13.For some claimants, worries about the assessment processes for PIP or ESA begin well before the assessment itself. The Department’s research suggests most PIP claimants know little about the benefit before applying. Just over half of claimants (52%) said they had concerns about applying for PIP. These included:
Comparable Departmental research does not exist for ESA. The final Government-commissioned review of the ESA Work Capability Assessment (WCA), however, highlighted an “overwhelming negative perception” of the assessment amongst both people undergoing it, and organisations that support them. Witnesses told us these negative perceptions feed into claimant worries about the process from the outset.
14.We heard claimants can experience a range of difficulties filling in application forms for PIP and ESA. Witnesses remarked that the forms for PIP, in particular, are very long and that filling them in can be “exhausting” for people who are seriously unwell. The Motor Neurone Disease Association told us that some claimants do not understand fully the basis on which they are being assessed. They suggested that the functional nature of the assessment process was not always clear. Accordingly, claimants sometimes tend towards listing diagnoses and medical information, and fail to provide a thorough account of how their conditions affect them on a day-to-day basis. People with newly acquired or sudden-onset impairments and illnesses may particularly tend towards sharing new medical information, rather than information specifically relevant to functional impact. Claimants undergoing reassessment—either from DLA to PIP, or because their review period has expired—may also assume that information they have previously shared with the Department will be carried over. This is not always the case, even where such information remains relevant.
15.The Minister for Disabled People, Health and Work, Sarah Newton MP (the Minister) told us that despite these concerns, 63% of claimants “found [completing PIP forms] easier than they thought”. In fact 63% of claimants found it easier or as easy as expected, and claimants were more likely to find completing the forms more difficult than expected than to find it easier (34% to 14%). Over half of claimants (59%) seek help with applying. Half of those do so for reasons related to their health conditions and a further quarter because they required help understanding the questions. Organisations that provide support services agreed with these findings, suggesting that many claimants would like to receive, and would benefit from personalised support with their applications.
16.The Department tells claimants on its website and in correspondence accompanying forms that they can seek help from local support organisations and Citizens Advice Bureaux on the application processes. Organisations including Mind and Citizens Advice told us, however, that due to funding pressures their local branches are often not able to offer face-to-face support until a claimant has submitted an MR or Appeal. The Minister did acknowledge that, capacities of support organisations notwithstanding, “clearly not enough people are reading the information that we are giving” on how to complete the application and what to expect. She told us the Department is making efforts to provide more guidance. For example, it is producing “some YouTube films describing the process for all claimants” before they go to PIP assessments or ESA assessments. The Minister explained these will “really communicate” how to fill in the forms and the details of the assessment process. They aim to “demystify” application and “make people feel as comfortable as possible [ … ] about the process that they are going through.”
17.Some witnesses told us that the Department could go much further in signposting towards, and providing useful resources during the early stages of application. This would reap benefits in terms of building trust, demonstrating an open, proactive, helpful attitude from the Department from the outset. Some groups of claimants would particularly benefit from this additional support. For example, Turn2us told us that claimants with learning difficulties are often “frustrated with the lack of advice and signposting available” in both PIP and ESA processes. Shaw Trust, a provider of employment support to disabled people, told us that claimants with brain injuries, and those whose first language is not English, could also benefit from improved “plain English” guidance. Other witnesses told us this support would be beneficial to a much wider range of claimants. In order to be fully accessible, we heard advice and support should take a range of forms:
a)Written advice and information packs. We heard that, in particular, providing accessible versions of PIP and ESA descriptors alongside the forms would greatly help claimants to understand the assessment and the types of information and evidence they should provide;
b)A telephone advice line offering holistic support with the assessment process, delivered or funded by the Department;
c)Online support, including chat, videos and interactive media, or a “dashboard” to keep claimants updated on their claim;
d)Funding support and advocacy organisations to deliver personalised, face-to-face assistance.
To ensure the needs of all claimants are met, we heard materials should ideally be co-designed with or, at the very least, be developed in consultation with expert organisations.
18.Applying for PIP or ESA can be daunting. The Department has so far only made limited efforts to provide support and guidance in a variety of clear, accessible formats. It should not rely on already stretched third sector organisations to explain the Department’s own processes. A concerted effort from the Department to help with applications would be both reassuring to claimants, and of great practical benefit. We recommend the Department co-design, with expert stakeholders, guidance in a range of accessible formats on filling in forms and preparing for assessment. This should include accessible information on the descriptors for each benefit, to be sent out or signposted alongside application forms. We also recommend the Department makes clear to claimants being reassessed that they should not assume information from their previous assessment will be re-used, and should be prepared to re-submit any supporting evidence already provided.
19.Practical difficulties aside, the process of applying and being assessed for PIP and ESA can be emotionally draining for claimants. In our previous report, we highlighted multiple examples of claimants’ distress at having to list in great detail on their forms all of the things that they struggle to do due to their health conditions. Mind and the Scottish Association for Mental Health explained:
Many people try to focus on what they can do and their hopes for recovery, finding it distressing to have to spend time focusing on the ways in which their mental health problem can limit the things that they are able to do.
Some organisations told us that these experiences led them to suspect that there can be a negative impact on health—particularly mental health—associated with application itself. The British Psychological Society told us this should be a concern for the Department because it directly interacts with the purposes of ESA and PIP. They explained that “any process designed to support those in need must uphold or improve the psychological wellbeing of those individuals”. We heard that the Department should take seriously these concerns and seek to understand them better by conducting research on the impact of application on claimant health. The purpose of this research should be to inform improvements to the forms in order to lessen the distress experienced by some claimants during the PIP and ESA processes.
20.Many PIP and ESA claimants have multiple health conditions that bring with them severe limitations. Focusing on what they are able to do is a common coping strategy—one that is often incompatible with filling in PIP and ESA application forms. It is impossible to draw a causal link from application to claimant health. The Department should demonstrate, however, that it is alert to the risk to mental health posed by parts of the application processes and seek to offset this.
21.We recommend that the Department commission and publish independent research on the impact of application and assessment for PIP and ESA on claimant health. This should focus initially on improvements to the application forms, identifying how they can be made more claimant-friendly and less distressing for claimants to fill in. The Department should set out a timescale for carrying out this work in response to our Report.
22.For some claimants, problems with applying for PIP or ESA result from failures by the Department to meet their accessibility needs. Most claimants currently call a telephone number to begin their claim. For people with hearing loss—a very common disability—making this phone call may not be possible. The Department offers an alternative Textphone number, but organisations supporting hearing impaired claimants told us that Textphones and minicoms are not widely used. There is also a video relay service for British Sign Language (BSL) users, but this is not accessible to those who do not speak BSL. Natalie McMinn, a hearing impaired, non-BSL claimant of PIP and ESA told us she had needed to rely instead on a Text Relay operator when applying for ESA. This was a frustrating experience, especially as the wait for her call to be answered had been up to 50 minutes. DeafLink, a specialist charity, further argued that deaf people should not have to rely on support from non-hearing impaired people to access benefits. They recommended email or Text Talk options be made widely available for claimants of both benefits.
23.Witnesses supporting claimants with learning and cognitive difficulties told us that many of the Department’s and contractors’ standard forms and letters are not accessible. Mencap explained that this leaves claimants heavily reliant on support to understand even basic information on their claim—much less engage fully in terms of filling in forms and understanding the assessment process. Breakthrough UK, a disabled people-led charity, cited an example of the consequences of not providing information in accessible formats:
One client who requires Easy Read received a generic letter in the post informing her of what next year’s PIP rates would be. She interpreted this as meaning that she had now been awarded PIP (she had not at that stage), but it was just a standard letter which was nothing to do with the outcome of her claim.
24.The Department has made very limited steps to provide communications in Easy Read format. After “some pushback” it accepted Paul Litchfield’s recommendation on producing Easy Read versions of key ESA forms. He told us, however, that “certainly there is more to do” in this area. The equivalent PIP forms—notably the PIP2—are not available in Easy Read. Witnesses recommended that the Department work towards making its standard communications available in this format, and requiring contractors to do the same. Claimants could then give this as a communication preference at the outset of their claim, receiving forms and letters that are tailored to their needs. Mencap explained this would not only allow claimants to understand the information sent to them, but also to “take ownership” of their application.
25.As a result of their health conditions, many PIP and ESA claimants require communications in a specific format. The Department’s resistance to meeting even some of the most basic of these needs makes applying for PIP and ESA unnecessarily challenging for some claimants. Its failure to provide a widely-used, accessible alternative to telephone calls, and Easy Read communications, is extraordinary. We recommend that the Department enables claimants with hearing impairments to apply for PIP and ESA via email, ensuring this service is appropriately resourced to prevent delays to claims. In the longer term, it should look to offer this option to all claimants. It should also ensure key forms and communications—especially the PIP2, appointment and decision letters—are available in Easy Read format, allowing claimants to register this as a communication preference at the start of their claim.
26.The Department forwards claimants’ application forms to the relevant contractor on receipt. For a minority of claimants, the decision on entitlement is made on the basis of paper evidence alone. In most cases, however, the contractor will contact the claimant to arrange a face-to-face assessment. Claimants who are unable to attend an assessment centre can request their assessment be carried out at home. The decision on whether this takes place is made by contractors’ Healthcare Professionals (HCPs). Home visit rates vary widely between contractors. Capita carried out 56% of its assessments at claimants’ homes in 2016. This compared to 14.5% for Atos and just 1% for Maximus. Maximus explained that if medical evidence suggested impairment sufficient to justify a home visit, the HCP might judge that they have enough information to make recommendations on the claimant’s fitness for work, without a face-to-face assessment taking place at all. The reason for the large difference between Atos and Capita’s rates was not entirely clear to us, although David Haley, Chief Executive of Atos, explained that it might result from “slight” differences in the location and capacity of assessment centres between the two contractors. Capita carries out a much smaller proportion of PIP assessments than Atos. Atos’s approach to granting home visits will therefore have implications for a much larger group of claimants.
27.There are slightly different approaches between PIP and ESA, and between contractors, to determining whether a home visit is necessary. Atos and Capita told us their HCPs follow guidance set out in the PIP handbook when deciding whether to carry out a home visit. This states they should consider:
a)the nature and severity of the claimant’s medical condition, and if this precludes them from travelling or makes it extremely difficult to travel;
b)the safety implications of a home visit for the HCP; and
c)whether there are accessibility issues related to the planned location for the assessment which might justify a home visit.
Maximus told us they observe similar guidance. The PIP guidance further suggests that the request for a home visit “may come from a GP or other healthcare professional involved in the claimant’s care”, but does not state this is necessary. Dr Barry McKillop, Chief Medical Officer for Atos, told us that they “do not require medical confirmation or proof” to substantiate a home visit request. Dr Ian Gargan, Chief Medical Officer at Capita, told us that the decision on whether to offer a home assessment is a “clinical” decision, although not a medical one. He explained that the “extent of the clinical decision” is the HCP’s insight into whether they should “look for further evidence or maybe what other area to look at” emphasising this might come “a community psychiatric nurse or from a carer at home etcetera.” Maximus explained, however, that their guidance requires them to consider whether the request is “is based on medical fact rather than opinion”—for example, “‘my patient has severe agoraphobia and cannot leave the house’” rather than “‘I feel my patient would benefit from an assessment at home’”.
28.We heard that a combination of inconsistently applied guidance and the standard of proof required means that claimants sometimes have difficulty obtaining home visits. Aspire, a charity supporting people with spinal cord injury, told us contractors sometimes insist on specific types of medical evidence, despite the need for a home assessment being clearly apparent. They explained:
Home visits are not being offered to our clients who are obviously in need of a home assessment: for example, clients who are tetraplegic (paralysis affecting all four limbs from the neck down) who are unable to leave their homes easily. In this situation, claimants are required to provide a letter from their GP to state that it would be reasonable for them to be offered a home assessment. This is a pointless process as the claimant has already provided medical information to support their claim.
29.Halton Housing, a housing association based in Cheshire, pointed out that such requests lead to “added pressure on GP surgeries and often added expense for claimants who are already on a low income”. Witnesses did not always refer to specific providers in relation to difficulties with home visits. The geographic locations of witnesses, however (for example, in the case of local advice services) suggested difficulties and inconsistencies in the processes for obtaining a home visit persist across contract areas and for both benefits. It was not clear to us how procedures for granting home visits interacted with other elements of the contracting arrangements. These include the costs associated with a home visit versus an assessment centre, and targets for face-to-face and paper-based assessments. We heard, however, that claimants’ needs must come first, and that the decision on whether or not to grant a home visit should be based solely on what is best for the claimant.
30.Home visits are an important option for claimants whose health conditions make attending an assessment centre difficult. Contractors interpret the Department’s guidance on home visits differently. They take varying approaches to granting them and require different standards of supporting evidence. This leads to inconsistencies between the benefits and between contractors. It can also place additional burdens on claimants and the NHS.
31.We recommend the Department issue new guidance to PIP and ESA assessors on the procedure for determining whether claimants receive a home visit. This should specify that GP letters are not required where other forms of evidence and substantiation are available. This should include evidence from the claimant, as well as from carers, support workers and other health professionals. To ensure guidance is being followed, we recommend contractors be required to gather evidence and the Department audit requests made and granted for home visits, as well as reasons for refusal.
42 Emma Carragher, Lewis Hill, Margaret Blake and Anna Quigley, , DWP ad hoc research report no48, March 2017, p.17
43 Paul Litchfield, , p.4
44 Aspire (), Royal British Legion Industries (), Shaw Trust (), Making Every Adult Matter (), South London and Maudsley NHS Foundation Trust ()
45 (Yolanda Barker). See also: Breakthrough UK (), Disability Agenda Scotland (), Disability Equality Scotland (), Making Every Adult Matter (), Mind and SAMH (), MEAM (), South London and Maudsley NHS Foundation Trust (), Turn2us (), Alzheimer’s Society (), Action for ASD ().
46 Motor Neurone Disease Association (). See also: Action for ME (), Epilepsy Action (), Equity Trade Union Benefit Advice Centre (), National Deaf Children’s Society (), PCS Union (), Social Security Advisors in Local Government ()
47 Free Representation Unit (), New Freedom Project (), PCS Union (), South London and Maudsley NHS Foundation Trust ()
48 (Sarah Newton)
49 Carragher et al. , p24
50 , p21
51 Citizens Advice (), Mind and SAMH (), Shaw Trust ()
52 . The online guidance applies to PIP claims only. Information about support services for claimants applying for ESA can be found on the initial letter accompanying the application form.
53 Citizens Advice (), Mind and SAMH ()
54 (Sarah Newton)
55 (Sarah Newton)
56 Epilepsy Action (), Mind and SAMH (), Motor Neurone Disease Association (), Rethink Mental Illness (), Shaw Trust (), Turn2us ()
57 Turn2us (). See also DOSH Financial Advisory (), The Down’s Syndrome Association (), British Psychological Society and the British Association of Behavioural and Cognitive Psychotherapies (), Speak Up Self Advocacy ()
58 Shaw Trust ()
59 Action for ME (), Leonard Cheshire Disability (), Worcestershire Association of Carers ()
60 Auriga UK (), DOSH Financial Advisory (), Mencap (), National Deaf Children’s Society ()
61 British Psychological Society and the British Association of Behavioural and Cognitive Psychotherapies (), Mencap ()
62 Turn2us ()
63 Action for ASD (), Citizens Advice Coventry (), Central and South Sussex Citizens Advice (), Greater Manchester Law Centre (), National AIDS Trust ()
64 British Psychological Society and the British Association of Behavioural and Cognitive Psychotherapies ()
65 Work and Pensions Committee,
66 Mind and SAMH (), Rethink Mental Illness ()
67 British Psychological Society and the British Association of Behavioural and Cognitive Psychotherapies (), Making Every Adult Matter (), Rethink Mental Illness (), Royal College of Psychiatrists ()
68 British Psychological Society and the British Association of Behavioural and Cognitive Psychotherapies (), Bristol Mind ()
69 Bristol Mind (), Social Security Advisors in Local Government (), Rethink Mental Illness, , 2017
70 Under Universal Credit, which incorporates and replaces ESA, all applications in live service areas should be made via the phone line. Claimants can print out and fill in a form, although this may take longer. Eligible ESA claimants in Universal Credit full service areas must apply online.
71 Action on Hearing Loss, , 2015
72 DeafLink North East (), Inclusion London (), National Deaf Children’s Society ()
73 The is available for PIP claimants. Video relay is not available for ESA claimants.
74 (Natalie McMinn)
75 DeafLink North East (),
76 Mencap (). See also The Action Group (), Breakthrough UK (), DeafLink North East (), The Down’s Syndrome Association (), Shaw Trust (), Turn2us (), Worcestershire Association of Carers ()
77 Breakthrough UK ()
78 (Paul Litchfield), Paul Litchfield, , p46
79 (Paul Litchfield), (Sarah Newton). The ESA50 form, where claimants detail the impact of their condition, is available in Easy Read.
80 Mencap (). See also The Action Group (), Breakthrough UK (), DeafLink North East (), The Down’s Syndrome Association (), Shaw Trust (), Turn2us (), Worcestershire Association of Carers ()
81 Mencap ()
82 NAO , p.19; NAO, , 2014, p.16
83 Capita ()
84 , 18 December 2017; Maximus ()
85 (Dr Paul Williams), Maximus ()
86 (David Haley)
88 DWP, , November 2017, pp.33–34
89 Maximus ()
90 DWP p.34
91 (Dr Barry McKillop)
92 (Ian Gargan)
93 Maximus ()
94 Aspire (). See also: Age UK Bristol (), Halton Housing (), Local Support Team Southwark Council (), Mind and SAMH (), Possability People (), Royal British Legion Industries (), Citizens Advice Wealden ()
95 Halton Housing (), Dosh Financial Advocacy ()
96 Citizens Advice Wealden (), City of Wolverhamption Council (), Equity Trade Union Benefit Advice Centre (), Halton Housing (), Local Support Team Southwark Council (), Mind and SAMH (), Royal British Legion Industries (), Worcestershire Association of Carers ()
97 (Simon Freeman and David Haley); NAO,
98 Halton Housing ()
12 February 2018