Many participants related how their mental health issues were further exacerbated by, and posed a significant barrier to, their interactions with DWP and assessment staff.
• PIP assessments were notably credited as leaving participants feeling stressed, stigmatised and stereotyped. Assessment staff were perceived as having inadequate training in mental health issues.
• One respondent noted that not having a mobile phone, or the ability to regularly check social security websites and receive updates and appointment details was a significant barrier to accessing social security services for those living on the streets.^[2]
• Some of this sub-group explained that lump sum payments posed difficulties with financial budgeting.

Support networks

Of the three sub-groups, the Homeless group reported experiencing the least amount of help from third sector organisations in terms of; navigating the social security system; understanding eligibility; filling in application forms; and attending assessments and tribunals.

Almost half of homeless participants reported receiving no or little help from third sector organisations when engaging with social security services.

Table 4: Third sector engagement across the three sub-groups

	No. of third sector organisations engaged with	Total no. of participants in sub-group
Veterans	12	7
Homeless	7	7
HIV/Hep C	14	6

Information – [participant] says that she had to be "entirely self-taught" when it comes to finding out about what she was entitled to from the benefits system, adding that there was "no help at all from government or other agencies." She thinks there was no choice for her because "you have to do it yourself as no one else will help you."

Application forms – PIP application form "was painful to fill in" – she tried to get an at home appointment for advice and support but this was refused.

[Homeless, Edinburgh]

Mental Health

All participants in the Homeless sub-group were living with longstanding mental health issues (some significant). More than half of homeless participants related in the interview how their mental health issues were further exacerbated by, and posed a significant barrier to, their interactions with social security services. This included when they had to; fill in forms; fulfil job search criteria for Job Seekers Allowance and attending assessments.

One homeless participant noted that those living on the streets with mental health issues were the most vulnerable, yet least likely, to access social security services. They explained that complexity of the process for seeking social security benefits, combined with their limited access to mobile phones and/or ability to travel, led to their difficulties accessing social security services.

As with participants across all three sub-groups, several homeless participants were left feeling intimidated, humiliated, disbelieved and, for some, dehumanised in a PIP assessment because of the way in which their mental health was discussed.

"The benefits system just now is set up where it's so hard...it's confusing when you go to deal with it and my brain can't cope with that..all the websites...to find out information...you hardly get a brown letter now just explaining about your benefits.....To me it's just a pain in the ****."… "I know boys in the toon that will just no go near a brew (job centre) because they're just like, 'I cannae deal with it, I cannae deal with it' and that's how they're oot...their oot in this weather... it's hard work, especially with people with mental health problems...it's really hard to take in".

[Homeless, Glasgow]

"These people that are assessing you are not even qualified doctors or mental health workers....these are just nurses or assistants....it's wrong… I wasnae treated like a human being....it was like 'you sit there because you've got a mental illness, or you've got AIDS' so you're put in a ****** box and you're no treated like a human being…"

[Homeless, Glasgow]

Accessibility

All participants at the time of interview lived in temporary or private accommodation. However, one homeless participant explained that for those living on the streets, their lack of accommodation or access to communications technologies were substantial barriers to accessing social security services.

"The system...is bonkers...how many homeless people have got a mobile 'phone that they can go and check it? The majority of the ham and eggers, which is a beggar, they get up to go to the library to do their job search, they're going to lose their pitch."

[Homeless, Glasgow]

Payments

Almost half of the Homeless sub-group, all of whom struggled with substance abuse, explained that lump sum benefit payments posed difficulties with financial budgeting. One participant explained that lump sum payments were too difficult to manage given their addictions. Another, who identified as a recovering alcoholic and cannabis user states "money has always burned a hole in my pocket".

Each wanted more regular payments spread across the month.

Veterans

Key themes

• Participants felt there was a 'right' way to fill in application forms that was unknown to them. Some felt the forms were designed to 'trick you' into filling them out incorrectly, to stop people making successful claims. This resulted in greater perceived reliance on, and greater use of, third sector organisations to help fill in forms the 'right' way.
• Health assessments were felt to be too rigid to enable participants to adequately articulate their complex mental and physical health problems.
• Participants were strongly critical of the PIP assessment and the impact it had on their mental health. Participants variously reported feeling "humiliated" and "disbelieved" by assessors, while GP/psychiatric diagnostic evidence of Post-Traumatic Stress Disorder (PTSD) were not taken into account.
• All participants who attended a PIP assessment felt the official report bore little or only partial relation to what had been discussed and observed during the assessment. A few felt powerless to challenge the record (without going through a stressful appeals process).
• For those who successfully went through the PIP appeals process, each were supported by third sector organisations. Several expressed their inability/unwillingness to go through the stress of an appeal/tribunal without this support.

Application forms

All but one veteran participant identified as living with PTSD or a trauma related mental health disorder. Most veteran participants also lived with a long-term physical health condition, including amputations, motor neurone disease (MND), heart problems, diabetes and asthma.

As with the homeless group, some veterans explained how mental health difficulties exacerbated difficulties in filling in forms and navigating the social security system.

The vast majority of veteran participants cited at least one third sector (largely veterans) organisation for helping them fill out forms. Third sector organisations include Bravehound, Veterans Assist, CAB, the Gordon Rural Action Group, Unforgotten Forces, British Legion and Blesma.

The overwhelming perception, shared by participants, was that without third sector help they would have struggled in filling in forms.

Almost half of participants felt there was a 'right way' to fill in forms that would result in a successful application, though what this 'right way' comprised of was unknown to them.

Some felt the forms were designed to 'trick you' into filling them out incorrectly, to stop people making successful claims. This further increased participants perceived reliance on, and greater use of, third sector organisations to help fill in forms the 'right' way.

… filling in the forms was stressful and she [wife of Veteran] felt as if she needed to fill them in in a really precise way… Generally, the respondent feels that it's made difficult on purpose and that some people drop out of the process. Without the help of Blesma, they both felt that they wouldn't have known how to fill in the forms the right way.

[Veteran, Dundee]

Assessments

Veteran participants were strongly critical of the PIP assessment and the impact it had on their mental health. Participants were variously left feeling "humiliated" and "disbelieved" by assessors, while GP/psychiatric diagnostic evidence of PTSD was reportedly not taken into account.

Almost half of veteran participants noted that assessment processes (notably for PIP and DLA) were not adequately designed or conducted to capture, assess or cater for the complexity of their mental and physical health problems.

One veteran participant couldn't understand why they had been given 'zero points' in one of the PIP assessment report sections, it 'didn't seem to reflect his reality.'

Another complained that in the DLA assessment they were only asked 'yes/no' questions; that they were given no chance (or choice as to how) to explain their individual circumstances.

One veteran participant claimed that the assessor asked if he was 'friends with his doctor'. The participant interpreted this as the assessor not trusting what the doctor said. They said the assessor implied they had "cooked up", that is falsified the evidence between them.

The perception that medical evidence, provided by GPs and mental health professionals (not aligned with DWP), was mistrusted, or disregarded, ran throughout veteran participant interviews who had attended the PIP assessment.

Troublingly, several described how the rigidity of the PIP assessment procedure meant that they were forced into undergoing experiences that triggered stress, anxiety, and in one case a panic attack.

For a veteran's wife (previously mentioned) who found the physical assessment upsetting, due to being a survivor of childhood sexual abuse, the only sign of accommodating her anxiety, she recalled, was for the male examiner to offer her 'a minute "to pull herself together".

Another veteran participant reported how medical evidence supplied by his GP (provided by his GP so that he didn't have to go into detail on issues he found upsetting) was not taken into account during the assessment. Rather, the PIP assessor repeatedly questioned - "badgering" as he described it – the legitimacy of his PTSD diagnosis. This, he recalled, caused him to go into some traumatic details, causing worry that flashbacks would be triggered. During a 2.5 hour PIP interview this participant experienced two panic attacks which resulted in him becoming incontinent. The participant stated that little was done to help him recover his dignity.

Only one veteran participant who received Employment and Support Allowance (ESA) didn't have a negative experience of an assessment. This, they explain, is because the assessor had experience of armed forces veterans and he was 'waived through' the assessment.

…[participant] mentioned experience of being assessed for DLA when a doctor/assessor came to his home. [Participant] reported that individual had sat with his back to him and asked him very direct questions to which he was only to answer yes / no to (no room for any explanation of his circumstances or recognition of nuance or complexity in how he might want to answer).

[Veteran, Perth]

PIP assessment report

Most veteran participants applied for PIP, while over half attended an assessment. For each research participant who attended a PIP assessment, they felt the assessment report bore little, or only partial relation to what had been discussed and observed during the assessment.

Veteran participants reported that assessment staff prioritised what they perceived as irrelevant measurements and assessment criteria for mental health status, such as their personal appearance. Moreover, that assessors did not take into account GP or psychiatric diagnostic evidence. Rather, they judged assessment reports to be based on the one-off, subjective observations of an assessor.

Several veteran participants complained about the contents of assessment reports conducted by DWP contracted nurses or medical assessors in their own homes. One stated that their assessment report included two pages of specifics that he wasn't assessed on.

The report from the assessor didn't appear to bear much relation to what had been discussed in the assessment: neither the respondent nor the support worker felt it reflected his situation at all…

[Veteran, Perth]

The nurse assessor came to his house and was charming and friendly but… the report… appeared to doubt the medical evidence that he had submitted … and also included two pages of specifics that he said he wasn't assessed on (…he had two witnesses in the room to vouch for him)…. [He has a] strong suspicion that the report appears to have been fabricated to serve the benefits system's aims vs those of the people that need support.

[Veteran, Erskine]

Stress of PIP Appeals Process

For those who felt the assessment record poorly reflected their circumstances, many felt powerless to challenge the record (without going through a stressful appeals process).

For those who successfully went through the PIP appeals process, each were supported by third sector organisations. Several veterans expressed their inability or their unwillingness to go through the stress of an appeal/tribunal without this support.

The anticipation of the appeals process being stressful was, for all veteran participants who spoke on the subject of appeals, a significant barrier to accessing the benefit.

One veteran participant described rumours and reports from friends and acquaintances about the PIP appeals process. They suggest the benefit agency systematically denies the benefit on first application, while making the appeals process stressful to put off eligible applicants.

During the [PIP] assessment process … No attention appeared to have been given to official documents from GPs. …Rejected for PIP twice…

Encouraged by a support worker to appeal but respondent wasn't sure if she could go through with it. However, she did with support, decision was reversed and the tribunal judge told her that she had a clear case and payments were backdated. It felt as if they had gone through an arduous process for nothing and it should have been obvious from the start that they were eligible.

[Veteran, Erskine]

[Participant] heard very bad reports about PIP assessments from friends and acquaintances. Specifically, that benefits seem to be being denied only to be reinstated on appeal (if the individual has felt able to appeal) but only after having caused significant stress and sometimes, hardship.

[Veteran, Aberdeenshire]

HIV / Hepatitis C

Key themes

• Participants felt that benefit application forms and assessments did not equip them to communicate the variability and considerable fluctuation of health conditions experienced by many of the HIV/Hep C participants.
  
• Many participants found application forms for certain benefits (PIP, DLA, Carer's Allowance (CA)) too difficult to fill in without assistance from third sector organisations.
• Most participants had attended the PIP assessment, while some had also attended the PIP tribunal. All felt the assessment and or tribunal was stressful and humiliating.
• A few participants variously felt the starting assumption in the PIP assessment was that they were treated like 'scammers', 'scroungers' and 'criminals'.
• Some participants reported DWP and assessment staff to be poorly trained and unable to help, or adequately assess their individual circumstances.
• Several participants felt that the renewals process for certain benefits (that is Employment and Support Allowance (ESA)) was becoming more regular, and that this caused greater financial uncertainty and stress.
• Financial stress and hardship was experienced by most participants, as they had experienced gaps and irregular benefit payments. This occurred with UC payments, and also with a mandatory reconsideration when a respondent was moved from DLA to PIP.

Fluctuation of health condition

When claiming for benefits, participants in the HIV/Hep C sub-group were most likely (out of the three sub-groups) to find it difficult to quantify or to adequately express their disability/health status in application forms and assessments.

Notably, a few participants felt that benefit application forms and assessments did not equip them to communicate the fluctuation of health conditions experienced by many of the HIV and Hep C participants.

As one research participant said, benefit application forms were 'blunt instruments' to assess their health issues. They found questions too rigid, too difficult to answer 'appropriately, and in full, given…his health fluctuates quite considerably...'

This resulted in participants fearing that benefits would be taken away because the 'system' did not understand the fluctuating health status of those who live with, and are treated for, HIV/Hep C.

[Participant] has always found access to statutory services hard, particularly when he was very ill – "you have good days and bad days and sometimes if you are having a really bad day you don't feel able to go which is a problem."

[HIV/Hep C, Fife]

…forms nowadays are more standardised and there are fewer questions that he feels he can answer appropriately, and in full, given his health issues. … He… thinks it is difficult to convey that his health fluctuates quite considerably because of the nature of HIV and it can cause him some concern that benefits may be taken away / stopped without the system understanding this.

[HIV/Hep C, Kilmarnock]

Application forms and third sector organisations

As with participants from other sub-groups, HIV/Hep C participants reported difficulties with forms being; too 'difficult'; their being the expectation that there is a 'right way' to fill in forms '(that is mostly unknown to applicants)'; too rigid to accommodate individual circumstances or complex health conditions.

Half of HIV and Hep C participants found benefit application forms too difficult to fill out without help from third sector organisations. This applies to PIP, Disability Allowance (DLA) and Carer's Allowance (CA).

Participants reported that the following third-sector organisations helped them fill out forms; Citizens Advice Bureau, Terrance Higgins Trust, Waverley Care and HIV Scotland.

He was grateful for the advice [of the Citizens Advice Bureau] to make sure that he was filling [application forms] … in the right way: he always has a feeling that he'll be caught out by not answering the questions in the way that's expected (but that is mostly unknown by applicants).

[HIV/Hep C, Kilmarnock]

PIP assessment

Most participants had attended the PIP assessment, while some had also attended the PIP appeals tribunal. All felt the assessment and tribunal were stressful and humiliating.

One research participant described the assessment as stressful and frustrating because the questions required very specific answers 'for example, how far, in meters, can you walk?', and she was worried she might be giving the 'wrong' answers.

Another research participant described assessments as "very stressful" and "humiliating", saying that reports from doctors and HIV consultants should be sufficient to entitle them to benefits. Another research participant agreed, describing the PIP assessment as 'intrusive', as a "dreadful experience". He could not understand why a doctor's report is not enough, concluding there is "no trust in the system".

As a result of PIP assessments, several participants felt that DWP staff or contracted health assessors were poorly trained, and not adequately equipped to assess their conditions.

One research participant recalled that he was denied PIP on the basis of a nurses report, the contents of which he strongly disputed. After an appeal he was awarded PIP, which prompted him to further question the nurse's assessment.

He 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." …

He found the assessments intrusive … he thinks a doctor's report should be enough for the assessment as thinks that there is "no trust in the system."…

…he thinks [DWP] do not treat him like an individual, take too long to deal with issues and thinks that DWP staff are often not suitably qualified.

[HIV/Hep C, Edinburgh]

The respondent particularly wanted to share his experience of the assessment he received from a nurse at home as part of his PIP assessment. Although the individual was perfectly pleasant, the report of the meeting … did not correspond with his 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… He says that he'd never have another assessment without having a witness with him and / or recording the meeting.

[HIV/Hep C, Kilmarnock]

Payments: More regular renewals and gaps in payments

Financial stress and hardship was experienced by most of HIV/Hep C participants, as they had experienced gaps and irregular benefit payments, or the threat of reviews and renewals. This notably occurred with UC payments.

A third of the HIV/Hep C sub-group stated that they were experiencing increased levels of stress and financial uncertainty because of the frequency of re-assessment for benefits.

Benefit reviews and renewals, explained one participant, 'are becoming more regular which means that he feels more uncertain whether his benefits will continue in the future. This leads to a feeling of vulnerability'.

HIV/Hep C participants recalled their experiences of UC; being 'underpaid' some months and 'overpaid' on others, or not receiving payment on a '5-week month'.

For others, having to go through appeals and tribunals led to weeks or months of benefits being lost, only to be re-instated on appeal.

[Participant was] on ESA for over 10 years – medical and appeal every couple of years – "process was stressful and detrimental to my mental state."

Was taken off ESA each time and he had to appeal – that involved a long process and while you are going through process you do not get full ESA.

Process means having to go to CAB several times for paperwork ("they were amazingly helpful"). Got through appeal each time so felt like a waste of time and very stressful.

[HIV/Hep C, Fife]

[Participant] also wanted to note that reviews and renewals are becoming more regular which means that he feels more uncertain whether his benefits will continue in future. This leads to a feeling of vulnerability. He reports how he had to enter a trust deed the last time his benefits were cut as he was left in an immediately precarious financial position. He mentions that he is always dreading a brown envelope arriving in the post to say that he is due for another review.

[HIV/Hep C, Kilmarnock]