PIP and ESA assessments: claimant experiences Contents

2Claimant experiences

Errors in reports

8.We heard that assessors work from a standard report template and, in some cases, complete all their assessment reports for the day in a single sitting.15 Witnesses told us this process, combined with time pressures, contributes to factual inaccuracies and a “copy and paste” feel to reports.16 Mistakes can lead to inaccurate assessments and ultimately deny claimants a fair benefits decision.

Inclusion of fundamental errors

9.Some witnesses shared statements in their reports that bore little or no relation to their circumstances or what had occurred during the assessment.

Apparently I walk my dog daily, which was baffling because I can barely walk and I do not have a dog! Nikki

She wrote I arose from the chair without any difficulty. I was in bed the whole time (she let herself in) and I only have the one chair in the room and she was sitting in it. She said that I had no difficulty reading with my glasses yet I do not wear glasses to read. Mary

I did most of the talking as my partner was drowsy with his medication, but in the statement with the PIP decision [it said that] my partner was chatty. Completely untrue. Lorraine

I was attacked with a deadly weapon only a short time before my assessment. The man threatened my life, on a walk with my dog. So the assessor wrote that I like to talk to people on my walk. Katherine

The assessor stated that I could do a variety of things that I can’t actually do. She said I chat to people on the phone each day and have no problems going out and about and interacting with people. In reality though, I am practically agoraphobic, suffer from terrible anxiety, avoid seeing people if at all possible and never chat to anyone on the phone. Sarah

The report we received was a work of fiction and bore no resemblance to what actually took place [ … ]. For example the assessor said my husband took off his jacket with my assistance. My husband did not wear a jacket that day. The assistance I gave with his clothing was to help him put on his socks and shoes although no mention was made of this. Timings were wrong, names were wrong, information was wrong, relevant things that happened were not mentioned while things that did not happen were invented. John

Omission of relevant information

10.Other claimants told us that important information from their assessment had been left out of their report.

I was asked if I had tried to self-harm and I said yes I have tried to hang myself, but this was not in the report. It was not mentioned that I wear hearing aids even though this was in my form. Kevin

The report was full of inaccuracies. For example, I self-harmed before the assessment due to the mental distress of being assessed and was given diazepam from my GP. I told the assessor this. This was not noted in the report. It was reported that I made eye contact, was articulate, was well dressed and not distressed. In fact I had cried during the assessment and was visibly distraught as well as poorly dressed. Name withheld

The assessor stated that I wasn’t anxious yet during the assessment I asked for a drink, came out in a rash from picking at my skin, and sat outside on the floor due to the pain I was in. Amy

The report was full of inconsistencies. For example, the assessor correctly wrote that I cannot use public transport alone, I cannot visit unfamiliar places alone, and I require prompting to visit familiar places alone. However, they then proceeded to state that I therefore needed no assistance with mobility, and scored me zero points. This doesn’t even make logical sense! Maddy

Before the assessment I prepared a checklist of what I needed to say. I also told the assessor that my husband had to remind me if I forgot anything. The assessor told me we wouldn’t be using the checklist so I became very withdrawn and quiet. Because I was so anxious, I really struggled to remember things, yet in my report he said I had no memory problems. Amanda

Physical examinations

11.Several claimants told us that the results of physical examinations which had not taken place were included in their assessment report. These results were of a level that could not have been ascertained without a thorough examination.

One assessor said I had full movement in my toes although the podiatrist said at the time it was only 20%. I still can’t work out how she could tell considering I was wearing leather winter boots which she did not ask me to remove. Watson

Born with severe Talipes. Assessor said he “knew all about Talipes, [so] don’t need to examine foot” [ … ] Report stated 50 degrees plantar flexion, which would be normal. Actual degree is less than five. A difference of 90%. Could have been solved by his examining my foot. Siobhan

She stated that a physical examination had been done, but I did not move from my chair, so she could not examine my spine which she stated was normal, nor get an accurate range of limb and joint movements. The latter were given in degrees on the report. No measurements were taken. Even a physiotherapist would struggle to give this degree of accuracy without using a measuring device. Name withheld17

The assessor claimed in the report to have completed an extensive examination of me during the assessment. She listed a breakdown of her observations regarding the movement of all my limbs and joints. In reality though my assessment was only fifteen minutes long and the assessor didn’t examine me at all. Sarah

The assessor’s report [ … ] listed a full A4 page of exercises, angles attained and their conclusions. [These were] allegedly done at the assessment, none of which were done. [This included that I had] laid down when I had never been out of my wheelchair nor my thick winter coat the whole time [ … ] raising my arms, attempting and failing to get my arms behind my head and back, and rotating my ankles, again something haven’t been able to do successfully for years. Gee

Difficulties in completing application forms

12.All PIP and ESA applicants are required to fill in application forms describing their health conditions and functional capabilities. The Minister for Disabled People, Health and Work, Sarah Newton MP, told us that 85% of PIP claimants were able to complete all sections of the form.18 Research conducted for the Department found that 34% of claimants found completing the form more difficult than expected, compared with 14% who found it easier.19 Claimants told us they had found filling in the forms stressful. We heard they are reticent to share their—often very severe—impairments in day-to-day life, instead focusing on what they are able to do and remaining positive. Filling in the form requires claimants to present a record of all the things they struggle with or are unable to do, which can be highly distressing and damaging to self-esteem. Some also felt the complexity of the forms acted as a deterrent to disabled people claiming PIP or ESA.

The form itself caused anxiety and depression. For the twelve days we took considering and writing on the form, my mother refused to eat, drink, or sleep save the smallest amount. She began to self-harm from the stress and cry in the despair of admitting how she is limited, how she is constantly in pain, how she cannot complete simple tasks—“how her disability affects her”. The very name of the form. There are psychological ramifications to asking someone to list their every weakness and embarrassment—how often she cannot “make it” to the toilet in time and soils herself, that she cannot bathe alone. Name withheld20

I had to get help to complete the form, as it was painful to sit and relive some of the reasons why I couldn’t go out alone due to the threats of harm [ … ] I was determined not to only fill out those tiny boxes and added additional sheets for every question. While the form was being completed my pain and anxiety increased tenfold. Anne Marie

The forms are horrendous to fill in [ … ] I felt embarrassed and ashamed for having these difficulties. I usually try to stay positive and focus on what I can do [ … ] but I had to lay out every single problem and failure to function normally on paper [ … ] so that some stranger can read all of my shameful secrets and judge me on them. The long forms take weeks to fill in because of how distressing it is and how much I struggle with concentration and planning what I have to say. Rebecca

Both my PIP and ESA forms took up to 50 hours each to complete. Without my husband’s help [ … ] I would never have had the strength and stamina to complete them. I had to take the maximum dose of neuropathic painkillers and was taking my evening dose in the middle of the afternoon. I was getting migraine after migraine. I was stressed out by what I physically and mentally had to endure and it felt similar to having a pseudo relapse with regards to the exhaustion and levels of pain. Lesley

The PIP form took over 20 hours to complete. I had to complete it for my husband. The form is belittling, degrading, impossibly lengthy, far too detailed and complicated. It focuses on the negatives only. Many people will take one look at the form and decide not to apply. Jacky

Lack of assessor knowledge and expertise

13.PIP and ESA assessments are intended to be functional, rather than medical. This means awards should reflect the impact a condition has on a person’s life, rather than the details of their diagnosis.21 Contractors stressed that as all assessors are trained in assessing functional capacity, it need not matter if they lack specialist medical knowledge.22 Many claimants told us, however, that assessors lacked sufficient knowledge to understand their functional limitations. In some cases, they felt this lack of understanding had led to the wrong decision on their benefit entitlement.

Mental health

14.Mental health conditions are very common amongst PIP and ESA applicants. In 2017, 36% of PIP and 49% of ESA recipients listed a mental health condition as their primary impairment.23 Claimants told us they felt their assessor did not understand their mental health condition or its implications. Others suggested assessors relied on stereotypical beliefs about particular conditions.

The woman laughed when I told her I’d ran away to visit Julian Assange during my first psychotic episode and looked at me funny. Because of the woman’s behaviour and disrespect, I don’t think she knew about the difficulties and health problems people have. I got the impression she didn’t know about schizophrenia or psychosis. Name withheld24

We reached a point where we were discussing my personal care and I pointed out that I hadn’t taken a shower in months. The nurse reacted strongly to this and said, “So how does your OCD affect you then?”. She gave me a look as if to suggest I had been caught out lying, claiming to have OCD while making statements to the contrary. The Community Mental Health Team support worker and I exchanged glances, both thinking that this nurse didn’t know very much about OCD. As you may well know, to have OCD you don’t have to be washing your hands a thousand times a day and cleaning lampshades with a wet wipe. My OCD takes the form of a ritual where I have to hold my fingertips together at many points throughout the day in the belief that this will prevent a nuclear war. These type of rituals and compulsive thoughts are fairly standard with OCD. Name withheld25

The assessment itself felt like the assessor was not really aware of bipolar being a spectrum. She recommended I be awarded the minimum amount to access the living component of PIP. This was based on assessing solely the depressive part of the disorder. Things like my ability to manage money, maintain self-care, etc. were ignored in several categories. There was no sense that my needs vary, and can even be contradictory when measured against PIP’s descriptors. Simon

I have had a number of DLA and PIP assessments and my experience is the assessors do not seem to listen to what you say or review the evidence. I have had two tribunals now at which I was given many more points than the zero first awarded in both cases and I was found to be entitled to PIP. My evidence always includes a letter from my therapist explaining how a) I should not be subjected to a stressful assessment and b) that unless the assessor is skilled in talking to people with dissociative disorders the out come will not be accurate, since I always present as a strong survivor in order to be able to cope. This front masks my underlying difficulties. I am now wearily waiting to attend my next assessment in a couple of weeks. I fully expect to have to challenge the outcome. Jo

15.We also heard that assessors sometimes appeared poorly trained to question claimants about their conditions. Claimants reported being asked inappropriate or insensitive questions, which they felt had a negative impact on their mental health.

The assessor also asked my mother if she were suicidal. As I recall, that went like this:

Assessor: “Are you suicidal?”

K: Yes

Assessor: How often are you suicidal?

K: Every day

Assessor: Have you tried?

K: Yes

Assessor: And why didn’t you succeed? Why did you fail?

K: My family would miss me.

Each of K’s answers was slow and ashamed. She had not yet told me these things, but she had been trying to bring them up at therapy to work through these feelings safely. For her to be forced to admit this and for there to be no after care, but the continuation of an exam, shattered her. I genuinely believe that without my constant assurances after the event that K would have made another suicide attempt that week. Name withheld26

My daughter was violently triggered by the hugely intrusive and challenging questions the assessor asked and self-harmed during the assessment. Name withheld27

When I finally had my assessment the lady was quite nice but I was so upset and frightened. I was asked why I hadn’t killed myself if as I had written on the forms that I frequently felt that way! Not the sort of thing you should ask someone with severe mental health issues! [ … ] I found it distressing and humiliating. Ruth

Use of informal observations

16.In addition to evidence supplied by the claimant, assessors also use “informal observations” of claimants on the day of the assessment to inform their report.28 Claimants with mental health conditions told us that these observations, combined with a lack of assessor knowledge, can understate the functional impact of their conditions.

I was judged on superficial characteristics like my demeanour on the day which aren’t indicative of my internal mental state whatsoever. In early stages of mania, I appear happy and confident and my behaviour gradually becomes more extreme over the course of weeks. Severe mood episodes are episodic, but even between them, my mood is problematic and hard to cope with. No concession to the variable nature of my illness was taken into account. Nick

The assessor said in the report something to the effect that my mental health wasn’t an issue as I had smiled during my assessment. At the time of my assessment I was highly suicidal. Amanda

The assessor stated that I was “well kempt [sic]”. However, I had not managed to wash my hair for over a week due to my impairments, and she failed to note that I was only wearing two items of clothing, and was spaced out on my prescription controlled drug. Name withheld29

The assessor stated in her report “no signs of sore hands” “no signs of repeated washing” “was well groomed” “was well dressed”. Anyone with a brain cell knows mental health isn’t always visible, and OCD isn’t all about excessive washing of the hands! OCD is known as a secretive disorder at the best of times and people in that profession should know better when it comes to mental health. Chad

The assessment was done by a general nurse with no mental health training. He concluded that, since I did not appear to be stressed, anxious or show any mental health issues during the assessment, it was “unreasonable to believe” I had mental health issues [ … ] The stress of the interview actually got me admitted to hospital the next day. Sarah

Physical health and genetic conditions

17.Concerns about assessor expertise were not limited to claimants with mental health conditions. Claimants with physical impairments and genetic conditions also reported their assessors displayed little knowledge of basic facts about their conditions or their functional impact.

Some of the assessors, both ESA and PIP, need more insight and training with regard to people with learning difficulties. Below are questions that parents have been asked at the assessments; How long have they had Down’s syndrome for? When did they catch Down’s syndrome? When were you diagnosed with Down’s syndrome? Down’s syndrome is a widely recognised learning disability. If an assessor is being asked to assess someone with a condition that they do not know about, common sense and courtesy should tell them to research the condition before starting the assessment. We therefore believe that more training is required in some cases. Down’s Syndrome Association30

The assessment itself was brief, and the assessor had no knowledge of my condition. She said not to worry, she’d Google it later. The report was incorrect. The assessor asserted that my gait is normal, but I’ve had a limp since 2005, and use crutches from the physio to try to straighten my walk [ … ] She also said I have normal spinal movement—I haven’t, partially because of pain, partially due to the metal cage round my lumbar vertebra. The list goes on. Ceri

18.Several claimants told us that that their assessors had made ill-informed assumptions about how far they could walk, providing an inaccurate basis for decisions about mobility-related awards:

The assessor ticked the box “can stand and then move using an aid or appliance more than 20 metres but no more than 50 metres”. I [told] the assessor that I could just about walk the 5 metres to the end of my front garden and back (so 10 metres in all). Maggie

I opened the door and walked the 5 metres back to my sofa, using my walking stick and that was all I was seen to do. How can somebody then say that I can walk between 20 and 50 metres? The reason given was that I walk from the house to my Dad’s car when he picks me up and the same in reverse and I use a wheelchair for further distance. My front door to the car is 7 metres! Karen

Without any evidence, the assessor wrote in the report that because my friend could walk 5 metres “slowly”, she could walk 50 metres without problems. Margaret

Challenging a decision

19.Claimants who disagree with the outcome of their PIP or ESA assessment can request DWP review their decision via Mandatory Reconsideration (MR). Under this process, the initial DWP decision based on the assessment report—though not the assessment itself—is reviewed by a second DWP Decision Maker, who can revise the award if necessary. Since 2013 there have been almost one million MRs of PIP and ESA decisions. These comprised:

  • 260,000 ESA MRs, of which 32,000 (11%) resulted in a change of award; and
  • 670,000 PIP MRs, of which 119,000 (18%) resulted in a change of award.31

Claimants cannot appeal to a Tribunal before they have completed MR.

Mandatory Reconsideration as a “rubber stamp”

20.Claimants told us MR was merely a “rubber stamp” of initial decisions. Until changing its approach in response to our evidence in December 2017, DWP had a key performance indicator for MR of 80% of initial decisions to be upheld.32 The Department denied that this affected the quality and thoroughness of MR, but several claimants told us that their MR decision letter had simply restated the conclusions of the initial decision letter.33 Organisations that support claimants similarly said that MR was a “hurdle” before claimants could appeal, rather than a genuine review of decision making.34

I can give an example of a health professional that did an assessment for daily living and the client was marooned on six points where she needed to get two extra points for daily living. The assessment was done. They have a narrative and then they tick a box on their report from the health professional. The health professional had said, “This woman needs to use continence pads for the majority of the time” but what she had done is ticked the box where you get no points. She had ticked the wrong box, so we thought, “That is going to be easy”. We would do a mandatory reconsideration, point it out, quoting that error, what we thought was just a clerical error, and, lo and behold, nothing changed on the Mandatory Reconsideration.” Gary Edwards, Southampton Advice and Representation35

The Mandatory Reconsideration was a farce. It appeared to consist of someone in a DWP office somewhere merely rubber-stamping the original decision. Teresa

I don’t see what Mandatory Reconsideration is supposed to achieve. The medical assessor gives a package of info to the decision maker. The decision maker looks at it and applies the Decision Maker’s Guide and makes a ruling. Different Decision Makers should always make the same decision. It’s not ok for rulings to be variable. In my opinion: Mandatory Reconsideration delays rightful payments; discourages people who would win an appeal from making an appeal; causes hardship; and it increases the workload on decision makers which has the perverse result of making their decisions less correct—driving an increase in Mandatory Reconsideration. Dan

I went to a Mandatory Reconsideration but the DWP made a instant decision and went with the report from the Healthcare Professional. I got the impression that the person carrying out the Mandatory Reconsideration was not interested in listening to my side of the story and that they were under workload pressure to make a quick decision. It felt like none of my numerous medical documentation obtained from all my Health Care Team were even considered and that they solely made their decision on the Health Care Professional report. Gregory

Mandatory reconsideration appears pointless, just making sure that the paperwork was done right with no actual reconsideration of the evidence. Charlotte

Stress associated with Mandatory Reconsideration

21.Several claimants found applying for MR and waiting for a further decision stressful. Some felt this additional uncertainty had a negative effect on their health, and put them off further challenging the Department’s decisions.

My husband was found not eligible to continue claiming ESA. We asked for a Mandatory Reconsideration. At the time of his assessment he was managing his depression without medication and the anxiety with occasional diazepam. [After the decision his GP had to reintroduce] antidepressants and risperidone. Unbeknownst to me, after forcing him back to GP to get some more help to gain control of his anxiety and depression after his assessment, my husband was additionally self medicating with diazepam from my prescription in order to get through the day. Within the space of 8 weeks my husband had gone from being able to handle his mental health without medication to secretly taking my medication as well as his own [ … ] The stress of this whole situation has been a huge blow to us both but especially for him [ … ] His anxiety now runs our life. SR

The whole Mandatory Reconsideration process was very tiresome, worrying and stressful. I did not find it useful or effective, I felt unable to bear the stress of going through the appeals process and was left feeling suicide is the easier route to take [ … ] The whole process was very unfriendly and I was left feeling unable to trust the professionals. M

22.We also heard that a decision not to proceed to MR was not necessarily a reliable indicator of a claimant being satisfied with, or understanding, an initial decision. Some claimants explained they felt unable to face challenging the outcome of their assessment.

I reapplied for PIP only to be declined. I decided against requesting a Mandatory Reconsideration or taking to appeal for the sake of my health and wellbeing. Colin

The first time I did the PIP assessment on my own and was told I didn’t get enough points, despite the assessor seeing my problems clearly. I went through Mandatory Reconsideration and was still denied PIP. After this I felt like committing suicide because I was living off £76 a week and getting no help whatsoever from anyone. The second time I applied [ … ] I got awarded PIP but at the lowest rate. I was so tired, and stressed out by the process that my self harming got worse, I was very suicidal and ill, so I didn’t dare ask for Mandatory Reconsideration in case the PIP was taken away from me again. Tristen

The report following my assessment had many untrue and incorrect details within it. I was placed in the WRAG group which I was made to feel I should be grateful for. I decided not to request Mandatory Reconsideration as the stress involved following the ESA assessment was so bad it had brought on worse flares of my condition. Yvonne

Appeal

23.Claimants who are not satisfied with the decision made at MR can submit an appeal through the Tribunal Service.36 Since 2013 there have been:

  • 170,000 PIP appeals. Claimants won in 108,000 cases (63%); and
  • 53,000 ESA appeals. Claimants won in 32,000 cases (60%).

The Department told us that the most common reason for decisions being overturned at Appeal is that new evidence has come to light. Organisations that support claimants told us this sometimes true. We also heard, however, that in their experience, the “overwhelming reason” for revised decisions is the full consideration of pre-existing evidence by the appeal panel.37 Witnesses told us that they were often more satisfied with the Tribunal Service than with DWP’s processes. They explained, however, that going through appeal can be highly stressful, irrespective of the decision reached.

I appealed the decision which was a nightmare, I was made to feel rubbish. The time limit for waiting to hear about the appeal decision is too long; I ended up being housebound until my appeal was won, but in that time I had to go on more medication because I was stressed and suffered with panic attacks. Name withheld38

My appeal was in Truro (I live in St Ives [25 miles away]), which, for me, is an incredibly gruelling journey. I had a panic attack on the train. Making that journey took me out of action for the following week. The whole process was traumatic and soul-destroying from start to finish and bound to exacerbate conditions like anxiety and depression (my anxiety levels went through the roof and my depression flared up frequently). Teresa

I endured two court appearances within 6 weeks and it made me feel like a criminal. I have never been so terrified in all my life. I have never been more aware of my own mortality. The experience truly has scarred me, and I have recently seen a counsellor solely on this issue. I felt degraded because I was born with a faulty gene. Angela

Due to the stress of appealing against the PIP assessment as well as my frustration with the level of incompetence demonstrated during the assessment, I relapsed completely in March 2017 and was referred to a specialist unit for a week and was supported by the Home Treatment and Crisis Resolution team for a period of eight weeks. Alma

The appeal panel was the worst day of my life, with constant grilling and failure to grasp the reality of my situation. It was totally claimant unfriendly. Pam

24.For most claimants, the PIP and ESA assessment systems work. The direct testimonies quoted in this report, however—and the many other submissions like them—show that sometimes things go very wrong indeed. We accept that the accounts included in this report are the perceptions of those using the system, and that those providing assessments might see things differently. But the common themes running through many of the comments convince us that there are some generic issues which need to be addressed. These are:

a)Errors in reports: the inclusion of basic factual errors, omission of relevant details that were shared either during the assessment or in supporting evidence , or misrepresentation of the assessment;

b)Difficulties in completing PIP and ESA application forms—in particular, the distress experiences by claimants in having to focus extensively on what they are unable to do;

c)Problems arising from lack of assessor knowledge about the functional implications of different conditions, and inappropriate use of observations of claimants to judge functional impact;

d)The effectiveness of Mandatory Reconsideration in challenging a decision, and the stress associated with going through both Mandatory Reconsideration and Appeal.

We call on the Department to acknowledge explicitly that it recognises the problems we have set out here and set out what, if anything, it is doing to monitor and resolve them. We will return to this issue shortly, setting out our policy recommendations in a subsequent report. But those who have taken the time and effort to contact us deserve a speedy and substantive response from the Government.


15 We were told that, across all three contractors, assessors carry out an average of three to five assessments per day. Atos assessors complete all reports at the end of the day, whereas Capita assessors complete their reports after each assessment

16 NHS Health Scotland (PEA0353), Coventry Citizens Advice (PEA0360), Greater Manchester Law Centre (PEA0217), Scarborough and District Citizens Advice (PEA0359)

17 Name withheld (PEA0118)

18 Q369 (Sarah Newton)

20 Name withheld (PEA0376)

21 DWP (PEA0441)

22 Q125–126 (Dr Ian Gargan and Dr Barry McKillop), Q228 (Dr Paul Williams)

24 Name withheld (PEA0227)

25 Name withheld (PEA0250)

26 Name withheld (PEA0376)

27 Name withheld (PEA0467)

28 Maximus, Revised WCA handbook, July 2017, p.29; DWP, PIP Assessment guide part one: the assessment process, November 2017, p.26

29 Name withheld (PEA0118)

30 Down’s Syndrome Association (PEA0205)

32 Letter from the Chair to the Minister for Disabled People, November 2017. The 80% performance indicator was withdrawn in response to the Committee’s questioning. See Work and Pensions Committee, Victory for claimants as Government agrees to drop MR measure, December 2017.

33 Q415–417 (James Wolfe)

34 Q324–325 (Rob Holland and Victoria Holloway), Parkinsons UK (PEA ), Hammersmith and Fulham Mind (PEA0041), Oxfordshire Welfare Rights (PEA0135), Z2k (PEA0297), Citizens Advice Lincolnshire (PEA0367), Revolving Doors Agency (PEA0277), Greater Manchester Law Centre (PEA0217), National Deaf Children’s Society (PEA0402), Inclusion London (PEA0370), PCS Union (PEA0357), Citizens Advice Richmond (PEA0332), Disability Benefits Consortium (PEA0294)

36 Ministry of Justice, Social security and child support tribunal data, table SSCS.3, December 2017. Appeal data correct to September 2017.

37 Salford Welfare Rights and Debt Advice Service (PEA0338)

38 Name withheld (PEA0024)




1 February 2018