Additional Support Needs in the PIP Claim Journey

Q: Authors

Dan Clay Managing Partner, Basis Social Erica Harrison Associate Director, Basis Social Dan Lemmon Senior Research Executive, Basis Social

Question 1

Executive summary

Accepted Answer

The Health and Disability White Paper and the Health Transformation Programme (HTP) signal the commitment on the part of the Department for Work and Pensions (DWP) to improving the customer journey for Personal Independence Payment (PIP) applicants. One core aspect of this is improving the support provided to customers.

Between February and April 2024, Basis Social undertook 52 in-depth interviews with PIP applicants with the aim to understand who needs additional support throughout the claim journey, how to identify those applicants, and what support they need and when. All interviewees were in the process of progressing a PIP claim, covering the full range of stages from initial application to appeal (including award reviews).^{[footnote 1]} In total, 30 participants had an Additional Support (AS) marker^{[footnote 2]} within the sample. An additional 17 follow-up interviews were conducted with applicants where they had moved on to a subsequent stage in the PIP process during March and April 2024.

Alongside these interviews with applicants, 8 interviews were undertaken with advisers working within voluntary sector organisations which provide support to people with their benefits and welfare applications. These included disability-specific organisations and those involved in more general support services (e.g. legal advice centres). Interviews with advisers helped to identify the additional support needs of a larger cohort of PIP applicants, including those not represented in the achieved sample.

A summary of the key findings is detailed below, with reference to the sections of the report where findings are discussed in more detail.

Common challenges people face in their PIP claim journey (Section 2)

Section 2 details those challenges which affected applicants during their PIP claim journey, which were not directly related to specific stages of the journey itself.

Applicants started the PIP claim process with relatively high baseline levels of anxiety and stress resulting from a combination of challenging financial circumstances (which had typically led to their applying for PIP) as well as the impact of a long-term health condition and/or disability.
Higher levels of knowledge and awareness of PIP were associated with lower levels of anxiety, but also greater scepticism in how decisions were made and lower trust in DWP (and PIP assessors).
Applicants who lived with a mental health condition and/or developmental conditions often experienced greater challenges progressing through the PIP application process due to cognitive overload and anxiety created by the process itself.
Often people were not accessing (or aware of) any form of additional support for managing challenges in day-to-day living (including the impact of any health condition or disability) beyond that provided by friends and family, or occasionally financial support in the form of the Universal Credit benefit.
Applicants did not always self-identify as ‘disabled’, and many were uncomfortable applying for benefits given the stigma they perceived to be attached to the process. The process of applying for PIP and feeling ‘judged’ felt disempowering and demotivating for some applicants which led to anxiety and could reduce their likelihood to access support or talk to others.
Many participants recognised there could be accessibility and efficiency benefits to completing a PIP application digitally. However, there were also actual and anticipated barriers relating to lack of access to the internet and low levels of digital literacy and confidence.
In analysing the data gathered through interviews with PIP applicants, four ‘types’ of support need were identified as being important in addressing challenges faced during the PIP application process:

Informational support needs to help set and manage expectations. DWP might provide this support via the GOV.UK webpages, the PIP Helpline or DWP letters.
Practical support needs to physically manage the process, such as helping to interpret or write responses on the PIP2 form. DWP might provide this support through the PIP Helpline or Jobcentre Plus.
Emotional support needs to emotionally manage the process. Although this may not be directly in DWP’s scope, DWP might signpost to other organisations who provide this support.
Wider support needs to help manage their wider circumstances (e.g. housing, finances, relationships). DWP might provide this support via the Jobcentre Plus, other benefits or by signposting to other organisations who provide this support.

These are illustrated in Figure 1 below.

Figure 1: An infographic depicting the 4 types of support need identified in this research

Figure 1 depicts the following:

Informational: Which relate to factual questions around the PIP application and assessment process, in turn helping to set and manage the expectations of applicants.

Practical: Which relate to practical support in completing a form or participating in an assessment.

Emotional: Often relating to anxiety or stresses which can be exacerbated through the (actual or expected) process of applying for PIP.

Wider: Which will differ by individual but likely to include needs relating to health, household finances, housing, employment and training, and relationships.

Support needs across the PIP claim journey (Section 3)

Section 3 details applicants’ challenges and support needs that related to specific stages of the PIP application and assessment process.

Some applicants reported feeling anxious when registering a claim (PIP1) due to a lack of understanding of their eligibility, or of the questions likely to be asked of them. More information about the questions they will be asked, as well as options for commencing applications via paper or digital forms may help to reduce feelings of anxiety for some applicants.
Providing health information (in the PIP2 form) was typically reported as the most challenging stage for applicants due to the nature of the process (a lengthy written form), the questions being asked, and the cognitive burden this placed on people during a period where there were often other competing stresses. Applicants often benefited from practical support from a professional supporter or a friend/family member in helping them to answer the questions on the PIP2 form (either as a scribe or in rephrasing questions). In many cases, however, participants reported not accessing support, or not being aware of what support may be available at this stage.
The assessment was also a point of high stress for many applicants who had not previously been through the process and did not know what to expect – this was particularly an issue for applicants with a mental health condition. Most applicants did not report requiring support during the assessment itself, although some did benefit from more emotional or “moral” support from friends or professionals. Applicants appreciated information that set expectations around timeframes and what questions would be asked in advance of appointments. In some cases, DWP was reported as having provided this support via a short telephone call in advance of the assessment.
For single component award or nil award decisions, there was a need for additional information to understand what had led to this decision, enabling applicants to decide whether they would challenge it or not. Information on what options were available for them to challenge this decision through the mandatory reconsideration (MR) and appeals processes were important to communicate, as was signposting and encouraging people to access support to help them through these processes. As with other stages of the process, there was little understanding of what to expect from an MR or an appeal.
For PIP claimants that were going through an award review, there was often surprise, confusion, and distress at having to go through the process again, particularly for long-standing conditions.
There were no identified differences in the nature of the presenting support needs of applicants with and without an AS Marker.

Identifying and addressing additional support needs (Section 4)

Section 4 details participants’ views on how DWP might identify applicants that require additional support (building on what is done already), and what support might be put in place to address identified needs.

Improving access to DWP-signposted information or sources of guidance on the PIP process would help applicants to address queries that relate to different stages of the process, enabling them to better manage their expectations. While this support is often available (including from DWP), applicants are not always aware of this, or accessing this form of support.
For those who were less confident in their own capabilities, there was a need to ensure access to formal or informal practical support to help people manage the process of completing the PIP2 form (i.e. reading and writing). Similar support may be beneficial to a subset of applicants during the assessment process where mental health or developmental conditions could lead to challenges in understanding Health Care Professional (HCP) assessors.
The need for emotional support was most obvious during the assessment process; some claimants needed help to manage their anxiety. Access to such support was highly variable, and often dependent on pre-existing relationships (i.e. with friends, family members).
Applicants could often benefit from access to support to address wider needs that could relate to finances, housing, relationships, employment and managing their health conditions. While most applicants are not seeking this support through DWP, many have not accessed support beyond their GP or hospital and do not know where to start.
Participants have mixed views as to what support (beyond providing information) DWP should provide. Some applicants were highly sceptical and distrustful of DWP providing support. However, many others were very positive and would expect DWP to ensure access to support as a public service.
While DWP call handlers will ask applicants about additional support needs at the point of registering a claim (PIP1) this wasn’t something that participants in this research recalled. Applicants highlighted that support or access needs at the point of registering a claim should be asked of everyone. There may be some characteristics that make it more likely someone may have additional support needs (e.g. mental health conditions, developmental conditions, lack of social support structures, access issues, first-time PIP applicants), but it is important that these are not used to make assumptions around need-states.
An AS Marker did not appear to result in applicants receiving any differential form of support from DWP or differences to their reported claim journey.

The report also includes a discussion which presents the authors’ analysis of the evidence collected and emerging implications for DWP. These views are those of the authors’ and not of the participants in this research.

Question 2

Acknowledgments

Accepted Answer

This research was commissioned by DWP in December 2023.

The authors would like to express their gratitude to the Social Researchers in the DWP Health Transformation Programme Research team for their management of the project and their valuable input and support. In particular, we extend our thanks to Katie Evans and Rebecca Gillan for their project leadership and contributions throughout the process.

Participants provided a wide range of valuable insights through their open participation in interviews. We thank them for their time and willingness to do so.

Question 3

Authors

Accepted Answer

Dan Clay Managing Partner, Basis Social

Erica Harrison Associate Director, Basis Social

Dan Lemmon Senior Research Executive, Basis Social

Question 4

Abbreviations

Accepted Answer

Term	Definition
AP	Assessment Provider
AS Marker	Additional Support Marker. A flag applied on DWP records where an applicant (who does not have a Personal Acting Body) has been identified as needing additional support from DWP due to a severe mental health or behavioural condition, learning difficulty, developmental disorder or memory problems.
DWP	Department for Work and Pensions.
HCP	Healthcare Professional. An independent healthcare professional who undertakes a medical assessment on behalf of DWP.
HTP	Health Transformation Programme. The HTP is transforming the Personal Independence Payment service, introducing a simpler application process, including an option to apply online, improved evidence gather and a more tailored journey for customers.
MR	A mandatory reconsideration (MR) is when an applicant disagrees with the decision made regarding their claim and exercises their right to have DWP reconsider the evidence associated with their claim. Applicants can also submit additional evidence as part of this.
PAB	Personal Acting Body. A formally appointed supporter including an Appointee, a Deputy or someone with Power of Attorney.
PIP	Personal Independence Payment. PIP is a benefit that can help with extra living costs if you have a long-term physical or mental health condition or disability and difficulty doing certain everyday tasks or getting around because of your condition.

Question 5

PIP claim ‘journey’ stages

Accepted Answer

In progressing a PIP application there are various stages which an applicant may go through. These are illustrated in Figure 2, summarised below.

Figure 2: Summary of customer journey^{[footnote 3]}

Registering a claim (PIP1) - PIP1 refers to the initial form filled out by applicants to initiate a PIP claim. It asks for basic personal information and the applicant’s bank details. It is primarily filled out over the phone, but applicants can request to be sent a PIP1 paper form. A digital version is currently being trialled in certain regions.

Health information gathering (PIP2) - The ‘PIP2 form’ is also known as the ‘How your disability affects you’ form. Applicants are asked to provide detail on how their health conditions and/or disabilities affect their day-to-day life. It is primarily completed on paper, but applicants in select areas now have the option to complete the form online (DWP Digital Application).

Assessment - At this stage, applicants are assessed by a healthcare professional (HCP) either in person, by telephone, or video call. The assessment broadly follows the structure of the PIP2 form and is focused on how the applicant’s health condition/disability affects their ability to perform everyday tasks.

Decision - This stage refers to the period immediately after applicants have received a letter outlining the decision on their PIP claim (whether this be a standard award, single component award, or a nil award) and the associated next steps.

Mandatory reconsideration - A mandatory reconsideration (MR) is when an applicant disagrees with the decision made regarding their claim and exercises their right to have DWP reconsider the evidence associated with their claim. Applicants can also submit additional evidence as part of this.

Appeal - If the applicant is not content with the outcome of their mandatory reconsideration, they can appeal the decision to an independent panel at a tribunal who will review evidence from both sides. Tribunals are a part of the court system. They are not part of the DWP.

Award review (AR1) - The AR1 ‘Making sure your award is right’ review form is for applicants who are already in receipt of PIP. The form is issued by DWP to determine whether someone’s functionality has changed since their last PIP award. DWP can review someone’s PIP award at any point in time, even for awards that have been made for a fixed period. Claimants can also request an award review themselves, for example if their condition has worsened and they think they might be eligible for a higher rate.

Question 6

1.  Introduction

Accepted Answer

1.1 Background

DWP’s Health Transformation Programme (HTP) is modernising health and disability benefit services in the UK. It is doing this through implementing improvements to the Health Assessment Service and the Personal Independence Payment (PIP) end-to-end journey.

These changes aim to:

create a more efficient service and an improved applicant experience
create a more effective and efficient service for the taxpayer, reducing reliance on paper and clerical activity, and integrating service delivery and IT systems
reduce the journey times for assessments
develop greater capability to innovate and deliver change
improve trust in services and decisions

DWP has commissioned a range of qualitative research to address key gaps in their evidence base and seek views from a variety of stakeholders, including HCPs and people that have disabilities and health conditions.

1.2 Research aims

The overall aim of the research was to promote understanding of what additional support needs applicants have in their PIP claim journey. Additional Support Needs refers to the additional support that some claimants may need to manage the claims process, their expectations, and their wider circumstances. By ‘additional’ we mean additional to their PIP claim itself (which is a form of financial support provided by DWP). DWP currently provides additional support to customers through a variety of mechanisms, including:

the PIP helpline
online PIP videos
information sheets
DWP Visiting service
offering reasonable adjustments for communications
different channels for assessments (face to face, video or online)
Jobcentre Plus
the DWP Advanced Customer Support Senior Leads for DWP’s most vulnerable customers
the DWP Disability Services Advocacy team^{[footnote 4]}
by signposting to other organisations

DWP recognises that in some cases, applicants may not be able to engage effectively with the claims process. For example, they may not understand the consequences of not returning forms; responding to a reassessment invite or reminder; or attending an assessment. That is why applicants identified as not being able to engage effectively with the PIP claim process due to reduced mental capacity or insight but with no Personal Acting Body can be provided with an AS marker if they need it. The support offered to those with AS markers includes help filling in the form or the questionnaire if needed and additional protections for failing to return the questionnaire, or for failing to attend a face-to-face assessment. However, not all customers requiring additional support meet the criteria for the AS marker, therefore, the need for additional support should not be confused with the AS marker. The need for additional support is also not to be conflated with the Advanced Customer Support Service which provides additional support for customers at serious risk of harm, neglect or abuse.

The Health and Disability White Paper and the HTP signal the Department’s commitment to improving the customer journey for PIP claimants. One core aspect of this is improving the support provided to our customers. The research therefore set out to identify:

What are the challenges people face in their PIP claim journey?
What are their additional support needs in their PIP claim journey, and when in the claim journey do they need this additional support?
What are the additional support needs that arise with a digital application system?
How are applicants currently managing (to address needs) when completing their application and assessment?
What are the barriers and facilitators that might exist to them accessing support?
What role might DWP play in addressing support needs?
Who needs additional support in navigating their PIP claim journey, and how could DWP identify those who need additional support?

1.3 Methodology

A staged, mixed-method approach was adopted to address the research objectives.

To help inform the research design (sampling frame and topic guide development), interviews lasting up to 60 minutes were undertaken with representatives of eight voluntary sector organisations that bring an understanding of applicant support needs. These included a mixture of general advice services and organisations supporting individuals with specific needs (e.g. relating to mental health, sensory needs, or mobility-related needs). A standardised topic guide was used in conducting these interviews, informed by a review of recent, relevant literature on PIP applicant support needs. This is included in Appendix A of this report.

Between 7 February and 26 April 2024, in-depth interviews were undertaken by researchers from Basis Social with PIP applicants who were in the process of progressing a PIP claim. A total of 52 interviews were conducted by telephone or over MS Teams, depending on the preference of the participant. Each lasted approximately 30 minutes. Where applicants wished to have a friend or family member join them for the interview, this was permitted. Hard quotas were set for the recruitment of applicants based upon their current stage of the application process to ensure we achieved a broad mix, overweighting in those stages where support needs were likely to be most acute (i.e. PIP2 form completion and assessment).^{[footnote 5]} We sampled applicants who did not have an Additional Support (AS) marker^{[footnote 6]} in addition to those with an AS marker; in total, 30 participants had an AS marker. Demographics were monitored to ensure diversity of experiences within the sample. The sample itself was drawn by DWP and was provided to Basis Social to recruit from. All participants received a £40 shopping voucher in recognition of their time.

Table 1 provides a breakdown of the demographic characteristics of the achieved sample. Note that Basis Social subscribe to a model of thinking about disability developed by Open Inclusion^{[footnote 7]}, which holds that we all move, sense, think, feel, and communicate differently, and that ‘disability’ is an outcome of failures in the system to support these differences. We adopt a categorisation which relates to the social model of disability. Details of the range of primary health conditions and medical types of disability reported by participants are included in Appendix B.

Table 1: Sample breakdown by demographic characteristics

	Characteristics	Target	Achieved
Stage of Application	Award review (AR1 review form)	5	5
Stage of Application	Registering a claim (PIP1)	5	6
Stage of Application	Health information gathering (PIP2)	10	15
Stage of Application	Assessment	15	11
Stage of Application	Decision (including nil award or single component award)	5	6
Stage of Application	Mandatory reconsideration	5	4
Stage of Application	Appeal	5	5
Diversity in ability^{[footnote 8]}	Move differently	N/A	34
Diversity in ability	Sense differently	N/A	4
Diversity in ability	Think/feel differently	N/A	21
Age	Under 25	N/A	3
Age	25-49	N/A	21
Age	50-65	N/A	26
Age	Over 65	N/A	2
Gender	Male	N/A	28
Gender	Female	N/A	24
Ethnicity	White	N/A	47
Ethnicity	All other ethnic groups combined	N/A	5
AS marker	Yes	N/A	30
AS marker	No	N/A	22

A standardised discussion guide was developed for use with applicants in conjunction with DWP. This is included in Appendix C of this report. The themes covered included:

information needed, and sources of information used at different stages of the application process
support accessed (and needed) at different stages of the application process
experiences of completing the PIP application, and PIP assessment
reflections on ideal support (sources and format)
identifying individuals that need additional support

To understand whether applicant support needs change at all during the process of making a claim, we invited all applicants (except those at the end of their claim journey^{[footnote 9]}) to participate in a follow-up interview. The length of time in between different stages of the PIP application and appeals process can vary significantly. Within the fieldwork timeframe, 20 of 52 participants had moved on to a different stage in the process (e.g. from submitting their PIP2 application form to having undertaken an assessment) and had agreed to be re-contacted. Of these, 17 participated in a follow-up interview. These interviews took place between 20 March and 25 April 2024. A standardised topic guide was used which explored the extent to which support needs had changed between stages, and how these support needs could best be met.

All interviews were recorded, and notes were taken from moderator review of the audio recording. The research team used framework analysis^{[footnote 10]} as a method for organising and managing data through a process of summation and synthesis, resulting in a series of themed matrices tied to the topic guide (and aims for the research).

Through detailed analysis and interpretation of qualitative data^{[footnote 11]}, patterns of responses and relationships were identified, leading to well-supported conclusions. This was supplemented by regular brainstorms between members of the field team to identify and sense-check themes and conclusions.

Verbatim quotes have been used throughout this report to help illustrate points made in the main narrative. These have been labelled according to a broad category of disability and/or health condition and by the participant gender and age. Some quotations have been modified slightly for readability.

1.4 A note on language

It is important to consider appropriate language, when talking to or about people with different lived experiences of disability. This can be difficult as there is not an agreed ‘correct way’ to talk about disability and long-term functional differences.

We know that people make different language choices based on their region or community, and even people in the same area with similar needs do not always agree about how to use language.

In the UK, the disability community tends to prefer identity-first language, since disability is an important part of many people’s identity; disabled people in the UK would be more likely to write or say, “I’m a disabled customer who regularly uses your service” or “This would support disabled people’s needs”. We, at Basis Social, have adopted this approach in our reporting, in line with previous research and feedback from inclusion specialists Open Inclusion. We also try to reflect specific language preferences of participants themselves in discussing their personal disabilities and/or health conditions.

Question 7

2.  Common challenges people face in their PIP claim journey

Accepted Answer

2.1 Introduction

This section details the key challenges, and support needs, faced by applicants across their PIP claim journey (i.e. those which are not specific to a particular stage of the journey). The challenges have been divided into 2 groups: those which relate to the PIP claim journey itself, and those that relate to applicants’ wider circumstances.

Key insights within this section include:

Participants without past experience of the PIP application process were anxious about the process due to a lack of knowledge about what to expect.
Participants with past experience of the process were less anxious but were highly sceptical about their application and required reassurance from the DWP and those supporting them around a fair process due to lower levels of trust in DWP.
The experience of mental health conditions and/or developmental conditions often led to greater challenges for applicants in progressing through the process. The process itself could exacerbate health conditions due to anxiety and stress – information on the PIP process, and emotional support could help mitigate this.
Voluntary sector support organisations highlighted how applicants typically require reassurance and support in progressing their PIP applications due to a lack of confidence. Language and access barriers (e.g. relating to sensory conditions) could also create challenges in navigating the process.
More broadly, most participants were applying for PIP because they were in precarious financial situations as a result of lost income and/or not being able to work due to their health condition or disability. This financial precarity caused anxiety and stress.
Many of the participants interviewed for this research neither self-identified as ‘disabled’, nor as someone that typically asks for support or benefits. For many of them the process of applying for PIP therefore felt disempowering, demotivating and not an experience they wished to publicise by accessing support or talking to others about it.
A related challenge was difficulty in adapting to changes in circumstances, capabilities and confidence, and a lack of knowledge of appropriate support services that could help applicants to manage a disability.
Applicants have four main types of support needs:
- informational needs to help manage expectations
- practical needs to help physically manage the process
- emotional needs to help emotionally manage the process
- wider needs to help manage their wider circumstances

2.2 Challenges and support needs relating to the PIP application process

Applicants that we spoke to as part of this research highlighted a range of relatively common challenges that were related to the PIP application process itself. These were ‘common’ in the sense that they were not associated with particular stage of the PIP application (or mandatory reconsideration/appeal), or with any particular need relating to a health condition or disability.

Challenges and support needs identified by applicants in this research

For some of the applicants involved in this research, this was the first time they had applied for PIP. For many of these applicants, this was the first time they had applied for any disability benefit. There was also a high level of variation amongst participants as to whether they knew anyone else that had applied for, or claimed, PIP. As a result of this, participants reported a high degree of uncertainty as to what the PIP claim journey would involve, including: eligibility and entitlement criteria, what would be required at each stage of the process, how their responses and submissions would be judged, and the expected timeframe for the process and decisions.

This uncertainty impacted participants in different ways. For many applicants, it could result in heightened levels of anxiety, and/or frustration. These emotions were often tied to an immediate financial need (a driver in their applying for PIP) and concerns around being ‘judged’, ‘believed’ and/or ‘validated’. Emotions could also be exacerbated by the presence of a mental health condition.

I didn’t know what to expect. So, I didn’t know how to prepare for it.

(Female, 25-49, Move Differently)

I’m a worrier, I am. I honestly thought my benefits had stopped [on receiving AR1 form] and I started panicking. So that’s why I called [friend] and she calmed me down.

(Male, 25-49, Move Differently)

The unmet need here was in the clear management of expectations so that applicants felt sufficiently knowledgeable around what each stage of the process would involve, and how their individual case was progressing through that process.

Other applicants involved in this research had some previous experience applying for PIP and therefore much greater knowledge of the process. These participants had a greater appreciation of their likely support needs and had knowledge of how to access support, having already been through the process before. However, there was also an underlying scepticism of the process and a lack of confidence that the outcome of their current application would be any different to previous applications. In these cases, participants were looking for reassurance that they would be treated fairly through the process.

In a number of cases, participants highlighted how communications received from DWP seemingly contained inconsistencies, which again could lead to anxiety or frustration. This could include:

letters which set out timeframes for applicants to respond (e.g. in submitting PIP2 applications), not accounting for postal delays in receiving these letters
calls or letters which detail expected timeframes for the next step in the PIP process that are subsequently not met
outcome notifications where the summary of assessor feedback does not align with the information they recall providing at assessment, or in their supporting evidence

Where issues were felt to have occurred at one stage of the process (for example, a delay in receipt of a PIP2 application form), this could then influence applicants’ expectations and experiences of subsequent stages (i.e. a need for reassurance that a form has been received by DWP). Delays, errors, or inconsistencies, both in personal experience and as reported by others (via online or via personal connections), all had a negative impact on participants’ expectations of the stages of the process still to come.

Participants with a mental health condition (such as depression or anxiety) or a developmental condition (such as ADHD or a learning difficulty), commonly reported challenges with the PIP application and assessment process. The volume of written material that needed to be read and responded to in the PIP2 was regularly reported as overwhelming and led many participants with these conditions or difficulties to require support relaying questions and composing their responses. While the assessment was often felt to be less burdensome in this regard – taking the form of a conversation rather than a written submission – this was not always the case, and participants could report feeling anxious about the assessment process. These participants said their mental health made it difficult for them to accurately convey their situation verbally, particularly to strangers, making them fear they would not score the points necessary to be awarded PIP. For some participants, particularly those with anxiety, having access to information on what to expect in advance (e.g. via the GOV.UK website) was helpful in managing their anxiety.

He [her son, the PIP applicant] finds [written] forms difficult. He has no patience and gets hot and bothered. He’s got not no patience to read or write because he has ADHD.

(Male, Under 25, Think Differently)

For many participants, particularly those with a mental health condition, the anxiety-inducing nature of the PIP application process had a material (negative) impact on their health and wellbeing. Applying for PIP was seen to require applicants to confront and detail aspects of themselves and their lives which are highly personal, sensitive and which, in many cases, they are still trying to make sense of. These individuals may not have received much, if any, professional or personal support in managing a condition.

Emotionally I felt completely drained. I had to go into things that were quite embarrassing to discuss.

(Female, 25-49, Move Differently)

The PIP application process was experienced by many participants as one in which their honesty and integrity were being judged. Depending on the extent to which the benefit was needed to meet an immediate financial need, this could be an incredibly stressful experience. In turn, this was reported as worsening physical and mental health, with the negative impact increasing for those who received an undesired outcome following assessment.

Challenges and support needs identified by voluntary sector stakeholders

In preparation for the interviews with PIP applicants, we carried out eight interviews with representatives of voluntary sector organisations involved in delivering support to applicants progressing a PIP application or appeal. There are a number of commonalities in their reports of the challenges they see their clients facing in the PIP claim journey which are detailed below.

The overwhelming emotion amongst most applicants accessing support was a sense of frustration around the application process and how difficult it is. Interviewees felt this difficulty led some applicants to feel that the system is designed to ‘trip them up’, with barriers imposed specifically to limit access to money that they are ‘entitled to’, so that the Government can reduce the amount paid out. In particular, those clients who have previous experience of unsuccessful claims with DWP were seen to report feeling that DWP does not believe their evidence. This undermines their trust in the PIP process, as well as in DWP overall. Low trust in DWP was less commonly expressed by those claiming PIP for the first time; those with no previous experience of DWP tend to approach the process with a more neutral outlook.

The voluntary sector organisations we spoke to reported that the most common reason why applicants needed help in their PIP journey was due to a lack of confidence in navigating the PIP application, assessment, or appeals process. For those who are struggling financially, the outcome of their PIP application can feel especially significant, and this can lead to increased anxiety and decreased confidence. Many therefore needed support to feel sufficiently confident to progress their application. This aligns with the feedback from the applicants participating in this research.

Additionally, voluntary sector organisations interviewed in this research highlighted two further challenges, that were also mentioned by a small number of participants. There was often a ‘language and literacy barrier’ facing applicants going through the PIP process. This could be because English is not an applicant’s first language; additionally, many applicants struggle with processing the written material associated with a claim (and producing their own written evidence) due to learning difficulties, language processing disorders, or lower levels of education. Applicants with sensory disabilities such as sight loss can have ‘access’ challenges in managing the communications and paperwork involved in processing their claim. In some cases, these challenges were seen to be exacerbated by mental health issues that can lead them to feel more anxious about the process.

I felt reasonably confident because the people around me said go for it, but once I started it, no… I have severe dyslexia and my typing skills aren’t great.

(Female, 50-65, Feel Differently)

2.3 Anticipated challenges of digital aspects of the application process

While only three applicants interviewed had first-hand experience of completing digital PIP applications, all applicants were asked to discuss how a digital application process might impact their ability to complete a PIP application. They identified a number of potential challenges associated with a digital application process, as well as some benefits.

A common challenge identified by applicants was that some people are unable to access the internet to complete a PIP application online due to the lack of internet or the appropriate hardware (a computer, tablet or smartphone). This was the case for a number of participants within the sample for research. Others highlighted how trying to complete something of the length and complexity of the PIP2 form on a tablet or smartphone may also be challenging for people, regardless of how much they already used technology.

To take that [paper] option away would cause a lot of stress for a lot of people… you couldn’t fill it in on a phone, it’s too complicated.

(Female, 25-49, Move Differently)

A digital application process was anticipated to negatively impact certain groups, such as older people or those with learning disabilities, as they would be less likely to possess the digital literacy and confidence to be able to complete an application online. Applicants who reported low levels of digital literacy felt less confident in their own ability to complete the application digitally, as compared to a paper-based option.

Somebody who has a learning disability would find it harder online.

(Male, 50-65, Move Differently)

I’m not very good with technology. It’s easier to do it on the phone, vocally… even though I have a smartphone, I’d end up messing it up [online].

(Male, 50-65, Move Differently)

One applicant highlighted that when they needed support with the online application, they felt unsure of where to go. Despite feeling confident with digital technology, they encountered problems with the operability of the online form but were unaware of where and how to access relevant technical support. They felt there should be a way to access support specific to the online system, rather than the general PIP helpline that involved long wait times on hold.

It’s not about whether I have access to a computer, it’s the user-friendliness of it… DWP could have a helpline to ask for advice on online forms… You can’t ring up and say I’m struggling with this page… You’re waiting an hour and a half to get through.

(Female, 50-65, Feel Differently)

While access and digital literacy were commonly cited challenges, many participants recognised that a digital application process also had the potential to convey significant benefits for those who preferred that route. As discussed previously, there are aspects of the current process that introduce delays in decision making (e.g. sending forms by post) and also introduce uncertainty around whether forms have been sent/received. A digital system would help to address some of these concerns.

There was also an anticipation that a digital application process may enable other functionality such as saving progress (allowing applicants to complete forms at their own pace) and incorporating other support mechanisms to be used (such as transcription or text-to-speech web readers). For some participants who reported feeling overwhelmed by the length of the PIP2 paper form, the option of a digital version was seen as potentially helping to reduce stress by making it seem more manageable.

2.4 Broader challenges which can influence experiences of the PIP application process and associated support needs

This research sought to understand the additional support needs that PIP applicants may have during their claim journey. While a number of these needs relate to the process of applying for PIP (or challenging a decision), many common support needs relate to broader challenges that applicants faced.

Financial pressure within the household

A common challenge that was reported by participants in this research was financial pressure within the household. Typically, the prompt for commencing a new PIP claim was a change in financial circumstances. This may have resulted from costs associated with managing a health condition or disability, but more often related to a loss of income or increase in general living costs. PIP was not seen as a benefit that would bring in a substantial amount of money but, for many of the participants we spoke with, it was seen as money that would help alleviate financial pressures.

While participants were typically not seeking emergency funds to address sudden financial shocks, the lengthy PIP claim journey (and lack of expectation-setting over timescales) was something that could lead to stress for applicants as financial resources became more stretched over time.

Personal identity and independence

For approximately half of the participants interviewed, this was the first time they had applied for PIP. In many of these cases, this was because they had only relatively recently got to a point in their lives where a health condition or disability had begun to impact them sufficiently for them to consider themselves in need of support. It was common for such participants to express that they neither identified as ‘disabled’, nor as someone that asks for support or benefits.

There was a disconnect between how some participants saw themselves and what they felt applying for a disability benefit like PIP said about them. They typically expressed little to no knowledge of the benefits system as a whole, feeling it to be alien to their experience. These individuals often downplayed the impact of their condition and had very limited awareness of or access to formal sources of support or advice to help them understand and manage any health condition. This could also influence their experience of the PIP application process, and the extent to which they were prepared to challenge any decision.

I’ve worked for the last 44 years, it’s a bit of a shock [applying for a benefit]. I wasn’t going to bother [claiming] but then my daughter said, ‘No, no, you need to have a look at it, you’re struggling, you could be entitled to it’.

(Male, 50-65, Move Differently)

I suppose if I was a bum and I’d claimed everything all my life, then I’d be okay… but because I’ve worked, I’ve made my own living I seem to be struggling more than anybody.

(Male, 50-65, Move Differently)

Adapting to changes resulting from a disability or health condition

Some participants reported challenges adapting (physically and mentally) to changes in their ability resulting from an illness or accident. In these instances, there could be a need for various other professional services to meet wider needs, including:

counselling and psychological support, to help someone to come to terms with a change in their body/health
employment support, to help someone to find employment or develop skills that will enable them to work
housing support, to help someone adapt to a disability that impacts their mobility and access needs

For these participants, there was a notable lack of knowledge or understanding of what support services exist or how to access these services. It could also be coupled with a lack of informal social support structures that could help them to talk about and manage a disability or health condition.

Every day I find challenging, because I have to live inside my head, and that’s not a good place to live.

(Male, 50-65, Move and Feel Differently)

What I am [saying] to you, if my wife were here, I will not say it. Because I don’t want to show my family how bad I feel. It puts all my family down.

(Male, 25-49, Move Differently)

Managing intersecting and fluctuating health conditions

While most participants applied for PIP for one primary condition, it was relatively common for applicants interviewed to report multiple health conditions impacting them on a day-to-day basis. These conditions often fluctuated and interacted with one another, with physical health conditions or disabilities also often influencing mental well-being and vice-versa. The extent to which these conditions were formally diagnosed and/or treated varied hugely within the sample.

Challenges in accessing healthcare and having a holistic assessment of health conditions could mean that participants struggled to understand or articulate how their conditions intersected and impacted their day-to-day lives. In turn, this could be seen to influence how they progressed their PIP application, and what evidence they could draw on to support their claim.

Accessing support

There were two additional common challenges that were identified through interviews with applicants, although not raised directly by participants themselves.

The first related to access to social support structures. Some participants had relatively limited support networks of friends or family members, often directly influenced by a disability or health condition that contributed to social anxiety. This could severely restrict their opportunities to access support during their PIP claim journey.

The second related to access to technology or the internet. A small number of participants did not possess a smartphone and did not feel confident using the internet. Again, this restricted the range of support that they were able to access both in managing their health condition and in supporting their PIP application. This would also be a major barrier to their completing a PIP application should they be directed to a digital application service.

Often these two challenges intersected (i.e. participants were both socially and digitally disconnected).

2.5 Four types of support needs identified

In reviewing the challenges reported by participants engaged in this research there were four broad types of support needs that were identified (illustrated in Figure 3):

1. Informational support needs, which relate to factual questions around the PIP application and assessment process, with support helping to set and manage the expectations of applicants. For example, common issues here could include questions relating to:

what DWP will ask at each stage
how decisions are taken
who is involved in decisions
the timeframe and process for decisions
the appeals process; and the awards review process

2. Practical support needs, which relate to practical challenges that applicants could face in engaging with aspects of the process, with support helping them to progress their application. For example, common issues here could include:

anxiety in calling to commence an application
challenges interpreting the questions on the PIP2 form due to lack of confidence, low literacy or a learning disability
challenges writing responses on PIP2 form due to lack of confidence, low literacy, a learning disability or the impact of a physical disability
issues using technology (e.g. to complete PIP2 forms online)
difficulties communicating verbally within an assessment process
a desire for someone to keep a record of what was discussed at assessment

3. Emotional support needs, often relating to anxiety or stresses which can be exacerbated through the (actual or expected) process of applying for PIP, with support helping both to reduce the impact of anxiety on their health condition and enabling them to progress their application. For example, common issues here could include:

stress resulting from completing PIP2 form
anxiety in advance of assessment
stress and anxiety resulting from / during the assessment
distress and anxiety resulting from an undesired outcome of an assessment
stress and anxiety resulting from the receipt of an Award Review notification

4. Wider support needs, which will differ by individual but are likely to include needs relating to health, household finances, housing, employment and training, and relationships. Support can help to mitigate the impact of these wider factors on an individual’s ability to complete their PIP application. For example, common issues here could include:

identifying suitable employment opportunities (and retraining needs)
access to a health professional
making changes to lifestyle and/or home environment to accommodate health needs
financial benefits advice and/or access to hardship funds
raising awareness of support services

It should be noted that this is a typology of support and not terms that those applicants involved in this research (or PIP customers more broadly) are likely to use to explain their support needs.

Figure 3: Identified support needs

These support needs (informational, emotional, wider and practical) are not mutually exclusive, and in many cases can be seen to intersect. For example, an unmet need for information on aspects of the PIP process can increase the need for emotional support and reassurance. In many cases, addressing informational support needs has the potential to reduce practical and emotional support needs. Each of these needs will be influenced by factors such as the applicant’s:

health condition (in particular their mental health and cognitive capacity) and comfort in discussing their disability or health condition with another person
confidence and competence in completing the application, assessment and, in some cases, the appeal process
digital access
literacy and language skills
knowledge and/or experience of the PIP process
formal and informal support structures
financial circumstances

While the identified support needs are relatively consistent across participants engaged in this research, they may be more or less prevalent at different stages of the process, as detailed in the subsections which follow.

Question 8

3.  Support needs across the PIP claim journey

Accepted Answer

3.1 Introduction

This section details applicants’ experiences, needs, and the support accessed (if any) at each stage of the PIP claim journey. While there were different challenges faced at different stages of the process, many of these challenges related to a lack of understanding or expectations of what each stage of the process might involve, and what exactly was being asked of them.

In analysing presenting support needs - and people’s corresponding experiences of the application and assessment process - there were no identified differences between applicants with and without an AS Marker. Participants with an AS Marker did not identify their health condition as resulting in needs that were any different to those who did not have an AS Marker. The presence (or absence) of a serious mental health, or cognitive condition impacting communication did not always appear to correspond with the allocation of an AS Marker. This suggests that existing AS marker screening may not pick up on all applicants with additional support needs and others without such needs may have a marker added to their file.

Key insights within this section include:

Applicants could experience anxiety at registering a claim (PIP1) due to a lack of understanding of their eligibility, or of the questions likely to be asked of them. For those with more confidence going into the process, there could be some frustration at the wait-times for reaching DWP to register their claim. Regardless of confidence, applicants would benefit from a better understanding of how their claim was progressing – i.e. there was an informational need. Paper or digital options may be beneficial in reducing barriers, as well as signposting to support services at this early stage.
Providing health information (within the PIP2 form) was typically the most challenging stage for applicants due to a combination of the information required and ‘physical’ process of completing a lengthy form within a set timeframe. Participants were unclear on what information was needed or whether they were ‘doing it right’ – without formal or informal practical support to complete the form this could be highly stressful. This could lead to panic where they simply could not face the task of filling it out without support. However, various barriers existed to accessing support including lack of awareness of support services and issues with people not wanting to describe their circumstances in the necessary detail. Here participants could benefit from access to more information, practical support in completing the form (e.g. a scribe), as well as potentially emotional support.
The assessment was also a point of high stress for many applicants. Much of this stress was again attributed to not knowing what to expect or what they would be asked. In many ways it was seen to be easier than PIP2 in that it involved a conversation (rather than a written submission), but the nature of the interaction with the HCP assessor (and their perceived competence) largely determined applicant’s actual experience. Most people did not report requiring support during the assessment itself, but benefited from ‘informational’ support in advance in setting expectations in terms of timeframes for appointments and what questions would be asked.
Where applicants did not receive the outcome expected following assessment, there could be a sense of injustice and frustration that their evidence and condition had been invalidated. This either provoked a desire to challenge DWP or led to resignation on the part of the applicant. Support needs at this point largely related to ensuring people were aware of their right to a mandatory reconsideration (MR), information on the process and signposting to support that could help them with it.
At MR and appeal, there can be a greater (often unmet) need for support due to the timescales involved in making decisions and what is commonly perceived as the formal and daunting process of challenging DWP (in particular through the courts). As with other stages of the process, there was little understanding of what to expect from an MR or appeal. Where participants were most vulnerable and experienced higher levels of anxiety in the process, these stages were something they did not feel capable of going through without support.
PIP claimants that were going through an award review often expressed surprise, confusion, and distress at having to go through the process again, particularly for long-standing conditions. Managing expectations following an award may help to better raise awareness of the potential for this process to take place outside of formal review periods.

3.2 Support needs on registering a claim (PIP1)

PIP1 refers to the initial form filled out by applicants to initiate a PIP claim. It asks for basic personal information and the applicant’s bank details. It is primarily filled out over the phone, but applicants can request to be sent a PIP1 paper form.^{[footnote 12]}

The principal challenge described by applicants at this stage was that of anxiety around initiating the process through calling DWP. The prospect of a formal conversation to request financial assistance (and disclosing personal information to a stranger) made applicants feel uncomfortable, particularly those that were experiencing mental health challenges. There was an information gap for some applicants at this stage: some were unclear over the level of information they would have to provide at this stage and many lacked awareness of the option to fill out the PIP1 form on paper.^{[footnote 13]} Many participants did review the PIP benefits page on GOV.UK, but typically this was to commence their application rather than to understand the process in any detail. Section 4.2. details how applicants were currently trying to address support needs.

I don’t want people to know [about my struggles] … It’s not something I want to broadcast.

(Female, 50-65, Move Differently)

Many applicants felt their anxiety would have been reduced if they had a better sense of what was going to be required of them during the phone call to register their claim, so that they could prepare themselves better. Some who were unaware of the paper option also suggested this would have been less stressful for them. One applicant managed their anxiety by having a companion present that could help to answer or clarify any questions they struggled with, as well as provide emotional and moral support.

Once applicants had made the decision to call and initiate a PIP claim, they reported facing long wait times on hold. This represented a barrier as many had other responsibilities and commitments that prevented them from being on the phone for this long. As well as being frustrating for the applicant in that moment, this delay also set the tone for the rest of their interactions with the DWP and, in some cases, dissuaded them from contacting DWP directly in the future. Many wanted alternative ways to initiate their claim and were confused as to why this stage could not be completed digitally.

Having waited an hour on the phone… you kind of feel under pressure to not want to ring back.

(Female, 50-65, Feel Differently)

After completing the PIP1 form, either by phone or post, applicants often reported feeling unclear (and often pessimistic) regarding how and when the remainder of the PIP claim journey would unfold. They needed greater clarity over the remaining steps in the journey and the associated wait times, and many were unclear on where to access information to address these needs.

Interviews with voluntary sector organisations also suggested that, while accessing support services can be extremely helpful at this stage, awareness around support services is generally low. Even when a potential applicant knows about available support and finds an organisation that could offer it, demand greatly outstrips supply and getting an appointment can therefore pose an additional challenge.

3.3 Support needs during health information gathering (PIP2)

The ‘PIP2 form’ is also known as the ‘How your disability affects you’ form. Applicants are asked to provide detail on how their health conditions and/or disabilities affect their day-to-day life. It is primarily completed on paper, but applicants in certain regions now have the option to complete the form online. Many applicants felt the PIP2 was the most challenging step in their PIP claim journey.

Applicants commonly reported feeling intimidated by the length of the PIP2 form and frustrated by the format of the questions. Many became stressed and anxious about the best way to answer the questions, lacking clarity on what information to include in their answers, how much detail they should go into, and when they should repeat information from previous responses. They believed they were entitled to PIP, but often found it difficult to convey how and why.

It’s a beast of a document. There’s a lot you can put in and not put in. And trying to work [that] out…I find it quite daunting, starting it.

(Male, 50-65, Move Differently)

Many felt they would have benefitted from greater clarity around what information was relevant to the eligibility criteria, and guidance around how to approach answering the questions on the form. When seeking clarity and guidance, some applicants reached out to family or friends who were more knowledgeable or experienced with PIP.

I found the form was quite vague. It was a kind of general form, so I found it hard to go into the details when some of the questions were not applicable to myself.

(Female, 25-49, Sense Differently)

Many applicants reported facing emotional, intellectual, and practical challenges when trying to fill in the PIP2 form. As mentioned previously, for many applicants this was the first time they were describing themselves as ‘disabled’ and writing in detail about a health condition or disability was something that could be deeply upsetting and triggering, particularly for those with mental health conditions. Applicants with conditions such as dyslexia said they struggled to accurately convey the extent to which their health conditions impact their life in a written format. Applicants also experienced practical challenges that made it harder to complete the PIP2 form, such as fatigue (often a symptom of their condition), language and literacy barriers, or physical difficulty writing (again tied to a health condition). We have used the term ‘practical needs’ to convey the nature of these challenges.

It was quite stressful… you really have to brutally look at things you don’t want to focus on.

(Female, 25-49, Move Differently)

These groups of applicants could require a ‘scribe’ to provide question-by-question practical support in filling in the form. In these cases, the helper read out the question and wrote down the response as voiced by the applicant, often helping them to structure the response and decide what to include or omit. Many were able to call upon family and friends that understood their struggle and could help them more accurately convey the impact of their condition. A small subset of applicants reported receiving this support through formal organisations, such as a veteran’s charity. In some instances, a digital application option would have helped address practical challenges in completing the form, particularly if it also enabled voice recognition and the option to save progress.

I knew what I wanted to say but I’m not sure I said it in the best way possible. Prior to the stroke I could do something really coherent to get my point across really well. And I found that more of a struggle. I did notice limitations in my thinking.

(Male, 50-65, Move Differently)

When my daughter was reading it to me, I found it easier to answer. When I was trying to do it, I was just so confused.

(Female, 50-65, Move Differently)

Whilst recognising their need for support filling in the form, some applicants were reluctant to ask for help from friends and family as they did not want to reveal the full extent of their personal everyday challenges. Some also felt that the time involved was too big of a task to ask of somebody else, not wanting to impose. These applicants could benefit from a ‘scribe’ that they did not know personally, perhaps through an external organisation. As such support is generally thought to be seldom available, this support need often went unaddressed for these applicants.

I don’t want to bore people with it, so I do kind of shut down… by the time I got to this [PIP2] I wasn’t talking about it. It was just another thing that had to get done.

(Female, 25-49, Move Differently)

I didn’t want to ask [my friend for help] … that’s why I left it to the last minute. Without her helping me on that, I probably wouldn’t have done it.

(Female, 50-65, Move Differently)

Another challenge commonly experienced by participants at this stage related to the limited (4-week) time window to complete the PIP2 form.^{[footnote 14]} Applicants often struggled to access the support they needed to complete the form and gather their medical evidence in the time provided, alongside managing their health conditions and other broader life challenges they were facing.

“I would’ve done it sooner but because my daughter’s very busy at Christmas and she couldn’t help me …that’s why it never got done [before the deadline] …and I didn’t know who else to ask.”

(Female, 50-65, Move Differently)

Many needed longer time frames to complete the form, and more information about what would be required of them beforehand to be able to plan accordingly. This meant often applicants requested extensions, with some being advised to do so from the start, depending on their situation.^{[footnote 15]}

Interviews with voluntary sector organisations reinforced the findings around the common practical barriers faced by applicants completing the PIP2 form, which are heightened for those with certain support needs. For example, the 4-week period for applicants to complete the form adds a sense of pressure which can elevate to panic among those who are struggling. Many feel the deadline is unreasonable and that they would benefit from additional time given the length of the form and the time it takes to gather supporting evidence. However, awareness around the ability to request an extension on the return date is low.

In addition, those with certain physical disabilities or developmental conditions faced specific difficulties. These include the print on the form being too small for those experiencing sight loss, the questions being incomprehensible to those who experience language and literacy barriers, and maintaining focus throughout a lengthy form being too demanding for some with memory conditions or chronic fatigue.

3.4 Support needs at the assessment stage

At this stage, applicants are assessed by a healthcare professional either in person, by telephone, or via video call. The assessment broadly follows the structure of the PIP2 form and is focused on how their health condition/disability affects their ability to perform everyday tasks.

Prior to attending the assessment, many applicants reported feeling anxious and stressed. Some mentioned hearing from friends that assessors were going to try to ‘catch them out’, and generally did not know what questions were going to be asked. Applicants wanted a better understanding of what to expect and balanced guidance on how to prepare for questions.

I didn’t know what to expect. So, I didn’t know how to prepare for it.

(Female, 25-49, Move Differently)

In seeking more information, some applicants asked friends and family for advice, although the information they can provide is often limited. A small minority of participants mentioned searching for more information online, but often reported finding only information which they felt was intended to ‘skew the system’ in their favour in order to be awarded PIP, which they did not want to do. No participants mentioned using DWP guidance or accessing GOV.UK to look for information on the assessment process.

One applicant living with anxiety and depression said they received a reminder call from DWP the day before their assessment, during which they were able to ask questions and gain reassurance about the process. This was hugely beneficial and they said that, without this reassurance, they would not have attended the assessment. However, this experience was not common with only one applicant reporting that they received a reminder call. For many applicants, they were unable to get the information they wanted in advance of the assessment itself.

During the assessment itself, applicants reported highly variable experiences, often based on the nature of their interaction with the HCP assessor. Some were positively surprised that the experience was not as difficult as they expected and attributed this to the manner of the HCP. However, others left feeling frustrated because they perceived the HCP as acting in a rude and/or unsympathetic manner. Many were already embarrassed about asking for financial assistance and having to explain their daily struggles to an authority figure further compounded this feeling. Much like the PIP2 form, applicants found it upsetting and difficult to talk about their personal daily struggles in such detail. Applicants expressed a desire to feel ‘heard’ and feel a sense of compassion from HCP assessors. There was also an awareness of how variable assessment experiences can be, resulting in a desire for more consistency, regardless of who is carrying out the assessment. In hindsight, participants could identify how emotional support would have been beneficial at this stage, but this was not something that many anticipated needing beforehand.

When I talk about certain things… it slows you down a bit… it’s hard to explain your wellbeing and put it into words.

(Male, 50-65, Move Differently)

The assessor was rude. She basically kept saying there’s nothing wrong with me.

(Female, 25-49, Feel Differently)

After completing the assessment, some applicants reported leaving with no clear impression of whether they would be awarded PIP, or when they would receive their decision. Having clearer informational communications around the next steps of the process – and how the information taken from their assessment would be used to inform the decision they would receive – could help set realistic expectations.

No idea if the assessment went well. No idea what they’re judging me on.

(Male, 25-49, Feel Differently)

The only thing that would’ve helped is some kind of benchmark… you know how bad is bad and how good is good.

(Male, 50-65, Move Differently)

Many of these findings around the assessment stage of the PIP claim journey were corroborated by findings from discussions with voluntary sector organisations. A common theme was that long wait times for assessments not only frustrate applicants but can also lead to a discrepancy between the evidence provided on the PIP2 application form and the applicant’s condition at the assessment stage. This was perceived to negatively affect assessment outcomes, as some applicants feel HCP assessors do not make reasonable allowances for minor disparities between the evidence provided and what is being said at assessment.

There are also a number of other findings from interviews with voluntary sector organisations that align with the findings from the primary research, such as a lack of understanding amongst applicants around what to expect from an assessment. Similarly, telephone assessments, whilst not without benefit, were seen by some voluntary sector organisations as limiting the ability of HCPs to undertake as holistic assessment as would be possible from a video or face-to-face assessment. Furthermore, despite the applicant providing details of their GP on the PIP2 application form, some organisations reported that HCPs often do not have evidence from the GP to hand during assessments. They believe this makes applicants feel that HCPs are lacking ‘objective’ evidence which would support their claim and which they have consented to give access to.

These findings align with the primary research, suggesting a common set of challenges and subsequent support needs for many applicants at the assessment stage, namely: a need for expectations to be set early around timeframes and process, more readily available guidance around what will be asked of them during the assessment, and better and more frequent communications.

3.5 Support needs following the decision stage

This stage refers to the period immediately after applicants have received a letter outlining the decision on their PIP claim (whether this be a standard award, single component award, or a nil award) and the associated next steps. If an applicant is unhappy or disagrees with a decision, they can request to have their claim reconsidered.

For those that received a desired outcome – which they believed to be fair and deserved - receiving this letter was a moment of relief.

In contrast, those that were unhappy with the decision made, either having been placed on a lower rate than expected or receiving no award, this was an intensely demoralising event. These applicants experienced a strong sense of injustice, rejecting what they felt was a judgement on the existence and impact of their health condition or disability. Among this dissatisfied group, it was common for applicants to highlight perceived inconsistencies between their submission or evidence provided and the HCP’s interpretation, as reflected in the scores given on the assessment. Others blamed themselves, concluding that they were not capable of answering the questions ‘properly’ or accurately reporting the difficulties they experienced.

Maybe it’s my fault. Maybe I should have filled the form more descriptively.

(Male, 50-65, Feel Differently)

Those who disagree with the award decision have the option of challenging this decision. While some participants were able to take comfort in their ability to appeal (and felt confident to do so), many felt too fatigued by the process to take any further action.

It’s a joke, so what’s the point [in appealing] … I’ve worked with benefits before, it’s pointless challenging it.

(Female, 25-49, Feel Differently)

Applicants who did not receive a PIP award and decided not to pursue their claim further tended not to have an alternative plan in mind, generally lacking awareness of alternative benefits that may be available to them^{[footnote 16]}. Although their circumstances were unchanged and they were still struggling, most were at a loss as to where they could go and seek support to determine what alternative benefits they might be eligible for. These applicants required information on next steps and potential support services that could help them. Some may also have benefitted from information on how to pursue a mandatory reconsideration.

No one is helping me… I’ve got no one to look after me.

(Female, 25-49, Move and Feel Differently)

3.6 Support needs at mandatory reconsideration and appeal stages

A mandatory reconsideration (MR) is when an applicant disagrees with the decision made regarding their claim and exercises their right to have DWP reconsider the submitted evidence. Applicants can also submit additional evidence as part of this. If the applicant is not content with the outcome of their reviewed decision, they can go through the appeals process, which can ultimately lead to the applicant attending a tribunal.

When deciding whether to initiate a MR, some applicants reported feeling pressured by the timeframe given in which to confirm this. They wanted more time to consider their decision and their circumstances. Some were concerned about missing the deadline entirely due to logistical problems like postal delays or challenges gathering evidence. One applicant with mobility issues explained they had the evidence in a digital format but did not own a printer, meaning they had to travel to family and friends’ houses to find one. Not only did this cause pain and discomfort, but also meant they were delayed in sending their MR. They wanted more time to account for these types of issues.

Applicants in this research typically identified a need for support in preparing a MR response to address whatever issues were identified in the initial decision. This support was largely to help ensure that they had not missed anything and were covering the range of information likely to be needed.

My wife has medical knowledge and understanding… and my mother-in-law acted as a scribe and put [it] in ‘proper’ English, if you like.

(Male, 25-49, Move Differently)

After an unsuccessful outcome to a MR, some applicants were concerned about making an appeal because they felt it represented a steep escalation. The prospect of attending a tribunal was intimidating for many, bringing with it an impression of more consequential outcomes should they be unsuccessful in their appeal. There was an associated support need here as many wanted information around the process and potential outcomes of a court decision. Some applicants looked for information and guidance around the appeals process by asking friends or family, searching online, and a few applicants were able to access a formal support service that helped them to manage the process. However, often their need for clarity was left unmet and they ultimately withdrew from the process.

[The MR] was a nightmare, I couldn’t understand what I’ve got to do… I don’t think I would’ve got it back [to the DWP] if it wasn’t for this lady [from a formal support service].

(Male, 50-65, Feel Differently)

As at the decision stage, there was a subset of applicants who received an undesired outcome to their MR and felt unable to pursue their claim further to the appeals stage. They believed they were eligible for PIP based on their understanding of the criteria but lacked the motivation and energy to continue with the process. They needed further emotional support and motivation to initiate the appeal process, and further practical support (such as help to fill out the appeals form) to be able to work through and complete this.

A number of applicants were interviewed in this research who did access support in progressing their case through the appeals process; fundamental to this was having ‘professional’ representation.

If they don’t give me support, I don’t know the way I can go… I’m lost in that situation.

(Female, 50-65, Feel Differently)

Discussions with voluntary sector organisations also highlighted the confusion many applicants felt around the MR and appeals processes; most applicants do not know where to start and lack the confidence and knowledge to challenge DWP’s decision. Given the lengthy timeframe for the appeals process (which can take over a year), the stress applicants experience, and the extensive paperwork involved, many applicants feel that the effort is not worth it. Additionally, for those applicants who struggle with communication, the fear of facing a tribunal and making their case discourages them from going ahead with the appeal.

3.7 Support needs at award review (AR1)

The AR1 ‘Making sure your award is right’ review form is for applicants who are already in receipt of PIP. The form is issued by DWP to determine whether someone’s functionality has changed since their last PIP award. DWP can review someone’s PIP award at any point in time, even for awards that have been made for a fixed period. Claimants can also request an award review themselves, for example if their condition has worsened and they think they might be eligible for a higher rate.

While an award review is a standard step in the process from DWP’s point of view, for many of the applicants we interviewed, it was unanticipated and unforeseen. This means that when they receive the AR1 form they often became panicked, stressed, and confused. Many feared they were losing their benefits entirely, resulting in a ‘spiral’ of negative thoughts. Applicants likened the award review stage to the stress and anxiety they experienced during their initial application. Those with conditions that were incurable or degenerative were confused as to why the process was necessary in the first place, and why they were being ‘forced’ to relive such a stressful period of their life^{[footnote 17]}. Applicants perceived the award review stage solely as an attempt by DWP to remove their benefit, rather than an opportunity to be moved onto a higher rate if their condition has worsened since their initial application.

The idea of reassessing to give more help… it’s an excuse to find a reason [to take it away]

(Female, 25-49, Move and Feel Differently)

Applicants demonstrated a need for greater understanding of the award review process and the reasons behind it. To address this need, they sought emotional and practical support and reassurance predominantly through the same people and organisations that they had engaged during their initial application. These sources included informal advisers, such as family members with knowledge and experience of the system, or organisations such as Citizens Advice.

To be honest with you, it’s embarrassing because I don’t hardly talk about my emotions in front of [my companion] but it did make me cry. What else have I got to do? I told them everything and now they’re asking me [to complete an AR1 review].

(Male, 25-49, Move Differently)

Another similar challenge identified during the award review process was a lack of consistent expectations around review timeframes. Several applicants were shocked to receive their AR1 review forms because it was so far away from the end of their current award, meaning they felt unprepared. Many said they were only aware of when their current award expired, and not of when they might be expected to complete the AR1 process. In an attempt to address this need, some reported contacting DWP directly for clarification, but getting through and accessing the right information proved difficult.

I was shocked to get it [AR1] in November, because it’s not due till August. I rang them up to check why I had it so early, and they said, ‘It could still be a year before you hear anything’… this is just ridiculous.

(Female, 25-49, Feel Differently)

Applicants also reported being unsure about how to answer the questions in the AR1 form.^{[footnote 18]} This was closely linked to their perception that the AR1 form was designed ‘to catch you out’. In particular, there was confusion over whether they should report ‘no change’ or whether they had to re-describe their condition in great detail and resubmit all their evidence. This was again exacerbated by their fear of losing a benefit which many had come to rely on. Applicants reported searching online for advice on how to approach the award review, but recognised the information they found might not be comprehensive. Others spoke to informal advisers who were able to help them, but expressed concern that not everyone would be able to access a person of knowledge or experience of award review.

If I say nothing has changed, do they take it off me?

(Female, 25-49, Move and Feel Differently)

[It would be useful to have] a helpline, or someone that could come round and visit you at home to help you understand it. I can’t retain information… I’m lucky that I have the support that I’ve got.

(Female, 25-49, Feel Differently)

Question 9

4.  Identifying and addressing additional support needs

Accepted Answer

4.1 Introduction

This section details what support can help to address the needs of applicants that have been identified in Section 2 and Section 3 of this report, the barriers and facilitators to accessing support, and how DWP might identify those in need of additional support.

Key insights within this section include:

The PIP process itself is a cause of stress and anxiety for many applicants, often due to a lack of awareness of what to expect. Applicants are currently trying to fill this gap in understanding independently through conversations with friends or family, or searching online. Improving access to DWP-signposted information or sources of guidance on the PIP process (online, by telephone, or in-person at a local support service) would help applicants to address queries that relate to different stages of the process, enabling them to better manage their expectations. This would reduce levels of stress and anxiety for many applicants. In some cases, for example following an undesired award decision, this information should be proactively communicated by DWP.
For those who were less confident in their own capabilities there was a need to ensure access to formal or informal practical support to help people manage the process of completing the PIP2 form (i.e. reading and writing). Similar support may be beneficial to a subset of applicants during the assessment process where mental health or developmental conditions could lead to challenges understanding HCP assessors. which applicants who felt more anxious about the process could experience. This need for more practical support was currently being met primarily by friends and family, with a minority using voluntary sector support services. However, a subset of participants have more limited social networks and/or feel less confident in accessing support which can mean this need is unmet.
In addressing the need for emotional support, applicants relied on their close friends and family or, to a lesser extent, professionals. The need for emotional support was greatest during specific parts of the process (e.g. during assessment) though could also arise at different points in time dependent on other factors (e.g. the impact of fluctuating health conditions).
Applicants could often benefit from access to support to address wider needs that could relate to finances, housing, relationships, employment and managing their health conditions. While people are not seeking this support through DWP, many have not previously accessed support beyond their GP or hospital, and do not know where to start^{[footnote 19]}.
Participants have mixed views as to what support (beyond information provision) DWP should provide. Some applicants were highly sceptical and distrustful of DWP providing support, given they are the organisation understood to be undertaking the assessment and, in some cases, denying a PIP award. However, many others were very positive and would expect DWP to ensure access to support as a public service. Given various barriers exist to access (including low awareness, social anxiety, access issues), the key is to ensure applicants are proactively engaged and provided with choices and options based on what they are comfortable with.
Participants felt that DWP could ask applicants whether they have support or access needs at the point of registering a claim and ensure that call handlers are trained to identify support needs.^{[footnote 20]} There may be some characteristics that make it more likely that someone may have additional support needs (e.g. mental health conditions, developmental conditions, lack of social support structures, access issues, first-time PIP applicants) but it is important that these are not used to make assumptions around need-states.

4.2 How applicants are currently trying to address support needs, and what further support is needed to address their needs

As detailed in Section 2.5, there are 4 broad types of support needs that were identified in this research:

Informational support needs
Practical support needs
Emotional support needs
Wider support needs

Below we set out how, if at all, these support needs were addressed.

Meeting informational support needs

In addressing the need for information about the PIP process, applicants tended to ask questions of friends or family members (particularly if they had previous experience with PIP or the benefits system); or to search online for information that could answer their question (which could include accessing GOV.UK).

When discussing PIP with friends and family, the extent to which their need for information was met naturally varied. Friends and family might not have any formal understanding of PIP themselves, or any direct experience to draw on. This meant applicants might receive incomplete or unbalanced information and, at times, misinformation (e.g. that certain conditions are guaranteed to qualify you for PIP). Searching online could lead them to GOV.UK websites that had official information and guidance, but also tended to direct them to different public forums, where the information was focused on how to approach the process so that they were more likely to receive a desired outcome. Some felt this was unhelpful as they did not want to ‘skew’ the result in their favour (particularly those who were already struggling to reconcile the idea of claiming benefits with their existing sense of self).

I did google it quickly… there was loads of stuff on there about what to do, how to do this, how to answer questions, and I thought I’m not going to falsify what I’ve got, I’m just going to be honest.

(Male, 50-65, Move Differently)

Some applicants did not have any friends or family that were knowledgeable or experienced with PIP, and therefore were unable to ask for support. Others did not want to ask their friends and family as they felt too embarrassed to reveal they were applying, or reveal the extent to which they were struggling. Similarly, some applicants did not search for more information online, either because they struggled with digital literacy or digital access, or because they did not think to seek information online.

Those applicants participating in this research who felt more confident and less in need of additional support expressed a preference for DWP to ensure access to information or sources of guidance that could be accessed online, by telephone or in person to respond to a specific query about the process. Several participants referenced a desire for a DWP-provided ‘helpline’ or live chat function (explicitly not a chatbot) to ask queries around the PIP process. A Disability Service Centre helpline is provided by DWP for applicants that have started a PIP application which suggests that there is a lack of awareness of this service amongst claimants. Many people also flagged that providing a contact number within the PIP2 form itself would be helpful.

Meeting practical support needs

In addressing the need for practical support, most applicants sought out friends or family that were capable of helping them complete tasks like filling in forms. Some claimants went to formal support services provided by organisations such as Citizen’s Advice or other voluntary or private sector organisations. More formal support was much more likely to be accessed by applicants during the appeals process (where they sought representation), or where they were already accessing some form of support for their health condition or disability and the organisation could support with wider needs (e.g. the Stroke Association).

Those that had help from family and friends to complete tasks generally felt well supported. They were able to offer more personalised support due the nature of their (trusted) relationship. Often applicants explained that the friends or family members supporting them understood their circumstances and struggles far better than a stranger ever could, and so were best placed to accurately help answer questions on their behalf. Those that were able to access formal support services generally had positive experiences, particularly when going through voluntary sector organisations, and there were a number who relied on family or friends but would have preferred to use a third party, without a personal connection. Those that accessed practical support through Citizens Advice or equivalent organisations felt they were critical in making the difference between completing an application or not.

Citizens Advice were bloody fantastic to be honest… they took a couple of days to write it all up… and my wife read through it.

(Male, 50-65, Move Differently)

In relation to the PIP2 form, participants highlighted the value of having someone complete this on their behalf, i.e. by sitting with them, reading out the questions on the form and then writing down their responses in the form. This practical support helped in a number of ways:

it reduced some of the cognitive burden, stress and overwhelm that applicants could feel in reviewing the form
it could help applicants to understand what information was required of them, as it enabled questions to be rephrased in language that was more likely to be understood
it provided applicants with confidence that they were understanding and responding to the questions appropriately
it could reduce the physical strain placed on people (where completing the form on paper) to write a relatively large quantity of text in response to questions posed and/or address a skills gap (when filling it in on a computer)

For those that wanted additional practical support, there were differences in preference as to whether this type of support would best be provided by a friend or family member (where there exists a trusted relationship), or by a third-party (who brought independence and expertise). For participants with more complex health conditions (either multiple intersecting conditions, or fluctuating conditions), or where conditions were less directly relatable to the questions in the PIP2 form (often referenced in relation to mental health), this support became more important in helping people to navigate the process. While face-to-face support was preferential, people were open to this being by phone or video-call.

It would be good to have a professional adviser to speak to, who knew what should be included in the form, and what not. They could also help you to do the physical writing if necessary. Would be good to have it through [Citizens Advice], or even through DWP.

(Female, Over 65, Move Differently)

To be put through something like this in the way that the process is done… I’d far rather talk to a human being and they make the notes… people get really dehumanising.

(Female, 25-49, Move Differently)

However, accessing practical support could be very difficult for applicants. It involved sharing intensely personal details of their life with other people, making some participants embarrassed (regardless of whether it was friends/family or other services) to the point of dismissing this as an option. The availability of formal support services was recognised as being very limited and often dependent on factors like location. In addition, many people were unaware these services existed beyond Citizens Advice, and people reported variable past experiences here due to perceived capacity issues. As a result, many applicants who would have benefitted from practical support, were unable to access it.

Meeting emotional support needs

In addressing the need for emotional support, applicants relied on their close friends and family or, to a lesser extent, professionals. As discussed, certain points along the process were felt to be particularly anxiety inducing, such as the assessment. This was particularly pronounced amongst those with mental health conditions, but it was by no means exclusive to them. Applicants wanted their chosen friends and family with them at these stages to provide emotional support. Some applicants that had access to designated professionals, such as a mental health nurse, relied on them to provide emotional support during anxiety-inducing stages of the process. Emotional support often overlapped with providing some practical support, such as the rephrasing of questions.

[My mental health nurse] was very supportive and wrote me a letter as well, and I had to ring him a few times because I was having a meltdown.

(Female, 25-49, Feel Differently)

Some applicants were unable to access emotional support related to PIP. This was because they did not have anyone they felt they could talk to, they felt too embarrassed to disclose their emotions, and they were unable to access (or unaware of) professional support services.

Some applicants spoke about wanting support during the assessment process (i.e. someone attending the assessment alongside them). This was typically spoken about in terms of providing them with additional confidence that they are accurately understanding and addressing the questions posed by an assessor. For some participants it was more explicitly around providing emotional support. This was mentioned most frequently by participants impacted by a mental health or developmental condition. Several participants also referenced that helpful support at this stage would include details of the type of questions that would be asked within the assessment being provided in advance.

For those participants who were at the stage of having received a decision they were unhappy with, there was a desire for detailed information (perhaps in the form of a leaflet) outlining the appeals process. Ideally this would be sent alongside the decision letter, providing access to advice and/or support independent of those directly involved in the assessment process. This support should include direction around what medical evidence should be provided in support of a claim, and what needs to be emphasised on any appeal documentation.

Meeting wider support needs

In addressing the need for wider support beyond the PIP process itself, applicants sought support from a wide range of informal and formal services, depending on their circumstance and life challenges. For example, some applicants were heavily reliant on family members or spouses to support their health, whether that be managing their medication or acting as an informal carer. Cancer patients sought support from charitable organisations such as Macmillan, who provide emotional support through treatment as well as financial and employment advice. Others relied on professionals such as social workers to help them manage the range of challenges they were experiencing in their life.

The key barrier to meeting their need for wider support was awareness of the wider support available. A common sentiment amongst applicants was a feeling of not knowing where to turn for support, often seeing PIP as a form of (financial) support that was tied to their health condition or disability, whereas they were looking for other additional forms of support (e.g. relationships, employment, managing their health conditions).

Where applicants were aware of the support services they wanted to access, there was often limited capacity within these organisations to offer them support in a timely manner. For example, applicants experiencing mental health conditions reported being on long waiting lists for professional mental health support. As a result of this lack of awareness, relatively few applicants who were not already in receipt of wider support explicitly talked of wanting to access it.

There were a few exceptions to this. One participant highlighted a desire for support to help them to manage their disability and the impact this was having on their daily life, including options for accessing support to get back into work.

To be honest with you I really don’t need this help [PIP]. I need to go back to my work. To be as before. Are you able to help me, to give me any help?

(Male, 50-65, Sense Differently)

Another participant highlighted the value in signposting to mental health support and how this would have been beneficial in between the PIP2 and assessment stage, given that the PIP2 can be quite triggering.

I would think signposting to somewhere like MIND should be built into the [PIP2] form that I filled in online.

(Male, 50-65, Move Differently)

4.3 Who should address applicant needs?

Participants were asked directly about who they would prefer to provide support services of the kind identified above. As mentioned above, there was a split in opinion here between those who felt that this could and should be provided by DWP, and those who wanted someone independent of DWP and the assessment process.

Some people were very sceptical and distrusting about the independence of support that might be offered by DWP, particularly those who had a nil award decision and disagreed with the assessor’s account of the assessment. Others highlighted how some people may have a fear of authority, and that engaging with officials from DWP is challenging when you lack confidence, which may be exacerbated by health conditions.

We (participant and her carer) have no trust in the DWP’s desire to help us.

(Female, 25-49, Move and Feel Differently)

I think it should be somebody independent to that department so they can’t be accused of tampering with things… they should offer you that when you first call up to apply.

(Female, 25-49, Move and Feel Differently)

However, many participants did feel that DWP should be in a position to offer a confidential support service for PIP applicants. In many ways this would be more trusted because it would be an authoritative source of information. This service would be expected to be staffed by non-clinical administrative staff (i.e. independent of HCPs undertaking assessments), and would help advise and support people in their application and in any appeals process. At a minimum this was expected to include signposting to relevant support services that could help with completing the PIP2 form and assessments, as well as details of what to expect at each stage (e.g. the questions they would be asked at assessment).

You’re going to give them permission to look at your medical files anyway. So, I wouldn’t have any concerns with DWP providing support with forms.

(Male, 50-65, Move Differently)

A number of applicants highlighted how important face-to-face support was, particularly in relation to providing health information (i.e. in the PIP2 form), and expected that this support could – in their opinion - be delivered relatively easily by DWP within a Jobcentre Plus setting.

Maybe they could open an office for people who are struggling [so they could] go in and speak to someone. I would prefer to go in person. It is just easier. Over the phone or online your phone might die, or you could lose connectivity.

(Male, 25-49, Move Differently)

Citizens Advice was mentioned as an example of the type of organisation that applicants might expect to provide this kind of support, though not everyone had had positive experiences in accessing their services, or in receiving a service that had met their expectations. Beyond Citizens Advice there was relatively limited awareness of other services or how these services might be accessed, though there was a natural affinity for services that were knowledgeable about their specific health condition or disability (e.g. arthritis, sight loss, ADHD). This could include health care professionals.

While some participants valued the independence and privacy offered by a charity or third party and would expect DWP to signpost to relevant support services, many were sceptical about the quality or reliability of voluntary sector support. This was often related to negative experiences of having attempted to access support in the past, and having been let down by services that were felt to be under-staffed or too ‘stretched’ to deliver the necessary support services.

Interviewees from voluntary organisations were also consulted on what they felt would make a difference to applicants here. One of the key points raised, which was widely seen to be the responsibility of DWP, was in relation to addressing the timescales for dealing with applications. The delays applicants experience at each stage in the process were highlighted as a central issue that DWP must address if seeking to improve the customer journey and increase trust in the system. Some areas were suggested in which DWP could address delays in the process:

increasing capacity in the system by recruiting more HCP assessors
increasing the number of applications that bypass the need for an assessment by making decisions based on the PIP2 application form and claimant evidence (where possible)
instituting auto-renewals or long-term awards on a case-by-case basis
increasing staffing on their helplines to shorten response times, especially at the first point of contact with the applicant (generally at the point of registering a claim)

Note that many of these suggestions from applicants and representatives of voluntary organisations would have resourcing and cost implications for DWP (or for voluntary service providers) which would need to be considered in determining their feasibility or appropriateness.

4.4 Barriers and facilitators to accessing support

While many participants were able to describe the kind of support that may be beneficial to offer people progressing a PIP application, they also highlighted quite a wide array of challenges that people may face in becoming aware of such support, or in engaging with it.

Lack of awareness of the PIP application process and available support

One of the first major barriers to accessing support is not knowing much about the PIP application and assessment process. While there is information online that provides further information, many of the applicants we spoke with were not reviewing this information, but rather just commencing their application with the understanding that it may result in their receiving a benefit. A common piece of feedback from applicants participating in this research was that they planned to go into the process and just ‘tell the truth’, so did not feel any preparation was necessary. The lack of familiarity with the process or consideration of what the process might involve means that it is often difficult for PIP applicants to know what support they might benefit from until they are either experiencing a need, or the need has passed.

They are going to need that support… I was fortunate to have somebody who’s applied for PIP before… to help me through it… but unless you’ve filled it out before, it’s designed for you to fail.

(Female, 25-49, Move and Feel Differently)

Related to this barrier of low awareness of the process for applying for PIP was low awareness of what support services exist. Most participants we spoke with were not in contact with any support services, often because they have managed their health condition or disability independently up to the point of application. This lack of awareness and familiarity with what support could be accessed meant that it often did not occur to applicants to seek support or consider where they might do so. When prompted as part of interviews, participants often talked about asking a family member who had some familiarity with the benefits system.

Support is not readily available and not readily known.

(Female, 25-49, Move Differently)

Applicants can struggle to admit to needing help (including to themselves)

Many people highlighted how asking for help was not something they had ever had to do before; it was not something they felt comfortable with or found easy to reconcile with their sense of identity. Again, for a number of participants, they were used to managing independently, and coming to terms with no longer being able to manage their health condition or disability was disempowering. This could be a major barrier to accessing external support, or in broaching the need for support with friends or family members, some of whom may not be aware of how an illness or disability was impacting them. Where someone is also socially isolated, this presents a key risk factor for their not accessing support.

It’s hard to ask for help in the first place, I’m a really independent person.

(Female, 25-49, Feel Differently)

I don’t want to sit there and beg for help.

(Female, 25-49, Sense Differently)

The embarrassment side of it is my biggest issue. I find it difficult to ask for help.

(Male, 50-65, Move Differently)

[The hardest part was] facing up to the fact that I had to swallow my pride.

(Male, 50-65, Feel Differently)

A number of participants reported heightened levels of social anxiety, which could severely limit the extent to which they would consider seeking support from an external source. This could be further compounded by embarrassment at their health condition or disability, or scepticism as to how they will be treated for more ‘invisible’ conditions.

People with invisible disabilities struggle more to access support because they won’t be believed.

(Male, 50-65, Think, Feel and Move Differently)

For a subset of participants, their disability or health condition could also present a barrier to seeking support. For example, a lack of mobility could present a challenge in visiting a service to get help with a PIP2 form, or sight loss could lead to challenges navigating websites to review information. Relatively recent onset disabilities or health conditions may be less well understood by those impacted as they are still adapting to the change themselves. For example, one participant interviewed in this research had lost his sight three months earlier due to a stroke and had little-to-no awareness of what support services existed. Low English literacy and, now, an inability to access the internet posed significant barriers to accessing support for managing his condition, housing or wider support needs.

A number of PIP applicants we spoke with highlighted that they were not comfortable going online, and/or did not have internet access. Without the option of using the internet to search for sources of support, these individuals had very little awareness of what support services might be available or how to access them. A similar access barrier existed for people with lower levels of literacy, or fluency in the English language, creating challenges in articulating need and/or sourcing support.

Applicants are positive about the potential support available

Citizens Advice, amongst other support services, was named by participants as a source of support. While there was some positive feedback on the support received from voluntary sector services, there were also challenges reported by participants that formed a barrier to receiving the support desired. One key barrier related to the capacity of organisations to deliver against the support promised. There was recognition that resources were stretched, but a number of participants highlighted instances where calls to helplines were never answered or where follow-on support never materialised. It was rare that participants reported continuing to pursue support from these same organisations in these instances, instead they tended to try and ‘make do’ on their own.

Participants acknowledged that the information provided by DWP on GOV.UK and in communications about their applications contained a contact number for requesting additional support. This was not something that any of the applicants participating in this research had used. While a minority highlighted a distrust of DWP (typically resulting from previous unsuccessful applications for PIP or other benefits), most participants were very positive about DWP either directly providing or signposting applicants to support. The desired support is covered in Section 4.2 above.

If they [DWP] issue the forms, they should provide the support as well.

(Female, 25-49, Move and Feel Differently)

Given the barriers that may exist for people becoming aware of support services at the point of need, facilitators to their access might involve more proactive outreach or communications from DWP at different stages of the process to signpost to them. Proactive outreach here from DWP would help to overcome the ‘lack of confidence’ challenge that many people face in instigating contact with a source of authority. This could involve support available from DWP, but might also include options for independent services, ensuring that applicants are aware of different options in case of capacity/resource issues.

4.5 Identifying applicants in need of additional support

Applicants in need of additional support sometimes have a Personal Acting Body (PAB) - such as an Appointee, a Deputy or someone with Power of Attorney – who are able to act on their behalf. However, there will also be applicants who are need of additional support that do not have a formal supporter acting on their behalf. DWP can identify applicants in need of additional support throughout an individual’s PIP claim journey. If the individual submits evidence to DWP that indicates that they have a severe mental health or behavioural condition, learning difficulty, developmental disorder or memory problems, then DWP can apply an AS Marker. As detailed in Section 3.1. there were no obvious patterns as to how the AS Marker had been applied within the sample for this research (i.e. based on presenting needs, as described and discussed with participants). There were also no observable differences within the sample in terms of presenting needs or in the processes by which participants with or without an AS Marker applied and were assessed for PIP. In our analysis of presenting needs it is important to highlight that there were individuals that are out of scope for an AS Marker that would still benefit from additional support. Further, additional support from DWP resulting from the application of an AS Marker may not be sufficient in meeting the needs of an applicant.

Applicants involved in this research were asked how DWP might best identify people who may benefit from additional support during their PIP application. A common response to this question was that DWP should capture support needs at the beginning of the PIP application process (i.e. on registering a claim).^{[footnote 21]} At this point, DWP could explicitly ask whether the applicant has any particular support or access needs (e.g. difficulties filling out forms, sight loss), or if they would like support in progressing their application. In addition, this could include probing on specific points that may indicate the potential need for additional support.

Obviously they should ask them [what support is needed].

(Male, 25-49, Move Differently)

Some participants were uncomfortable with DWP using proxy criteria (such as presence of a severe mental health or behavioural condition, learning difficulty, developmental disorder or memory problem) as a flag for higher vulnerability, or an increased likelihood of need for additional support.

Everybody who is applying for PIP is applying because they are going through some disability or difficulty. So, it’s like trying to find the most vulnerable amongst the vulnerable.

(Male, 25-49, Feel Differently)

Many participants therefore did identify a relatively common set of characteristics that may be associated with an increased need for support, typically to help people in progressing their PIP application. These included:

the disclosure of mental health conditions (notably anxiety), which were seen as having the potential to influence how people experienced the PIP process and communication preferences
the disclosure of learning difficulties (e.g. dyslexia), or a developmental condition (e.g. ADHD), which may influence the ability of someone to complete the PIP2 form
the disclosure of multiple intersecting conditions or chronic illnesses, where conditions are more likely to impact on someone’s capacity to manage a process which requires actions to be taken to set deadlines (e.g. a timeframe for completing the PIP2 form) or where capacity may be diminishing as a result of a condition
a lack of social support structures and relationships, as this may indicate the need for more formal support at the point at which the applicant has received their PIP2 form or is preparing for assessment
a lack of access or comfort using digital technologies, which may impact someone’s confidence and/or ability to complete the PIP2 form or their assessment online
first-time PIP applicants, who are likely to be less familiar with the PIP process and what support they may therefore require ahead of time

Discussions with voluntary sector organisations highlighted a few additional characteristics including:

recent immigrants who have not been in the country very long and may have less awareness of both PIP eligibility and available support services
applicants with communication difficulties whether due to their condition or a language barrier; this group would benefit from additional support (such as an interpreter, or supportive third party)
applicants from ethnic minority backgrounds may have previous experiences of discrimination when interacting with professionals/public services, leading to mistrust towards DWP and an expectation that they will not be listened to
people with sensory conditions who might be unable to access the existing communication channels and may need the DWP to offer alternative channels that suit them

Several applicants highlighted that the PIP process can feel like you are on a ‘conveyor belt’, with DWP staff and assessors going through a series of processes without fully engaging with the applicant in front of them as an individual. This is particularly the case at the point of registering a claim where some suggested it felt like engaging with a ‘robot’ reading from a script. An applicant may become more vulnerable and require additional support at any point in the process, so it was felt important to ensure that staff were trained and encouraged to identify needs, and act upon this information in signposting support. Asking for information about how a disability or health condition impacts an applicant at the point of registering a claim may help with this as an indication of potential support needs. Similarly, responses in the PIP2 application were felt to give a strong indication of support needs as indicated by the characteristics described above.

It’s about being more aware of the people they are dealing with. They’re on a conveyor belt…they come over as they look down at people and it’s just ‘next’! Talk to them as human beings.

(Male, 50-65, Feel Differently)

They should phone the person up and talk to them and they can tell them if they’ve got any issues.

(Male, 50-65, Move Differently)

Claimants voiced a desire for DWP to be more explicit on the website and accompanying guidance for PIP applications as to the range of support that is available to people. This would need to come with reassurances around confidentiality and independence, so that people know they can have open and honest conversations if needed.

Make it clearer on the website that they offer this… if you need this, not a problem, and if you need support, we have this option or this option.

(Female, 25-49, Move Differently)

A small number of participants also highlighted a desire for NHS England (via GPs and hospitals) to share information with DWP^{[footnote 22]}.

They should take more notice of what people’s doctors say – especially when the evidence is there in black and white.

(Male, 50-65, Move Differently)

Question 10

Discussion and implications

Accepted Answer

This research sought to understand the additional support needs that PIP applicants have, to determine the extent to which these needs were being met (or could be met) and the potential role for DWP in this. Although DWP offers a range of support for PIP applicants (listed in section 1.2), they are often unclear as to if, or how, DWP are assessing additional support needs or of what support may then be available to them.

While research participants provided some very clear examples of opportunities for DWP to address outstanding support needs, it is important to highlight that PIP applicants face a wide range of different challenges both in managing the PIP process and in their wider lives. In many cases, applicants are not themselves aware of their likely support needs or able to articulate these. This presents significant challenges for DWP in anticipating these needs or ensuring the take-up of support even where it is available.

Support needs are uniquely individual, influenced by 6 intersecting factors including:

the nature of someone’s health conditions or disabilities including: how they understand, relate to and manage this; the recency and/or fluctuations in conditions; and the impact that the condition (and any treatment) has on their energy, motivation, confidence and capability
people’s level of confidence in their understanding of their eligibility for PIP and their ability to articulate and advocate for themselves
people’s digital access, motivation and ability to look for information around both PIP and wider support services
people’s literacy and language capabilities, specifically their ability to understand text and questions sufficiently to prepare for PIP2 and assessment stages, and to respond accurately
access to formal and/or informal support structures, including friends and family members, and confidence in approaching professional services
the extent to which PIP is being relied on to help address presenting financial needs which relate to daily living and subsistence

Prior knowledge and awareness of PIP was also key in influencing support needs as this helped to set expectations; lower expectations were commonplace as prior awareness tended to come through direct or indirect experience of failed applications. Having limited prior knowledge and awareness of the PIP process can be a cause of anxiety, particularly for those with a mental health condition.

The PIP application process can trigger negative emotions and anxiety for applicants - there is a need for people to confront aspects of their lived experience which may relate to earlier trauma in their lives and be deeply upsetting and disempowering. Considering that the PIP application and assessment process may touch on sensitive subject matter DWP may want to consider how best to mitigate the risk of re-traumatisation. For example: through the use of trauma-informed language; content warnings; offering a choice of response formats; signposting support; and following-up in instances where applicants’ express distress.

Additional support needs relating to the PIP application process itself tended to revolve around a combination of informational, practical and emotional support needs. Whilst support needs can vary significantly at different stages of the application process, these are unified enough for some core universal principles and learnings to be applied, as well as specific implications for certain applicant sub- groups.

Applicants also had a wide range of needs beyond the PIP process itself such as support with coming to terms with / better managing a health condition and support to find appropriate employment or training opportunities. While PIP applicants may not see these wider needs as relevant to their PIP claim or DWP services, by identifying and helping address these (through signposting to specific information and/or support services) DWP could help create a situation where applicants are better able to manage their PIP claim journey.

As mentioned, DWP take steps to identify applicants that need additional support to engage with their application. It is important for additional support needs to be identified early in the process (e.g. at PIP1) in line with current procedure, by asking applicants directly about their support needs. DWP needs to ensure that all applicants are asked about additional support needs in a way that they understand what is being asked of them and its relevance to the application process (e.g. this could include highlighting common challenges in the application and assessment process). This should include detailing what additional support (or allowances) are then available to them. DWP should also provide a choice of application routes to applicants, including actively offering the option to complete it with the help of a third party; this would allow claimants to choose a channel which best meets their support needs.

This research identified a very real risk that many applicants who could benefit from support in applying do not identify themselves as requiring this support. A common view amongst applicants is that they will just ‘tell the truth’, and DWP will make their assessment. Only where they are then unsuccessful and see the decision letter do some applicants recognise that support in helping them complete their PIP2 form (e.g. to better address the criteria being assessed) would have been beneficial.

At the point of registering a claim (PIP1), there is a need for information on what questions will be asked (and by whom) to commence an application, and what the subsequent claim journey will look like (including estimated timescales). This information is widely available online which suggests that applicants are not accessing this material ^{[footnote 23]}. Participants may benefit from signposting to available informational support at this stage and should be asked explicitly whether they need any further support. Given the challenges that some people face in commencing a claim due to fear of authority and/or of being judged, publicising paper routes and/or offering digital routes^{[footnote 24]} for PIP1 as standard may be beneficial. There is an expectation from some applicants that this support should be provided by DWP at this stage.

At the stage of health information gathering (PIP2), there is a need for practical support for applicants to complete the PIP2 form. This support can help applicants to understand what questions are being asked of them and help applicants to respond. There is also a subset of applicants who are simply unable to complete the PIP2 form independently and who, without someone proactively managing this on their behalf, would not progress beyond registering a claim. DWP might want to consider offering pro-active support to applicants who are late in returning their PIP2 form, such as a follow up call to identify unmet support needs.

The digital route for completing PIP2 has the potential to improve the experience for some applicants, particularly if accessible via screen readers and speech recognition software. While a digital route was not preferable for some applicants due to access issues or confidence completing forms online, for others, it was found to offer greater convenience and efficiency than a paper form.

There is an expectation that informational support should be provided by DWP at the PIP2 stage in the form of signposting for those wanting independent (practical) support, or routes through which DWP can facilitate support to complete forms. This could be contained within the PIP2 written support information or signposted within the online form for those completing the PIP2 digitally.

At assessment, there may be a need for practical and/or emotional support (independent of support offered by DWP) for a smaller group of applicants. Practical support would help applicants who might struggle to understand the questions being asked at assessment and/or who may need someone to answer or advocate on their behalf. Emotional support may be more ‘behind the scenes’ and may involve having someone present who can offer reassurance (supporters may provide both practical and emotional support here). This tends to be most relevant for applicants who are anxious but feel capable of understanding the questions being asked and of representing themselves.

In most cases, applicants will be aware of their support needs at the assessment stage, though addressing these needs is dependent on the availability of formal or informal supporters. Whilst many applicants said they would not be comfortable with DWP providing practical support at the assessment stage, they would still value informational support. It may be helpful for DWP, in their communications around the process, to develop some materials that are designed for informal supporters (e.g. making them aware of the process and potential support needs that they may provide a role in filling).

At the stage of communicating the outcome, DWP should recognise that different applicants may respond in different ways to award outcomes – especially where the outcome results in a single component award or nil award. While some will engage with their outcome relatively quickly, others may not fully engage with the outcome due to a lack of capacity and energy at that point in time; it may take weeks or months for them to be able to do so. Still, others will want to challenge the decision if they view it as incorrect. Clarity from DWP on the options available and timeframe for MR and Appeals is important to applicants; research suggests information should come in the form of a letter or leaflet, but also with an accompanying telephone number to reach DWP to advise on (or initiate) the MR and Appeals process. Emphasising the decision criteria and importance of supporting evidence would help applicants to better prepare for a MR and appeal, as well as potentially signposting sources of additional advice and support.

Applicants that request a MR, or go on to appeal a decision, may be more cognisant of their support needs at this stage or have already sought additional support. From the perspective of applicants, support is most appropriately provided by someone independent of DWP at this stage, though some applicants may still benefit from being made aware of support services if not already accessing support.

It is important for DWP to provide support services earlier on in the journey to ensure that claimants get the right decision first time; this would help reduce the demand for MR and Appeals. For example, if claimant informational and practical support needs are met surrounding submitting evidence, Decision Makers may have a stronger evidence base on which to form their decisions, potentially resulting in reduced demand for MR and Appeals. Providing additional support earlier in the process could therefore help promote efficiency within the PIP decision making process.

At the point of award review (AR1) DWP should anticipate that all PIP claimants may benefit from informational, practical and emotional support. The award review is likely to come as a shock to many claimants and some fear losing their benefits. As people may be disconnected from sources of information, advice and guidance, DWP should ensure that claimants are aware of the support they can access from DWP and wider support services.

In conclusion, this research provides a detailed insight into the experiences of PIP applicants and their related support needs as they journey through their PIP claim. It highlights the common needs relating to informational, practical and emotional support, as well as wider needs that can impact their experiences of completing a PIP claim. By accounting for these common challenges, DWP can use these findings to improve both the existing additional support offer and PIP applicants’ awareness of what support is available.

Question 11

Appendix A

Accepted Answer

Appendix A: Topic guide for use with support services

Introduction - (0 to 5 minutes)

Thank you for agreeing to speak.

I work for Basis Social. We are an independent research agency who are undertaking this research on behalf of the Department for Work and Pensions.

The Health and Disability White Paper and the Health Transformation Programme both signal the Department’s commitment to improving the customer journey for PIP applicants. One core aspect of this is improving the support provided to their customers and this will be the focus of this interview.

We will be speaking with a number of voluntary sector organisations to help us understand your views toward the support needs of people applying for PIP that you provide services for. We would like to voice record this interview, with your consent. The recording itself will only be reviewed by a member of the research team, and should we use any illustrative quotes in our reporting these will be anonymized. No-one will be personally identified in anything we report on.

Can I check that we have your verbal consent to record?

Basis are a company partner of the Market Research Society (MRS) and abide by their code of conduct. Participation in this interview is completely voluntary and you are able to withdraw your consent to participate at any point in the process.

If client present: Finally, just to say that we have name here joining us from [DWP]. They are here as an observer and will not be taking part in the discussion.

Do you have any questions before we start?

Module 1: Understanding needs of clients receiving support in their PIP applications from voluntary sector organisations - (5 to 25 minutes)

Objective: to explore the range of needs clients have.

1. Help me to understand better the range of clients you assist with their PIP applications. Probe:

What are their day-to-day lives like?
Any common challenges/struggles (either directly related to their health condition/disability or not)?
Is there a “typical” profile of person that would seek support through [named organisation]?

2. Thinking about your client base, can you tell me what are the most common range of emotions that your clients are going through when you are supporting them in their PIP journey. Probe:

What factors do you think are contributing to those people you work with feeling this way?

3. What are the most common challenges your clients face during the PIP application process? Probe:

Challenges in completing application form (‘PIP2: How your disability affects you’)
Challenges in completing a PIP assessment
Challenges with Mandatory Reconsideration and/or Appeals
Without naming individuals, can you tell me about some of your clients that help to better illustrate these challenges? Explain that it often helps talking about specific cases rather than issues in more abstract terms, so encourage to talk about anonymized individuals they have worked with.

4. If not mentioned spontaneously above explain that previous research has suggested that some people can experience the following challenges, and we are interested in how relevant/applicable these are to their clients and what might influence these:

Motivation (i.e. having sufficient levels of motivation to see the application process through)
Interpretation (i.e. finding it difficult to understand what is being asked and how to respond)
Representation (i.e. not having someone they can turn to to support them in the process)
Digital access (i.e. struggling to complete applications online)

5. In your experience, how, if at all, does progressing through the PIP application and assessment process affect your clients? Are there parts of the process that are more challenging than others? Probe:

Focus on emotional and practical aspects

Module 2: Support provided - (25 to 35 minutes)

Objective: to understand the nature of the support provided by support services to PIP applicants.

6. What support do you offer to clients in completing the PIP application process? Probe:

Support in completing the application form
Support in completing a PIP assessment
Support in appealing decisions, mandatory reconsiderations and/or tribunals

7. When in the PIP application and assessment journey do you think that support needs are most pressing? (e.g. understanding eligibility, during application process, pre-assessment, during the assessment, post-outcome)

8. How does your organisation assist clients with different needs, like mental health or physical mobility issues?

9. Are there any support needs of clients that you find challenging to meet? If so, can you describe them? [Moderator to cross reference here support provided with support needs of clients to understand if any unmet needs] Probe:

Do you work with other support agencies to address these needs?

Module 3: Implications for DWP - (35 to 55 minutes)

Objective: to understand the role that DWP could/should play in supporting PIP applicants.

10. There is no set definition of vulnerable applicants used by DWP. Applicants with serious mental health, or cognitive conditions who have difficulty communicating or engaging with the process, are the types of people who might have an Additional Support Marker. What other factors do you think DWP should use to identify people that may need additional support in making a PIP claim? Probe:

What signs or characteristics should they be looking out for?

11. What support do you envisage that DWP currently provide to people that are identified as requiring additional support? If known, probe:

Do you have any concerns about the support currently provided by DWP? If so, what are these?

12. In an ideal world, what support should DWP provide to people that are identified as requiring additional support? Probe:

Are there any good/best practices from other areas or services that could be applied to the PIP process?
Should this be delivered by DWP or by another organization?
What are the benefits and drawbacks to DWP providing this support?
If you had to prioritise what support was provided by DWP, which do you think would have the greatest positive impact on the clients you work with?

13. What are some of the key barriers that exist for the types of clients you work with on PIP-related queries to accessing support (either that provided by your service or by others)? Probe:

How do you think these barriers can best be overcome?

14. Conversely, are there any factors that really help enable people’s access to support services?

Close

Is there anything else that I’ve not asked directly that you think would be useful to add before we finish the interview?
Thank and close
Explain that next steps are to use the insights gained from these interviews to inform our discussions with PIP applicants to understand more about the challenges they face and how support needs could best be met.

Question 12

Appendix B: Applicant sample breakdown

Accepted Answer

Table : Breakdowns of participant by main health condition and/or disability

Type of disability or access needs (participants could have co-occurring needs)	No. of participants
Long-term health condition, for example diabetes, multiple sclerosis, heart conditions, epilepsy, inflammatory bowel disease	13
Anxiety or depression	9
Mobility – restricted ambulation, balance challenges, lower limb loss, weakness	7
Other mental health condition	4
Chronic pain or chronic fatigue	4
Musculoskeletal – for example back or neck and shoulder	3
Other ‘neurodiverse’ conditions for example autism or ADHD	3
D/deaf or hearing loss	2
Mobility – wheelchair user	2
Memory challenges (for example, due to dementia or acquired brain injury)	2
Blind or vision loss	1
Dexterity – tremor, missing upper limb or hand, low grip strength or control	1

In screening, participants were categorised as thinking, feeling, sensing or moving differently depending on how they reported their health condition or disability made them experience the world. For example, someone with a condition that impacted their mobility who also experienced depression, would move and think/feel differently.

Question 13

Appendix C: Topic guide for use with PIP applicants

Accepted Answer

This Appendix includes the topic guide used for initial interviews with PIP applicants. Note that this topic guide was modular with different sections used with participants depending on where they were in their PIP journey. Questions covered in the follow up interviews were similar but focused more on changes to support accessed and/or needed as their claim journey progressed.

Introduction - (5 mins)

Thank you for agreeing to speak.

I work for Basis Social. We are an independent research agency who are undertaking this research on behalf of the Department for Work and Pensions.

We are speaking with 50 people who are in the process of applying for - or being assessed for Personal Independence Payment (also known as PIP). PIP is a benefit for customers with a long-term physical or mental health condition or disability, and difficulty doing certain everyday tasks or getting around. The intention of these interviews is to better understand people’s support needs so DWP can improve the support provided to their customers.

Your responses will be anonymised and treated confidentially. As mentioned, Basis Social is an independent research agency and we do not work within DWP. Your involvement in the research will not have any impact on your benefit claims or your dealings with the DWP, now or in the future. Please be as open and honest as you can. We welcome all views, positive, negative and anything in between.

I would like to audio record and take typed notes of the discussion today – this recording will also involve the conversation being transcribed on Teams. This is purely so we have an accurate record of what you tell us today. The notes and recording will be kept strictly to the Basis Social team. Any notes and recordings will be deleted at the end of the project. Are you okay with this?

Basis are a company partner of the Market Research Society (MRS) and abide by their code of conduct. Participation in this interview is completely voluntary and you can withdraw your consent to participate at any point in the process.

If client present: Finally, just to say that we have [name] here joining us from [DWP]. They are here as an observer and will not be taking part in the discussion. This includes during this discussion, or even afterwards.

Are you happy to continue with this interview on this basis? Confirm consent.

Do you have any questions before we start?

Module 1 - (3 to 8 minutes)

1. To start off, I would like to find out a little more about you and your life at the moment. How is life at the moment? Probe:

What does a typical day look like for you?
Are there any daily activities that you find a challenge to undertake? For example, completing forms, on paper or online?
Thanks, and I know it is a sensitive question, so please feel free to ask me to move on, do you have any challenges managing household finances right now?

2. [Interviewer to review screener for relevant health condition(s)] Could you tell me a little more about any health conditions or disabilities that impact you? How does your health condition/s impact your day-to-day life? For example, this might include their ability to plan a journey, to move around, to take care of themselves or others.

So I ask the right questions:

Can I check where you are in the PIP application process? As I understand it you have recently [Insert action based on recruitment schedule]. Interviewer to confirm with participant journey stage and chose between modules 2A to 2H
- Completed a ‘Making sure your award is right’ PIP (AR1) review form which is for people already in receipt of PIP – Module 2A
- Started a PIP claim by calling DWP or completing a PIP1 paper form which asks for basic information about you and bank details – Module 2B
- Completed the ‘’How your disability affects you’ (PIP2) form which goes into detail about the impact of different health conditions and disabilities – Module 2 C
- Assessment (including those Failing To Attend) which could be by telephone, in person or online – Module 2D1 or 2D2
- Decision (including nil award or single component award) – Module 2E
- Requested Mandatory Reconsideration from DWP – Module 2F
- Appeal process, which could be awaiting tribunal date or completed – Module 2G or 2H
Can I check if you have an appointee [Note that appointees are responsible for making and maintaining benefit claims]?

Module 2A [AR1]: Expectations, experiences and support needs

Objective: to understand people’s most recent PIP journey experience, support needs and how these needs could best be addressed.

3. (8 to 15 minutes) I understand you have recently completed the PIP review form (which DWP use to check if the level of PIP previously given still applies now). Tell me, how did you find that process? Probe:

Have you had to complete one of these forms before?
Was it what you were expecting?
Overall, did you find it easy or difficult? Moderator please use screener (Q5) responses to probe on challenges experienced around:
- Language
- Accessibility of formats
- Digital access or confidence

4. Thank you. I’d just like to explore this in a little more detail now. Talk me through how you managed the process of completing your PIP review form. It might be helpful to start at the point you received the form. What was going on in your life at that time? Can you remember what you did after receiving the form? Moderator to explore:

Feelings experienced
Understanding of why they received the form [Note that AR1s often completed when an application reports a change in circumstances]
Understanding, confidence and motivation in completing the review form
Process of completing and returning the form (including challenges experienced, e.g. issues with the form itself, issues providing supporting evidence)
Support needs, including any formal or informal support accessed. Note these may relate to completing the form (see also screener Q5 responses) or wider challenges faced in life.
Outstanding questions or unmet needs

5. (15 to 20 minutes) If support mentioned at Q4. Can you tell me more about the support you received in completing your PIP review form? Probe:

Who provided this?
How did you find/access/request this support? Or were you offered the support?
What was your experience of the support? Did it meet your needs?
Did you have any needs that were not met? If so, what did you do next?

6. (20 to 25 minutes) In an ideal world, what support (if any) would have helped you in completing the PIP review form? Probe:

When and how would you have liked this support to be made available?
How would you anticipate hearing about this support?
Who would you want to provide this support? (clarify specific organisation, if mentioned)
Would you have any concerns about DWP providing this support? If so, why, and is there anything that could be done to address those concerns?
Would you have any concerns about accessing this support from another organisation, such as a charity? If so, why? Are there any organisations you would think to look to for this support?

7. Reflecting on your own experience, what are some of the challenges that people who are applying for PIP may face in accessing support? Probe:

Examples might include: digital access, confidence, language or literacy barriers, embarrassment, not knowing where to go etc.
How might these challenges be overcome?

8. (25 to 30 minutes) Noting that your experience of originally applying may have been some time ago, in your experience, what parts of the overall PIP application and assessment process did you find most challenging to complete (e.g. understanding eligibility, during application process, pre-assessment, during the assessment, post-outcome)? Probe:

Why was this aspect most challenging? Was there anything else in your life going on at the time that contributed toward this experience?
What support could or should be offered to people who are going through the same experience as you?

9. What factors do you think DWP should use to identify people that may need additional support in making a PIP claim? Probe:

What signs or characteristics should they be looking out for? For example, those in severe financial need, literacy or language barriers, people that have started and dropped out of the application process previously.

10. If you were asked to complete your PIP review form online, rather than on paper, would you encounter any difficulties or concerns in doing this? Probe:

What support, if any, might help you in completing this online (e.g. telephone support line / additional guidance, support from a third party / friend or relative)?
Would this support fully address any concerns/needs you have?
Do you have access to a smartphone/tablet/computer that would enable you to complete the PIP form online? Would you need support to access a device?

11. Is there anything else that I’ve not asked that you would like to add before we finish the interview?

Thank and close. Explain processing of incentives. Explain that we would like to keep in touch and to potentially speak to them again once they have been through the next stage of their application journey (e.g. receiving an outcome notification). Confirm whether they would be prepared to speak to us again and explain that we will reach out to check on the progress of their application and then to schedule another interview at a convenient time.

Module 2B [PIP1]: Expectations, experiences and support needs

Objective: to understand people’s most recent PIP journey experience, support needs and how these needs could best be addressed.

1. (8 to 15 minutes) I understand you have recently completed the PIP application form (which is the first stage of the PIP application process). Tell me, how did you find that process of completing the form? Probe:

Have you had to complete one of these forms before? [Moderator note they may have applied and received a nil award before, or started and not completed an application]
Was it what you were expecting?
Overall, did you find it easy or difficult? Moderator please use screener (Q5) responses to probe on challenges experienced around:
Language
Accessibility of formats
Digital access or confidence

2. Thank you. I’d just like to explore this in a little more detail now. Talk me through how you managed the process of completing your PIP application form. It might be helpful to start at the point you received the form. What was going on in your life at that time? Can you remember what you did next on receiving the form? Moderator to explore:

Feelings experienced
Understanding, confidence and motivation in completing the application form
Process of completing and returning the form (including challenges experienced, e.g. issues with the form itself, issues providing supporting evidence, the timeframe for returns)
Support needs, including any formal or informal support accessed. Note these may relate to completing the form (see also screener Q5 responses) or wider challenges faced in life.
Outstanding questions or unmet needs

3. (15 to 22 minutes) If support mentioned at Q4. Can you tell me more about the support you received in completing your PIP application form? Probe:

Who provided this?
How did you find/access/request this support? Or were you offered the support?
What was your experience of the support? Did it meet your needs?
Did you have any needs that were not met? If so, what did you do next?

4. (22 to 30 minutes) In an ideal world, what support (if any) would have helped you in completing the PIP application form? Probe:

When and how would you have liked this support to be made available?
How would you anticipate hearing about this support?
Who would you want to provide this support? (clarify specific organisation, if mentioned)
- Would you have any concerns about DWP providing this support? If so, why, and is there anything that could be done to address those concerns?
- Would you have any concerns about accessing this support from another organisation, such as a charity? If so, why? Are there any organisations you would think to look to for this support?

5. Reflecting on your own experience, what are some of the challenges that people who are applying for PIP may face in accessing support? Probe:

Examples might include: digital access, confidence, language or literacy barriers, embarrassment, not knowing where to go etc.
How might these challenges be overcome?

6. What factors do you think DWP should use to identify people that may need additional support in making a PIP claim? Probe:

What signs or characteristics should they be looking out for?

7. If you were asked to complete your PIP application form online, rather than by calling up or by post, would you encounter any difficulties or concerns in doing this? [Moderator note that a small number of people may have experienced this already. In which case ask about challenges.] Probe:

What support, if any, might help you in completing this online (e.g. telephone support line / additional guidance, support from a third party / friend or relative)?
Would this support fully address any concerns/needs you have?
Do you have access to a smartphone/tablet/computer that would enable you to complete the PIP form online? Would you need support to access a device?

8. Is there anything else that I’ve not asked that you would like to add before we finish the interview?

Thank and close. Explain processing of incentives. Explain that we would like to keep in touch and to potentially speak to them again once they have been through the next stage of their application journey (e.g. being invited to an assessment). Confirm whether they would be prepared to speak to us again and explain that we will reach out to check on the progress of their application and then to schedule another interview at a convenient time.

Module 2C [PIP2]: Expectations, experiences and support needs

Objective: to understand people’s most recent PIP journey experience, support needs and how these needs could best be addressed.

1. (8 to 15 minutes) I understand you have recently completed the PIP2 application form (the ‘How your disability affects you form’). Tell me, how did you find that process of completing the form? Probe:

Have you had to complete one of these forms before? [Moderator note they may have applied and received a nil award before, or started and not completed an application]
Was it what you were expecting?
Overall, did you find it easy or difficult? Moderator please use screener (Q5) responses to probe on challenges experienced around:
- Language
- Accessibility of formats
- Digital access or confidence

2. Thank you. I’d just like to explore this in a little more detail now. Talk me through how you managed the process of completing your PIP2 application form. It might be helpful to start at the point you received the form. What was going on in your life at that time? Can you remember what you did next on receiving the form? Moderator to explore:

feelings experienced
understanding, confidence and motivation in completing the application form
process of completing and returning the form (including challenges experienced, e.g. issues with the form itself, issues providing supporting evidence, the timeframe for returns)
support needs, including any formal or informal support accessed. Note these may relate to completing the form (see also screener Q5 responses) or wider challenges faced in life.
outstanding questions or unmet needs

3. (15 to 22 minutes) If support mentioned at Q4. Can you tell me more about the support you received in completing your PIP2 application form? Probe:

Who provided this?
How did you find/access/request this support? Or were you offered the support?
What was your experience of the support? Did it meet your needs?
Did you have any needs that were not met? If so, what did you do next?

4. In an ideal world, what support (if any) would have helped you in completing the PIP2 application form? Probe:

When and how would you have liked this support to be made available?
How would you anticipate hearing about this support?
Who would you want to provide this support? (clarify specific organisation, if mentioned)
- Would you have any concerns about DWP providing this support? If so, why, and is there anything that could be done to address those concerns?
- Would you have any concerns about accessing this support from another organisation, such as a charity? If so, why? Are there any organisations you would think to look to for this support?

5. (22 to 30 minutes) Reflecting on your own experience, what are some of the challenges that people who are applying for PIP may face in accessing support? Probe:

Examples might include: digital access, confidence, language or literacy barriers, embarrassment, not knowing where to go etc.
How might these challenges be overcome?

6. What factors do you think DWP should use to identify people that may need additional support in making a PIP claim? Probe:

What signs or characteristics should they be looking out for?

*. If you were asked to complete your PIP2 application form online, rather than on paper, would you encounter any difficulties or concerns in doing this? [Moderator note that a small number of people may have experienced this already. In which case ask about challenges.] Probe:

What support, if any, might help you in completing this online (e.g. telephone support line / additional guidance, support from a third party / friend or relative)?
Would this support fully address any concerns/needs you have?
Do you have access to a smartphone/tablet/computer that would enable you to complete the PIP form online? Would you need support to access a device?

8. Is there anything else that I’ve not asked that you would like to add before we finish the interview?

Thank and close. Explain processing of incentives. Explain that we would like to keep in touch and to potentially speak to them again once they have been through the next stage of their application journey (e.g. being invited to an assessment). Confirm whether they would be prepared to speak to us again and explain that we will reach out to check on the progress of their application and then to schedule another interview at a convenient time.

Module 2D1 [Attended assessment]: Expectations, experiences and support needs

Objective: to understand people’s most recent PIP journey experience, support needs and how these needs could best be addressed.

1. (8 to 18 minutes) I understand you have recently had your PIP assessment. Tell me, how did you feel it went? Probe:

Was it held online, by telephone, or face-to-face? And how did you feel about that [mode]?
Have you had one of these assessments before? [Moderator note they may have applied and received a nil aware before]
Was it what you were expecting?
Overall, did you find it an easy or difficult process? Moderator please use screener (Q5) responses to probe on challenges experienced around:
- Language
- Digital access or confidence

2. (18 to 25 minutes) Thank you. I’d just like to explore your experience in a little more detail now. Talk me through how you approached the assessment. It might be helpful to start at the point you received notification of the assessment date. What was going on in your life at that time? Can you remember what you did next on receiving the letter? Moderator to explore:

Feelings experienced
Actions taken to prepare for the assessment
Whether attempted to change mode of assessment and reasoning for this
Understanding, confidence and motivation going into the assessment
Experience of the assessment and interactions with the assessor (including challenges experienced, e.g. issues relating to the assessment format or assessor, issues providing supporting evidence, issues understanding the questions asked or communicating responses)
Any challenges in depicting how their health condition/disability affects them on a daily basis (including for fluctuating conditions)
Support needs, including any formal or informal support accessed. Note these support needs may relate to preparing for the assessment or undertaking the assessment itself
Outstanding questions or unmet needs

3. If support mentioned at Q4. Can you tell me more about the support you received in preparing for (or in the conduct of) your PIP assessment? Probe:

Who provided this?
How did you find/access/request this support? Or were you offered the support?
What was your experience of the support? Did it meet your needs?
Did you have any needs that were not met? If so, what did you do next?

4. (25 to 30 minutes) In an ideal world, what support (if any) would have helped you in the PIP assessment process? Probe:

When and how would you have liked this support to be made available? I.e. before and/or during the assessment
How would you anticipate hearing about this support?
Who would you want to provide this support? (clarify specific organisation, if mentioned)
- Would you have any concerns about DWP providing this support? If so, why, and is there anything that could be done to address those concerns?
- Would you have any concerns about accessing this support from another organisation, such as a charity? If so, why? Are there any organisations you would think to look to for this support?

5. Reflecting on your own experience, what are some of the challenges that people who are applying for PIP may face in accessing support? Probe:

Examples might include: digital access, confidence, language or literacy barriers, embarrassment, not knowing where to go etc.
How might these challenges be overcome?

6. What factors do you think DWP should use to identify people that may need additional support in making a PIP claim? Probe:

What signs or characteristics should they be looking out for?

7. Is there anything else that I’ve not asked that you would like to add before we finish the interview?

Thanks and close. Explain processing of incentives. Explain that we would like to keep in touch and to potentially speak to them again once they have been through the next stage of their application journey (e.g. receiving an outcome). Confirm whether they would be prepared to speak to us again and explain that we will reach out to check on the progress of their application and then to schedule another interview at a convenient time.

Module 2D2 [Failed to attend assessment]: Expectations, experiences and support needs

Objective: to understand people’s most recent PIP journey experience, support needs and how these needs could best be addressed.

1. (8 to 18 minutes) I understand you were recently invited to attend a PIP assessment but didn’t end up having that assessment. Can you tell me a little more about why that was the case? Probe:

Did you attempt to reschedule this appointment at all? Either beforehand or afterwards?
If so, how did you find that process?
If not, why not? Was there anything that might have helped you in rescheduling?

2. Thank you. I’d just like to explore your experience in a little more detail now. It might be helpful to start at the point you received notification of the assessment date. What was going on in your life at that time? Can you remember what you did next on receiving the letter? Moderator to explore:

Feelings experienced
Actions taken to prepare for the assessment, e.g. who they spoke to and what about
Understanding, confidence and motivation going into the assessment
Expectations and/or concerns. Note that it would be helpful to understand if any concerns around form of assessment (e.g. online, face-to-face) and how these relate to challenges flagged on Screener Q5.
Barriers to attendance
Support needs, including any formal or informal support accessed. Note these support needs may relate to preparing for the assessment or undertaking the assessment itself
Outstanding questions or unmet needs

3. (18 to 25 minutes) If support mentioned at Q4. Can you tell me more about the support you received in preparing for your PIP assessment? Probe:

Who provided this?
How did you find/access/request this support? Or were you offered the support?
What was your experience of the support? Did it meet your needs?
Did you have any needs that were not met? If so, what did you do next?

4. (25 to 30 minutes) In an ideal world, what support (if any) would have helped you to have prepared for and taken part in the PIP assessment process? Probe:

When and how would you have liked this support to be made available? I.e. before and/or during the assessment
How would you anticipate hearing about this support?
Who would you want to provide this support? (clarify specific organisation, if mentioned)
- Would you have any concerns about DWP providing this support? If so, why, and is there anything that could be done to address those concerns?
- Would you have any concerns about accessing this support from another organisation, such as a charity? If so, why? Are there any organisations you would think to look to for this support?

5. Reflecting on your own experience, what are some of the challenges that people who are applying for PIP may face in accessing support? Probe:

Examples might include: digital access, confidence, language or literacy barriers, embarrassment, not knowing where to go etc.
How might these challenges be overcome?

6. What factors do you think DWP should use to identify people that may need additional support in making a PIP claim? Probe:

What signs or characteristics should they be looking out for?

7. Is there anything else that I’ve not asked that you would like to add before we finish the interview?

Thank and close. Explain processing of incentives. Explain that we would like to keep in touch and to potentially speak to them again should they look to restart their application.

Module 2E [Decision]: Expectations, experiences and support needs

Objective: to understand people’s most recent PIP journey experience, support needs and how these needs could best be addressed.

1. (8 to 15 minutes) I understand you have recently been notified about DWPs decision regarding your PIP application. Can you tell me what was the decision? Probe:

If you received an award, was it a standard award or an enhanced award? And for mobility and/or daily living components?
Have they applied for PIP before? [Moderator note they may have applied and received a nil award before]
Was it what you were expecting? How did you feel about this?

2. Thank you. I’d just like to explore this in a little more detail now. Talk to me about the point at which you received the outcome letter. What was going on in your life at that time? Can you remember what you did next having opened the letter? Moderator to explore:

Feelings experienced
Understanding of the outcome and content of the letter, including the scoring applied. Note any language/literacy issues from screener Q5 response.
Understanding of what happens next in the context of an Award or of what options are for challenging a PIP decision with DWP
Understanding of (and views toward) mandatory reconsideration process
Support needs, including any formal or informal support accessed. Note these support needs may relate to understanding the outcome or in challenging a PIP decision
Outstanding questions or unmet needs

3. (15 to 22 minutes) If support mentioned at Q4. Can you tell me more about the support you received in completing your PIP application form? Probe:

Who provided this?
How did you find/access/request this support?
What was your experience of the support? Did it meet your needs?
Did you have any needs that were not met? If so, what did you do next?

4. (22 to 30 minutes) In an ideal world, what support (if any) do you think would be helpful to you at this part of the process? Probe:

How would you anticipate hearing about this support?
Who would you want to provide this support? (clarify specific organisation, if mentioned)
- Would you have any concerns about DWP providing this support? If so, why, and is there anything that could be done to address those concerns?
- Would you have any concerns about accessing this support from another organisation, such as a charity? If so, why? Are there any organisations you would think to look to for this support?

5. In your experience, what parts of the overall PIP application and assessment process did you find most challenging to complete (e.g. understanding eligibility, during application process, pre-assessment, during the assessment, post-outcome)? Probe:

Why was this aspect most challenging? Was there anything else in your life going on at the time that contributed toward this experience?
What support could or should be offered to people who are going through the same experience as you?

6. Reflecting on your own experience, what are some of the challenges that people who are applying for PIP may face in accessing support? Probe:

Examples might include: digital access, confidence, language or literacy barriers, embarrassment, not knowing where to go etc.
How might these challenges be overcome?

7. What factors do you think DWP should use to identify people that may need additional support in making a PIP claim? Probe:

What signs or characteristics should they be looking out for?

8. Is there anything else that I’ve not asked that you would like to add before we finish the interview?

Thank and close. Explain processing of incentives. Explain that we would like to keep in touch and to potentially speak to them again should they decide to challenge their outcome.

Module 2F [Mandatory reconsideration]: Expectations, experiences and support needs

Objective: to understand people’s most recent PIP journey experience, support needs and how these needs could best be addressed.

1. (8 to 18 minutes) I understand you have recently been through a mandatory reconsideration process in respect of a PIP application. Tell me, how did you find that process? Probe:

Was it what you were expecting?
Overall, did you find the mandatory reconsideration process easy or difficult? Moderator please use screener (Q5) responses to probe on challenges experienced around:
- Language
- Accessibility of formats
- Digital access or confidence

2. Thank you. I’d just like to explore this in a little more detail now. Talk me through how you managed the process of requesting a mandatory reconsideration. It might be helpful to start at the point you received your decision letter. Can you remember when and how you decided you were going to request a mandatory reconsideration? What happened next?

Moderator to explore:

Feelings experienced
Reason for applying for a mandatory reconsideration
Understanding, confidence and motivation in challenging decision, including clarity of options
Process of completing and returning the mandatory consideration form (including challenges experienced, e.g. issues with the form itself, challenges providing reasons, issues providing supporting evidence, the timeframe for returns) [Moderator note that people may have called, written a letter to DWP or used their UC journal rather than complete the form - please tailor questions accordingly]
Support needs, including any formal or informal support accessed. Note these may relate to completing the form (see also screener Q5 responses), submitting additional information, or wider challenges facing in life.
Outstanding questions or unmet needs

3. (18 to 25 minutes) If support mentioned at Q4. Can you tell me more about the support you received in requesting a mandatory reconsideration? Probe:

Who provided this?
How did you find/access/request this support?
What was your experience of the support? Did it meet your needs?
Did you have any needs that were not met? If so, what did you do next?

4. (25 to 30 minutes) In an ideal world, what support (if any) would have helped you in completing the PIP MR form? Probe:

*When and how would you have liked this support to be made available?

How would you anticipate hearing about this support?
Who would you want to provide this support? (clarify specific organisation, if mentioned)
- Would you have any concerns about DWP providing this support? If so, why, and is there anything that could be done to address those concerns?
- Would you have any concerns about accessing this support from another organisation, such as a charity? If so, why? Are there any organisations you would think to look to for this support?

5. Reflecting on your own experience, what are some of the challenges that people who are applying for PIP may face in accessing support? Probe:

Examples might include: digital access, confidence, language or literacy barriers, embarrassment, not knowing where to go etc.
How might these challenges be overcome?

6. What factors do you think DWP should use to identify people that may need additional support in challenging a PIP claim? Probe:

What signs or characteristics should they be looking out for?

7. Is there anything else that I’ve not asked that you would like to add before we finish the interview?

Thanks and close. Explain processing of incentives.

Module 2G [Appeal/Awaiting tribunal]: Expectations, experiences and support needs

Objective: to understand people’s most recent PIP journey experience, support needs and how these needs could best be addressed.

1. (8 to 18 minutes) I understand you have started the Appeals process in respect of your PIP application. Tell me, how have you found the process so far? Probe:

Was it what you were expecting?
Overall, did you find it easy or difficult to start the appeal? Moderator please use screener (Q5) responses to probe on challenges experienced around:
- Language
- Accessibility of formats
- Digital access or confidence

2. Thank you. I’d just like to explore this in a little more detail now. Talk me through how you managed the process of appealing DWPs decision on your PIP application. It might be helpful to start at the point you received the decision around your mandatory reconsideration. What was going on in your life at that time? Can you remember what you did next on receiving the mandatory reconsideration decision letter?

Moderator to explore:

Feelings experienced
Reason for appealing
Understanding, confidence and motivation in challenging decision and appealing to tribunal, including clarity of options
Process of completing and returning the appeal form (including challenges experienced, e.g. issues with the form itself, issues appealing online, the timeframe for appeals)
Support needs, including any formal or informal support accessed. Note these may relate to completing the form (see also screener Q5 responses), submitting additional information or wider challenges facing in life. Note also that participant may have a formal representative helping with appeal.
Outstanding questions or unmet needs

3. (18 to 25 minutes) If support mentioned at Q4. Can you tell me more about the support you received in completing your appeal form? Probe:

Who provided this? Are they your formal representative?
How did you find/access/request this support?
What was your experience of the support? Did it meet your needs?
Did you have any needs that were not met? If so, what did you do next?

4. In an ideal world, what support (if any) would have helped you in completing the appeals form? Probe:

When and how would you have liked this support to be made available?
How would you anticipate hearing about this support?
Who would you want to provide this support? (clarify specific organisation, if mentioned)
- Would you have any concerns about accessing this support from another organisation, such as a charity? If so, why? Are there any organisations you would think to look to for this support?
What role, if any, would you expect DWP to play at this stage in terms of either providing support or signposting you to support in regards to the appeals process?

5. (25 to 30 minutes) Reflecting on your own experience, what are some of the challenges that people who are applying for PIP may face in accessing support? Probe:

Examples might include: digital access, confidence, language or literacy barriers, embarrassment, not knowing where to go etc.
How might these challenges be overcome?

6. What factors do you think DWP should use to identify people that may need additional support in challenging a PIP decision? Probe:

What signs or characteristics should they be looking out for?

7. Is there anything else that I’ve not asked that you would like to add before we finish the interview?

Thank and close. Explain processing of incentives.

Module 2H [Appeal/Completed tribunal hearing]: Expectations, experiences and support needs

Objective: to understand people’s most recent PIP journey experience, support needs and how these needs could best be addressed.

1. (8 to 18 minutes) I understand you have recently been through the Appeals process in respect of your PIP application. Can you tell me what was the decision? Tell me, how did you find that process? Probe:

If you received an award, was it a standard award or an enhanced award? And for mobility and/or daily living components?
Did you attend a tribunal hearing?
Was it what you were expecting? How do you feel about this?
Overall, did you find the appeals tribunal process easy or difficult? Moderator please use screener (Q5) responses to probe on challenges experienced around:
- Language
- Digital access or confidence

2. Thank you. I’d just like to explore this in a little more detail now. Talk me through how you managed the process of appealing DWPs decision on your PIP application. It might be helpful to start at the point you decided to appeal to a tribunal. What was going on in your life at that time? Can you remember what you did next on receiving the mandatory reconsideration decision letter? Moderator to explore:

Feelings experienced
Reason for appealing
Understanding, confidence and motivation in challenging decision and appealing to tribunal, including clarity of options
Process of completing and returning the appeal form (including challenges experienced, e.g. issues with the form itself, issues appealing online, the timeframe for appeals)
Experience of the tribunal and outcome notification
Process of preparing for the tribunal, including whether challenged a provisional judgement by judge following review of documents
Support needs, including any formal or informal support accessed. Note these may relate to completing the form (see also screener Q5 responses), submitting additional information or wider challenges facing in life. Note also that participant may have a formal representative helping with appeal.
Outstanding questions or unmet needs

3. (18 to 25 minutes) If support mentioned at Q4. Can you tell me more about the support you received in (i) completing your appeal form or (ii) attending the tribunal? Probe:

Who provided this? Did you have a formal representative?
How did you find/access/request this support?
What was your experience of the support? Did it meet your needs?
Did you have any needs that were not met? If so, what did you do next?

4. (25 to 30 minutes) In an ideal world, what support (if any) would have helped you during the appeals process? Probe:

When and how would you have liked this support to be made available?
How would you anticipate hearing about this support?
Who would you want to provide this support? (clarify specific organisation, if mentioned)
- Would you have any concerns about accessing this support from another organisation, such as a charity? If so, why? Are there any organisations you would think to look to for this support?
What role, if any, would you expect DWP to play at this stage in terms of either providing support or signposting you to support in regards to the appeals process?

5. Reflecting on your own experience, what are some of the challenges that people who are applying for PIP may face in accessing support?

Probe:

Examples might include: digital access, confidence, language or literacy barriers, embarrassment, not knowing where to go etc.
How might these challenges be overcome?

6. What factors do you think DWP should use to identify people that may need additional support in challenging a PIP decision? Probe:

What signs or characteristics should they be looking out for?

7. Is there anything else that I’ve not asked that you would like to add before we finish the interview?

Thanks and close. Explain processing of incentives.

The PIP claim ‘journey’ covers the following broad stages: 1) Registering a claim (PIP1): where applicants start their claim, typically by calling DWP, or alternatively by completing a PIP1 paper form. 2) Health information gathering (PIP2): where applicants complete the ‘How your disability affects you’ (PIP2) form which goes into detail about the impact of their health conditions or disabilities. 3) Assessment: where applicants meet with a Health Care Professional (HCP) assessor and discuss the impact of their health conditions or disabilities. 4) Decision: where applicants are told via letter whether their claim has been successful or not and, if successful, which components and rate they will receive. 5) Mandatory Reconsideration: where applicants unhappy with the outcome of their claim can ask DWP to reconsider their application. 6) Appeal: where applicants unhappy with the outcome of their mandatory reconsideration can appeal, potentially taking their case to a tribunal. 7) AR1 Review: where claimants already in receipt of PIP complete a ‘Making sure your award is right’ AR1 review form. ↩
Applicants with serious mental health, or cognitive conditions who have difficulty communicating or engaging with the PIP claim process, are allocated an Additional Support marker. This marker is usually allocated at PIP1 but can be added at any point of the PIP process. ↩
DWP (2024) Personal Independence Payment: Official Statistics to April 2024. Accessed at: https://www.gov.uk/government/statistics/personal-independence-payment-statistics-to-april-2024/personal-independence-payment-official-statistics-to-april-2024#about-these-statistics ↩
The role of the Disability Services Advocacy Team is to provide awareness, share knowledge and upskill on Disability Services benefits/grants (Personal Independence Payment (PIP), Disability Living Allowance (DLA), Industrial Injuries Disablement Benefit (IIDB) and Access to Work (AtW)), and to work with internal and external stakeholders to build relationships. ↩
It is worth noting that hard quotas were challenging to meet for several reasons: (i) people move through the PIP claim journey at different speeds, such that some people may be recruited while at one stage and by the time of the interview have progressed (e.g. completed PIP2 or received decision letter); and (ii) the journey stage marked in the DWP-provided sample sometimes covered more than one journey stage as defined in this project, e.g. where people are categorised as Assessment this could mean that they have either been scheduled for an assessment (in which case they were interviewed as PIP2) or that they had had their assessment and were awaiting a decision (interviewed as Assessment). ↩
Claimants with serious mental health, or cognitive conditions who have difficulty communicating or engaging with the process, are allocated an Additional Support Marker at PIP1. ↩
Open Inclusion is a disability and age-inclusive research, design and innovation organisation who work in partnership with Basis Social on the design and delivery of research projects. ↩
Note that these do not add up to 52, as participants may have reported multiple overlapping health conditions or disabilities. ↩
For instance, participants who had received a decision that they accepted. ↩
Ritchie, J., Lewis, J., Nichols, C.M. and Ormston, R. (2014). Qualitative Research in Practice. Sage: London. (2nd Edition). ↩
It is important to note that qualitative research is designed to be illustrative, detailed, and exploratory. It offers insights into the perceptions, feelings, and behaviours of people rather than quantifiable conclusions from a statistically representative sample. ↩
Claimants in select postcodes have the option to fill out the PIP1 form online via Digital Self-Serve. ↩
It is also important to note that any who may have been put off initiating a PIP claim and/or did not have the support required for them to do so are, by definition, excluded from our sample. ↩
DWP recognises that in some cases, applicants may not be able to engage effectively with the claims process. Applicants who have an AS marker are provided with additional support during the claims process if they need it. This support includes help filling in the form or the questionnaire if needed and additional protections for failing to return the questionnaire or for failing to attend a face-to-face assessment. Claimants identified as having AS needs who don’t: 1) respond to a reassessment invite will be contacted by a case worker or visiting officer to complete a PIP1. 2) Return the PIP2 won’t be disallowed automatically, but will be referred to the AP for an assessment. 3) Attend an assessment, will be contacted to find out the reasons for not attending before a good reason decision is made. ↩
It is important to note that any individual can apply for an extension when completing the PIP2 form. ↩
Eligibility criteria differs between benefits. Although the possibility of claiming other benefits might be limited, some claimants may be unaware of their potential entitlement for alternatives (e.g. Universal Credit). ↩
Award reviews ensure claimants receive the correct level of entitlement where needs may have changed. People who receive the highest level of support and whose needs are not expected to improve, those with other award combinations but whose needs are not expected to change and most people over State Pension Age receive an ongoing award of PIP with a ‘light touch’ review at the 10-year point. ↩
Detailed information about award reviews (including how to fill out the PIP review form) is available on the Citizen’s Advice website. See: Help with your PIP review form - Citizens Advice. DWP also provide information sheets in the award review letter and have further information on award reviews on the GOV.UK website See: Personal Independence Payment (PIP): If your PIP claim is reviewed - GOV.UK ↩
Barriers to Accessing Health Support for PIP, NS ESA, and UC Claimants - GOV.UK ↩
Note that DWP do look to identify additional support needs where an applicant is seen to present with severe mental health or behavioural condition, learning difficulty, developmental disorder or memory problems. ↩
As noted above, DWP can collect information on support needs, often by considering the presence of a severe mental health or behavioural condition, learning difficulty, developmental disorder or memory problems. As this is a subjective judgement there may be variation in how these considerations are applied in practice. ↩
Note that the Health and Disability White Paper (2023) outlines how DWP are currently exploring with NHS Digital the opportunities to share information between DWP, hospital and GP IT systems, with appropriate consent from people. ↩
Some information is available at Personal Independence Payment (PIP): How to claim - GOV.UK. How to claim PIP - Citizens Advice. A minority of PIP applicants are not online; DWP should consider alternative provision of further PIP information for this subset of applicants. ↩
The DWP Digital Application service for PIP is currently being trialled in specific regions. ↩

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Executive summary

Common challenges people face in their PIP claim journey (Section 2)

Figure 1: An infographic depicting the 4 types of support need identified in this research

Support needs across the PIP claim journey (Section 3)

Identifying and addressing additional support needs (Section 4)

Acknowledgments

Authors

Abbreviations

PIP claim ‘journey’ stages

Figure 2: Summary of customer journey[footnote 3]

1. Introduction

1.1 Background

1.2 Research aims

1.3 Methodology

Table 1: Sample breakdown by demographic characteristics

1.4 A note on language

2. Common challenges people face in their PIP claim journey

2.1 Introduction

2.2 Challenges and support needs relating to the PIP application process

Challenges and support needs identified by applicants in this research

Challenges and support needs identified by voluntary sector stakeholders

2.3 Anticipated challenges of digital aspects of the application process

2.4 Broader challenges which can influence experiences of the PIP application process and associated support needs

Financial pressure within the household

Personal identity and independence

Adapting to changes resulting from a disability or health condition

Managing intersecting and fluctuating health conditions

Accessing support

2.5 Four types of support needs identified

Figure 3: Identified support needs

3. Support needs across the PIP claim journey

3.1 Introduction

3.2 Support needs on registering a claim (PIP1)

3.3 Support needs during health information gathering (PIP2)

3.4 Support needs at the assessment stage

3.5 Support needs following the decision stage

3.6 Support needs at mandatory reconsideration and appeal stages

3.7 Support needs at award review (AR1)

4. Identifying and addressing additional support needs

4.1 Introduction

4.2 How applicants are currently trying to address support needs, and what further support is needed to address their needs

Meeting informational support needs

Meeting practical support needs

Meeting emotional support needs

Meeting wider support needs

4.3 Who should address applicant needs?

4.4 Barriers and facilitators to accessing support

Lack of awareness of the PIP application process and available support

Applicants can struggle to admit to needing help (including to themselves)

Access-related barriers can limit awareness or uptake of services

Applicants are positive about the potential support available

4.5 Identifying applicants in need of additional support

Discussion and implications

Appendix A

Appendix A: Topic guide for use with support services

Introduction - (0 to 5 minutes)

Module 1: Understanding needs of clients receiving support in their PIP applications from voluntary sector organisations - (5 to 25 minutes)

Module 2: Support provided - (25 to 35 minutes)

Module 3: Implications for DWP - (35 to 55 minutes)

Close

Appendix B: Applicant sample breakdown

Table : Breakdowns of participant by main health condition and/or disability

Appendix C: Topic guide for use with PIP applicants

Introduction - (5 mins)

Module 1 - (3 to 8 minutes)

Module 2A [AR1]: Expectations, experiences and support needs

Module 2B [PIP1]: Expectations, experiences and support needs

Module 2C [PIP2]: Expectations, experiences and support needs

Module 2D1 [Attended assessment]: Expectations, experiences and support needs

Module 2D2 [Failed to attend assessment]: Expectations, experiences and support needs

Module 2E [Decision]: Expectations, experiences and support needs

Module 2F [Mandatory reconsideration]: Expectations, experiences and support needs

Module 2G [Appeal/Awaiting tribunal]: Expectations, experiences and support needs

Module 2H [Appeal/Completed tribunal hearing]: Expectations, experiences and support needs

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Figure 2: Summary of customer journey^{[footnote 3]}