Behavioural Insights for Health Transformation Programme Service Design: Project Summaries 2022 to 2025

Question 1

Introduction

Accepted Answer

The Health Transformation Programme (HTP) is transforming the Personal Independence Payment (PIP) service and developing a new single Health Assessment Service for all benefits that use a functional health assessment. The HTP is a large, agile and complex programme, which means that our approach to building evidence must develop as the Programme does. We published an evaluation strategy for the HTP setting out our layered approach to evidence creation. In this context we have been carrying out targeted, small-scale tests and exploratory studies to inform decisions around specific processes and design aspects of the PIP and health assessment journeys.

Between Autumn 2022 and Spring 2025, the Department for Work and Pensions (DWP) commissioned Basis Social to deliver a series of behavioural insight studies for the HTP. These were small-scale and exploratory, testing a range of initiatives to inform the early stages of the design and development of transformed services. Each behavioural insight study had a narrow focus, testing a specific process or design aspect with a targeted group of service users.

These studies provided rapid insights into how service users perceived and responded to different initiatives. The research was conducted with customers, potential applicants and staff, outside of the live claims environment to avoid disadvantaging or putting additional burden on service users.

The projects were conducted to identify and explore ways to improve services, through examining user experiences in detail. This means the research often focuses on challenges and issues within existing services, like the difficulty of sharing of personal information about health conditions and their impact, or people who are more likely to experience challenges with PIP processes, such as those with fluctuating health conditions or a pre-disposition to anxiety. As such, whilst the findings can seem negatively focused, the aim is to highlight the opportunities to positively transform services.

Basis Social conducted 9 behavioural insight studies to inform HTP. A summary of one of these, Specialism in the Health Assessment: Initial Exploratory Research - GOV.UK, was published in 2024. Summaries of the following studies are included in this compendium:

The impact of providing pre-assessment information to PIP applicants.
Opportunities for signposting to support services across the health assessment journey.
Exploring potential PIP applicants’ understanding of PIP eligibility.
Testing the concept of a Health Impact Record in supporting PIP applications.
Testing online PIP eligibility information materials.
Understanding the needs of PIP applicants to inform a ‘Help to Claim’^{[footnote 1]} style service.
Testing the role of question format on how applicants complete PIP applications.
PIP personal appointees’ experiences of acting as an appointee.

We continue to deliver a rolling programme of behavioural insight studies, enabling us to provide rapid feedback to inform the design of future services.

Question 2

The impact of providing pre-assessment information to PIP applicants

Accepted Answer

Basis Social: Dan Clay and Rosemary Pierce-Messick.

Overview

Basis Social evaluated pre-assessment communication materials for applicants awaiting Personal Independence Payment (PIP) assessments. The study involved interviews with PIP applicants to understand their experiences and gather feedback on mocked-up pre-assessment letters for both in-person and telephone assessments.

The research aimed to identify how the level of information, style, and layout of these letters impact applicant preparedness, engagement, and anxiety, particularly considering different health conditions. Key findings highlighted what elements of the letters were effective and what aspects needed improvement. Overall, participants found the mock letters to be informative, practical, and improved from existing Department for Work and Pensions (DWP) communications at the time of the research. However, they suggested a more compassionate tone, improved accessibility and a clearer structure would help to improve the mock letters.

The research took place between January and March 2023.

Research context

This research project was commissioned by DWP and conducted by Basis Social, an independent research agency. The main goal was to understand if and how to improve written communications shared with applicants in advance of a PIP assessment. The PIP application and assessment process can be a stressful and anxiety-inducing experience, especially for people with mental health conditions and learning disabilities. DWP recognised that better communication has a role in making this process more manageable.

Information shared in advance, like pre-assessment letters, has the potential to help reduce anxiety and improve preparedness among applicants before and during their assessments. The research aimed to understand how these letters could best achieve this, considering applicants with different health conditions and socio-demographic characteristics.

The key research questions were:

Does varying the level of information provided prior to the assessment impact on applicants feeling prepared, their engagement and levels of anxiety?
Does varying the style and layout of the information provided prior to the assessment impact on applicants feeling prepared, their engagement and levels of anxiety?
How do pre-assessment communication needs vary for groups with specific communication needs? e.g. certain health conditions.

Key findings

Participants generally perceived the mock letters as relevant, practical, and an improvement in tone compared to previous DWP communications, making them feel more prepared and relaxed about the assessment. Knowing they could bring someone to support, for example, greatly reduced participants’ anxiety.
Despite overall improvement, the tone in parts of the letter were felt to have lacked compassion, with the phrase “you must attend” causing significant anxiety and being perceived as threatening. Participants suggested softer alternatives.
The letter was seen as quite long and repetitive, particularly regarding support sections and phone numbers. Although participants felt that most of the content was relevant, they identified the opportunity to streamline repetitive information.
Accessibility was noted by participants as a crucial area for improvement, especially regarding the PIP descriptors table being difficult to read for many, including those with dyslexia or anxiety. Participants requested options like digital or braille copies, and more detailed information on venue accessibility.
Key suggestions for improvement included enhancing the compassionate tone, shortening sentences and combining sections for better flow, ordering content logically (e.g., Before, During, After), improving accessibility, and tailoring the letter to the applicant where possible.

Methodology

This research project involved conducting 20 one-hour, in-person interviews with individuals who had already completed the PIP assessment process. Basis Social held interviews either at their office, or for those who found travel difficult, in the participant’s home. All participants were recruited from the London area.

During the interviews, participants were shown mocked-up letters created by the DWP, designed to represent communications sent before a PIP assessment. These mock-ups were based on existing letters but featured slight changes to their content and layout (for example PIP descriptors were added in, column formatting was added, as was the DWP logo).

Half the participants reviewed a letter for a telephone assessment, and the other half reviewed one for a face-to-face assessment.

Participants reviewed these letters while discussing with moderators what they found confusing, questions they had, the importance of different content, and how the letters made them feel in terms of preparedness, confidence, and anxiety. Following this discussion, they also had the chance to build an “ideal” letter by selecting and arranging content.

Findings explained

What worked well

Participants found the information in the mock letters to be relevant and clear in establishing expectations before, during, and after the assessment. This was seen by participants as helping people feel more prepared and therefore more relaxed. The tone was perceived as more empathetic than previous DWP communications at the time of the research in 2023, which participants had felt were like a “courts summons”. The format was considered adequate, with bolded headers and differentiated text alignment being particularly effective.

Information about support on the day, such as having a relative, a healthcare professional, or a foreign language interpreter present was considered very important to participants as something that could help reduce anxiety. However, participants noted confusion about the exact role the support person could play (e.g., speaking on behalf of the applicant).

What worked less well

The majority of participants scored the mock letter around 7/10, indicating room for improvement.

A significant source of anxiety for participants was the use of the phrase “you must attend this assessment”, which they perceived as harsh and threatening, especially for those with mental health conditions. Participants strongly suggested replacing this with softer wording like “if you can’t attend, please let us know. It doesn’t affect your claim” or “it is important that you attend this assessment”. They also raised concerns about what happens if a health condition prevents attendance on the day. Regarding the assessment duration, participants desired a timeframe, suggesting minimum and maximum estimations to reduce anxiety.

Though participants generally felt the content of the letter was relevant, they reported it to be quite long and repetitive. The contact details section was noted for repeating the DWP phone number multiple times. Participants saw sections on equality and diversity, and information on data protection as standard and expected, though unlikely to be thoroughly read.

Accessibility was a key area for improvement. Blind participants requested digital or braille copies of the letter. Participants perceived the PIP descriptors table as very important but widely considered its current format difficult to read and overwhelming, particularly for individuals with anxiety, dyslexia, or those partially sighted. Participants requested a re-design for better clarity and readability. Suggestions included: adding an introduction to explain the table’s purpose and how it is used; providing examples of how to answer questions, especially for fluctuating conditions (e.g. accounting for “worst days”); and simplifying technical terms. Some suggested moving the table to an annex to reduce the length of the letter, however, others flagged potential issues regarding digital readers accessing tables.

Critically, participants felt that the travel information section needed more detailed accessibility information for assessment venues, such as whether reception assistance is available or if there is a lift in the building. This was especially important for participants who are blind or partially sighted, or those with mobility conditions.

Participants also raised questions about the possibility of requesting alternative assessment types, such as home visits, telephone assessments for face-to-face invitees, or face-to-face assessments for telephone invitees. More confusion arose regarding the format of telephone assessments, as one participant had experienced a Zoom call when expecting a standard telephone call.

Other areas highlighted included the desire for a timeframe for receiving the decision after the assessment, as the lack of this caused anxiety. As the letter stated that they could request a copy of their assessment report, participants also felt this should be provided by the department as a matter of course (i.e. without necessarily being requested), especially if the claim is unsuccessful, to help with the appeals process.

Suggested overall changes to improve the mock letters

Shortening sentences and combining repetitive sections.
Logically ordering and signposting the content, ideally into ‘before’, ‘during’, and ‘after’ assessment stages.
Improving the tone to be more compassionate, moving away from harsh language like “you must…”.
Using clear, plain English.
Improving accessibility of the letter and the information provided.
Where possible, tailoring the letter to the applicant, perhaps including their health condition or relevant questions.

Question 3

Opportunities for signposting to support services across the health assessment journey

Accepted Answer

Basis Social: Dan Clay, Rosemary Pierce Messick and Dan Lemmon.

Overview

Department for Work and Pensions (DWP) commissioned Basis Social to investigate the experiences and perspectives of case manager (CM) and healthcare professional (HCP) assessor staff working in the Health Transformation Area (HTA)^{[footnote 2]} when offering applicants signposting to health related and wider support services. These CMs and HCPs are employed directly by DWP and, at the time of the research, worked with a small number of Personal Independence Payment (PIP) and Work Capability Assessment (WCA) applicants. A CM’s role is to review applications, book health assessments, and communicate decisions to PIP applicants specifically. A HCP’s role is to conduct health assessments as part of the WCA and PIP application process.

Five online focus groups lasting 1.5 hours were conducted in total, 4 of which were conducted with CMs and one with HCPs. The research took place between March and June 2023.

The research found that CMs have limited experience of signposting throughout the customer journey, whereas HCPs currently engage in more signposting, often feeling it is part of their duty of care. However, it is not a formal responsibility for either role, and subsequently - at the time of the research - there was no formal training for how, where, and when to signpost applicants to wider support services. Therefore, staff’s knowledge of the wider support services available and confidence to signpost applicants to them appropriately was varied, and often dependent on prior knowledge related to experience in a previous role. Ultimately, this led to inconsistent signposting practices amongst CMs and HCPs. Nonetheless, both groups generally saw value in signposting applicants to wider support.

The research highlighted potential opportunities, barriers, and enablers for signposting applicants to wider support at various stages of the customer journey for both CMs and HCPs. These opportunities are focused on moments where a customer’s needs are better understood or where there is direct interaction, but overcoming time pressures and providing formal training would be necessary for more widespread and effective signposting.

Research context

This work built on previous DWP research conducted by Basis Social in January 2023 with 76 Universal Credit, PIP, and New Style Employment and Support Allowance (NS ESA) customers ^{[footnote 3]}. That research focused on understanding the types of support accessed, needed, and desired by applicants at different stages of the customer journey. The research highlighted that customers would trust DWP to signpost them to health support and would welcome personal support that is tailored to their individual health and personal circumstances. Applicants could struggle to visualise their claim journey, making it challenging to connect support services to specific touchpoints in their journey. However, it was clear from the interviews that those currently struggling to manage health conditions would benefit from more immediate support during their initial interactions with DWP whereas those with less acute needs would be content with receiving support information at a later stage. In either case what was helpful was receiving this information in the context of a one-to-one interaction as opposed to in a follow-up email, letter or text.

Previous research had not fully explored the internal barriers, enablers, and opportunities that may exist for DWP staff when signposting disability benefit applicants to wider support. This behavioural insights project was therefore commissioned to address this evidence gap and sought to identify the staff-related barriers, enablers, and opportunities for signposting applicants to wider support across the health assessment journey.

Key findings

Both CMs and HCPs were familiar with the concept of signposting to support services and generally viewed it as important for providing good customer service and care. They believed it could improve customer outcomes and their own job satisfaction.
CMs had very limited experience with signposting applicants to wider support services, as it is not currently a formal part of their role. Signposting applicants to wider support services often only occurred in specific circumstances like safeguarding. HCPs reported signposting more regularly, primarily to health support services. This was often driven by a sense of duty of care related to their medical background rather than a formal part of their role.
A major barrier to CMs and HCPs signposting more often was that it was not felt to be a formal part of either the CM or HCP role. This lack of formal expectation contributed to a lack of dedicated training in how and when to signpost, resulting in limited knowledge and confidence, particularly for CMs regarding health-related support.
Participants felt there were more and less appropriate times to signpost. It was suggested that there were opportunities for HCPs to guide applicants to health support during the assessment, given their more comprehensive understanding of the customer needs and current support gained from the assessment.
CMs felt that their role in signposting should be focused to the end of the assessment process, as this is where they have the information available to them to accurately identify customers’ needs. CMs also identified the initial stages of the application process as an important opportunity to signpost applicants to health or advocacy support, but noted that this would require a change in process to allow CMs more interactions with customers earlier in the journey.

Methodology

The methodology for this research involved 5 online focus groups each lasting 1.5 hours, 4 of which were conducted with CMs and one with HCPs. A total of 15 CMs and 3 HCPs participated. These participants were recruited from the HTA.

The focus groups aimed to gather participants’ perspectives and experiences regarding signposting applicants as part of their current roles. Participants worked across the WCA and PIP benefit application processes: HCPs conduct health assessments with both PIP and WCA applicants, whereas CMs work exclusively with PIP applicants.

During the discussions, researchers used a standard journey map outlining potential interaction points with customers throughout the PIP or WCA application and assessment process. This map served as a guide to explore the barriers and enablers encountered when considering or undertaking signposting at different stages.

The research took place between March and June 2023.

Findings explained

Understanding, perspectives, and experience of signposting amongst case managers (CMs) and healthcare professionals (HCPs)

The research found that CMs had very limited experience with formal signposting as it was not a formal part of their role at the time of the research. While CMs were aware of the term ‘signposting’ and understand it as directing customers to information or services based on needs, their practical experience is often confined to specific situations like assisting with mandatory reconsiderations, appeals, or safeguarding. Many CMs assumed customers already had support in place.

In contrast, HCPs reported more regular signposting, predominantly to health support services, often doing so during the health assessment process. Although HCPs did not report a formal responsibility for signposting, this action was largely driven by a sense of duty of care related to their medical background. They typically signposted after gaining a comprehensive understanding of the customer’s medical history, conditions, and support needs during the assessment. This allowed them to identify gaps in service provision, and signpost where appropriate based on their existing knowledge of the range of services available.

Both CMs and HCPs generally believe signposting is important for providing good customer service and care. CMs are receptive to it becoming a formal responsibility in the future, anticipating that it would improve outcomes for the customer and could have a positive impact on their own job satisfaction by allowing them to support customers more effectively. HCPs already feel this responsibility due to their professional duty of care and typically had greater knowledge and confidence to signpost due to their medical training and experience. However, signposting is not felt to be a formal part of either the CM or HCP role. This lack of formal expectation also means there is a lack of specific training in signposting as part of these roles, resulting in limited knowledge and confidence, particularly for CMs regarding health-related support. In addition, there were concerns about how CMs and HCPs would find time to signpost due to the time pressures associated with delivering their existing role.

Summary of barriers and enablers to signposting across the customer journey

Participants felt there were more and less appropriate times to signpost within the customer journey. The assessment stage was viewed as the most comprehensive opportunity for HCPs to understand customer needs and signpost effectively, given their medical expertise. For CMs, opportunities were seen as currently existing later in the process when they have received more information about a customer. For example, when CMs call applicants that have failed to attend (FTA) an assessment, or when communicating decisions for complex cases.

Additionally, CMs felt that the start of the PIP application process (known as PIP1) when applicants first call DWP was an opportunity to signpost applicants to wider support more effectively. However, currently CMs do not interact with customers until their application is submitted. Therefore, it would require changes to the PIP application process for CMs to signpost effectively at the PIP1 stage.

A full breakdown of the barriers and enablers for CMs and HCPs to signpost to wider support at each stage of the customer journey can be found in Table 1 below.

Table 1: Barriers and enablers to signposting to wider support across the customer journey

Stage	Barrier	Enabler
Initial application stage (CMs)	Under current processes, there is no interaction with applicants, meaning no opportunity to signpost.	CMs feel it could be an opportunity to support customers as they complete their application.
Assessment booking (CMs)	The interaction is brief and focused on logistics, not support needs. CMs may lack the information needed to signpost effectively at this stage.	Opportunity to hear about or ask about accessibility or support needs.
Pre-assessment call (HCPs)	This interaction is rare and deliberately brief, focused on enabling a paper-based review to avoid a full assessment. HCPs felt it was not an appropriate time to identify needs and signpost.	Empty cell
Assessment (HCPs)	Time pressure significantly limits the depth of signposting conversations.	Seen as the most comprehensive opportunity to understand customer needs due to the nature of the assessment. HCPs feel a strong duty of care and motivation to help customers at this stage. The interaction is typically the longest of their interactions.
Post assessment (HCPs)	Both welfare checks and clarification calls are rare. The purpose of clarification calls for HCPs is to correct a mistake made during the assessment, rather than signposting.	Welfare calls are a good opportunity for signposting as HCPs understand needs and it aligns with their duty of care. Confidence may be higher as need has been identified.
Post assessment (CMs)	Post assessment calls are used only in specific circumstances, such as a FTA or to clarify something on an application. Signposting only on post assessment calls might mean missing other vulnerable customers who do not warrant this interaction.	FTA calls are seen as a good opportunity as FTAs can indicate a need for support to complete the process. CMs may feel more confident signposting based on this indicator.
Communicating decision (CMs)	The customers emotional state after receiving a decision can make signposting difficult or potentially poorly received. In addition, signposting to health services after disallowing a benefit can feel contradictory. CMs may feel less confident navigating these potentially negative interactions.	An opportunity for general signposting exists in the decision letter or during calls for complex cases or when customers contact them. At this stage, CMs have a good understanding of the customers’ needs, which can increase their confidence to offer tailored signposting.

Question 4

Exploring potential PIP applicants’ understanding of PIP eligibility

Accepted Answer

Basis Social: Tom Curran and Laura Hayter.

Overview

Basis Social explored people’s understanding of the Personal Independence Payment (PIP) eligibility criteria, the overall PIP process, and its purpose (in terms of who PIP is intended to support). The study was intended to determine how information, presented in different forms, could support people in making an informed decision about whether applying for PIP is the correct choice for them.

Researchers conducted 28 online depth interviews with individuals who were considering applying for PIP, using 4 different information resources: a layered HTML, 2 case studies, an eligibility checker, and a video. The study looked to understand what influence these different resources had on participants’ knowledge, attitudes, confidence in applying, and motivation to seek support. The research took place between July and September 2023.

Ultimately, findings revealed the varied effectiveness of the materials across different participant groups and conditions, particularly highlighting challenges for those with mental health conditions, and a lesser impact on those with prior experience of unsuccessful PIP applications.

Research context

The research project aimed to explore issues around applicants’ understanding of both the PIP eligibility criteria and the wider PIP process and purpose.

The Department for Work and Pensions (DWP) sought to understand how information could support people in making an informed decision about whether applying for PIP is the correct choice for them. Specifically, DWP wanted to learn:

how to set realistic expectations about how PIP is scored, emphasising that it is based on functionality rather than condition
the extent to which clarity can be provided on the different levels of entitlement to PIP
how to ensure information is a resource that enables customers to make a decision about whether to apply

Key findings

Prior to seeing the materials, most participants believed PIP eligibility is based on the type and severity of an individual’s health condition, rather than their functionality. There was a common belief that PIP was primarily for physical or more visible conditions, with uncertainty about eligibility for mental health or more “invisible” conditions.
Participants generally had limited understanding of the PIP scoring criteria, how decisions are made, and the different levels of entitlement, particularly for those without prior application experience.
Participants’ confidence in applying for PIP and understanding of their potential eligibility or entitlement was low before seeing the materials. Reasons for this included: concerns about their condition’s severity; questioning their ‘worthiness’ compared to others; and a lack of confidence in the fairness and reliability of the application process itself.
Motivation to access support for their application was often present before reviewing the materials, with people typically relying on informal networks like friends and family or organisations such as Citizens Advice. Some participants reported reluctance to seek support due to feelings of shame (in applying for a benefit) or a belief that others were in greater need.
After exposure to the materials, some participants reported positive changes in their knowledge, understanding, confidence, and motivation to seek support. Improvements in confidence were most notable when participants felt the materials better reflected their specific conditions or lived experiences.
Materials were more effective at increasing participants’ confidence and motivation to access support than at improving their knowledge and understanding of complex aspects like the functional assessment or scoring.

Methodology

Basis Social conducted 60-minute online interviews with 28 people who were considering applying for PIP. During each interview, participants were shown 2 of 4 different information resources designed to help people learn about PIP. These resources included:

A layered information HTML prototype designed to provide a comprehensive overview of the PIP process, eligibility, and entitlement criteria. It had detailed information about the individual activities and how they are scored. It was designed in a way that allowed participants to select the right level of detail for them, for example, using drop down features and hover over features explaining key definitions.
Two case studies (Mr X with a physical condition, Ms Y with a mental health condition) designed as prototypes to demonstrate eligibility and entitlement rates through detailed examples of scoring for the ‘preparing food’ activity. The order in which they were shown was based on relevance to the participant.
An eligibility checker: an existing online tool on GOV.UK that asks questions to determine the likelihood of eligibility and how to begin an application.
An animation video covering the PIP process, purpose, eligibility, activities, descriptors, scoring, and rates, created by editing existing GOV.UK clips.

The interviews explored participants’ thoughts and feelings about these materials, as well as any self-reported changes in their PIP knowledge, attitudes, and behavioural intentions after exposure.

A primary objective was to identify changes in interviewees’ knowledge, attitudes, and behavioural intentions after reviewing the materials. DWP was specifically interested in the extent to which different materials could improve participants’ understanding of PIP as a functional rather than conditional assessment, their knowledge of scoring and entitlement, their confidence in applying, and their motivation to access support. Changes were classified based on whether they were intended or unintended and desirable or undesirable, using the IN CASE framework.^{[footnote 4]}

Findings explained

Pre-exposure findings

Most participants initially believed that PIP eligibility is based on the type and severity of an individual’s health condition, rather than their functionality. There was a common perception that PIP was primarily for physical or more visible conditions like cancer or mobility issues. Some were uncertain if people with mental health or invisible conditions, like attention deficit hyperactivity disorder (ADHD) or Type 1 diabetes, were eligible. Participants often believed that only those with “severe” conditions, deemed “life impacting” would be awarded PIP.

Some participants with prior experience of applying for disability benefits had an understanding that the assessment related to their ability to do certain tasks. This, however, was not the dominant view. Some also viewed PIP as a reformed version of Disability Living Allowance (DLA) and transferred their expectations from the DLA application process – including lengthy forms and potentially subjective judgements – onto PIP.

In terms of knowledge of the PIP application and assessment process, most participants had limited understanding of the PIP scoring criteria, how decisions are made, and the different levels of entitlement. Many stated they had no idea how scoring worked or how it related to entitlement rates, often viewing the outcome as simply being awarded or rejected, rather than awarded at a standard or enhanced rate. Those who had applied before had slightly greater understanding of the scoring system but often did not trust the way in which assessors applied it. Understanding of how fluctuating conditions are scored was generally low, with some participants believing that it was necessary to present their condition at its worst in order for a claim to be accepted.

Confidence in applying for PIP and in their potential eligibility or entitlement was low across the research participants. Reasons for this low confidence included believing their condition was not severe enough, questioning their ‘worthiness’ compared to others, or feeling shame about applying for benefits. Participants with mental health conditions specifically worried their assessment might focus only on physical ability, not motivational impacts. Other negative beliefs came from those who had applied before and been rejected and so lacked confidence in the fairness and reliability of the assessment process and assessors.

Many participants were motivated to access support, typically relying on informal help from friends and family or organisations like Citizens Advice. However, some were reluctant to seek support due to shame or feeling like others were in greater need.

Participants’ responses were also influenced by existing beliefs and misconceptions about PIP and DWP, often stemming from media, social media, or personal stories. Beliefs influencing participants’ responses included a perception that the government was trying to get people off benefits. These contributed to an impression of a system potentially “stacked against applicants”.

Post-exposure findings

Across the materials tested, some participants reported positive changes in their knowledge, understanding, confidence, and motivation to access support. However, the extent and consistency of these changes varied depending on the material and the participant’s background.

Some participants showed improved understanding that eligibility is based on ability to perform tasks, rather than just having a condition. Improvements were most noticeable among those who had limited familiarity with PIP prior to the study. Despite this, many participants continued to focus on their health condition rather than their abilities to function when discussing eligibility. Concerns persisted, particularly among those with mental health, rare, or undiagnosed conditions, that their specific condition might still influence eligibility or assessor judgment.

Participants – especially those with low initial familiarity with PIP – reported gaining understanding regarding the application process, scoring, and entitlement rates. After some deeper questioning, however, some participants struggled to articulate what they had learned, and their understanding of complex areas (like how fluctuating conditions or motivational issues are scored) remained low.

Participants who had not applied for PIP before reported increased confidence in applying and potential eligibility for PIP. This was most pronounced when they saw their own conditions or lived experiences reflected in the materials, reassuring them that they might be eligible. In contrast, participants with mental health conditions sometimes reported no change or even decreased confidence, feeling the materials did not adequately reflect their experiences. Similarly, those with pre-existing, negative views, particularly unsuccessful prior applicants, showed no evidence of having changed attitudes or levels of confidence.

Motivation to access support increased after participants reviewed the materials. Many indicated that their next step would be to seek formal support from organisations like Citizens Advice. Participants appreciated the video’s mention of support agencies, and there were calls for clearer signposting to both formal and informal support, especially for those with literacy needs.

Different materials had varying impacts. For example, the case studies boosted confidence when they were relatable to the participant, while participants praised the video for explaining scoring and entitlement clearly. The overall effectiveness of the materials was often moderated by participants’ prior experience with PIP applications and the nature of their disability or health condition.

Question 5

Testing the concept of a Health Impact Record in supporting PIP applications

Accepted Answer

Basis Social: Victoria Harkness, Erica Harrison, and Deepa Ramanathan.

Basis Social designed and tested a prototype Health Impact Record (HIR). The HIR was proposed by the previous government in the ‘Transforming Support: The Health and Disability White Paper’ as a new way for people applying for disability benefits like Personal Independence Payment (PIP) to provide more detailed evidence about how their condition varies over time, potentially improving how fluctuating conditions are captured in the application and assessment.^{[footnote 5]} Research took place in September 2023.

Basis Social engaged 2 key audiences in this research: Healthcare professionals (HCPs) working as assessors for the Department for Work and Pensions (DWP) in the department’s in-house Health Transformation Area (HTA), and people with fluctuating conditions who have experienced the disability benefits system (referred to as customers in this summary). Basis Social drew on existing DWP PIP application material and charity templates^{[footnote 6]} at the time of the research to design 2 prototype HIRs – a questionnaire and a diary. The questionnaire was filled out at one point in time, whilst the diary consisted of 4 entries to be completed over a period of time. The research aimed to understand whether the prototype HIRs improved HCPs’ understanding of the functional impacts of fluctuating conditions, and if the captured information was relevant for assessing daily living tasks. For customers, the objectives were to determine if the HIR allowed them to explain the range and impacts of their health conditions, and to identify any potential issues with its use. The research also gathered feedback from HCPs and customers on how to improve the HIR’s usability and whether it could lead to an improved assessment experience.

Customers generally saw the principle of the HIR as enabling them to more fully represent fluctuating conditions. HCPs, however, expressed concerns about increased administrative burden and the feasibility of interpreting potentially extensive information. Both groups favoured an online format but acknowledged the need for offline alternatives. Participants had varied preferences towards the HIR prototypes, and ultimately providing choice between diary and questionnaire format was seen as important. The research highlighted – should HIRs be implemented - the importance of clear guidance, managing the length and frequency of HIR entries, and ensuring the process does not lead to a longer PIP application process (potentially delaying receipt of payments).

Research context

Previous research commissioned by DWP and conducted by Basis Social, revealed the difficulties faced by applicants in accounting for fluctuating conditions when applying for health-related benefits.^{[footnote 7]} In the 2023 Health and Disability White Paper,^{[footnote 8]} the previous government proposed the introduction of the Health Impact Record (HIR) to help address this issue.

The HIR was one proposed means by which customers for health-related benefits such as PIP could provide more evidence on how their condition (and the related impacts on their life) varies over time. This was intended to provide assessors with a more detailed view of a customer’s experience, leading to more accurate benefit assessment outcomes.

DWP commissioned Basis Social to design and test early prototype HIRs with 2 key audiences:

HCPs working as assessors for DWP in the HTA, part of the Health Transformation Programme.
People with fluctuating conditions who have experienced the disability benefits system (at the time of the research 7 of the 10 participants were in receipt of PIP and 3 participants had applied unsuccessfully for PIP but had previously received other health-related benefits, such as Disability Living Allowance).

Key findings

Among both customers and HCPs there was widespread support for the principle of a HIR as a way to better reflect the challenges that disability benefit applicants with fluctuating conditions face, and thus support an improved assessment experience - with customers particularly supportive of the idea of HIRs.
This said, both customers and HCPs expressed concerns around introducing more “paperwork” into what they considered an already administratively burdensome process. They suggested clear guidance was needed on how fluctuations are to be reported and interpreted to ensure trust in the process on both sides, given the complexity and variability in describing them.
Customers preferred the freedom and flexibility of the diary, which enabled them to communicate the full range of their condition(s) and impacts. HCPs preferred the more structured format of the questionnaire, which was felt to better map onto existing assessment criteria for PIP. Both customers and HCPs highlighted the importance of giving customers a choice between the questionnaire or diary based on their preference and understanding of which prototype is more relevant for their fluctuating condition.
Both audiences favoured a HIR that could be accessed and completed online but appreciated the need for alternatives for those who are less digitally confident, or who lack access to the necessary technology.
For both customers and HCPs there was felt to be a risk that the HIR could offer too much flexibility. The length and number of entries, and the period of time in which entries could be submitted, should be more clearly stipulated.
Participants stressed that the time taken to complete and process a HIR should not delay payment of benefits. There was widespread acknowledgement across both audiences that the process is already subject to delays, and customers stressed that this should not be exacerbated.

Methodology

This research was broken down into 2 stages and involved a qualitative methodology. The aim of this research was to gather early feedback on the value, use and design of a future HIR as a route for improving the assessment experience for disability benefits.

The first stage involved designing a diary and questionnaire prototype, drawing on existing DWP PIP application material and charity templates. These were then populated with data based on 2 fictional customers for ‘Person A’ and ‘Person B’, to ensure we reflected a range of typical fluctuating conditions. The questionnaire focused on one single activity - ‘eating and drinking’ - and diaries consisted of 4 entries, varying in length. Both prototypes were based on a person having multiple conditions and assessed the impact of a fluctuating condition on daily living.

In the second stage, these prototypes were tested in 2 online focus groups (involving 9 HCPs) recruited by DWP from within the department’s in-house HTA. They had a range of medical specialist knowledge (e.g. nursing, physiotherapy) and all had experience as assessors working for DWP, covering both paper- and telephone-based assessments.

The prototypes were then tested in 10 60-minute depth interviews with people who have had experience of applying for health-related benefits, recruited by Open Inclusion (a disability and inclusion organisation) from members of their panel, covering a range of health conditions and other demographics.

The key research questions for HCPs were:

Does the prototype HIR help HCPs to understand the functional impact of a fluctuating condition?
Is the customer information captured by the prototype HIR able to be used and/or relevant when assessing daily living tasks?

For customers key questions were:

Does the prototype HIR allow individuals with fluctuating conditions to fully explain the range and impacts of their condition during a health assessment?
Does the prototype HIR present any issues to individuals with fluctuating conditions (e.g. too much time needed to complete)?

For both audiences they were:

What could be amended in the prototype HIR to improve its usability?
Is the use of the prototype HIR likely to create an improved assessment experience?

Fieldwork was conducted online using Microsoft (MS) Teams in September 2023.

Findings explained

Overall views on the principle of the Health Impact Report (HIR)

There was widespread support for the HIR across both customers and HCPs. Both groups agreed that the HIR could better reflect the challenges faced by disability benefit applicants with fluctuating conditions and potentially improve the assessment experience, with customers expressing particularly strong positive views. Customers felt it would provide an opportunity to fully explain their conditions and the variation in their symptoms, addressing a perceived gap in the current process which they believe focuses on their “worst day”. HCPs also acknowledged the limitations of the existing assessment process in capturing the variability of conditions, suggesting the HIR could streamline the process by reducing the need for clarification calls.

However, despite this general support, both customers and HCPs voiced concerns about the potential for increased “paperwork” in what they already considered an administratively burdensome process. They emphasised the need for clear guidance on how fluctuations should be reported and interpreted to ensure trust and accurate understanding on both sides, given the subjective nature of describing these variations. Furthermore, concerns were raised regarding the time taken to complete and process the HIR and whether the information provided would be fully considered by assessors with limited time. A potential barrier to the HIR’s success was also identified in the apparent tensions and lack of trust between DWP and customers, with customers fearing that disclosing abilities during “good” periods might negatively impact their claims.

Prototype preferences: diary vs. questionnaire

Most customers favoured the diary format due to its freedom (in comparison with existing forms) and flexibility in describing the full range and impact of their conditions over time. They saw it as a new and less repetitive way to communicate their experiences, focusing on what was most important to them and potentially including the emotional impact of their condition. In contrast, HCPs preferred the more structured questionnaire format, as it mapped better onto the existing PIP assessment criteria and was perceived as a more organised version of the PIP2 form. Given these differing preferences, the research highlighted the importance of offering customers a choice between the diary and the questionnaire based on their individual needs and the nature of their fluctuating condition.

Preference for online format with crucial need for offline alternatives

Both customers and HCPs generally favoured an online format for the HIR for its accessibility and flexibility. Customers felt an online version would be easier to complete, especially for those with difficulties in writing, and would reduce the risk of losing paperwork. HCPs also preferred digital submissions due to past issues with illegible handwritten documents. However, there was a strong consensus that offline alternatives, such as paper-based formats, must be available for individuals who lack digital confidence or access to technology.

Concerns regarding overly flexible entry specifications

A key concern from both customers and HCPs was that the initial HIR prototypes offered too much flexibility regarding the length, number, and submission timeframe of entries. This open-endedness was seen as carrying the risk of customers producing a large volume of data that assessors would not have sufficient time to process. To mitigate this, the research indicated a need for clearer stipulations and limits on these factors. Suggestions included character limits for free-text entries, clearer guidance on when to complete a new entry (e.g., when symptoms change), and a recommended maximum timeframe for completing entries, with one to 3 months being considered appropriate.

Critical need to prevent delays in benefit payments

A primary concern for customers was that the introduction of the HIR should not cause further delays in the payment of their benefits. There was widespread acknowledgement that the current system is already subject to delays. Customers generally preferred either completing the HIR alongside the existing PIP2 form for simultaneous submission or after the PIP2 form had been submitted while their claim was being processed, to avoid prolonging the waiting time. HCPs were divided on the most beneficial point of integration but also recognised the importance of avoiding delays.

The research identified several challenges, including the subjectivity and variability of language used to describe fluctuations. Both customers and HCPs highlighted the lack of nuance in terms like ‘good period’ and ‘bad period’ and emphasised the need for clear guidance on how to report and interpret these descriptions. Trust issues between customers and the DWP were also identified as a potential barrier. Some customers feared that disclosing abilities during ‘good’ periods would negatively impact their claims. Some HCPs expressed scepticism about the accuracy of customer-provided information and favoured third-party medical evidence. Finally, there were varied perspectives on how the HIR should be integrated into the current assessment process, with differing views on whether it would be most beneficial at the initial claim stage or later. Clear guidance for both customers and assessors on the value of disclosing information about both ‘good’ and ‘bad’ periods, and how this information would be interpreted, would be crucial for the HIR’s success if implemented.

Question 6

Testing online PIP eligibility information materials

Accepted Answer

Basis Social: Victoria Harkness, Erica Harrison, Emma Martinez-Daniel.

Overview

Basis Social explored the ways in which new, online information materials could improve first-time Personal Independence Payment (PIP) applicants’ understanding in and confidence of PIP eligibility criteria and the wider application process. The purpose was to establish how different types of information resources could influence customer behaviours and to explore creative approaches to the types of resources that could support potential applicants at the early stage of considering an application. This project took place between November 2023 and March 2024.

Researchers tested the impact of a mock PIP website with new and existing informational materials through qualitative interviews with 24 people considering applying for PIP. A small group of 5 of these participants looked at the existing GOV.UK PIP website, as it was at the time of the research, instead of the mock site to compare its impact.

Key findings indicate that the mock website significantly enhanced understanding of eligibility criteria, the assessment process, and scoring system, using features like an eligibility checker, case studies, and embedded videos. Participants particularly valued the ability to relate their experiences to provided examples and found the layered information and multiple formats helpful. However, applicants’ understanding of how to apply was still somewhat limited due to information gaps regarding the overall application process, timelines, and steps involved in applying for PIP. Overall, the findings suggest that a single, comprehensive site could help to clarify PIP eligibility requirements and reduce unnecessary applications.

Research context

The goal of the research was to test new, online information materials to determine their potential impact on the confidence and understanding of PIP eligibility criteria and the application process among potential first-time applicants. This project built upon the previous study on Exploring potential PIP applicants’ understanding of PIP eligibility which is also included in this compendium.

The key research questions were:

To what extent could new materials on the GOV.UK page influence applicant confidence and decisions to apply for PIP?
How can these information materials improve people’s understanding of PIP, in particular:
- understanding of eligibility criteria
- understanding of the application process and different steps involved
- understanding that PIP is based on functionality rather than condition
- understanding of how PIP claims are assessed and scored
How can these information materials influence applicant understanding of what information and/or evidence is important to provide in the application?
How can these information materials most efficiently make information accessible and relatable to people with mental health conditions?

It is important to note that this research was not intended to directly inform content changes to existing digital platforms like GOV.UK. Instead, its purpose was to establish how different types of information resources could influence customer behaviours and to explore creative approaches to the types of resources that could support potential applicants at the early stage of considering an application. The materials tested did not adhere to standard GOV.UK design requirements.

Key findings

First time potential PIP applicants came to the process with generally low understanding of PIP (e.g. believing it to be a means-tested benefit) and their eligibility – the information tested did much to improve understanding.
The research showed that a single site, combining new and existing information sources, could do a lot to improve confidence and understanding prior to officially beginning an application, helping to ensure suitable applications and stem unsuitable ones.
Improving general understanding of PIP – including assessment and eligibility – allowed potential applicants to more accurately identify the key information to include in an application, such as highlighting the effects of a condition rather than the condition itself.
Tested materials, such as the case studies, helped potential applicants relate (or not) to eligible cases, illuminating their potential (in)eligibility. The eligibility checker was also seen as a useful ‘first step’ to establishing eligibility but it lacked some necessary nuance.
Offering audio-visual content was seen as accessible and approachable. Clearly labelling videos as an alternative to text could save potential applicants time and avoid confusion. A step-by-step customer journey would also increase understanding of the process.
Participants felt that the existing GOV.UK PIP website, at the time that the research was undertaken, could result in more misunderstandings and misplaced confidence (in relation to eligibility) than the mock website, primarily because it had less detail. Conditions and their effects are nuanced, and generalisations leave participants unsure of their eligibility. ^{[footnote 9]}

Methodology

Stage 1 focused on designing a mock PIP website. This involved creating a mock site that included various informational materials including: an eligibility checker (included from the existing GOV.UK PIP website); videos covering information about PIP (edited into smaller clips and placed contextually); case studies showing how someone’s health condition affects them (updated with images, bold text, and examples for low motivation and fluctuating conditions); and a layered information HTML protype. The layered HTML was designed to provide a comprehensive overview of the PIP process, eligibility and entitlement criteria using detailed information and features like dropdowns and hover text.

Stage 2 consisted of 24 face-to-face interviews with individuals considering applying for PIP for the first time. Participants were recruited to represent a range of conditions and demographics. During the interviews, participants first discussed their background (including any conditions or disabilities and impact on their lives) and existing understanding of PIP. They then viewed and discussed either the new mock website (19 participants) or the existing GOV.UK website (5 participants). This allowed the researchers to test the new materials and also compare their impact on understanding and confidence against the existing information. The interviews explored participants’ reactions to the sites and how their understanding and confidence about applying for PIP were affected.

This research took place between November 2023 and March 2024.

Findings explained

Pre-exposure findings

Before engaging with new information materials, participants typically had a basic, often inaccurate, understanding of PIP. There was a common misconception amongst participants that PIP is means-tested. Some also incorrectly believed they needed a referral (e.g. from a medical professional or the Department for Work and Pensions (DWP)) or that their general practitioner (GP) would need to contribute to their application.

Most participants were very early in the process of considering applying for PIP, resulting in low confidence in their understanding of both the application process and the eligibility criteria. Those with previous experience applying for health-related benefits (like Disability Living Allowance or applying for PIP for someone else) tended to have slightly more confidence, but it was still generally low.

Almost all participants expressed very low confidence in their ability to assess their own eligibility and entitlement. Several factors were identified to have contributed to this: not yet having researched information about PIP eligibility in depth, hearing stories from friends or online about others who had applied for PIP unsuccessfully, and a belief among some participants with previous experience of health-related benefit claims that outcomes could be arbitrary or unpredictable. Some with complex and/or ‘invisible’ conditions have had negative experiences, including challenges in receiving a diagnosis and a perceived lack of recognition of their condition by ‘the system’ (including welfare benefits).

Post-exposure findings: impact of testing materials on understanding

Participants found the eligibility checker to be a useful first step in considering an application, noting that it could save time. Most participants found it straightforward to use and understand. A ‘likely to be eligible’ result was often reassuring and encouraged some participants to consider applying. However, participants sometimes had difficulty matching their own experiences to the listed criteria, particularly regarding the frequency and severity of symptoms or the ‘knock-on effects’ of performing certain activities.

Participants generally found the information on the mock website to be well structured, intuitive, and in a logical order. The language used was described as easy to read, user-friendly, clear, simple, and concise. The presentation, including breaking information into smaller sections and using hyperlinks, was well-received. The dropdowns for activity definitions were particularly useful for providing clarity on DWP’s specific criteria without making the page overwhelming.

Participants considered case studies to be highly valuable, helping potential applicants relate to or contrast with the featured stories, which aided in assessing their own potential eligibility. They found the case studies to “humanise” the process and “demystify” the assessment stage. Participants suggested that case studies could be improved by a clearer connection to the impact of mental health conditions. While the mock site covered mental health, there was felt to be a lack of sufficient representation of different conditions.

Participants appreciated videos as an accessible and approachable alternative to reading lengthy text. Participants described the videos as clear, concise, and detailed, in a way that could help prevent applicants from missing important information. They were considered a particularly important option for individuals whose conditions might affect literacy or information processing. Participants preferred the videos to be embedded directly on the website rather than the DWP YouTube channel, of which they were generally unaware. Suggested improvements related primarily to signposting and managing expectations of users as to what information the videos contained.

Post-exposure findings: applicants’ confidence and decision to apply for PIP

The mock website significantly improved the understanding of PIP eligibility for most participants interviewed. Participants also gained a better understanding of assessment and scoring criteria.

Post-exposure, participants were more likely to understand the need for evidence detailing their day-to-day difficulties and explaining how the condition affects them, rather than just providing proof of diagnosis.

The improved understanding led to participants feeling more confident about whether they were eligible for PIP. However, many still struggled to exactly match their experiences to the specific criteria. Furthermore, information about the overall application process, timelines, and steps involved in applying for PIP was still felt to be incomplete in the materials shown. This suggests that while eligibility and assessment criteria were clearer, the practical ‘how to apply’ journey remained a point of uncertainty and potential anxiety.

The attempts to clarify eligibility for mental health conditions and fluctuating conditions had mixed success. While participants were aware that mental health conditions were considered for PIP, the focus on physical aspects in activities and case studies caused them to be confused about how mental health would be assessed and scored in practice. Participants with fluctuating conditions did not fully grasp the ‘majority of days’ element from the relevant case study. People were also unclear on how PIP assessments would account for situations where someone can perform an activity, but it has negative repercussions in the hours and days that follow. These areas reflect where additional information might help improve confidence.

Viewing the mock website strongly influenced participants’ decisions on whether to continue their PIP journey. Some whose questions were answered decided to look into PIP further or apply soon; others, who realised they likely weren’t eligible, decided to look for alternative support.

Interviews with a small number of participants who viewed the existing GOV.UK PIP website (as it was at the time of the research) indicated that this group experienced a smaller shift in confidence and largely maintained their initial views, in comparison to participants who viewed the mock PIP website. This suggests that the content tested on the mock website could help to clarify understanding of PIP eligibility criteria. ^{[footnote 10]}

Question 7

Understanding the needs of PIP applicants to inform a ‘Help to Claim’ style service

Accepted Answer

Basis Social: Victoria Harkness, Dan Lemmon.

Overview

Basis Social explored what a potential Personal Independence Payment (PIP) ‘Help to Claim’ (HtC)^{[footnote 11]} style service could look like from the perspective of applicants, and possible barriers to its use.

Researchers conducted qualitative interviews with 16 PIP applicants and held one co-creation workshop with a further 4 PIP applicants, supplemented by 2 follow-up interviews. The study explored challenges that applicants face when applying for PIP, their prior experiences accessing support, and their thoughts on what a HtC service should look like. Research took place between July and August 2024.

The findings indicate that the PIP application, particularly the PIP2 health information gather form and assessment, is widely considered challenging, with vulnerable individuals facing additional complex and intersecting barriers. The research shows strong support for an independent HtC service, with participants favouring options tested, like helplines, appointments, or a dedicated representative, depending on their individual needs and preferences. There was no consensus from participants on whether a single or multiple third-party provider would be best, but participants agreed the service should be independent from the Department for Work and Pensions (DWP). There were some concerns expressed about the HtC service’s potential capacity to meet demand, and its accessibility.

Research context

Previous research has shown that many PIP applicants find the application process challenging and need guidance and support throughout its various stages.^{[footnote 12]} Transforming the PIP service to create a better applicant experience forms part of the Health Transformation Programme’s work to modernise health and disability benefit services.

To inform early thinking around options for offering support in the transformed PIP service, DWP commissioned Basis Social, to conduct exploratory research around a ‘Help to Claim’ style support service for PIP. The overall aim of this research was to understand what a dedicated support service for PIP could look like from the perspective of PIP applicants, what barriers might exist to using such a service, and how these barriers might be addressed. Key research questions included investigating how applicants currently interact with support, what they would want a dedicated support service to look like, and the barriers and facilitators affecting whether and how they would access such a service.

Key findings

The PIP application process was seen as challenging overall, particularly the PIP2 health information gather form and the interview or assessment stages. There were a wide range of barriers that made it difficult for research participants to complete the application process, with complex and intersecting barriers faced by more vulnerable participants (e.g. homelessness, legal proceedings, English as an additional language).
There was clear support for a service of the type proposed. Participants reacted positively to the idea of the service in principle. It was felt to have the potential to make the claims process less challenging for customers, helping to ensure people complete the process and improving the quality of applications first time around.
Of the service options presented – third-party helpline, an appointment, or a dedicated third-party representative to support through the journey – participants could see value in each. Having different ways to seek support, dependent on individual need, was seen as logical. Participants particularly liked the option of having a dedicated representative to provide support throughout their application journey and be a consistent point of contact.
Participants felt any HtC service should be independent from DWP. There was less consensus over whether the service should be delivered through a single third-party national provider, or through multiple providers. Whilst the former was seen to offer more consistency and simplicity, the latter was felt to have the potential to offer higher quality specialist support specific to different disabilities and health conditions.
Any HtC service would need to offer flexibility. Participants liked the idea of being able to access a HtC service in a way that best suits them and their accessibility needs (whether face-to-face, telephone or online).
There was some concern around a HtC service’s capacity to deliver. Lengthy wait times could undermine its effectiveness. There was some scepticism as to whether DWP could fund or deliver a universal service of this size and nature, and whether it would therefore be available to everyone.

Methodology

The research was conducted in 2 phases:

Phase 1 involved 16 60-minute in-depth telephone interviews with PIP applicants, including 5 participants with additional vulnerabilities. These interviews sought to:

understand individual needs and how these could be met within a dedicated support service
map the behavioural barriers and facilitators to accessing a support service
identify how such a service might be structured and what support it might deliver

Phase 2 consisted of a 90-minute online co-creation workshop with 4 PIP applicants, supplemented by 2 in-depth telephone interviews to meet accessibility needs. The aims of this phase were to test a service concept developed by DWP based on Phase 1 insights, and to understand the implications for the service proposition regarding communications and the nature or form of support.

Given the explicit focus on behaviour (service access), the research design and analysis were informed by COM-B.^{[footnote 13]} The COM-B model is a behaviour change framework that posits 3 essential components are needed for behaviour (B) to occur: capability (C), opportunity (O), and motivation (M). By assessing these elements, policymakers can better understand behaviour and design effective interventions.

Additionally, co-creation research materials were created using principles adapted from Human Centred Design.^{[footnote 14]}

Findings explained

Experiences of the PIP journey

Participants identified the PIP2 form and the assessment or interview stages as the most challenging points in the application process. Participants struggled with understanding how to answer questions, how their application was scored, and what evidence to include on the PIP2 form, which was also seen as too long. The assessment or interview stage was difficult because participants were often worried beforehand due to not knowing what to expect. Furthermore, they felt staff could lack empathy and understanding, and that the subject matter could be emotionally triggering.

We identified a diverse range of barriers to completing the application process and framed them using the COM-B model. These barriers included:

Physical capability: Symptoms from a disability or health condition made it physically harder to complete the process, such as chronic fatigue making it difficult to complete the form without long breaks.
Psychological capability: Some participants lacked knowledge about the welfare benefits system and had limited understanding of PIP and available support.
Physical opportunity: Participants struggled to complete the PIP2 form and gather necessary evidence within the allowed time.
Social opportunity: Social isolation and a lack of informal support networks meant some participants had to manage their health condition and the PIP application alone. Some found it very difficult to ask for help.
Reflective motivation: Some participants had never envisioned themselves needing to apply for welfare benefits or state support, making it emotionally challenging to engage with the process.
Automatic motivation: Various parts of the process triggered negative emotional responses for some participants, making it harder to engage and complete the application.

Experiences accessing support and initial thoughts towards a potential ‘Help to Claim’ style service

Participants reported that they sometimes accessed formal support from sources like Citizens Advice, condition specific charities (e.g., Kidney Care UK), and local welfare benefits advisers. This formal support was seen as a useful source of information and provided both emotional and practical help, primarily with filling in the PIP2 form. Formal support helped participants understand what information was relevant to include and helped people with English as a second or other language (ESOL) overcome language barriers.

Participants were supported informally by friends and family who they perceived to be knowledgeable or good at administrative tasks. They provided informational and practical support, for example with completing forms, and provided emotional support to applicants throughout the PIP process.

The research found that there was low awareness amongst participants of available support, meaning some do not access support at all. Even participants with prior experience in the welfare benefits system were unaware of support services for PIP, with some stating they didn’t know support was available because they weren’t told. Others were reluctant to ask for help because they found it difficult to talk about their struggles, particularly with a stranger, sometimes stating they would only seek support if they were unsuccessful with their application.

Participants valued the idea of being able to access support for:

clarity on the process and progression of their claim
helping to manage expectations and reduce anxiety
managing tasks like filling out the PIP2 health information gather form and preparing for assessments
emotional support and reassurance, which could come from informal networks or professionals (although sometimes practical support indirectly eased the emotional burden)

Some participants, particularly those with additional vulnerabilities, had wider support needs relating to managing health, housing, debt, addiction, and relationships, and complex circumstances like homelessness or legal issues.

Participants saw a dedicated HtC service as positive in principle. They felt that, with knowledgeable advisers, a HtC service could make the claims process less challenging, particularly for those with more complex needs. Participants also noted that a HtC service could potentially lead to better quality applications initially, which might reduce the need for Mandatory Reconsiderations and appeals.

However, participants raised concerns about how such a service would be delivered in practice. They worried that the service’s effectiveness could be undermined by insufficient capacity and the risk of lengthy wait times. There was scepticism about DWP’s ability to fund or deliver a universal service available to everyone, as well as concerns about staff being adequately trained to understand the complexities of unique health conditions and support needs. Participants were also concerned about how the service could be accessible in ways that suited specific needs, and the possibility of automated rather than personal support.

The research found that participants had a strong preference for any HtC service to be separate from DWP as an independent body was seen as inherently more trustworthy.

Ideas for accessing a potential ‘Help to Claim’ style service

Three hypothetical options were presented for how applicants could access support from a potential HtC service: a third-party helpline, appointments with a third-party adviser, and a dedicated third-party representative.

A third-party helpline was seen to be useful for obtaining immediate, lighter-touch support and getting answers to quick questions. Participants strongly emphasised the importance of speaking to a human rather than an automated service or artificial intelligence (AI) chatbot, especially for detailed or complex queries. They also felt that flexibility in how to engage with the helpline (e.g., telephone, webchat) was crucial to accommodate different communication preferences and accessibility needs. For example, someone with hearing loss might prefer webchat, while others might find webchat too impersonal.

Participants also saw value in appointments with a third-party adviser, particularly for receiving practical support, such as help with completing the PIP1 or PIP2 forms. However, some participants struggled to clearly differentiate this option from the helpline offer, feeling the helpline could potentially serve the same purpose. There was a preference for video or telephone appointments over in-person ones, often due to physical health challenges or anxiety which mean they find it less daunting and overwhelming to discuss sensitive issues from home.

Having a dedicated representative providing end-to-end support was felt to be the most desirable of the 3 options discussed, as it would enable an applicant to have someone who understands their case throughout and advocates for them. However, there was concern over how achievable it would be to offer this kind of (presumably) more resource-intensive service to all.

Workshop participants were also asked to reflect on 2 hypothetical options that the DWP could consider when it comes to delivering a potential HtC style service: a single or multiple third-party providers.

A single national provider was felt to offer simplicity and consistency, highlighting easier promotion, a single point of access (a ‘front door’ approach), and the ability for advisers to assist a wide range of people, as benefits. A potential concern was that a single provider might lack sufficient expertise across the vast range of disabilities and health conditions experienced by applicants.

Access to multiple providers had the potential to offer more tailored and specialist support specific to individual conditions. People had concerns, however, about the service being fragmented, being inconsistent, and the burden on applicants with multiple conditions who might need to engage with several providers. Some feared it was potentially unrealistic for multiple providers to cover the full spectrum of applicants’ conditions.

Question 8

Testing the role of question format on how applicants complete PIP applications

Accepted Answer

Basis Social: Dan Clay and Deepa Ramanathan.

Overview

Basis Social explored how the format of Personal Independence Payment (PIP) application form questions could affect the information that applicants provide in the medication and therapies section of the PIP2: ‘How your disability affects you’ form.

The research involved 30 in-depth interviews with members of the public and a group discussion with 5 Department for Work and Pensions (DWP) staff members. The research took place between August and October 2024 and so findings are based on versions of questions in the forms at that point in time.

Findings indicated that the structured format of the question tested from the paper form was preferred for its clarity and guidance, due to its tabular structure, but could feel restrictive. The free text format of the question tested from the digital form allowed for more detail but was felt to lack structure and prompts, potentially leading to omissions of necessary information. Both members of the public and staff suggested improvements to the formatting of the question in the digital form, including separating medication and treatment sections, including examples, and having a format that would allow applicants to add additional medications/treatments as needed.

Research context

The research project was initiated following work as part of DWP’s Evaluation Strategy for the Health Transformation Programme (HTP). Interviews conducted by DWP analysts with customers and PIP agents indicated that differences in formatting between the digital and paper PIP application forms could be affecting how customers complete them.

One area of interest for DWP was the removal of the medication/therapies table in the digital form at the time of the research, which (within the paper form) had prompted users for details like dosage and duration. Feedback from staff suggested this change, whilst having been thoroughly tested via user research, had the potential to lead to applicants providing less clarity about the support they require for managing their conditions.

To investigate this, DWP commissioned Basis Social. The core aim of this research was to understand if the format of the medication/therapies question might influence the information applicants provide and whether this, in turn, could affect the decisions made by DWP staff. Key questions explored whether removing the table affected the information provided and why, whether applicants approached the section differently across formats, and if staff believed the format change hindered applicants from providing the necessary information for quality decisions. The study included members of the public (referred to as ‘participants’) and DWP staff comprising heath care professionals (HCPs) and case managers (CMs) (collectively referred to as ‘staff’). The research took place between August and October 2024.

Key findings

Participants preferred the question from the paper form for its structured approach, and its use of examples helped them understand the expected level of detail. However, it limited the level of detail they could provide, making it feel ‘restrictive’ for some.
Although the question from the digital form provided space to elaborate, the lack of a predefined structure meant participants were unsure how to structure their responses, with some fearing important details could be missed by applicants.
Staff felt the question from the paper form helped capture the required information (i.e. dosage and frequency of medications and treatments) most accurately due to its tabular structure. The specific prompts in the format made it more accessible compared to the question from the digital form.
The element of the digital form question that staff drew out was the open text box, which they felt could lead to applicants including irrelevant information and omitting necessary details.
When it came to suggesting improvements to the question in the digital form, participants and staff prioritised separating the medication and treatment sections (including prompts for dosage and frequency), including examples, and having a format that would allow applicants to add additional medications/treatments as needed.

Methodology

There were 2 phases to this research project.

Phase 1 consisted of 30 x 30-minute in-person in-depth interviews. These interviews were conducted with members of the public who had a long-term health condition and/or disability. While likely to be eligible for PIP, these participants were not current or past applicants. In this phase, we aimed to test the medications/therapies questions from both the paper and digital forms with each participant and to understand the challenges or expectations based on their reflections on different response formats.

It is important to note that both question formats were presented to participants on paper. The comparison was between the layout, structure and content of the questions rather than the experience of completing the questions digitally and on paper.

Phase 2 involved a single 90-minute in-person group discussion with 5 DWP staff. These staff members - CMs and HCPs - were recruited internally by DWP through the HTP’s in-house Health Transformation Area (HTA). The aims of this phase were to understand if removing the medications table affects the quality of information provided, based on staff assessment of forms, to identify patterns in information gaps between the formats and their potential impact on decision-making, and to explore how to reframe the question in the digital format to ensure applicants provide accurate information.

To reduce bias, the researchers varied the order in which the questions from the paper and digital forms were shown to participants and used a dummy stimulus as a cognitive break between them.

The research took place between August and October 2024 and so findings specifically relate to the question formats at that time.

Findings explained

General public perspectives on the 2 question formats

Participants generally found the question from the paper form easy and straightforward due to its tabular structure and clear examples. This structure guided them on what details to include, such as dosage and side effects, setting clear expectations for the information required and prompting more accurate responses. However, the question from the paper form’s limited space made it feel ‘restrictive’ for some who needed to list many medications or complex details. Participants were also sometimes unclear about what counted as a ‘treatment’ and about the dosage example, which did not clearly specify whether it refers to the total daily dosage or each individual dose.

In contrast, the question from the digital form’s open text box allowed participants to provide much greater detail, which some preferred. The lack of predefined structure, however, left many unsure as to how to organise their responses, and led to concern they (or other applicants) might miss out important details. The absence of prompts led some to spend less time reviewing the question and consequently omit information they had included in the question from the paper form, such as dosage, treatments, or side effects. Some participants reported being overwhelmed by the combined prompts and lack of examples in the question from the digital form and felt that it might increase the likelihood of them missing key information.

Overall, while format preferences varied, participants generally saw the question from the paper form as simpler for ‘most’ applicants due to its structure and guidance.

Staff perspectives on the 2 question formats

Staff generally believed the question from the paper form helped capture the required information – particularly dosage and frequency of medications and treatments – most accurately due to its tabular structure. They felt that the specific prompts in the question from the paper form made the question more accessible for applicants. Staff felt that the tabular structure and examples guide applicants to provide information necessary for assessments and decisions. Clarity around dosage and frequency was especially important and participants more commonly completed this accurately in the question from the paper form. Staff felt the structured question from the paper form posed less risk of applicants missing out information that would enable them to make a fair decision, compared to the version from the digital form. Despite its structure, staff still found discrepancies within some responses to the question from the paper form, which increased their scepticism towards the open text box format used in the digital form.

This open text box was the main element that staff commented on from the digital form. While they did acknowledge that more articulate applicants might provide extra detail in the open format, they felt that this benefit was outweighed by the likelihood that:

an open text box could lead applicants to include irrelevant information while omitting critical information like medications, dosage, and frequency
the lack of clear examples and specific prompts makes it harder for applicants to understand what information is required, often resulting in irrelevant submissions

Although medication/treatment information might exist elsewhere in the application, staff felt it should be included here to ensure it was not missed.

Overall, staff felt the difference in question format affected the quality of information provided, which could potentially impact their ability to make informed decisions. They viewed the question from the paper form as more accessible and accurate, with the potential to positively impact decision quality, although it is important to note that they did not think it would affect award outcomes. They also noted that HCPs might capture any missing information during the assessment process. Identifying whether further evidence is needed from an applicant to support DWP in decision making is a key part of the healthcare professional role.

Overview

Basis Social explored the experiences of individuals acting as personal appointees for Personal Independence Payment (PIP) applicants. Personal appointees (referred to as ‘appointees’ throughout) are individuals who are legally empowered to act on behalf of an applicant who cannot manage their own affairs.^{[footnote 16]}

The research, based on 18 in-depth qualitative interviews, aimed to explore how people become appointees and the challenges they face during the PIP application process. Research took place between February and March 2025. Findings indicate that appointees struggle to accurately describe the impacts of non-physical health conditions for PIP applicants, and to gather medical evidence due to barriers in accessing medical records. Appointees also experience significant emotional burdens due to the responsibility of applying for PIP for someone else (which may be unsuccessful) and feel that there is a lack of tailored information and support specifically for their role.

The findings suggest that appointees would benefit from more specific and tailored guidance in applying for PIP on someone’s behalf, such as a dedicated information booklet. Appointees also emphasised a need for better communication from the Department for Work and Pensions (DWP) regarding the status of applications.

Research context

The overall research aim was to investigate the experience and challenges of becoming an appointee and completing the PIP process. A key aspect of this was to identify any needs or barriers that differ from those faced by standard PIP applicants (i.e. without an appointee).

The research specifically addressed several key questions:

how people become a personal appointee and ways to make this process clearer and easier
how the current PIP application process could be improved for appointees, including identifying what appointee-specific guidance or support would be useful
the mental and emotional barriers associated with becoming and acting as a personal appointee and potential ways to alleviate these challenges

The research sought to gain insight into the unique perspective of appointees to better understand their journey and identify areas for improvement in the PIP system for this group.

Key findings

Most appointees had never heard of the appointee role before applying for PIP on someone else’s behalf. Once aware, participants’ recall of the steps involved in becoming an appointee varied but most reported that it tended to be a straightforward process.
Appointees encountered similar challenges with the PIP2 form (also known as the ‘how your disability affects you’ form) to that of applicants, but found it difficult speaking on applicants’ behalf in the first person,^{[footnote 17]} and when attempting to accurately describe the impact of neurodivergence and/or mental health issues.
Appointees could face additional barriers when gathering medical evidence on someone else’s behalf, particularly if they did not have power of attorney.
Some appointees required (formal and informal) support to complete the application process. Previous experience of navigating the welfare benefits system on someone else’s behalf (e.g. Disability Living Allowance (DLA) and Universal Credit) helped to increase levels of confidence.
Appointees face different emotional challenges to applicants, related to the weight of being responsible for whether the applicant they are acting on behalf of qualifies for PIP.
Appointees felt there was a lack of tailored information, advice and guidance on how best to support an applicant through the PIP application process. They suggested that a version of the PIP information booklet specific to their role would be more useful than the current version.^{[footnote 18]}

Methodology

This project involved a qualitative methodology, whereby 18 x 60-minute Teams (online) or telephone interviews were conducted with individuals who had recently acted as PIP appointees. Whilst an appointee can be an organisation or representative of an organisation (e.g. solicitor or local council) - known as corporate appointees - this research only included individual, personal appointees.

The participants in the interviews were selected based on their stage in the PIP application process and their relationship to the applicant.

twelve participants had commenced the PIP application process within the last 2 to 9 months
six participants had completed the application process and received an outcome within the last 12 months

The relationships of the appointees to the applicants they were representing were varied. Eleven were parents, 2 were spouses, 2 were daughters, one was a friend, one was an uncle, and one was an ex-partner.

The sample also included a spread of other characteristics, such as the applicant’s health conditions or disability, and whether the appointee had previous experience applying for PIP for themselves.

Fieldwork was conducted in February and March 2025.

Findings explained

Becoming an appointee

Most appointees had never heard of the appointee role before applying for PIP on someone else’s behalf. Appointees learned about the role from various sources. Some were told by the DWP directly, often when a child was switching from DLA to PIP at age 16, or when DWP became aware they were informally acting as an appointee. Others found out when the applicant asked them to be their appointee or when prompted by the applicant’s healthcare professional or social worker.

Participants’ experiences of becoming appointees were inconsistent, but they generally found the process straightforward. However, many lacked awareness about the different stages of the process or did not recall experiencing certain steps, such as DWP visits or interviews. Some did not remember receiving an application form (BF56) but most recalled receiving a confirmation letter (BF57). DWP guidance outlines expected steps like phoning the PIP enquiry line, DWP visiting and interviewing the applicant, filling out the BF56 form, and receiving the BF57 confirmation letter.^{[footnote 19]}

Many participants noted they didn’t have many expectations of what the process would involve, citing difficulty accessing information about becoming an appointee or not knowing anyone else who was an appointee. Some were initially unaware that they needed to become a formal appointee to make a claim on someone else’s behalf and had begun by informally supporting the applicant. Introducing the formal appointee process after they had already started informal support caused frustration.

This is because PIP applications could be put on hold while the appointee role was formalised, leading to unanticipated delays.

Acting as an appointee

One of the most challenging parts of acting as an appointee was reported to be completing the PIP2 health information gather form. Appointees struggled with the administrative burden due to the form’s length and complexity, feeling under pressure to complete it within the given deadline. A specific challenge highlighted as unique to the appointee role was answering the questions in the first person, as if they were the applicant. Many reported that they found it strange to write in the first-person, feeling like “an imposter,” particularly if the applicant was not involved in the process. This is not a requirement of appointees (as detailed in the associated guidance) suggesting that many of the participants had not reviewed the guidance material in detail. Others did write in the third person (as per examples in the PIP2 form itself).

Appointees found it particularly challenging to answer questions in Section 3 of the PIP2 form, which relates to how health conditions or disabilities affect day-to-day life, when describing neurodivergence and/or mental health issues. They felt the questions were structured to accommodate physical disabilities rather than cognitive issues and struggled to articulate the nuanced ways in which these conditions impact applicants’ lives. This aligns with perceptions of the form reported in previous research with applicants.

The findings also showed that gathering medical evidence for the application presented further difficulties for appointees. A major systemic barrier was the difficulty in accessing someone else’s medical records, particularly if the appointee did not have power of attorney.

Despite the existence of DWP guidance for appointees, research participants felt there was a lack of information, advice, and guidance specifically tailored to their role. Some appointees noted that they needed or sought wider support for themselves when applying. They described the standard PIP information booklet as vague regarding their unique position. Suggestions for improvement included: more information on what it means to be an appointee (i.e. steps involved in process); example answers for section 3 of the PIP2 form that demonstrate how to articulate the way in which neurodivergence and mental health conditions can impact someone’s day to day functionality; and how to prepare for an assessment. They also desired easier access to DWP via an appointee-specific helpline.

The limited appointees in the sample who were involved in assessments recalled positive experiences. Assessors were described as ‘helpful’ and ‘friendly’. Some appointees were pleased to have remote assessments, often requested to accommodate their own or their applicant’s disabilities.

Finally, the research highlighted that the appointee role carries significant mental and emotional challenges. A core difficulty was the weight of responsibility for whether the applicant qualified for PIP, particularly when the applicant had limited capacity to be involved. Difficulty communicating with the DWP, such as long waits on hold and being cut off, was a common source of frustration and disrupted daily life. Appointees also reported that they felt stressed and anxious when left “in the dark” about the application status, leading them to chase the DWP for updates.

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Introduction

The impact of providing pre-assessment information to PIP applicants

Overview

Research context

Key findings

Methodology

Findings explained

What worked well

What worked less well

Suggested overall changes to improve the mock letters

Opportunities for signposting to support services across the health assessment journey

Overview

Research context

Key findings

Methodology

Findings explained

Understanding, perspectives, and experience of signposting amongst case managers (CMs) and healthcare professionals (HCPs)

Summary of barriers and enablers to signposting across the customer journey

Table 1: Barriers and enablers to signposting to wider support across the customer journey

Exploring potential PIP applicants’ understanding of PIP eligibility

Overview

Research context

Key findings

Methodology

Findings explained

Pre-exposure findings

Post-exposure findings

Testing the concept of a Health Impact Record in supporting PIP applications

Research context

Key findings

Methodology

Findings explained

Overall views on the principle of the Health Impact Report (HIR)

Prototype preferences: diary vs. questionnaire

Preference for online format with crucial need for offline alternatives

Concerns regarding overly flexible entry specifications

Critical need to prevent delays in benefit payments

Challenges related to subjectivity, trust, and integration

Testing online PIP eligibility information materials

Overview

Research context

Key findings

Methodology

Findings explained

Pre-exposure findings

Post-exposure findings: impact of testing materials on understanding

Post-exposure findings: applicants’ confidence and decision to apply for PIP

Understanding the needs of PIP applicants to inform a ‘Help to Claim’ style service

Overview

Research context

Key findings

Methodology

Findings explained

Experiences of the PIP journey

Experiences accessing support and initial thoughts towards a potential ‘Help to Claim’ style service

Ideas for accessing a potential ‘Help to Claim’ style service

Testing the role of question format on how applicants complete PIP applications

Overview

Research context

Key findings

Methodology

Findings explained

General public perspectives on the 2 question formats

Staff perspectives on the 2 question formats

Suggested improvements to the question format in the digital form

PIP personal appointees’ experiences of acting as an appointee

Overview

Research context

Key findings

Methodology

Findings explained

Becoming an appointee

Acting as an appointee

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