Social security experience panels - About Your Benefits and You: qualitative research findings

Chapter 3: What Could Be Improved

Introduction

The survey asked respondents two main questions around improvements:

• “In your experience of the current benefit system, what could be improved? “
• “Tell us about any obstacles or barriers you faced in accessing the current benefit system.”

In focus groups, participants were asked to consider the top 3 things that the Scottish Government should improve about the benefit system. As a result, the discussion largely focused on their difficult experiences of parts of the current system. This chapter will provide an overview of aspects that panel members felt could be improved in the current benefit system.

Key themes

In the survey and focus groups panel members spoke at length about difficult experiences when navigating the current benefit system. Some overarching themes became clear when analysing this data.

Inflexibility of the Current System

Respondents often spoke about experiences that highlighted inflexibility in the current system. This included no choice in how application forms are completed or communication channels. This is particularly difficult for those with mental health conditions or conditions that make certain types of communication impossible. Practical barriers also included expected travel to assessment centres, short notice for attending assessments or tribunals and unwillingness to meet care or support needs for people with disabilities. Some also described how services were unable to tailor their systems to meet different additional support needs.

Lack of Transparency

Respondents also spoke about issues that arose from a lack of transparency in the system. A lack of clear information on what to expect from processes and long wait times without information often led to feelings of powerlessness when navigating a difficult process. In the context of a lack of information, respondents often spoke about finding out about the system from informal networks and the experiences of others. Often this increased anxiety around interacting with the system.

Lack of Trust

A strong theme emerged around distrust in the relationship between the DWP and service users. Participants often spoke about a distrust of the DWP and the benefits system, but also that they felt distrusted by DWP staff. Participants spoke regularly about feeling like they were ‘on trial’ and that the presumption was that they were claiming benefits fraudulently.

Impact on Users

The impact that interacting with the system had on people was clear in the responses to the survey and focus groups. On the whole, the process of applying for benefits was often a source of stress and anxiety and participants feared having to go through the process again.

General statements about the whole system

A number of respondents made broad statements, suggesting that the system as a whole needs to be improved.

The full benefits system needs a major revamp (Survey Respondent).

Application Forms

Length and Repetition

Many respondents highlighted application forms as being an important area for improvement. In particular, the application form for Personal Independence Payment ( PIP) was regularly discussed by respondents as a particularly challenging part of their experience.

A particular issue raised was the length of the form. Some respondents described the application form as being too long or repetitive. This makes the forms difficult for applicants to complete, especially within the required timescales. Respondents highlighted that the length of the form can place a burden on carers or support agencies who provide help to complete the application.

The PIP application is very long and can be confusing. (Survey Respondent)

They are very repetitive so you keep telling them the same things in different ways. (Survey Respondent).

Respondents also spoke about the forms being repetitive, asking for the same information in different ways.

A number or respondents felt that this was deliberately trying to trip applicants up, put people off of applying, or that the system assumes applicants to be fraudulent.

Explaining Conditions

Long phone calls & forms. If you do not fit into the set categories or your disability is hidden, you miss out on help. Perhaps things could be simplified and claimants not automatically assumed to be lying if a disability is not obvious. (Survey Respondent).

Respondents spoke about the difficulties when trying to explain their condition in the PIP form, noting that the questions were not always relevant or appropriate to their specific medical condition. In particular, panel members spoke about difficulties in explaining ‘hidden’ and ‘fluctuating’ conditions or mental health conditions.

Including Supporting Evidence

A number of respondents suggested that medical evidence provided by the applicant’s GP or specialist should be regarded as sufficient for a PIP application and not require duplication in forms or assessments.

Shorter forms. Medical evidence should be enough and not disregarded. Assessment more often based on application alone when there's proof. There shouldn't be any tricks or traps. (Survey Respondent).

Application forms that require a list of medical examinations, Consultant and GP visits. Information that is readily available from the GP. Why is the applicant instructed to find and collate this information. Another repetition whose sole purpose appears to be in place to 'trip up' and cause stress to the applicant and, where necessary, the person acting on behalf of the applicant. (Survey Respondent).

Simplified forms - not as longwinded or duplication of data. More opportunity to let the person write how their disability etc. affects them not how the pre-determined issues are managed. Easier access to forms - download or just pick up in jobcentre (without pre form telephone calls/meetings etc.). (Survey Respondent).

This duplication and breakdown of trust was highlighted as an area which could be improved in the new social security system. Some also highlighted accessing the forms in the first place to be an area for improvement.

Inflexibility of a Paper Form

Respondents spoke about the inflexibility of the current PIP form and that paper forms can be particularly difficult for some claimants. A number of respondents noted that filling in forms by hand can be difficult or exacerbate their condition, and that for them, online forms would be better. Others highlighted that online or phone based application processes do not meet everyone’s needs, and that paper based, or face-to-face services may be more accessible for some people.

As my MS progresses, I find writing and typing increasingly difficult. The thought of having to fill out a PIP form yet again next year fills me with dread. (Survey Respondent).

PIP applications forms - should be able to fill online as it took me days to complete due to having to write everything which caused pain and discomfort. They are also a nightmare to complete as you often have to repeat what you have already stated. Length of time for processing is way too long. (Survey Respondent).

Language on Form

On the majority of claim forms, the wording of the questions are confusing or lean towards being biased against the claimant or the questions give little scope to fully explain how a situation affects you. (Survey Respondent).

The language used in the forms was discussed as a barrier to accessing the system. Some respondents suggested that the language used in forms could be simpler or easier to understand, in “clear English”, as well as clear what information is needed. Others highlighted the tone of language as being important in reducing the stigma and stress associated with applying for benefits.

The forms should be clear in what information they need, and not designed to deliberately mislead an applicant from providing relevant information. The boxes should be a decent size so as not to discourage people providing a decent amount of information that allows the best possible representation of the applicant’s situation and difficulties. (Survey Respondent).

Timescales

Give us longer to fill out forms. 4 weeks (including posting both ways) is far too short. It can take me 3 weeks just to get a GP appointment. (Survey Respondent).

The tight timescales to return forms was raised as a current issue. Respondents described the need for a longer time period for returning application forms. This was important due to delays in postage, when the application requires supporting evidence or when the individual requires support (e.g. from Citizen’s Advice) to complete the form.

Life-long and Degenerative Conditions

Application and/or benefit update forms that are post dated arriving 8-10 days beyond that date. Which means the form completion time is reduced by up to 7 working days. It appears this practice is undertaken to apply unnecessary pressure and/or stress on the applicant. Why? (Survey Respondent).

Some respondents suggested that those with degenerative or life-long conditions should not be required to go through the process of applying for PIP again and again. Instead, some suggested that this might be done through simply updating their information or submitting new medical evidence as their condition changes or progresses.

People who need to reapply for benefits should not have to refill out new forms. This information should already be held on a central database. Claimants should only have to provide updated evidence (savings/medical sick note etc.). (Survey Respondent).

Face to Face Assessments

The functional assessment for Personal Independence Payment was discussed by a large number of respondents as a key area requiring improvement.

Wait Times

A number of respondents highlighted difficulties caused by the time between submitting an application and the date of assessment as being an area of improvement. This wait was described as “far too long”, and “unacceptable”, with one respondent describing a six month wait to get an assessment appointment. Some described also having to wait for the decision to be made after their assessment, further delaying payments.

Repeat Assessments

It was also highlighted that repeat or unnecessary assessments could be distressing, and that assessments should not be required for people with a lifelong or degenerative condition. Some respondents also suggested that medical evidence provided by the applicant’s GP or specialist should be, in many cases, sufficient with no additional assessment required.

Accessibility of Assessments

Respondents described a number of challenges faced in attending face-to-face assessments for Personal Independence Payment. This included the accessibility of buildings, and the location of the assessment both in terms of distance and transport links. Some also described being too unwell to attend an assessment, or finding the experience stressful or upsetting.

Getting to the appointment was very difficult and when I have to go for my next one, I will struggle as I don't have a car and getting to the assessment centre by public transport from where I stay is not easy. (Survey Respondent).

If unable to attend an assessment (due to distance, unavailability, illness, etc.) this should not be classed as a refusal to attend. (Survey Respondent).

The door of the assessment centre is heavy and difficult to open - I had to use my shoulder to push it open going in and then struggled pulling it open to leave. Both caused me pain. There was a room available for assessment on the ground floor opposite waiting room but instead they made me walk all the way back to reception area and get a lift (which had no seat) and then another long walk to the room. I ended up in bed for two days following this assessment due to pain and exhaustion. (Survey Respondent)

Respondents also spoke about people who are at assessments to support them not being allowed to speak or provide information. This was said to be particularly difficult when supporting someone who has a condition like autism, or one that affects memory or speech, as they may not be able to give an accurate assessment of their own needs and/or could find it distressing.

[My daughter] was very distressed and upset when she was told that she could not have her mum with her as the ATOS Assessor said that she had to be assessed on her own. (Focus Group Participant).

Knowledgeable Assessors

Respondents emphasised the importance of having assessors who have relevant knowledge and training to enable them to make an informed assessment of their capabilities and needs.

Assessments should be carried out by an assessor would is fully conversant with the conditions of the claimant. My assessment was carried out by someone who didn't understand my condition, her physical testing was totally inadequate nor did it take into account the fluctuations in my health (Survey Respondent).

3 weeks of training does not make a competent assessor. (Survey Respondent).

Some respondents described feeling that the assessment was not appropriate to their health condition. This included the type of questions asked, as well as respondents saying they were asked to do activities that caused pain or exacerbated their condition.

The medical assessment in my eyes isnae as it implies medical and doesnae fulfil all medical needs. The way the data is collected is centred and nae personal, many things that are important are missed out like the amount of pain endured. (Survey Respondent).

Particular areas for improvement included assessments for people with fluctuating conditions and for people with multiple health conditions. A number of respondents also felt that their assessment did not take into account their mental health.

The assessment was extremely uncomfortable and was made to do physical things that caused pain. I refused to do one as had been specifically told by my physio not to do that movement as it could cause major problems. (Survey Respondent).

Behaviour of Assessment Staff

Respondents commented that the behaviour of staff involved in the assessment was an area that could be improved. Respondents spoke of a distrust of the assessors, commenting that it felt like “I was on trial” or “they were trying to catch me out”. Others described staff as “rude” and felt that staff behaviour negatively impacted on them or the outcome of the assessment.

The assessor was rude and imperious, and actually had the gall to shush me when I was trying to offer my mum some words of support. She then went on to question the medications that'd been prescribed by doctors *specialising* in pain medicine. (Survey Respondent).

During my first assessment I asked my assessor what she had written and she refused to tell me. This made me very distressed and I became very ill worrying about this for months afterwards as I could not stop worrying about what she had written about me and why she wouldn't let me see it. At my second assessment I had an advocacy worker present and she made sure that the assessor treated me properly and spoke to me slowly and clearly. She also explained to the assessor how important it was that I knew what was being written about me and had the assessor tell me everything that she was writing. It was a completely different experience. (Survey Respondent).

The Need for Assessments

Some applicants emphasised that disability benefit assessments should only be carried out when necessary, and that evidence provided by medical professionals should be enough. Respondents were concerned that assessments do not always capture pertinant information about the applicant’s capabilities or needs.

Everything should come from one application and one assessment (if necessary). Doctors statements should be enough, patients shouldn't need to justify their condition(s). (Survey Respondent).

Assessment - this is not fit for purpose (a snapshot of a person's care/mobility needs does not reflect how a person is over a year; the assessor's observations are personal and not reflective of the person - the person may look ok, but does not reflect the amount of help required to look 'presentable'. As the assessor has never met the person before, how can they comment on their physical appearance and their actions). (Survey Respondent).

Distrust of the Assessment Process

Some respondents felt that their experience of face-to-face disability benefit assessment was unfair, inaccurate, or biased. This included a number who felt that their assessment report included false information. Similarly, some respondents questioned the motivations of private companies who are involved in the assessment process, suggesting that they were motivated by targets or cost saving, rather than the needs of the individual. Some felt that assessments should be routinely recorded to stop inaccurate reports being submitted.

Get ATOS out of the assessments. They're horrible and just don't make fair assessments. (Survey Respondent).

The assessments should not be incentivised, or completed by a third party company. It should be a professional in that particular field who conducts the assessments. (Survey Respondent).

By the end of it all, my mum was in tears of stress and agony. And just to put the cherry on top, we noticed as we were going out towards the taxi that one of the staff was watching us from the window. The whole thing felt like we were under the eyes of the damn Inquisition. (Survey Respondent).

A number of respondents also described being observed by staff outwith what they considered to be the formal assessment and that this made them feel like they were not trusted or that the assessor was trying to catch them out.

Appeal process

Many respondents highlighted the appeals process as a key area for improvement.

Stress Associated with Appeals

A number of respondents commented that they were unable to appeal due to the stress associated with this process, and therefore accepted what they felt was an unfair or inaccurate decision.

I know their decision is wrong, but do not have the time nor capacity to fight this further - I need to spend all my time / energy caring for her. The appeal stage beyond mandatory reconsideration is too complex and stressful and I feared losing what I already had. (Survey Respondent).

[The] appeal system is awful and when you have mental health issues it is so hard to explain. When you lose appeal you feel as if you are scum and a liar. (Survey Respondent)

The DWP and ATOS and also the Courts and Tribunal service, all make assumptions and don’t fully understand the way in which medical conditions affect people in "reality" it’s a box ticking exercise, black or white, yes or no, medical conditions, disabilities and long term illness cannot be pigeon boxed, they are unique to that individual and people deserve to be assessed with this in mind. (Survey Respondent)

Some respondents felt that appeals system is unsympathetic and does not understand the way that health conditions can affect different people in different ways. A number of respondents found the process very stressful, with some suggesting that it can make people “suicidal”.

My wife was not allowed to help me or speak in my tribunal because I had a representative there [advice service]. Unfortunately my representative didn't help me in any way nor stand up for me in the tribunal and, due to my condition, I became unable to answer questions and it became a very traumatic experience. I remain very upset about this two years later. I felt that the tribunal was boringly repetitive for my representative and the panel members and that the panellists were finding it difficult to both see me, and treat me, as another human being rather than just another pathetic, possibly disabled, person to judge and get through. (Survey Respondent).

Discouragement from Appealling

The two women I spoke to (one was a senior manager) both actively tried to deter me from challenging the award. I was on the phone for nearly 40 minutes whilst they argued with me. In the end the manager conceded that a reconsideration was permissible. (Survey Respondent).

Others felt that either the staff or the system deliberately discourage people from appealing a decision.

In this respect if there is to be an appeal system, it is necessary, in my opinion, to allow a greater length of time for the disabled person to organise their appeal and the support needed to attend hearings. (Survey Respondent).

The issue of applicants feeling unable or discouraged from appealing decisions may be exacerbated by the short time period which applicants have to lodge an appeal against their benefit decision.

Percieved Consequences of Appealling

Some respondents raised the concern that appealing a decision can put their benefit at risk of being cut or stopped all together. This was particularly a concern relating to taking a case to tribunal, where respondents reported that they had been warned against taking this step by staff, judges, or outside agencies on the basis that their exisiting benefits could be stopped.

My father now needs more care than the standard AA but we have been told there is a risk if we appeal for the higher rate we could lose the standard rate. (Survey Respondent).

The judge at the tribunal 'warned' me that they had some info that could result in me losing the entire award including the 'care' element but would only tell me what that was if I went ahead of the Tribunal and risked everything if I couldn't, without any prior warning, explain or show evidence to the contrary. (Survey Respondent).

Mandatory Reconsideration

A mandatory reconsideration where there is little or no prospect of success but rather a tick box exercise which can often delay an appeal. (Survey Respondent).

A number of respondents expressed a degree of distrust in the rigour and fairness of the mandatory reconsideration process. ‘Mandatory reconsideration’ is the first step in challenging a decision, acting as an internal review of the decision. Some respondents and focus group participants felt that staff were unlikely to disagree with their colleague’s assessments, and saw this as an unnecessary step that adds to the length and stress of the appeal process overall.

I think the mandatory reconsideration period should be done away with; it just adds time and stress on to people and leaves them without money for longer. (Survey Respondent).

Transparency of Appeals Process

I have asked for a statement of facts from the tribunal as to why I am not getting the mobility. I have been waiting for almost 2 months for the response. (Survey Respondent).

A number of respondents described a lack of transparency in the appeals process. This included not having access to information and evidence relating to their case, or feeling that the system is biased or deliberately difficult to navigate.

In my opinion and experience the current system sets claimants up to fail at every stage, having had to take my husband's previous claim to tribunal, I am of the opinion that under the current system, unless one is tenacious enough to keep fighting, and it is a fight, then you will be denied PIP. (Survey Respondent).

Wait Times for Appeals

Then there is an extremely long wait for a decision, and when you read it you feel as if they haven't listened to a word you said! Then another wait for an appeal process. Very disheartening, and depressing. Making you feel worthless and that you are actually begging for something you're not entitled to. (Survey Respondent).

Respondents described long waiting times for going to appeal, which can be particularly problematic when benefit payments are stopped in the interim period.

I just had to go to Tribunal while trying to claim PIP because I missed an appointment due to my disability. This was stressful and entirely unnecessary. They wouldn't accept I had good reason to miss the appointment even though my support worker called several times to explain. Meanwhile they have stopped my Disability Living Allowance. (Survey Respondent).

Communications and Language

Survey respondents and focus group participants highlighted areas for improvement around the communications about benefits, including inflexibility within the system.

Letters

Postal correspondence with the DWP was frequently discussed as an area for improvement. This related to correspondence sent to the DWP not being acknowledged or responded to. Respondents also raised issues with letters received from DWP. The main issues with letters from the DWP tended to be around clarity of wording, accuracy and tone.

The wording of letters could be better. I get letters starting with "due to a change to your circumstances" when to my knowledge there have been none. [I have got] letters months after deductions have been […] to my housing costs […] that put me in arrears through no fault of my own. (Survey respondent).

The letters are threatening, especially if people have mental health issues. The language of the letters requires to be changed. There is inconsistency of communication as sometimes the Contact Centre staff are OK and sometimes they are very abrupt and rude. (Focus Group Participant).

Phoning DWP

Respondents spoke about the length of time required to make phonecalls to the DWP, both in terms of long wait times and being passed from person to person. Some respondents spoke specifically about challenges and frustrations with the initial PIP telephone call. Also mentioned was the behaviour of staff working in call centres.

We need to record the calls as their behaviour is bullying. If you make a complaint, you feel that you will be targeted and you feel worthless. (Focus Group Respondent).

Inflexibility in how customers were communicated with was raised by some survey respondents and focus group participants. For example, a few respondents spoke about the phone being a particular barrier because of their condition.

The help lines are a joke, hanging on the phone for up to an hour to speak to someone. I gave up trying to apply for myself. (Survey Respondent).

In bed with depression after months awaiting claim outcome, completely draining. Then received phone call from DWP to say I had been found fit for work. This was not the right method for me, at least a letter allows people with mental health issues the choice to delay dealing with it if needed. (Survey Respondent).

The horrific Vivaldi music is painful to listen to when trying to call and speak to someone. (Survey Respondent).

A couple of respondents mentioned specifically the DWP ‘on hold’ information on the call line. This was felt to be threatening or off-putting. Others mentioned the hold music as being particularly off-putting.

Costs Associated with Applying for Benefits

Respondents spoke about multiple costs associated with applying for benefits. Several respondents noted this as a key barrier to accessing the system, particilarly when on low incomes and/or in poor health. This included call costs when phoning the DWP, especially when subjected to long wait times or when calling from a mobile.

Cost of mobile calls to DWP one of ours cost £18.00. (Survey Respondent).

The cost of phoning the DWP if you only have a mobile is outrageous. I moved house, so sent a letter informing them of the change of address rather than pay for a ridiculously expensive phone call. My next set of payments weren't made. I then rang up to be told I had been sanctioned for sending in a letter, rather than phoning, to report a change of circumstances. "you should have read the rules", he said. (Survey Respondent).

Some PIP applicants also spoke about costs associated to gather supporting evidence for application or appeal, for example letters from doctors or legal advice.

A few respondents also spoke about the costs associated with attending face-to-face assessments, for example, having to travel at peak times or by taxi to make appointments.

Some respondents also spoke about costs that they incurred that were associated with their distrust of the DWP. For example, photocopying large amounts of paperwork to keep a copy and sending correspondence by recorded delivery.

An astounding amount of mail sent to the DWP seems to go missing. I send every itching by recorded delivery and copy everything beforehand. (Survey Respondent).

Some respondents also felt the need to subscribe to online information and advice sources to complete claim forms. A recurring example was the ‘Benefits and Work’ website which costs £19.95 per year.

Information, Advice and Support

Respondents spoke about a lack of clear and accessible information and advice on what they are entitled to, particularly related benefits that people may be entitled to. Likewise, in focus groups, participants often spoke about the difficulty in finding out about benefits in the first place. Routes into the system tended to vary, however, people were often told about benefits through their informal networks.

There is very little information outside the job centre and the citizen's advice centre. The information should be much more easily accessed. (Survey Respondent).

Assistance to complete and advice on what to claim for would be helpful. For example, we were unaware my father was entitled to attendance allowance until a nurse informed him. He was lucky to have assistance to fill in the form through help at the Maggie's Centre. I know he would not have done this without help. I think that if someone makes a claim they should be informed of all benefits they may be entitled to claim for. (Survey Respondent).

Finding out what I was entitled to. This only became clear after visiting my council run advice team. I am very computer literate, but even I have found the online info hard to dig out! (Survey Respondent).

P.I.P form is nearly 40 pages and very complicated. I was able to get help from somebody from Citizens Advice. Without their help I wouldn't have been able to apply successfully. (Survey Respondent).

Respondents highlighted the importance of independent advice and support, particularly when navigating a complex system. A number of respondents raised concern about the capacity of support agencies to meet the demand, especially within tight timescales.

The process of applying or reapplying for benefits has been so complicated that I - and countless others - have had to accept help from third parties (such as Citizens Advice) just to complete the paperwork. (Survey Respondent).

Getting an appointment with a support worker and getting the firm back in time can be difficult. (Survey Respondent).

Impact on service users

A common theme that emerged throughout the survey responses, and in focus groups, was the impact that the system had on users. In particular, respondents often spoke about feelings of stress and anxiety. This was often caused by:

• short timescales to gather information and submit claims.
• difficult parts of the process, as discussed above.
• long and uncertain waiting times for responses.
• difficult encounters with staff, particularly in relation to assessments.
• stigma associated with claiming benefits.

I spend from the time I write any form to the time I get the response on my knees mentally with fear, anxiety and stress. (Survey Respondent).

If a brown envelope arrives I have cried before being able to open it as I know the clock starts ticking. It has so far only been standard letters but I've been through that anxiety each time. (Survey Respondent).

Respondents also spoke about feelings of fear. Some spoke generally about a fear of ‘losing everything’ if their claim was not accepted. Others spoke more specifically about specific triggers, for example, about fear and anxiety experienced when a ‘brown envelope’ is received from DWP or fear of going through the process again. Fear was sometimes given as a reason for not updating information or appealing decision.

Some respondents spoke about the impact that going through the system had on their conditions. This included aspects of the process itself (e.g. written forms or face-to-face assessments) causing pain or interacting with the system exacerbating mental illness.

I was assessed again … where I was made to walk back and forth from various rooms while using my walking stick which left me in great pain… (Survey Respondent).

Nothing at all worked well, the whole system caused more stress and caused my illness to worsen, going through the process was agony especially as I was trying to come to terms with this devastating illness. (Survey Respondent).

Suffering with depression and anxiety and being made to jump through hoops made me 100 times worse. After losing my car I was secluded from everyday life and people which made it difficult to be around other people again after I won my appeal and motability car again. (Survey Respondent).