Understanding PIP Applicant Experiences: the experience of applicants with anxiety

Question 1

Executive summary

Accepted Answer

Basis Social were commissioned to explore the experiences of Personal Independence Payment (PIP) applicants in England and Wales who may be more predisposed to experiencing anxiety (i.e. applicants with mental health conditions and / or neurodiversity). The research involved 40 applicants, with qualitative interviews conducted at two different points in the claims process (once near the beginning, once toward the end) supplemented by a diary in which people detailed their touchpoints with DWP through WhatsApp. The research, commissioned by the Department for Work and Pensions (DWP), aims to understand if and how the PIP claims journey might induce feelings of anxiety amongst applicants, and what could be done to mitigate this.

The study found that anxiety is experienced in diverse ways, with many participants describing a feeling of “overwhelm,” while a few reported experiencing “manic” episodes^{[footnote 1]}. Anxiety often manifests in physical symptoms such as palpitations, rapid breathing, and difficulty sleeping.

Common triggers for feelings of anxiety include crowds and social interactions, formal interviews, changes in routine, loss of control, reflecting on past trauma, managing information, and specific activities that require individuals to step out of their comfort zone. Many participants reported “anticipatory anxiety,” experiencing anxiety weeks before a stressful event or activity.

The PIP claims journey itself is a significant source of anxiety, as it involves many of these common triggers. Several stages in the process were particularly anxiety-inducing:

starting a claim: Uncertainty about eligibility and the process, as well as the prospect of speaking to an unfamiliar person on the phone, can trigger anxiety.
completing the PIP application form (PIP2): The form’s length, complexity, and seemingly irrelevant questions, particularly those focused on mobility, cause stress. Participants expressed concerns about providing sufficient evidence, particularly for mental health conditions. Additionally, reflecting on traumatic experiences can be re-traumatising.
the assessment: The prospect of being judged by an assessor who is unfamiliar with their condition, the possibility of not being believed, and uncertainty about the assessment format and timing all contribute to anxiety.
receiving a decision: While receiving a full award was met with relief, partial or nil awards often left applicants feeling disappointed and frustrated, particularly if they felt misunderstood or misrepresented.

The research suggests a number of ways in which the PIP claims process, or support around the process, might be adapted to reduce anxiety^{[footnote 2]}, including:

providing clear and accessible information about the process in various formats, including visual walkthroughs.
raising awareness of flexibility in the application process, such as choice of the channel, date, and time of the assessment.
recognising the importance of emotional and practical support by connecting applicants with support networks and facilitating access to support.
implementing an online claim management system to enable applicants to track their claim’s progress and understand next steps. This might include access to a case manager for the most vulnerable.
improving the communication of decisions by providing more transparency in the decision-making process and modifying the language used in decision letters to be less formal.

Question 2

Acknowledgments

Accepted Answer

This research was commissioned by DWP in May 2024.

The authors would like to express their gratitude to the Department for Work and Pensions’ Social Research team for their management of the project and their valuable input and support. In particular, we extend our thanks to Katie Evans, Frances Lowry and Sorcha McKee for their project leadership and contributions throughout the process.

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

Question 3

Authors

Accepted Answer

Dan Clay – Managing Partner, Basis Social
Dan Lemmon – Research Manager, Basis Social
Deepa Ramanathan – Senior Research Executive, Basis Social

Question 4

Abbreviations

Accepted Answer

ADHD – Attention Deficit Hyperactivity Disorder
DLA – Disability Living Allowance
DWP – Department for Work and Pensions
HCP – Health Care Professional
HTP – Health Transformation Programme
MR – Mandatory reconsideration
OCD – Obsessive Compulsive Disorder
PIP – Personal Independence Payment
PTSD – Post-traumatic Stress Disorder
UC – Universal Credit

Question 5

A note on language

Accepted Answer

Some of the terminology used in this report is defined below.

Advisers: Anyone providing advice or guidance around PIP, either to applicants or non-claimants. Advisers may be informal (e.g. friends or colleagues), formal (i.e. working for an organisation where their role includes giving benefits advice), or professional (i.e. engaging with applicants/non-claimants in a professional capacity, but whose role does not formally involve benefits advice, e.g. a medical professional).
Applicants: Anyone who has submitted or is preparing an application for PIP.
Customers: Anyone who is currently claiming a DWP benefit, in this case PIP.
Disability and/or health conditions: A term used in the report to collectively describe the underlying reasons for a customer receiving a disability benefit. It encompasses a range of physical, mental, sensory, or cognitive differences or challenges that may impact an individual’s day-to-day behaviour or experience. This term has been chosen to acknowledge that the distinction between a disability and a health condition can be subjective and personal to each participant.
Non-Claimants: Anyone who is not currently claiming PIP.
PIP1: The first stage of the PIP process, when a claimant registers their PIP claim, usually completed by calling DWP to provide basic personal information.
PIP2: The second stage of the PIP process where applicants complete a form detailing how their disability or health condition impacts their mobility and/or ability to function in daily life.
Pain points: Used when referring to parts of the PIP application process that previous research has identified as particularly difficult or stressful for applicants to complete for a variety of reasons.
Nil award: The term used to describe an outcome of a PIP claim where someone is deemed not eligible for any support through PIP.
Partial award: The term used to describe an outcome of a PIP claim where someone is deemed eligible for some level of support through PIP, but not for both components and/or not at the enhanced rate.
Full award: The term used to describe an outcome of a PIP claim where someone is deemed eligible for the full level of support through PIP, including both components and at the enhanced rate.

Question 6

1.  Introduction

Accepted Answer

1.1. Background

Personal Independence Payment (PIP) is a welfare benefit that can help with extra living costs for those with a long-term health condition or disability who have difficulties doing certain everyday tasks or getting around because of their condition^{[footnote 3]}. At the time of fieldwork, the PIP application process typically involved the following stages (see Figure 1):

Figure 1: Diagram showing the PIP application and assessment process

As of July 2024, there were 3.6 million customers entitled to PIP in England and Wales^{[footnote 4]}. This represents a 29% increase in the volume of customers since July 2021 (where there were 2.8 million PIP customers^{[footnote 5]}). Mental health conditions and behavioural disorders have been a primary driver of the increase in the working age PIP caseload. The monthly average of new PIP awards where the primary medical condition was anxiety and depression has increased from 2,500 per month in 2019, to 8,800 per month in 2024^{[footnote 6]}.

In reporting on their inquiry into the assessment processes for health-related benefits^{[footnote 7]}, the Work and Pensions Select Committee acknowledged the prevalence of mental health conditions, and the increases in anxiety among disabled people in the past 10 years. They stated that the evidence suggests that health assessment processes used to inform decisions on health benefits can cause psychological distress and may help to precipitate mental health issues (though causation is difficult to determine).

Previous research has indicated ‘pain points’ in the PIP customer journey which can be particularly anxiety-inducing for claimants with mental health conditions and / or neurodiversity. Research conducted by the DWP in 2018^{[footnote 8]} explored customers’ experiences of the PIP claim journey. It showed certain aspects of the process were reported to be particularly stressful for people with mental health conditions. The report found customers with mental health conditions expressed feelings of uncertainty about the format and content of PIP appointments and the type of health professionals who would be conducting the assessment. This often caused anxiety and worry amongst customers.

By understanding more about the relationship between anxiety and the claim process, DWP will be in a better position to identify and address the pain points and to minimise anxiety. Further, by reducing anxiety for those who are most prone to it, the claim journey should be less anxiety inducing for the wider PIP claim population.

1.2. Existing and planned DWP support for PIP applicants

DWP already engage in a range of actions to help support PIP applicants throughout their claim journey.

To register for PIP, customers normally apply by telephone which can present a barrier for hearing and speech impaired customers. DWP utilise the Video Relay Service (VRS) which enables customers to communicate in real time via a British Sign Language (BSL) interpreter using a video connection. DWP also use Relay UK, previously known as Next Generation Text, which enables customers to utilise a BT agent to correspond via typed messages.

DWP offers a claim completion service for those who have the most significant difficulties. This service is provided over the telephone to help customers who cannot access support from another source to apply for PIP.

To identify and support vulnerable applicants, DWP has a range of initiatives including:

Vulnerable Customer Champions (designated DWP colleagues who support decision makers to make more informed decisions when dealing with vulnerable customers)
Additional Support Markers (a flag assigned to a customer’s DWP record (where they do not have a Personal Acting body working on their behalf) if they have been identified as needing additional support from DWP. This could be due to a severe mental health or behavioural condition, learning difficulty, developmental disorder or memory problems)
DWP Six Point Plan (a six-point framework used by DWP staff where any indication is given that the claimant is at risk of harming themselves).

For the most vulnerable customers DWP offer support through the Visiting Service. This can include help with form completion or the application process more generally^{[footnote 9]}.

DWP has also produced and published a series of videos to support all customers to understand and navigate each part of the application and assessment process which are available on GOV.UK^{[footnote 10]}.

In addition to the services already available, the Health Transformation Programme (HTP) is modernising benefit services to improve customer experience, build trust in DWP services and decisions, and create a more efficient service for taxpayers. The Programme is developing a new Health Assessment Service and transforming the Personal Independence Payment (PIP) service over the long term. The Programme’s key strategic outcomes are:

increased trust in services and decisions
a more efficient service with reduced demand for health assessments
increased take up of wider support and employment
improved customer experience with shorter journey times
transformed in-house data and IT infrastructure that is secure

The transformation of the PIP service will introduce a simpler application process, including an option to apply online, it will improve how DWP gathers health information, and tailor the process to the customer’s needs and circumstances. Some of the suggestions provided by participants in this research are aligned to activities already in progress or planned. The HTP is expected to run until 2029^{[footnote 11]}.

1.3. Research aims

The overall aim of the research was to understand how the PIP claim journey might induce anxiety for those who may be more predisposed to experiencing anxiety (i.e. applicants with mental health conditions and / or neurodiversity). This overarching objective is underpinned by a number of subsidiary research questions. These include:

1. Are there certain parts of the PIP claim journey which cause the most anxiety to customers (e.g. the ‘How your disability affects you’ applicant form, the health assessment and decision letter)?

2. What are the types of anxiety reported by customers in their PIP claim journey? For example, anticipatory anxiety, process-related anxiety, health-related anxiety, outcome anxiety etc.

3. Which customers are most susceptible to experiencing anxiety during the PIP claim journey?

4. How does the complexity or clarity of the application process affect claimant anxiety?

5. What informational gaps or uncertainties contribute most to claimant anxiety?

6. What types of support (informational, emotional, practical) do claimants find most helpful in reducing anxiety during the claims process?

7. In what ways can the Department make changes to reduce anxiety for customers in the PIP claim journey who are more prone to feelings of anxiety?

1.4. Methodology

This research involved qualitative in depth interviews conducted with PIP applicants in England and Wales at two points in time: once near the start of their claim, and once towards the end of their claim. In between these two points of time, participants kept in touch with the research team via WhatsApp or text message.

Initial (Time One) interviews were conducted with 40 participants who were at the beginning of their PIP claim journey between 20 August and 11 September 2024. Interviews were conducted by telephone or over MS Teams, depending on the preference of the participant, and each lasted approximately 30 minutes.

Table 1 sets out the achieved sample at Time One. Though hard quotas were not set for the recruitment of applicants, demographics were monitored to ensure a spread within the sample. All participants self-identified (this may or may not involve formal diagnosis) as having either a mental health condition and / or being neurodiverse, contributing to feelings of anxiety at times of stress. Quotas were not set on types of condition but within the sample these included autism, ADHD, anxiety disorders, depression, personality disorders, OCD and PTSD.

The sample itself was in part drawn by DWP of applicants that had recently completed the PIP1, and provided to Basis Social to recruit from. Just under half of the participants were recruited free find by professional field recruiters at Criteria. All participants received a £30 shopping voucher^{[footnote 12]} in recognition of their time at Time One.

Table 1: Time One sample breakdown by demographic characteristics

Characteristics	Achieved
Application route: Digital Self-Serve^{[footnote 13]}	13
Application route: BAU: Online PIP2	10
Application route: BAU: Paper PIP2	17
Stage in process: PIP1	19
Stage in process: PIP2	18
Stage in process: Assessment	3
Age: 18 to 24	10
Age: 25 to 49	20
Age: 50 to 65	10
Gender: Male	14
Gender: Female	26
Ethnicity: White British	29
Ethnicity: All other ethnic groups combined	11

To help inform the development of the Time One topic guide, the research team undertook a targeted review of posts on open-access social media sites including Reddit, Rightsnet, Mumsnet, Benefits and Work, and Scope over the past 12 months. Searches were undertaken for PIP and/or Personal Independence Payment alongside terms such as ‘anxiety’, ‘stress’, ’fear’ and ‘concern’, ‘mental health’ and ‘neurodiverse’. This exercise was done purely to understand the range of ways in which PIP applicants spoke about anxiety to ensure that researchers would be aware of these in advance of interviews. This exercise helped us to uncover key themes related to elements of the actual or expected process that contribute to feelings of anxiety (e.g. the assessment process, time waiting for the application outcome). No data containing personally identifiable information was recorded, and no interaction took place over social media. The topic guide for Time One can be found in Appendix A of this report. The themes covered included:

intersection of mental health conditions and/or neurodiversity with feelings of anxiety
coping with feelings of anxiety
understanding and expectations of the PIP process, including of different stages (including application and assessment)
experiences of the PIP process
parts of the PIP claim journey which led to feelings of anxiety, or helped mitigate feelings of anxiety
information, advice, and support received, and how this helps with managing anxiety
views toward what DWP could do to reduce anxiety and stress for people applying for PIP

On average it takes 15 weeks from the date at which a claim is started to the point at which a decision is received. Some claims take less time; some take more, in particular where a decision is disputed and taken through to a mandatory reconsideration, or tribunal. As this project was focused on understanding what elements of the process could influence feelings of anxiety, we asked people to diarise each of the contact points they had with DWP, and how this made them feel. For example, this could include the text notifications of appointments, or their feelings in the lead up to an assessment. This was done via WhatsApp or text message to ensure it was convenient and accessible for people. On average participants were involved in the diary component of this study for approximately 8 weeks, though it could vary depending on whether they had completed their PIP2 form at the Time One interview. All participants received a £40 shopping voucher in recognition of their time contributing to the diary exercise.

Time Two interviews were undertaken with 31 participants between 13th September and 10th January 2025. Interviews were again conducted by telephone or over MS Teams, depending on the preference of the participant, and each lasted approximately 30 minutes.

While we aimed to conduct interviews with participants at the end of their claim – typically at the point of decision – we approached this with a degree of flexibility. Based on diary entries, where it was felt it would be instructive to engage a participant at an earlier point (e.g. following an emotionally challenging assessment that warranted further exploration), then we would do so.

Given this research related to anxiety that could be exacerbated by the PIP process, several measures were put in place to mitigate the risk of increasing anxiety through participation in the research. All researchers were trained in trauma informed moderation, participants were offered the choice to have someone present with them when interviewed, and offered signposting to wider support services when they expressed particular stress or anxiety. The diary exercise was designed to be participant driven, giving them the agency to provide responses as and when they felt comfortable to do so. While some participants felt anxiety when taking part in the research process (e.g. in anticipation of speaking to a researcher), all wanted to participate because they felt it was important to share their experience. All participants were signposted to further support from DWP, Mind and Turn2Us as required.

Nine participants dropped out of the process by the point of the second interview. In some cases participants explained that this was because they did not feel well enough to continue to participate, but others simply stopped participating in the diary exercise and did not respond to further communications. Table 2 sets out the achieved sample at Time Two. All participants received a £30 shopping voucher in recognition of their time at the Time Two interview.

Table 2: Time Two sample breakdown by demographic characteristics

Characteristics	Achieved
Application route: Digital Self-Serve	11
Application route: BAU: Online PIP2	6
Application route: BAU: Paper PIP2	14
Stage in process: PIP2	5
Stage in process: Assessment	10
Stage in process: Initial Decision	15
Stage in process: Mandatory reconsideration	1
Age: 18 to 24	9
Age: 25 to 49	13
Age: 50 to 65	9
Gender: Male	10
Gender: Female	21
Ethnicity: White British	23
Ethnicity: All other ethnic groups combined	8

A standardised discussion guide was again developed for use with applicants in conjunction with DWP for this Time Two interview. This is included in Appendix A of this report and covers many of the same themes as for the interview at Time One.

Analysis

All interviews were recorded, and notes were taken from moderator review of the audio recording. The research team used framework analysis^{[footnote 14]} 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, patterns of responses and relationships were identified, leading to well-supported conclusions. 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. Our analysis was supplemented by regular brainstorms between members of the field team to identify and sense-check themes and conclusions.

1.5. This report

This research report details how participants with a mental health condition, cognitive condition and/or neurodiversity experienced feelings of anxiety during the process of applying for PIP. The research findings which follow are structured to provide evidence in relation to:

how anxiety impacts people applying for PIP, including common triggers and coping/management strategies (Section 2);
how different parts of the PIP claims journey can exacerbate anxiety, from commencing a claim through to decision (Section 3);
customers who are more prone to experiencing anxiety during the process of applying for PIP (Section 4); and
what applicants reported helped, or could help, them to manage stress and anxiety in applying for PIP (Section 5).

Verbatim quotes have been used throughout this report to help illustrate points made in the main narrative. These have been labelled with the participant’s gender, age, self-identified condition, award outcome, and what element of the research process it originated from. Some quotations have been modified slightly for readability, but their overall content is unedited.

Question 7

2.  How is anxiety experienced day to day by PIP applicants

Accepted Answer

All participants in this research were recruited because they self-identified as having a mental health condition and/or neurodiversity, and that the presence of these conditions could contribute to feelings of anxiety at times of stress. The sections of this report that follow will detail how participant feelings of anxiety relate to different aspects of the PIP claim journey. To contextualise this, it is important to also understand how anxiety is experienced by people more generally, what form it takes, and how people learn to manage and cope with anxiety.

2.1. Participants could experience anxiety as an emotion with mental and physical symptoms

Anxiety affects people in different ways. For many participants it was simply described as a sense of “overwhelm” at a point of stress; a feeling that they cannot cope with what is going on around them, leading them to simply “shut down” if not caught early enough. In some instances, participants described themselves as being “catatonic”. This can result in people being unable to have conversations or complete tasks, even where they know the tasks are important and that there may be negative consequences of not doing something.

Female, age 25 to 49; anxiety; full award outcome; interview response, said:

Most days I can’t get out of bed…If my panic attacks start then I’ve had it, the day just doesn’t start, that’s the end of that – it finishes there.

Male, age 25 to 49; neurodiverse and ADHD; nil award outcome; interview response, said:

I’ve often found myself removing my clothing and just laying there in the overwhelm.

Conversely, a small number of participants reported that heightened levels of anxiety can trigger a manic episode, in which they experience racing thoughts and extreme changes in their mood and emotions.

Female, age 18 to 24; personality disorder; nil award outcome; interview response, said:

I forget to eat sometimes because my brain is going at 1000 miles an hour…

Female, age 18 to 24; ADHD and PTSD; full award outcome; interview response, said:

I usually just run around stressed and stressed and stressed until I can’t anymore and lie down…. I haven’t really figured that out yet.

Many participants we spoke with had experienced anxiety for long periods of time. In some cases, the starting point was easily identifiable, and often related to a traumatic incident (e.g. a domestic abuse or conflict situation) resulting in post-traumatic stress disorder of which anxiety is a symptom. In others - often with diagnoses of depression, behavioural or personality disorders - anxiety had been a feature of their lives for as long as they could remember. In both cases, many participants expressed feelings of frustration and distress at people in their lives - professionals, friends and family – not understanding how their mental health condition and/or anxiety manifests. It was not uncommon for those who had experienced past trauma (notably sexual abuse or domestic violence) to feel like their past experiences were not believed by professionals or social networks.

While anxiety is an emotion^{[footnote 15]}, participants in this research reported feeling panic, tension and worry, and in many cases physical effects such as palpitations, quickening heartbeat, rapid breathing, sweating, vomiting and difficulty sleeping. Feelings of anxiety could be difficult to quell as they led to overthinking, including of ‘worst-case’ scenarios and these negative thoughts become “stuck” in the head.

Female, age 25 to 49; anxiety and depression; awaiting award outcome; interview response, said:

Sometimes I feel as if my head is going to explode…It’s never relaxed.

Male, age 18 to 24; anxiety and depression; nil award outcome; interview response, said:

I would like to call myself self-aware, too self-aware, to the point where I get lost in my own head.

2.2. Common, identifiable triggers for anxiety

Anxiety was rarely constant and tended to fluctuate depending on mood and circumstances. Participants spoke about feelings of anxiety “coming on” at an unpredictable point in time, but many did connect anxiety with their mental health condition and how this impacted the way they experienced the world:

Male, age 25 to 49; neurodiverse and ADHD; nil award outcome; interview response, said:

I’m navigating processes that don’t synchronise with the way my brain does things.

As such participants were often able to identify some very common (and intersectional) triggers for their anxiety, including:

crowds and social interactions, including noisy environments, conversations with strangers and unpredictable behaviour amongst others. This affects people’s level of comfort socialising and maintaining friendships, travelling on public transport or keeping appointments;

Female, age 50 to 65; anxiety, depression and ADHD; full award outcome; interview response, said:

Any form of confrontation or challenge is a major worry. I feel very vulnerable.

formal interviews or interactions with an authority figure;

Female, age 25 to 49; ADHD, anxiety disorder, OCD, and PTSD; full award outcome; interview response, said:

I wouldn’t be able to think about anything else at all. It would be with me when I go to sleep. And I’d also punish myself as well, for thinking that I’d done the wrong thing or said the wrong thing to lead to an outcome that is not what I need or that I wanted.

changes to a routine, such as the order in which they perform an action or how they spend time during the day, or having to keep an appointment – anything which was ‘out of the norm’;
loss of control, where someone is unable to plan, predict or control what is going to happen;

Female, age 18 to 24; personality disorder; nil award outcome; interview response, said:

Even little things like not being able to pick what kind of chips I want for dinner.

reflecting on trauma, which can include thinking about the nature of disabilities or health conditions that may be difficult to confront and process;
dealing with information, such as trying to complete a form or manage a bill; and
particular activities, such as having a shower, driving a car or going shopping^{[footnote 16]}.

Female, age 16 to 24; ADHD; awaiting award outcome; interview response;

If I’m out going food shopping for example… I tend to get overwhelmed. It’s a fear that people are watching me and judging me for being so stressed.

Participants highlighted how they will start becoming anxious as soon as they know that they will have to do something (e.g. travel to an appointment) so it can last weeks before an event or activity. This is what we call ‘anticipatory anxiety’, and it was common across the sample. Anxiety can also remain after a stressful experience and can lead to people playing situations over in their mind until there is an outcome which provides closure.

Everyone we spoke with described themselves as in difficult financial circumstances, which led to their application for PIP. While they did not dwell on this, some participants highlighted how their financial circumstances were a source of stress.

Male, age 50 to 65; anxiety and depression; nil award outcome; interview response, said:

Things at the moment are very stressful and hard. It’s difficult with the cost of living and everyone’s suffering financially.

2.3. Managing anxiety

Anxiety was something that fluctuated for most people. It was rarely constant and tended to come and go. Aside from panic attacks which could come on suddenly and without warning, participants could often sense when an anxiety attack was ‘coming on’, adopting strategies to manage it and prevent it escalating. These strategies tended to have been learnt over a period of time, based on knowing what worked for them, though many participants we spoke with highlighted that it was impossible to completely prevent their anxiety.

Female, age 50 to 65; anxiety and depression; full award outcome; interview response, said:

I’ve done that much therapy that I know it all [ways to manage anxiety], in my head, but putting it in place sometimes is much harder than knowing what to do.

Strategies for managing anxiety included:

avoiding triggers, which could differ, but often included social and novel situations. This meant that it was common for people to stay at home, which was seen as their “comfort zone”, and not engage with people or processes that they anticipate may cause them anxiety. This can include not doing things – like completing forms or attending appointments – which may be for their benefit. It could also include doing all shopping online or visiting shops as soon as they open so that they avoid busy periods.

Female, age 25 to 49; ADHD and autism; awaiting award outcome, interview response, said:

Some things I just don’t do and take the hit.

Female, age 18 to 24; autism; awaiting award outcome, interview response, said:

If I have to go in [to a shop] I’ll ring ahead and plan as much as I can.

medication and treatments which help people to treat the symptoms of mental health conditions. This can include both private counselling and NHS treatments such as Talking Therapies and Cognitive Behavioural Therapy. Participants have mixed views on the extent to which this is helpful and could encounter difficulties in accessing treatment on the NHS. Some people would actively avoid medications as they did not like the side effects, while others would avoid treatments, preferring to deal with any issues they were facing independently.
harmful coping mechanisms, which could include using alcohol, drugs, gambling or self-harm.
positive coping mechanisms, that ranged from breathing techniques and exercise, through to activities used to distract attention. These included listening to music on headphones, watching TV, playing computer games, reading books, art, embroidery, journalling, and cleaning.
working (or volunteering). Some participants spoke about how they would like to work, but struggled either to get a job or hold down a job because of their mental health condition. Where this was the case, participants highlighted how they felt that employers were not open to recruiting people who had additional support needs and may be more likely to be off work ill. Some participants were working, as they found roles that were compatible with their health needs. For these participants working could be both a source of anxiety and comfort, as they valued the routine and purpose it gave them but recognised it led to moments of stress.
talking to friends and family members who provide emotional support, prepare food, remind them to take medications and encourage them to go for a walk, and speaking to others that also experience anxiety (e.g. anxiety-related Facebook groups). However, many participants report that their personal relationships have deteriorated as a result of their mental health, limiting the extent to which they can rely on others and putting a lot of strain on loved ones.

Male, age 18 to 24; ADHD and depression; nil award outcome; interview response, said:

If I’m around my daughter, she’s like a safety net for me… and if I have my partner around me, he’ll calm me down and if I’m struggling to breathe he’ll help me… and just be there for me.

It is important to acknowledge that many people involved in this research reported masking their anxiety, particularly in social situations where they are engaging with other people, including their own friends and family. In some cases, this is because of embarrassment, while in others it is because they have experience of not being believed or supported in the past. Masking was a coping mechanism. In the same way as some of the examples cited above, it allows people to carry on with their day-to-day lives without becoming overwhelmed, however, it was also reported as exhausting and anxiety-provoking in its own way.

Male, age 25 to 49; ADHD; nil award outcome; interview response, said:

I’ve contributed to society… I’ve been masking… and now I’m incapable of doing things.

Question 8

3.  How the PIP claims journey can exacerbate anxiety

Accepted Answer

To provide timely and appropriate support to applicants, it is essential to understand how applicants’ feelings of anxiety may be influenced by the PIP claim journey. The following section outlines how customers’ feelings of anxiety are linked to various aspects of the application process, presented in chronological order from starting a claim through to receiving a decision on their application.

3.1. Starting a claim (PIP 1)

The first stage of the PIP claim process typically involves calling DWP to commence a claim. For some customers, taking this first step in the PIP application process can be particularly daunting as concerns around eligibility or what the process might involve could lead to a lack of confidence or trepidation in commencing an application^{[footnote 17]}. Participants talked about overthinking what would be required of them at this stage of the process and anxiety often arises from the fear of speaking to an unfamiliar person and uncertainty about the specific details they will be asked to provide (e.g. bank details). This uncertainty can lead to stress as they attempt to anticipate what conversations may involve and worry whether they are sufficiently prepared for this conversation.

Female, age 25 to 49; Anxiety; partial award outcome; interview response, said:

I was initially scared about PIP because of the huge list of things on the website. You need to be prepared to give things like bank details.

Female, age 18 to 24; ADHD and PTSD; awaiting award outcome, said:

I didn’t know on that call if they were going to ask what’s wrong with me there and then so that stressed me out… do I need to be more prepared?

It was common amongst those participants with Generalised Anxiety Disorder, and some neurodevelopmental conditions like ADHD, to have delayed starting their application until they reach a tipping point where the impact of their health condition starts to affect their ability to work, resulting in greater financial pressures.

Male, age 25 to 49; ADHD, anxiety and depression; partial award outcome; interview response, said:

Making the call was a monumental step… I procrastinate a lot.

3.2. Completing the PIP application form (PIP 2)

Most participants in this research proceeded quickly from registering a PIP application to completing the PIP2 application form itself, either digitally or on paper. For digital applications there was very little delay between commencing the claim and opening the ‘How your disability affects you’ application form, whereas for those completing the paper-based form there may have been some short delay while waiting for the form to be sent. Other research reports^{[footnote 18]} into applicant experiences of the PIP application process have detailed the challenges that people can face in completing the ‘How your disability affects you’ application form. Completing the form was a stressful and anxiety-inducing experience for many of the participants in our sample. Reflecting on the identified triggers for anxiety in Section 2, the PIP2 form was a formal process (therefore carrying authoritative weight). It required both dealing with information and detailing sensitive issues related to their health to an unfamiliar authority figure which could be traumatic and/or disempowering (e.g. in having to focus on things that they cannot do or find difficult).

Female, age 18 to 24; Depression and anxiety; partial award outcome; interview response, said:

That form itself was just anxiety in a book.

Participants with mental health conditions reported that they struggled to see the relevance of the questions asked in the PIP2 form to their specific (mental) health challenges. This led to anxiety about their eligibility, whether the information and evidence they provided was sufficient, and whether they would ultimately be awarded PIP.

Female, age 18 to 24; ADHD and PTSD; awaiting award outcome; interview response, said:

My main worry is getting the evidence… How do I prove the difficulty with a mental health condition? … There’s no tangible evidence for it… You can’t see what goes on in someone’s head, can you?

Female, age 25 to 49; Depression and anxiety; awaiting award outcome; interview response, said:

I was like I don’t even know if [PIP] is for me, to be honest. Sometimes I was questioning myself.

As a result of the perceived discrepancy between the questions and the nature of their (mental) health conditions and/or neurodiversity, many participants had difficulty understanding how to answer the questions in the PIP2 form. They highlighted concerns that the questions were designed to catch them out or trip them up, which contributed to a sense of anxiety.

Male, age 50 to 65; Schizophrenia and personality disorder; full award outcome; interview response, said:

You can think that they’re asking you one question and then they actually mean something else. You don’t know that because nobody’s there to explain what the question really means. And sometimes, for me personally, I feel like it’s all a trick, as if they’re trying to catch you out the whole time.

Relatedly, the process of reflecting inward and detailing personal experiences, including the causes of anxiety (which may be rooted in past trauma), was both embarrassing and triggering for some participants in this research. The need to disclose such sensitive information could induce feelings of anxiety and depression, in particular where it related to issues for which they had not received sufficient support in the past to manage these (e.g. childhood trauma, sexual abuse, domestic abuse, grief and loss).

Female, age 25 to 49; ADHD, OCD, PTSD; partial award outcome; interview response, said:

I almost even wanted to hide things, not actually being honest and putting down on these forms what is going on in my life because of embarrassment. Someone might ask me a question about something that I’ve never been believed about when I was younger.

Female, age 25 to 49; Anxiety; awaiting award outcome; interview response, said:

I applied in August for the form then had to phone and get extensions each month. Even when I posted it I phoned in case it didn’t get there in time. The whole process of filling it in was anxiety inducing. Having to find time and really having to think about all the things that are wrong with me and write that down for someone to judge me was overwhelming. Now all I can think about is what if they give me zero points again?

Most participants found the process of providing supporting medical evidence overwhelming. Some did not know what evidence was relevant to their application, in particular, if their condition was not formally diagnosed and/or being treated (e.g. through prescribed medication). There was also the challenge of needing to gather information while also managing health conditions which by their very nature fluctuated, impacting the energy and attention that they could bring to gathering the necessary evidence.

Female, age 25 to 49; Depression and anxiety; nil award outcome; interview response, said:

It seems a lot for the person who’s doing the form, who’s living with these conditions, to have to go and [get all the information].

The length and complexity of the PIP2 form tends to be a significant source of anxiety, particularly for those completing the paper version. The visible size - 50 pages – of the form, could lead participants who were prone to anxiety or depression to delay commencing their application due to not being able to face starting the form. In this respect the digital form was often easier to complete and took less of a physical toll on people that maybe had additional health conditions impacting their dexterity and ability to write text by hand.

Female, age 18 to 24; autism; awaiting award outcome; interview response, said:

I have to fill out the very long form which physically hurts me to do due to carpal tunnel issues in my wrist. I used to love writing but struggle to write more than a couple of sentences now.

One participant expressed a preference for completing the application form digitally but reported being pushed to use the paper version, resulting in a 3 to 4 month delay in their submitting it. This particular participant called up the DWP helpline on several occasions to request that they transition from the paper to the digital form and was reportedly told this was not possible. This was a source of great frustration.

For those using the digital form, usability issues were a source of stress for some participants. Concerns about whether the form had saved correctly, whether their responses were recorded, and whether their medical evidence had been correctly uploaded made them anxious. Navigation issues, such as difficulty moving to the next page, could compound anxiety.

It was interesting to note that some participants who had lived with their condition for many years and developed effective coping strategies found it somewhat easier to manage their anxiety while completing their application, compared to those with unpredictable mental health conditions that could flare up at any time and felt harder to control. For some individuals with neurodivergent conditions like ADHD and autism, filling out the PIP2 form meant a change in their routine, which itself caused anxiety.

Male, age 18 to 24; ADHD and depression; nil award outcome; interview response, said:

I have a day-to-day plan, and doing such a form is not a part of my everyday plan, so filling it out really stressed me out.

Participants who felt confident in their language and literacy skills generally found the form easier to complete and felt more confident during the process. This may reflect both their ability to comprehend and respond to questions, but also their ability to engage with information and guidance. In contrast, those with lower literacy levels often felt unable to manage the task independently. For these individuals, getting help from an external organisation, family members or friends made the process much less stressful.

Female, age 50 to 65; Depression; partial award outcome; interview response, said:

Without their [advice organisation’s] help I wouldn’t have known what to write and how to write it… Unless you’re really good with words and stuff you wouldn’t be able to do it… It’s quite a hard form to fill.

The default one month deadline for returning the PIP2 form was felt to be relatively short, which caused anxiety for some participants. One participant mentioned that although they knew they could request an extension, they were reluctant to do so, fearing that the DWP might record the request, and it could negatively affect them later in the process.

Female, age 50 to 65; Anxiety; awaiting award outcome; interview response, said:

I think the deadline is quite short. I know you can ring up for extensions, but I feel like when you ring up and ask for the extension, you’re begging for extra time and you’re trying to justify why you haven’t done it. And I feel like it’s being noted and it might be used against you.

In general, participants felt a huge sense of relief after submitting the PIP2 form. However, this relief was quickly replaced by a form of anticipatory anxiety at what would likely happen next, which many described as the most stressful part of the process.

Female, age 25 to 49; Depression and anxiety; awaiting award outcome; diary response, said:

I am more worried about the next stage and if my application is unsuccessful.

Female, age 18 to 24; personality disorder; nil award outcome; interview response, said:

Weekend’s been manic. I’ve had no updates which is extremely stressful because it’s making me start to regret even starting the process.

Female, age 18 to 24; autism; awaiting award outcome; interview response, said:

Waiting’s definitely the worst part.

Participants reported receiving a text informing them that they might be asked to attend an assessment. For most participants we spoke with, the lack of clarity as to whether they would be required to attend an assessment or not was sufficient enough to create anxiety. Many participants thought those who were asked to attend an assessment had made a mistake or raised suspicions in their application responses. Others had understood that everyone was required to have an assessment, so were unsure what would lead to them not requiring one, and whether a decision would solely be made on the application. This in turn lead to concerns as to whether they had completed the form sufficiently well.

Female, age 50 to 65; Depression; partial award outcome; interview response, said:

I’m nervous. Starting to think maybe I have not filled the form in okay.

Male, age 25 to 49; ADHD; nil award outcome; interview response, said:

I just don’t know what to even expect now. When I added the latest evidence it said, ‘We will send this with your PIP claim to a health professional to consider, before we make our decision. If we need more information about how your health condition or disability affects your daily life, we may invite you to attend an assessment.’ I thought an assessment was mandatory. So, I’m confused.

A lack of understanding as to what the assessment process would likely involve was also a cause of concern. Some participants prone to anxiety imagined the range of ways that the assessment could be undertaken (e.g. a physical medical exam). They also worried about ways the assessment could potentially go wrong such as saying the wrong thing or being interrogated about embarrassing issues. There was concern that their experiences, feelings and health conditions were going to be judged by someone who did not know them and could misinterpret their responses to questions.

Female, age 50 to 65; Depression; partial award outcome; interview response, said:

I will be a nervous wreck, I won’t lie… I’ll feel like I’m judged. I’ll feel like I’m on a trial of some sort.

Female, age 25 to 49; ADHD, OCD, PTSD; partial award outcome; interview response, said:

It’s like being stood isn’t it, at the bottom of Everest, but with no climbing gear, you don’t know what to expect.

Female, age 16 to 24; ADHD; awaiting award outcome; interview response, said:

It would be helpful if I knew what sort of questions they would ask me in the assessment, so I wouldn’t be put on the spot. I’m very forgetful as someone with ADHD.

Compounding this was a lack of clarity around when the assessment might occur in terms of timing – this uncertainty resulted in a lack of control and limited their ability to prepare for the assessment. Some people sought to address this by calling DWP to seek updates, but could struggle to get through to the helpline or to get any further clarity.

Female, age 25 to 49; Depression and anxiety; nil award outcome; interview response, said:

I’d just like a bit of an idea about when they are going to give me that call… whether it’s going to be next month or tomorrow…

Female, age 18 to 24; personality disorder; nil award outcome; interview response, said:

I’ll be honest I’m struggling at the moment. I haven’t had any updates. I phoned up and apparently someone is looking at my application. It’s extremely overwhelming and it caused a lot of anxiety because I had to phone up somewhere, and I’m struggling as it is to be honest.

Female, age 25 to 49; ADHD, OCD, PTSD; partial award outcome; diary response, said:

I’ve only just had a text to say that someone is looking through my claim and will notify me if I need an assessment…it would be helpful to have access to like an online portal to view progress as a visual timeline is so much more comforting…I feel absolutely distressed to be honest.

Those who had done some research online or spoken to others that had been through the PIP process anticipated the assessment to be a stressful and negative experience. Where people had engaged with (social) media content, this tended to lower their confidence and expectations of a positive outcome.

Female, age 25 to 49; ADHD and autism; awaiting award outcome; interview response, said:

I don’t want one [an assessment] at all to be honest, it’s just a necessary evil. But I’ve heard they’re dehumanising…

Female, age 25 to 49; ADHD, OCD, PTSD; partial award outcome; interview response, said:

You’ve heard all these things in the paper- people with mental health conditions and anxiety- and you’re already thinking you’re going to fail anyway.

3.3. Assessment

The assessment was anxiety-inducing for virtually all participants in this research as it involved many of the triggers that people predisposed to feelings of anxiety attempt to avoid: a formal interview with an authority figure, a change in routine, a loss of control and having to reflect on trauma or uncomfortable experiences. Some participants acknowledged that this was uncomfortable but that an assessment – particularly an in-person assessment – would present the best opportunity for an assessor to ‘see’ the impact of their health condition and/or neurodiversity. In this sense anxiety being triggered by the assessment was not seen as necessarily disadvantageous, but for most people it was a very difficult experience which enacted an emotional toll, and in some cases made their health condition or illnesses worse.

As detailed above, there was a lack of clarity around who, when and why someone would be asked to attend an assessment. As such the first response for those participants who had done limited additional research was to question why they were being asked to an assessment, and concern around whether that indicated that DWP doubted their application.

The format of the assessment can have a significant impact on participants’ anxiety levels. For most, face-to-face assessments are particularly stressful due to social anxiety which could be triggered both by the interview and the journey to the interview. Some participants were therefore very happy for this to be undertaken by telephone, where they had greater control over their environment and the ability to put coping strategies into place (including have a friend or family member present). However, as mentioned, many participants recognised that they would be better able to ‘show’ the impact of their health condition or neurodiversity face-to-face.

Female, age 18 to 24; personality disorder; nil award outcome; interview response, said:

Worried that I’m going to have to see someone face-to-face. Over the phone, I tend to do a bit better because I’m not seeing your face… But seeing someone face-to-face makes me very nervous…

Male, age 25 to 49; Depression; nil award outcome; interview response, said:

I’ve actually chosen video call on this occasion where sometimes I’d probably prefer to hide behind the phone. My thinking is if I’m talking about my depression and opening up, I’d prefer the person to see who I am and for me to see them, so it feels a little more human… At least that way if I do start getting muddled or stutter my words, the person on the other end can see that…

Regardless of the format, many participants we spoke with were deeply uncomfortable at the perceived experience of being judged by someone that did not know them. As such there was a concern that they were being assessed on the basis of a moment in time, and how they ‘appeared’ to the assessor at that point in time. As conditions, and the impact of conditions, could fluctuate^{[footnote 19]} some participants highlighted how they were not at “their worst” at the point of assessment and were anxious that they may not have clearly demonstrated how bad their condition could be. For many people whose condition was related to past trauma, anxieties were also triggered by the thought (and expectation) that they would not be believed. While people’s experience of the assessment itself tended to allay these fears, with assessors seen to be empathetic, this was a key source of anxiety leading up and through the assessment process. Many people felt that it would be more appropriate for an assessment to be made by a GP or health professional that had a longer-term understanding of how their condition affected them.

Male, age 25 to 49; Depression; nil award outcome; interview response, said:

You feel like you’re in a court. You know you’re ill, but you have to explain that to someone. Like you’re proving your innocence.

Female, age 50 to 65; Depression; partial award outcome; interview response, said:

In the end I’m just going to be judged by one person, if they think I’m eligible or not… If they don’t think I’m eligible, I feel like my life is in their hands.

Similarly, where participants had limited medical evidence to support their application, they tended to feel more anxious about ‘convincing’ an assessor as to the authenticity of their health condition. On the other hand, those who believed they had substantial medical evidence to support their case, felt slightly more confident about the assessment.

Female, age 18 to 24; ADHD and anxiety; partial award outcome; diary response, said:

A bit nervous but also a bit more confident because I finally received my formal ADHD diagnosis on Wednesday.

Male, age 25 to 49; Depression; nil award outcome; diary response, said:

The lady that spoke to me was calm, fair and certainly not pushy…I was a little anxious beforehand…I feel sometimes I could have explained myself better and some things I would have liked to explain weren’t within the questions asked.

The experience of the assessment was that the assessor repeated questions which people had responded to within the application form. This was one of the main sources of anxiety for participants as it was variously interpreted as meaning that the assessor had not reviewed their application form, that they might not have provided the ‘right’ answers initially, that they might inadvertently say something different from what they wrote, or that the process was designed to catch them out. Given some of the health conditions impacting participants led to challenges with recall and comprehension, participants expressed concerns that they would make mistakes in the responses provided.

Male, age 18 to 24; ADHD and depression; nil award outcome; interview response, said:

I didn’t really understand why they were asking me the same questions that I already provided the answers to in the form… I feel like doing the form was pointless…

Female, age 25 to 49; Depression and anxiety; nil award outcome; interview response, said:

She kept making me repeat myself again and again and asked me the same question 6 or 7 times. Don’t feel optimistic at all and felt like she was trying to trip me up.

Participants also expressed frustration about the perceived disproportionate focus on questions relating to physical ability during the assessment, which they felt were often (seemingly) irrelevant to the conditions which impacted them. This caused them stress, as many believed there was not enough time dedicated to discussing the impact of their mental health on their daily lives. For example, several participants noted that the time spent on questions relating to mobility far outweighed the attention given to their daily activities, which left them concerned that they hadn’t had the opportunity to adequately make their case, and that the assessor might not fully understand their situation.

Male, age 25 to 49; ADHD, anxiety and depression; partial award outcome; interview response, said:

I felt it [the assessment] was very ‘physical heavy’. An emphasis on cleaning and going out and if I can do that physically. A lot less emphasis on depression, anxiety and actually the ‘get up and go’ aspect of getting those things done. I checked my phone, and it was 28 minutes of physical chat, and about 8 minutes spent on mental health. I did make a point of saying I was concerned at the end of my call, and he insisted it would all be reflected in my file. I am not confident I will be awarded anything.

There were other aspects of assessments that could result in additional anxiety for participants. A few participants had issues with understanding the assessor, particularly in cases where the assessor had a strong accent. This not only made the conversation harder to follow but also added to the stress of an already tense situation. There were also a number of instances in which there were unexpected delays to a telephone assessment (i.e. the call did not commence within the timeframe provided), where interviews lasted longer than expected, or where interviews were cut short due to assessor time pressures. These exacerbated anxiety and were seen to detract from participant’s ability to communicate effectively during the assessment.

Female, age 50 to 65; PTSD, depression and anxiety; full award outcome; interview response, said:

You’re waiting for a phone call and they’re over 40 minutes late, it doesn’t do you any good.

Participants typically finished the assessment feeling underwhelmed and dissatisfied, believing they were unable to effectively convey their circumstances. This left many with low expectations regarding the outcome of their claim.

Female, age 25 to 49; Graves’ disease and anxiety; nil award outcome; diary response, said:

The assessment was not very good really. The questions that they ask didn’t really help me explain why I was struggling in life. The questions like can you prepare a meal etc. Not actually about how hard it is to live with certain diseases.

As with the PIP2 application form, people’s immediate reaction following the assessment was one of relief at having got the interview out of the way. Participants could then respond in one of a few different ways. Some put the process to one side and, not confident in their getting a positive result, tried not to think about it. For others the uncertainty about when they would receive the desired outcome led to overthinking their responses during the assessment and worrying about the decision. Some participants tried to manage their stress by lowering their expectations or forcing themselves not to dwell on the outcome.

Female, age 25 to 49; Graves’ disease and anxiety; nil award outcome; interview response, said:

I’ve kind of forced myself to believe they won’t give it to me. But I will wait patiently for up to another 7 weeks.

A minority of participants, informed by social media content, were aware that they could request a copy of their assessment report. Depending on whether (and when) they received this, it could help to alleviate anxiety by providing some indication of the assessor’s view on their entitlement. However, there were occasions where participants encountered challenges in getting their assessment report which was a source of frustration.

Male, age 50 to 65; PTSD, depression and anxiety; full award outcome; interview response, said:

Even though I’ve seen it on the Internet that you can ask for a PIP report 48 hours after the assessment, after a long wait, I got through to PIP today, and they still haven’t received it… They won’t consider [my request] this time since they haven’t got it [the report]. So, I have to phone back, request again when they have got it, and then they will consider sending it to me. What a farce!

Calls from DWP requesting further evidence during this period can be highly anxiety inducing as applicants could feel like they have either done something wrong in their application or are under additional scrutiny^{[footnote 20]}.

3.4. Decision

This stage was not inherently anxiety inducing. Either applicants received a full award, in which case they were delighted with the outcome, or they received a partial award or nil award, in which case they were typically disappointed, and in some instances angry. While not anxiety-inducing in and of itself, the way in which a nil award outcome was communicated, and the disconnect between the information applicants believed they had provided at assessment and what was reported, could lead some applicants to become very angry at the way in which the outcome was communicated. As mentioned previously, many participants see the assessment for PIP as a judgement on their health condition or disability and the way they experience this. As such there is a lot of frustration that nil or partial award outcomes result from an assessor seemingly denying or misunderstanding what they experience.

Female, age 50 to 65; Depression and anxiety; nil award outcome; interview response, said:

I was very angry when I first received the letter, to the point that I’ve shredded the letter now.

Some participants intended to challenge the decision, though most did not as they hadn’t the emotional energy to continue the process, or because they lacked confidence that it would be overturned.

Male, age 25 to 49; ADHD, Depression and anxiety; nil award outcome; interview response, said:

Having read the letter with the individual scores it was clear they don’t feel I’m eligible for PIP in pretty much each metric they use to decide. I don’t feel an appeal is worth my time and effort.

Question 9

4.  Factors which influence customer anxiety

Accepted Answer

The way in which individuals experience anxiety is influenced by a wide range of factors including their disability or health condition, life circumstances, past experiences and coping mechanisms. Understanding how different factors can influence the way in which applicants experience and manage anxiety is important for developing strategies to target resources and support to those who are most at risk. This subsection details different characteristics that appeared to contribute positively or negatively to how anxiety was experienced within the sample.

All applicants have the potential to experience anxiety during the PIP application process. At application most applicants are at a point of financial, practical and/or emotional stress, and their application for PIP is to access (financial) support to help address this. The anticipation of waiting to hear whether they will be receiving financial assistance is therefore anxiety-inducing as the outcome can have a considerable impact on their quality of life. In addition, individual parts of the application process involve activities that are common triggers for anxiety as detailed in Section 3, notably relating to interaction, information provision and uncertainties around outcomes and next steps. However, not everyone experienced the same degree of anxiety, and anxiety could manifest differently for people with different disabilities or health conditions.

For example, applicants with autism often reported that the feeling of uncertainty associated with lengthy waiting periods caused disruptions to their routine and made it harder to plan, causing them to feel anxious. Those with ADHD often said they were prone to procrastination and subsequently became overwhelmed when deadlines approached for tasks like completing the PIP2 form. Applicants experiencing depression and anxiety talked about “catastrophising”, where they overestimate the chances of negative outcomes to a point of debilitation where any actions feel futile (including continuing the PIP process, or challenging a nil award outcome). Some neurodivergent customers struggled with sensory overwhelm and found it particularly stressful when faced with large amounts of information – including online guidance or letters from DWP - at various stages of the process. Whilst some patterns could be observed it is important to understand that the way anxiety manifests is complex and naturally varies from person to person regardless of condition. In addition, some participants experienced several different forms of anxiety at the same time.

Female, age 25 to 49; ADHD and autism; awaiting award outcome; interview response, said:

Sometimes I get overwhelmed, and I can’t articulate myself… do I get penalised if it’s late? … as someone with ADHD I’m always late… I have no sense of time.

Female, age 18 to 24; personality disorder; nil award outcome; interview response, said:

I’m worried that I’m going to have to see someone face to face. Over the phone, I tend to do a bit better because I’m not seeing your face… But seeing someone face to face makes me very nervous.

Female, age 25 to 49; ADHD, OCD, PTSD; partial award outcome; interview response, said:

People who suffer with anxiety catastrophise. They already are anticipating that they failed and that they’re going to f***up and that they’re going to do it wrong. So nine times out of 10 we avoid, yeah, we’ll just think, well, we’re gonna fail anyway.

Participants in this research with a mental health condition talked about struggling with the “invisibleness” of their condition and many reported experiencing their symptoms being dismissed or belittled. They often felt like they are not believed by healthcare professionals or other authority figures, particularly those where a condition has not been formally diagnosed. This could be further exacerbated where the condition is tied to past trauma – often abuse, but also experience of conflict – which has not been fully understood or treated. These applicants were anxious that they would not be believed, often conflating the PIP outcome with a judgement as to the validity of their traumatic past experiences.

Neurodivergent applicants mentioned ‘masking’ their symptoms, in an attempt to give off a more conventional outward appearance that fits with societal norms, making their symptoms harder to detect to the untrained eye. Some neurodivergent participants were therefore anxious that an assessor may not recognise or understand the impact their neurodiversity may have.

Male, age 25 to 49; ADHD, anxiety and depression; partial award outcome; interview response, said:

[DWP] don’t really understand. It’s difficult for them to visualise or conceptualise what you’re talking about.

Male, age 25 to 49; Depression; nil award outcome; interview response, said:

I don’t like the thought of being interviewed – if I haven’t got a physical disability then people may hold a prejudice as it’s an invisible disability. You feel judged. If I’m having a bad day I could make a total buffoon of myself.

Female, age 50 to 65; Depression and anxiety; nil award outcome; interview response, said:

This PIP process is more geared towards people with physical disabilities. For anybody with mental conditions, the questions are obtuse.

Many customers experienced unpredictable fluctuations in their symptoms, and routinely worried about having to prove their health condition (or the impact of their health condition) on a ‘good day’. This was particularly relevant for those with depression and anxiety who had more complex and unpredictable anxiety triggers. These customers recognised in advance of the assessment that their condition fluctuated, and expressed concern that their assessor may not see them impacted by their health condition in a way that they felt was representative of what was normal for them. In these instances, participants felt like they would be best served by a face-to-face assessment as this would be more likely to trigger their anxiety and therefore enable them to present themselves more authentically to an assessor. The concerns still remained that they may have a good day and that this would skew the outcome in an unfavourable manner.

Male, age 25 to 49; ADHD; nil award outcome; interview response, said:

If I’m sat there in front of an assessor being my authentic self… on a lovely day… are they going to think I’m like that all the time?

Applicants who were more financially resilient (relative to others in the sample) tended to be less anxious and better equipped to manage the process. It is our opinion, at Basis Social, that this was primarily because there was less (financially) at stake for them in the PIP application process - they were in less acute financial need as compared to others. These participants were less invested in the outcome and were confident they could manage should they not be awarded PIP. Linked to their relative financial stability, these participants tended to have better access to support structures through employment and social networks. For example, some had been able to access private treatment, whereas more vulnerable customers struggled to access mental health services (and a formal diagnosis) through the NHS.

Female, age 18 to 24; ADHD and PTSD; awaiting award outcome; diary response, said:

Still pretty sure it will get declined. Generally, not much thoughts to the whole application as it’s so distant and it’s not a be all or end all!

Applicants who were able to manage their anxiety better throughout the process were those who were better informed on the process as a whole. Some applicants were informed by formal or informal advisers within their network who had knowledge or experience of the PIP application process. Others were more proactive and conducted independent searches online. Online sources accessed include Government information and guidance via gov.uk, welfare benefits advice sites, and social media. Those who accessed additional information were more aware of what each step entailed and understood that there can be long waiting periods between each stage. Overall, this meant they were more able to temper their expectations at each stage of the process which helped them manage their anxiety.

Female, age 18 to 24; autism; awaiting award outcome; interview response, said:

I know what to expect… I know roughly how long I’ll be waiting.

Female, age 18 to 24; ADHD and PTSD; awaiting award outcome; interview response, said:

I’m fairly optimistic. I’ve already had a bit of a google… I know what the questions look like and how its scored. I’m fairly okay with the questionnaire.

Whilst having a better understanding of the stages involved was felt to make the process less daunting for applicants, some sources of information provoked a different emotional response. In particular, some social media groups contained stories of negative experiences with the PIP application process. Reading about these experiences could make individuals feel anxious, anticipating that their experience will be similar.

Female, age 18 to 24; ADHD and PTSD; awaiting award outcome; interview response, said:

I’ve seen a lot of people in these groups say how anxious they are for appointments.

Some applicants were concerned with the accuracy of the information they would come across and were not always sure what to believe. Indeed, misinformation (from a range of sources) was evident. Some were encouraged to behave in a certain way to get PIP (e.g. emphasising worst days). Others had encountered information that fostered distrust toward the DWP, for example claiming that assessors’ roles were to ‘catch them out’.

Female, age 50 to 65; Anxiety; no award outcome; interview response, said:

Apparently, they assess you from the moment you pull up in the car park… How intrusive is that?… I don’t know whether I’m going to be facing one person, two people, or a panel of people… I watch YouTube, the news and social media – and there’s so much rubbish information out there. How do I know what to rely on?

Question 10

5.  What helps, or would help, to reduce anxiety

Accepted Answer

Participants in this research experiencing anxiety suggested a range of actions that DWP could consider that would help to minimise anxiety triggers, and additional support that would help them to manage anxiety at inherently stressful parts of the process. This section of the report explores what applicants feel helps, or would help, to reduce anxiety, whilst navigating the PIP application process. These suggestions have been ordered by how commonly they were raised by participants in interviews.

One key driver of anxiety in the application process is the uncertainty during lengthy waiting periods in between stages of the process of (i) what is happening with their application, and (ii) what is likely to happen next.

Applicants therefore wanted further informational support from DWP to understand:

what to expect from each stage of the process; suggestions included that this could be communicated from the outset with a visual step by step guide.
what information is relevant to include as part of their application; for example, guidance on how detailed their answers should be for different questions in the PIP2 form.
how they should prepare before each stage of the process; one suggestion was an information pack that outlines what information they will need to have on hand to answer questions at each stage of the process.
how their application is progressing; several participants suggested an online claim management system, where they could track the progress of their claim on a visual timeline.

Applicants felt this information needs to be more readily available and provided in different formats (for example, a video showing people how an assessment is conducted with the same information contained online and/or in paper-based formats). Some had found the website and accompanying guidance helpful, but these tended to be participants that were more confident and capable (including higher levels of literacy). As mentioned previously, a key trigger of anxiety for many people was written information, and participants with fluctuating conditions such as depression could find it particularly difficult to engage with written guidance. Repeated signposting to different formats, including for supporters, is therefore important to ensure access at points where people have greater confidence or capacity to engage. Furthermore, the guidance that was available was relatively generic and not typically able to address queries in relation to their specific application (e.g. has my medical evidence been received?), which points to the need for more personalised forms of support where needed.

Male, age 25 to 49; ADHD; nil award outcome; interview response, said:

They need to better prepare people… [Give better] information, advice and guidance… and be really simplistic about it.

While applicants receive text updates on the progress of their applications (notably at PIP2), these were also viewed as relatively generic and automated, with limited indication of how ‘their’ individual case is progressing. As a result, many applicants felt the need to contact DWP with queries about the progress of their application, but could find calling the PIP helpline stressful and anxiety inducing. As mentioned previously, many participants could suffer from social anxiety so found phone calls with strangers a particularly stressful activity. In addition, they reported waiting on hold for extended periods of time with little indication of how long it would take for them to speak with someone. The uncertainty around when they would get through the helpline queue further contributed to their anxiety as it disrupted their routine and limited their ability to plan.

Female, age 18 to 24; autism; awaiting award outcome; diary response, said:

My mum has given up her whole break at work to try and ring for me to get my application moving and we were left on hold for the whole break and then the phone was answered, went silent and the played the disconnected tone. I don’t think it’s fair being left so long as it makes anxiety much worse

Applicants instead wanted a more accessible online claim management system that would allow them to independently check the progress on their claim, and give them guidance on what to expect, and how they can plan and prepare for each stage of the process. Not only would this reduce their anxiety by limiting the amount of social interaction required, but it would also help address anxiety related to the uncertainty they feel during long waiting periods between stages.

Female, age 25 to 49; ADHD and autism; awaiting award outcome; interview response, said:

Maybe if they had a digital timeline… to show you where they are… I could just login and see… It would save me having to ring.

Female, age 18 to 24; ADHD and PTSD; awaiting award outcome; interview response, said:

Have an app interface… you can go on the website to submit evidence but why can’t you go on the website to check progress… something as simple as that… and calling up is just a nightmare.

Despite generally negative experiences with the helpline, applicants were clear that any digital platform should supplement rather than replace the PIP helpline. The helpline was felt to be an important part of the system because, at times, human interaction (although potentially anxiety inducing) was necessary to resolve issues with their claim. When parts of the PIP application process trigger anxiety, this can prompt a need for further information, reassurance, and intervention. When this occurred, some applicants wanted to be able to quickly talk to a DWP representative to discuss an issue with their application. In this context, they felt making the helpline more easily accessible, with shorter wait times and extended contact hours beyond 9am-5pm, was important to help them address their worries and concerns.

Female, age 25 to 49; Anxiety; partial award outcome; interview response, said:

Once I’m able to do it [the PIP2 form] I will have questions… but the lady said there is a helpline.

Some applicants suggested an ideal scenario would be to have a named case manager they could contact when issues with their application arose. This would allow them to become more comfortable interacting with DWP, as case managers could build rapport with applicants, and instil them with more confidence that their case was being monitored throughout. However, participants recognised such a resource-intensive service would likely be reserved for the most vulnerable applicants.

Male, age 50 to 65; Schizophrenia and personality disorder; full award outcome; interview response, said:

I’ve got a direct contact with the specialist at my hospital… I can phone him directly, whereas these things [PIP] are just too impersonal, too many different people, too much bureaucracy.

Where participants did reflect positively on their experience of assessments, these tended to revolve around having an assessor that was felt to be empathetic and personable. This was demonstrated by softer skills such as their mannerisms and ways of asking questions that felt relevant and non-judgemental. It also related to feelings of not being rushed, and having the opportunity to cover the issues felt to be relevant.

Finally, emotional support was recognised as key to many applicants’ ability to manage stress points throughout the process. Many applicants involved in this research reported relying on close friends or family for emotional support and reassurance at particularly anxiety-inducing stages of the process, such as the assessment. They recognised that some applicants managing anxiety could be socially isolated and lack access to informal support networks that provided them with emotional support. While they did not necessarily see emotional support as within the remit of DWP there was a view that signposting such support could help applicants better manage anxiety during the process.

Male, age 25 to 49; ADHD; nil award outcome; interview response, said:

[My wife was] really important, I needed somebody who understood me and I didn’t want to feel alone.

Although these actions and interventions could go some way to address anxiety for applicants going through the PIP application process, it is important to reiterate that for many applicants, anxiety triggers are inherent in the PIP application process. As such the desire was for DWP to be cognisant of this in designing support mechanisms, and for assessors to account for this as part of their assessment.

Question 11

6.  Discussion and implications

Accepted Answer

It is important to acknowledge that all applicants – regardless of their specific health condition or disability - can potentially feel anxious as they navigate the PIP application process. Given many people apply for PIP due to financial insecurity, there can be a significant weight placed on the outcome, as well as more of an emotional significance in validating someone’s experience of a particular health condition. Applicants may initiate a claim with negative preconceptions of the process and distrust in DWP (due to what they have heard online or been told by others) and may self-stigmatise for seeking welfare benefits in the first place. As such the PIP application naturally provokes a level of uncertainty and ‘anticipatory’ anxiety among applicants as they await what they consider to be a ‘judgement’.

DWP provide a range of services to support more vulnerable applicants, ranging from additional support markers to a claim completion service for those with the most significant challenges. These services, as well as the full range of information, advice and guidance made available to applicants, are detailed in Section 1.2. While this support exists, very few of the current sample of participants were aware of, or had accessed, these services or forms of additional information.

Whilst anyone has the potential to feel anxious during the PIP application process, there are some people who are more prone to feelings of anxiety because of a health condition or disability. Certain conditions, including anxiety, depression, neurodevelopmental conditions (like autism or ADHD) and broader ‘neurodiversity’ may mean someone is more prone to experiencing anxiety at points of stress, and the impact of this is more pronounced. In speaking with 40 applicants as they navigated the PIP application and assessment process, we identified a number of common triggers for anxiety. These included: social interaction, engaging with authority figures, disruption to routine, large amounts of information (often textual), reflecting on past trauma, uncertainty and a loss of control. While triggers may be experienced (and managed) differently, there was a high degree of consistency within the sample as to what was found to be triggering.

Reflecting on what triggers anxiety amongst people that may be more prone to experiencing anxiety, it is clear that the PIP process - from start to finish – has the potential to be highly triggering. It is an unfamiliar and relatively formal process that requires people to engage with a high volume of written information and hold conversations with strangers about potentially sensitive subject matter. There are also a host of uncertainties around the process and outcome which mean that the applicant is not able to control their experience. As such there are different forms of anxiety that we could identify as impacting applicants including:

‘anticipatory’ anxiety where people were anxious about what would happen as part of the process. This largely related to gaps in information or understanding around the next steps in the process (e.g. when an assessment might take place) which could play on someone’s mind. This form of anxiety was common across the sample.
process-related anxiety which tended to be tied to the experience of completing the PIP2 application form (i.e. the need to reflect in detail on a disability could be retraumatising) or being assessed (in particular where experiencing issues with telephone or Wi-Fi connectivity, understanding an assessor or where questions were not felt to be relevant to their condition).
outcome anxiety where people were anxious about the decision. In many cases this was tied to the receipt of a financial benefit that could help reduce detriment, but it was also simply the receipt of a decision (one way or another).

Anxiety could be seen to manifest differently throughout the PIP claim journey.

When starting a claim, applicants can be anxious about having to call and speak with DWP directly. They may be unsure if they are eligible and could be uncertain about the specific details they will be asked to provide. This uncertainty can provoke anxiety as they worry whether they are sufficiently prepared for this conversation. Those who had more clarity on what this call would involve, and what information they would need to have on hand, found it helpful to set expectations. The actual experience of providing basic information as part of commencing a PIP claim was not anxiety-inducing in and of itself.
When filling in the PIP2 form applicants can become overwhelmed with the length and complexity of the form, are unsure of what information to provide as part of their application and may find it difficult to reflect deeply on their experience of their health condition (and potentially, past trauma). Some participants struggled to see the relevance of many of the questions perceived as being focused more on physical health asked as part of the PIP process, triggering anxiety over whether they were eligible for PIP and creating confusion over how to best answer the questions. In addition, the process of accessing and providing medical evidence could be anxiety inducing, in particular, where applicants lacked formal diagnoses. This could provoke anxiety over the likely (negative) outcome of their application (as opposed to their own confidence in their eligibility). Information and guidance over what was relevant to provide as part of this form helped applicants feel more confident when completing this part of the process. Some applicants benefited from practical support (e.g. a friend or support worker writing their responses) that reduced burden at this stage of the process. After submitting the form update texts communicating the next stage of the application were appreciated and helped participants prepare for the assessment.
At the assessment applicants could experience a wide range of anxiety triggers. A formal interview with an authority figure, feeling judged, a change in routine, a loss of control and having to reflect on trauma or uncomfortable experiences, were all triggers of anxiety at this stage of the process. Participants with more severe fluctuations or who perceived themselves as having a more ‘invisible’ health condition were worried they would not be believed at the assessment. At the assessment some participants felt the assessor was trying to catch them out due to the repetition of questions asked in the PIP2 form. Like the PIP2 form, much of the assessment was felt to be focused on the impact of physical disabilities which were not (always) relevant to them, and made them further doubt their eligibility. Some participants felt reassured by their assessor as they were empathetic and personable, making them feel more at ease. Those who participated in telephone assessments reported feeling more comfortable as they did not have to travel to an unfamiliar location and speak with an assessor face-to-face. However, there was recognition amongst some participants that a face-to-face assessment would enable them to present a truer reflection of how their disability impacted them. As such, continuing to offer applicants choice over the channel of the assessment is key.
At decision applicants had been dealing with the uncertainty of whether or not they would receive financial assistance, often for many weeks without an update, and this uncertainty fuelled feelings of anxiety. Those who were not awarded PIP often felt deflated and frustrated, and felt like they had been misunderstood, or misrepresented by the assessor. Some participants would go on to challenge their outcome, though some did not have the emotional energy to continue with the process, and others felt they would not be successful.

The way anxiety was experienced by applicants throughout the process has a number of implications for DWP to consider when looking at how the PIP application and assessment process, and support that sits around this, could help applicants reduce and manage their anxiety as it relates to the process. As set out in Section 1.2, DWP are already implementing a range of actions to identify and support vulnerable applicants. The suggestions which follow align with these actions and should be seen as complementing the actions already being undertaken.

Providing clarity and setting expectations. There is a general lack of clarity around what the PIP process involves. While DWP do provide guidance there needs to be recognition that participants with mental health conditions and disabilities that make them prone to anxiety can struggle to engage with (written) information. DWP may wish to consider how to make information and guidance on the process more accessible. This could involve making information available in different formats and creating different avenues for applicants to access this information at key points in the process. Applicants needed to be clearly signposted to relevant information, at the right time, and some may require visual walkthroughs as they struggle with written text. Some applicants are more comfortable to engage with information independently, whereas others may require someone to talk them through the process. In addition, information needs to be targeted at both applicants and their supporters. For example, applicants could be provided with information that is intended to be passed to a friend or family member.
Giving and promoting choice to applicants where possible. Some applicants felt they lacked control throughout the application process. Participants offered the choice to complete the application online or on paper were appreciative of this as it allowed them to choose the most accessible format. Embedding further choice at key stages in the process could help participants manage their anxiety. For example, where participants must take part in an assessment interview, providing more choice over the date and time it takes place could help participants feel more in control, as well as ensuring they are aware of the choice of channel.
Acknowledging the importance of emotional support. Emotional support was recognised as key to helping applicants manage anxiety throughout the process. Whilst not felt to be within DWPs remit to provide directly, DWP could check whether applicants have the necessary support networks in place to provide this, and where they don’t to signpost them to wider support services that can provide emotional support. Tied to this may be the provision of practical support in completing the PIP2 form for example.
A mechanism to track progress. Applicants can feel ‘lost in the system’ in-between stages, with lengthy waiting times without any specific communications creating a sense of uncertainty. Applicants experiencing anxiety would benefit from an online claim management system that would allow them to track the progress of their claim independently and understand what they to do next. This would reduce the need for direct interactions with DWP representatives at times of uncertainty, a common response for those experiencing anxiety. It would also help applicants feel more reassured during waiting periods between stages, as seeing their progression could set more realistic expectations around the rest of the process.
Communicating outcomes. Applicants who were not awarded PIP often felt like they had not been believed, that they had ‘failed’ to communicate their circumstances properly, or that the assessor has misrepresented them. These feelings often worsened their feelings of anxiety and generated further distrust in DWP. To reduce anxiety, DWP could consider how to make the decision-making process and criteria more transparent, so participants can feel that they have been fairly and accurately assessed. For example, DWP could provide the assessors report to applicants more routinely rather than by request only. It may also be beneficial to review and modify the text so that it feels less formal and officious (e.g. ‘I have decided’).

More broadly, there is a question as to whether the PIP application process in its current form is suitable for applicants whose primary condition is one relating to mental health and/or neurodiversity. Currently many of the questions in both the PIP2 form and the assessment are focused on the impact of more physical disabilities. This causes those with mental health conditions and disabilities to doubt their eligibility and worry that they will not be assessed accurately, undermining confidence in the system as a whole. DWP may want to consider how to make the PIP application process more focused on the impact of mental health symptoms for those applying predominantly or solely on this basis. Tailoring or streamlining the application process differently for those presenting with mental health conditions or neurodivergence could help give these applicants greater confidence in the process and outcome, as well as PIP applicants more generally.

We would like to finish this report by thanking all those who gave up their time to speak to us and remained engaged over a number of months during their PIP application. These discussions along with the diary study often involved people talking about highly personal and sensitive subject matter, and they did so with the intention of helping inform future DWP PIP policy and services.

Question 12

Appendix A: Applicant Topic Guides

Accepted Answer

Time One – First Interview

Time: 0 to 3 minutes

Content: Introduction (3 minutes)

Thank you for agreeing to speak.

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

We are speaking with people who have started an application for Personal Independence Payment (also known as PIP) to understand a little more about their experience throughout the process, and identify any factors that may cause people anxiety and stress. This may help DWP to improve applicant’s experience of the PIP application process in the future.

Whatever you say to me will be 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 current PIP benefit claim or dealings with DWP. Please be as open and honest as you can.

I would like to audio record and take typed notes of the discussion today [If online – 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.

Are you happy to continue with this interview on this basis? Moderator to confirm consent and commence recording.

Do you have any questions before we start?

Time: 3 to 10 minutes

Content: Understanding factors influencing their anxiety (7 minutes)

Objective: this section is to help us to understand participants’ current circumstances and the nature of their disability and/or health conditions, and confirm where they are in the process.

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?

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? (e.g. ability to plan a journey, to move around, to take care of themselves or others).

a. I understand you identify as having a mental health condition and/or as being neurodiverse. Can you tell me a bit more about how this affects you day to day?

b. Does that impact change over time? If so, how?

c. Any other conditions that you feel I should know about? (Probe to ensure all MH conditions and any neurodiversity covered for full context)

3. You mentioned earlier to the recruiter that your mental health condition can lead to anxiety at times of stress. Can you tell me a little bit more about this?

How does it lead to anxiety?
Are there particular times or events where you feel especially anxious or stressed?
Are there any common factors that cause this? i.e. time stress, symptoms, social situations etc
How does this anxiety affect you?

4. How do you go about managing feelings of anxiety at these stressful moments?

Probe:
Formal support
Informal support
Individual coping mechanisms

5. Is there anything that makes it easier to manage or cope with feelings of anxiety?

a. What about things that make it more difficult?

So that I ask the right questions:

6. Can I check where you are in the PIP application process? As I understand it you [Insert action based on recruitment schedule]. Interviewer to confirm with participant journey stage and update interview tracker

Intend to start a PIP claim in the coming days/weeks
Started a PIP claim by calling DWP or completing a PIP1 online/paper form which asks for basic information about you and your bank details
Completed the ‘’How your disability affects you’ (PIP2) form which goes into detail about the impact of different health conditions and disabilities

Time: 10 to 20 minutes

Content: Understanding and expectations of the PIP application process (10 minutes)

Objective: this section starts to explore the customer journey to commencing a PIP claim, their understanding of PIP eligibility and sources of information.

7. Thank you for your answers so far, it would be great now if we could go into your understanding of the PIP process. To begin, talk me through what you know about PIP. Imagine you are explaining what it is to someone who had never heard of PIP before. Probe:

Who do you think PIP is for?
Do you know anyone that receives PIP? Can you give me any examples of people that might qualify for PIP? What about people that wouldn’t qualify?
What (if anything) have you heard about PIP? Who/where heard? (Probe around what they heard pre-application and how/if this has changed)
What thoughts went through your mind? Can you remember having any particular questions?

8. Can you tell me a little bit about why you applied (or are intending to apply) for PIP?

Level of confidence in eligibility/entitlement
Source of confidence (e.g. recommended to apply by someone else?)
Level of support need
Financial need
Worsening health

9. Can you talk me through your understanding of what the PIP application process entails? What steps do you think are involved?

a. Registering PIP1

b. PIP2

c. Assessment

d. Any expectations around how long the process may take

e. Do you have any questions about the process? What are they?

10. Are there any aspects of the process that you are particularly worried, or which are causing you anxiety?

Overall, does the application journey feel clear to you? If not, probe for specific stage / aspect
What is it about that aspect that makes you worried/concerned?
What, if anything, do you think could be done to reduce your anxiety around this aspect of the process? (e.g. more information, clearer communications, etc.)

Time: 20 to 25 minutes

Content: Emotions towards the process, and how they are managing these (5 minutes)

Objective: this section delves into the feelings they have towards the oncoming PIP application process stages, and how they intend to manage these.

11. Great, you are doing really well and what you are telling me is very useful. Now I want to delve a little deeper into your thoughts towards the stages of the PIP application process.

a. If completed PIP1 or PIP2 stages so far: How would you describe your experience going through [PIP1/PIP2]?

Probe around emotions/anxiety, as related to identified types:
- Anxiety before a certain stage (Anticipatory)
- Anxiety around complexity of the process / meeting requirements at each stage (Process-related)
- Anxiety around waiting for decisions / delays in getting these (Outcome anxiety)
- Money worries, possibly related to delays (Financial)
- Concern that stress will exacerbate their health condition / symptoms (Health-related)
What makes you say this?
Is there anything that could have helped you manage more easily throughout this part of the process?

Moderator, start at the next stage they are about to go through and ask

12. Thinking about [PIP1/PIP2/ASSESSMENT], how are you feeling about it?

Questions or confusions (e.g. around the process, eligibility, timeframes)
Do they have enough information about the journey
Confidence in approach
Feelings towards / expectations of outcome
Worries and anxieties about it

Time: 25 to 30 minutes

Content: Close (5 minutes)

That is all my questions. Is there anything else you would like to add?

Thank you very much for your time. This has been very helpful and will be used to inform the way in which support is provided to people going through PIP information is provided to people in the future.

Again, just to confirm your responses are confidential and will not impact your PIP claim with DWP.

Just to remind you about what happens next, we’ll be starting the diary study soon. This will involve us periodically communicating with you over Whatsapp about your experiences as you go through the rest of the PIP application process….

If you have any questions, please do get in touch with us by email or phone. [Note they will have received these details on the information and consent form – Provided below for reference]

There is a £30 shopping voucher to thank you for your participation in this round of the research. This will be processed in the coming week.

Thanks again.

Time Two – Second Interview

Time: 0 to 3 minutes

Content: Introduction (3 minutes)

Thank you for agreeing to speak.

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

We are speaking with people who have started an application for Personal Independence Payment (also known as PIP) to understand a little more about their experience throughout the process, and identify any factors that may cause people anxiety and stress. This may help DWP to improve applicant’s experience of the PIP application process in the future.

Whatever you say to me will be 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 current PIP benefit claim or dealings with DWP. Please be as open and honest as you can.

I would like to audio record and take typed notes of the discussion today [If online – 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.

Are you happy to continue with this interview on this basis? Moderator to confirm consent and commence recording.

Do you have any questions before we start?

Time: 3 to 10 minutes

Content: Current context (7 minutes)

Objective: this section is to help us to understand participants’ current circumstances and the nature of their disability and/or health conditions, and confirm where they are in the process.

1. Its great to speak with you again. How are you doing at the moment?

a. Last time we spoke you told me about certain times of stress that can lead you to feel anxious. How has it been managing these moments since we last spoke?

b. Have there been any major changes in your life since we last spoke?

So that I ask the right questions:

2. Can I check where you are in the PIP application process? As I understand it you [Insert action based on recruitment schedule]. Interviewer to confirm with participant journey stage and update interview tracker.

Are in the process of completing the ‘’How your disability affects you’ (PIP2) form which goes into detail about the impact of different health conditions and disabilities [Module 1]
Are awaiting an assessment [Module 2]
Have recently attended an assessment [Module 3]
Have recently received the decision letter [Module 4]

Time: 10 to 30 minutes

Content: Module 1: Completing the PIP 2 form (20 minutes)

Objective: to explore the customer’s current experience in a snapshot at the PIP2 stage of the journey.

3. How did you find the diary exercise?

How easy or difficult was it to complete?

4. Let’s talk a little bit about your diary entries. It looks like… [recall key points from diary entries]. Can you talk me through what happened?

a. How did this make you feel?

5. So you recently received the PIP2 form and you’re in the process of completing it…

When you first opened the form, what was your initial reaction?
Was it what you were expecting?
How easy or difficult did you find / are you finding it to complete? Probe as necessary regarding any process-related anxiety caused by the form; anticipatory anxiety experienced waiting for it, etc.
Are you planning to collect any supporting evidence to send with the form (e.g. appointment letters)? Probe around understanding of what to provide, any difficulties in obtaining it if relevant.
What questions do/did you have about it? PROBE: any informational gaps DWP could fill? Did informational gaps contribute to anxiety?
Have you found the application process clear / has the complexity of the application contributed to your anxiety?

6. Is there anything that you are worried or anxious about at this point in the process?

a. If yes:

Probe as relevant around what is driving anxieties. Examples could be related to…
the outcome
The complexity of the form / process
the rest of the process / not knowing what is next
managing their health
gathering supporting evidence
time pressures
their financial situation

b. If no:

Probe as relevant into why they think that is. Examples could be related to…
Informal/formal support
Coping mechanisms
Confidence in ability

7. Have you given much thought to the next stage of the process yet?

a. What are your thoughts on the next stages? Are you aware of what is next / do you feel informed? b. Do you have any particular worries or concerns going forward?

8. How have you managed any worries or concerns so far?

Probe as relevant:

a. Informal support from friends and family

b. Formal support services

c. Their own coping mechanisms

If accessed support to manage the process

9. How is the support from [Informal/formal service] helping you manage this stage of the process?

Probe as relevant around:

a. Informational support

b. Practical support

c. Emotional support

d. Wider support

10. How effective has this support been in reducing stress or reassuring you?

a. What makes you say this?

Ask all

11. Reflecting on your journey so far, is there anything that would have helped to minimise stress and anxiety when going through this process?

Probe as relevant to needs, link to specific stage of process where possible:

a. More informational support (what info is needed and when? / what gaps exist? What gaps contribute most to anxiety)

b. More practical support

c. More emotional support

d. More wider support

e. More time (e.g. in completing forms)

f. Where would you want to get support from?

g. What could have been clearer / less complex in the claim journey?

h. How would this support help you through the process?

12. What do you think DWP should be doing to reduce anxiety and stress in the PIP application process?

Probe around:

a. Possible changes to the process (Moderator to pick up on anything specific previously mentioned by participant)

b. Informational support – e.g. clearer / more frequent / different communications from DWP

c. Practical support (probe for examples/what could be provided)

d. Emotional support (probe for examples/what could be provided)

e. Wider support (probe for examples/what could be provided)

f. Reduce complexity (how?)

g. Address informational gaps (specify)?

Time: 10 to 30 minutes

Content: Module 2: awaiting an assessment (20 minutes)

Objective: to explore the customer’s current experience in a snapshot at the pre-assessment stage of the journey.

13. How did you find the diary exercise?

How easy or difficult was it to complete?

14. Let’s talk a little bit about your diary entries. It looks like… [recall key points from diary entries]. Can you talk me through what happened?

a. How did this make you feel?

15. So you recently completed the PIP2 form and you’re now awaiting your assessment [Note to moderator: v small number of claimants do skip the assessment stage due to certain circumstances]…

Do you know when this going to be?
Is your assessment online, over the phone, or in person?
How are you feeling about attending the assessment?
What do you expect to happen during the assessment? Do you feel informed about what the assessment will involve? Could more information make this clearer?
Have you found the application process clear / has the complexity of the application contributed to your anxiety?

16. Is there anything that you are worried or anxious about at this point in the process?

a. If yes:

Probe as relevant around what is driving anxieties. Examples could be related to…
Communications from DWP (or perceived lack of communications)
Travelling to the assessment
the outcome
the rest of the process
managing their health
time pressures
their financial situation

b. If no:

Probe as relevant into why they think that is. Examples could be related to…
Informal/formal support
Coping mechanisms
Confidence in ability

17. Have you given much thought to the next stage of the process yet?

a. What are your thoughts on the next stages? Are you aware of what is next/do you feel informed?

b. Do you have any particular worries or concerns going forward?

18. How have you managed any worries or concerns so far?

Probe as relevant:

a. Informal support from friends and family

b. Formal support services

c. Their own coping mechanisms

If accessed support to manage the process

19. How is the support from [Informal/formal service] helping you manage this stage of the process?

Probe as relevant around:

a. Informational support

b. Practical support

c. Emotional support

d. Wider support

20. How effective has this support been in reducing stress or reassuring you?

a. What makes you say this?

Ask all

21. Reflecting on your journey so far, is there anything that would have helped to minimise stress and anxiety when going through this process?

Probe as relevant, link to specific stage of process where possible:

a. More informational support (what info is needed and when? what gaps exist? What gaps contribute most to anxiety)

b. More practical support

c. More emotional support

d. More wider support

e. More time

f. Where would you want to get support from?

g. What could have been clearer / less complex in the claim journey?

h. How would this support help you through the process?

22. What do you think DWP should be doing to reduce anxiety and stress in the PIP application process?

Probe around:

a. Possible changes to the process (Moderator to pick up on anything specific previously mentioned by participant)

b. Informational support – e.g. clearer / more frequent / different communications from DWP

c. Practical support (probe for examples/what could be provided)

d. Emotional support (probe for examples/what could be provided)

e. Wider support (probe for examples/what could be provided)

f. Reduce complexity (how?)

g. Address informational gaps (specify)?

Time: 10 to 30 minutes

Content: Module 3: attended an assessment (20 minutes)

Objective: to explore the customer’s current experience in a snapshot at the pre-assessment stage of the journey.

23. How did you find the diary exercise?

How easy or difficult was it to complete?

24. Let’s talk a little bit about your diary entries. It looks like… [recall key points from diary entries]. Can you talk me through what happened?

a. How did this make you feel?

25. So you recently attended your assessment and you’re now awaiting your decision. How did your assessment go?

Was it what you expected?
How did you feel during it?
How did you feel about the assessor carrying out the assessment?
How about after it was over, how did you feel then?
Do you have any questions? Probe: any informational gaps DWP could fill? Did informational gaps contribute to anxiety?
Have you found the application process clear / has the complexity of the application contributed to your anxiety?

26. Is there anything that you are worried or anxious about at this point in the process?

a. If yes:

Probe as relevant around what is driving anxieties. Examples could be related to…
the outcome
the rest of the process
managing their health
time pressures
their financial situation

b. If no:

Probe as relevant into why they think that is. Examples could be related to…
Informal/formal support
Coping mechanisms
Confidence in ability

27. Have you given much thought to the next stage of the process yet?

a. What are your thoughts on the next stages? Do you feel you know what these are/what to expect? b. Do you have any particular worries or concerns going forward?

28. How have you managed any worries or concerns so far?

a. Probe as relevant

b. Informal support from friends and family

c. Formal support services

d. Their own coping mechanisms

If accessed support to manage the process

29. How is the support from [Informal/formal service] helping you manage this stage of the process?

Probe as relevant around:

a. Informational support

b. Practical support

c. Emotional support

d. Wider support

30. How effective has this support been in reducing stress or reassuring you?

a. What makes you say this?

Ask all

31. Reflecting on your journey so far, is there anything that would have helped to minimise stress and anxiety when going through this process?

Probe as relevant, link to specific stage of process where possible:

a. More informational support (what info is needed and when? What gaps exist? What gaps contribute most to anxiety)

b. More practical support

c. More emotional support

d. More wider support

e. More time

f. Where would you want to get support from?

g. What could have been clearer / less complex in the claim journey?

h. How would this support help you through the process?

32. What do you think DWP should be doing to reduce anxiety and stress in the PIP application process?

Probe around:

a. Possible changes to the process (Moderator to pick up on anything specific previously mentioned by participant)

b. Informational support – e.g. clearer / more frequent / different communications from DWP

c. Practical support (probe for examples/what could be provided)

d. Emotional support (probe for examples/what could be provided)

e. Wider support (probe for examples/what could be provided)

f. Reduce complexity (how?)

g. Address informational gaps (specify)?

Time: 10 to 30 minutes

Content: Module 4: Received a decision (20 minutes)

Objective: to explore the customers current experience in a snapshot at the PIP2 stage of the journey.

33. How did you find the diary exercise?

How easy or difficult was it to complete?

34. Let’s talk a little bit about your diary entries. It looks like… [recall key points from diary entries]. Can you talk me through what happened?

a. How did this make you feel?

35. So you recently received the decision letter for your PIP claim [Note: digital applicants might receive a call before their letter, explaining outcome and answering any questions. Adapt questions accordingly if required]…

When you first opened the decision letter, what was your initial reaction?
Was the outcome what you were expecting? How does that make you feel?
What questions do you have about it?
Do you plan to go through a MR or Appeal? Why/ why not? Probe: any informational gaps DWP could fill? Did informational gaps contribute to anxiety?
Have you found the application process clear / has the complexity of the application contributed to your anxiety?

Is there anything that you are worried or anxious about at this point in the process?

a. If yes:

Probe as relevant around what is driving anxieties. Examples could be related to…
the outcome
MR and Appeal (going to tribunal)
managing their health
time pressures
their financial situation

b. If no:

Probe as relevant into why they think that is. Examples could be related to…
Informal/formal support
Coping mechanisms
Confidence in ability

37. How have you managed any worries or concerns so far?

Probe as relevant:

a. Informal support from friends and family

b. Formal support services

c. Their own coping mechanisms

If accessed support to manage the process

38. How is the support from [Informal/formal service] helping you manage this stage of the process?

Probe as relevant around:

a. Informational support

b. Practical support

c. Emotional support

d. Wider support

39. How effective has this support been in reducing stress or reassuring you?

a. What makes you say this?

Ask all

40. Reflecting on your journey so far, is there anything that would have helped to minimise stress and anxiety when going through this process?

Probe as relevant, link to specific stage of process where possible:

a. More informational support (what info is needed and when? What gaps exist? What gaps contribute most to anxiety)

b. More practical support

c. More emotional support

d. More wider support

e. More time

f. Where would you want to get support from?

g. What could have been clearer / less complex in the claim journey?

h. How would this support help you through the process?

41. What do you think DWP should be doing to reduce anxiety and stress in the PIP application process?

Probe around:

a. Possible changes to the process (Moderator to pick up on anything specific previously mentioned by participant)

b. Informational support – e.g. clearer/more frequent/different communications from DWP

c. Practical support (probe for examples/what could be provided)

d. Emotional support (probe for examples/what could be provided)

e. Wider support (probe for examples/what could be provided)

f. Reduce complexity (How?)

g. Address informational gaps (specify)?

Throughout this report we have used the words of participants. As an example, a number of the people we spoke with mention ‘manic episodes’. The research team did not seek to qualify if they objectively experienced mania. ↩
It should be noted here that these suggestions are based on participant views, and did not account for support mechanisms already provided by DWP under business as usual, or the Health Transformation Programme. Participants had no experience of additional support. ↩
DWP (2025), ‘Personal Independence Payment: What is PIP for?’ – GOV.UK. ↩
DWP (2024), ‘Personal Independence Payment: Official Statistics to October 2024’ – GOV.UK. ↩
DWP (2021), ‘Personal Independence Payment: Official Statistics to July 2021’ – GOV.UK. ↩
DWP (2025), ‘Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper: Interim Evidence Pack’ – GOV.UK. ↩
House of Commons Work and Pensions Committee (2023), ‘Health assessments for benefits’ – GOV.UK. ↩
DWP (2018), ‘Personal Independence Payment Claimant Research – Final Report’ – GOV.UK ↩
Support visits if you need help to claim benefits ↩
Personal Independence Payment films ↩
Read further information on the Health Transformation Programme. ↩
Note that some participants opted to donate their shopping vouchers to a charity of their choice ↩
On 27 July 2023, following small-scale private beta testing, the Health Transformation Programme made available a new service which enables customers to apply for PIP fully online via GOV.UK. This is referred to as Digital Self-Serve, and is available to customers in a limited number of postcodes to enable a robust evaluation. Other application channels are available as normal. ↩
Ritchie, J., et al. (2014), ‘Qualitative Research in Practice’. Sage: London. (2nd Edition). ↩
For example, NHS England ‘Managing anxiety’. ↩
Taking part in the interviews that formed part of this research was also something that many participants found anxiety-inducing. One person described having “been up since 5am to prepare for this call”, while others had practiced their responses to potential questions with loved ones, or spoken about the research interview with their therapist. ↩
Digital Self-Serve, which enables customers to apply for PIP fully online via GOV.UK, is an initiative being delivered as part of the Health Transformation Programme. The service is currently available to a limited number of postcodes to enable a robust evaluation, which is ongoing. Other application channels are available as normal. The evaluation summary, which details evidence of the benefits, for some applicants, of removing the need to make an initial phone call to DWP to begin the PIP application process. ↩
For example, DWP (2024) The Impact of Fluctuating Health Conditions on Assessment ↩
See also DWP (2024) The Impact of Fluctuating Health Conditions on Assessment ↩
In some cases, additional evidence may be required to enable Case Managers to reach an accurate decision. Where evidence is needed this can be: – Obtained as verbal evidence by the Case Manager via a short telephone call to the customer – Obtained by the Assessment Provider directly from the GP via a General Practitioner Factual Report ↩

Understanding PIP Applicant Experiences: the experience of applicants with anxiety

Executive summary

Acknowledgments

Authors

Abbreviations

A note on language

1. Introduction

1.1. Background

Figure 1: Diagram showing the PIP application and assessment process

1.2. Existing and planned DWP support for PIP applicants

1.3. Research aims

1.4. Methodology

Table 1: Time One sample breakdown by demographic characteristics

Table 2: Time Two sample breakdown by demographic characteristics

Analysis

1.5. This report

2. How is anxiety experienced day to day by PIP applicants

2.1. Participants could experience anxiety as an emotion with mental and physical symptoms

2.2. Common, identifiable triggers for anxiety

2.3. Managing anxiety

3. How the PIP claims journey can exacerbate anxiety

3.1. Starting a claim (PIP 1)

3.2. Completing the PIP application form (PIP 2)

3.3. Assessment

3.4. Decision

4. Factors which influence customer anxiety

5. What helps, or would help, to reduce anxiety

6. Discussion and implications

Appendix A: Applicant Topic Guides

Time One – First Interview

Time Two – Second Interview

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Executive summary

Acknowledgments

Authors

Abbreviations

A note on language

1. Introduction

1.1. Background

Figure 1: Diagram showing the PIP application and assessment process

1.2. Existing and planned DWP support for PIP applicants

1.3. Research aims

1.4. Methodology

Table 1: Time One sample breakdown by demographic characteristics

Table 2: Time Two sample breakdown by demographic characteristics

Analysis

1.5. This report

2. How is anxiety experienced day to day by PIP applicants

2.1. Participants could experience anxiety as an emotion with mental and physical symptoms

2.2. Common, identifiable triggers for anxiety

2.3. Managing anxiety

3. How the PIP claims journey can exacerbate anxiety

3.1. Starting a claim (PIP 1)

3.2. Completing the PIP application form (PIP 2)

3.3. Assessment

3.4. Decision

4. Factors which influence customer anxiety

5. What helps, or would help, to reduce anxiety

6. Discussion and implications

Appendix A: Applicant Topic Guides

Time One – First Interview

Time Two – Second Interview

Is this page useful?

Help us improve GOV.UK

Help us improve GOV.UK