Written evidence from Leonard Cheshire Disability (PEA0334)

Introduction

1. Leonard Cheshire Disability (LCD) is one of the UK’s leading charities supporting disabled people. At Leonard Cheshire Disability, we work for a society in which every person is equally valued. We believe that disabled people should have the freedom to live their lives the way they choose - with the opportunity and support to live independently, to contribute economically, and to participate fully in society.

2. Our response to this inquiry is supported by evidence gathered in the Big Benefits Survey, and carried out on our behalf by the Disability Benefits Consortium (DBC) in 2017. The survey contains data from 1,730 disabled people about their experiences of claiming ESA and PIP. All statistics and quotes in this response are drawn from this survey.

Key recommendations

3. Based on our evidence and expertise we provide a series of recommendations which will:
1. improve the experience of disabled people seeking to claim Employment and Support Allowance (ESA) and Personal Independence Payment (PIP)
2. improve the accuracy of the reports contractors make for DWP decision makers
3. ensure accurate outcomes of assessments thereby avoiding expensive tribunals.

4. Our summaries of the main recommendations and actions are listed below:

Evidence

5. Additional evidence from a professional can provide assessors with an informed understanding of an individual’s condition, enabling them to ask probing questions and gain a full understanding of the impact of an individual’s condition(s). This is particularly the case where the assessor does not have expertise in the condition(s) in question. However, evidence is often not collected nor used, contributing to the inaccuracy of the assessors report and ultimately leading to incorrect outcomes.

6. In light of this, we support the DBC’s recommendation[1] that the DWP should commission an independent review of the evidence gathering processes, to explore ways to:
1. educate health and social care professionals on how to provide relevant supporting evidence;
2. ensure duties and responsibility of the assessor, the DWP and claimant are clear and observed;
3. make sure the DWP has a strategy to articulate to claimants what evidence will be most useful for their claim; and
4. ensure evidence supplied by friends and family members is given due consideration.

7. Whilst such a review is conducted, as a matter of urgency, the DWP must investigate cases overturned on appeal, looking into the quality of the assessor’s report, including their use of available evidence. Where this is identified as a key factor in the inaccuracy of the outcome, contractors should face penalties.

8. Disabled people should receive clear and comprehensive guidance from DWP on what evidence they should provide to help their claim. Currently those claiming for PIP and/or ESA are unclear as to what evidence is helpful and spend time and energy sourcing evidence that does not help their application. This guidance could draw from, or signpost claimants towards, guidance available from independent sources, such as the guidance on the Citizens Advice Bureau website for ESA claimants.

9. DWP should routinely ask benefit claimants at the start of a claim if they wish information from other claims to be considered, but should only do so where permission is given.

Face to Face assessment

10. Assessors should be able to consult with experts in any condition or disability to help fill their knowledge gaps. This will help ensure they ask the right probing questions in the assessment and accurately assess the impact of someone’s condition in their reports. For example, without some knowledge of a condition, particularly those with hidden symptoms, assessors can make assumptions about the claimant’s abilities to work or carry out daily activities. 

11. DWP should independently assess the experiences of those who attended a face-to-face assessment for PIP and/or ESA. This information should be used to ensure providers are meeting customer service standards.  This will help to ensure claimants do not experience a poor level of treatment.

12. It is essential that assessors are able to determine the extent to which an individual can undertake an activity ‘reliably, repeatedly, safely, and in a timely manner’ for each of the activities being assessed under PIP. For example, someone might be able to walk 50 metres but are unable to do it again in the same day because of the pain and fatigue that result or those with fluctuating conditions. In this case the individual should be deemed unable to do this activity. DWP should evaluate guidance that is currently being followed, with penalties for contractor assessors if they have failed to do so. This should particularly be the case for overturned appeals.

13. For both ESA and PIP, it is essential that assessors ask probing questions to accurately evaluate the impact of a fluctuating condition on an individual. For example, someone might appear to be able to undertake the activities being assessed on the day of the assessment but are unable to do this on their ‘bad’ days. Again, DWP must evaluate the extent to which assessors are doing this, with penalties for failure to comply.

Reforming the Work Capability Assessment (WCA)

14. The WCA needs a complete overhaul so that it accurately identifies the range of barriers disabled people face when moving into work. Assessments should determine individuals’ capabilities based on the real-world impact of a person’s condition.

Mandatory reconsideration and appeals

15. When undertaking a Mandatory Reconsideration, the DWP decision maker should ensure that the assessment has considered:
1. Whether the individual can undertake all activities under assessment can be undertaken ‘reliably, repeatedly, safely and in a timely manner’, in the case of PIP.
2. Where the assessor has considered the full impact of the condition(s) the individual has for both PIP and ESA.
3. Seek additional information which will help fill in any missing gaps. This could be from the health professional the claimant named in their application; an expert in any of the conditions listed; or from evidence provided by the claimant themselves (where it is easily available).

16. An independent advocate should be provided for an appeal, if this support is needed, to ensure that everyone who wants to appeal has the support to do so. Tribunals can be daunting for individuals unused to the process and need support from an independent professional.

17. PIP claimants should be paid an ‘assessment rate’ during the lengthy appeals processes, to enable them to maintain their independence.

Reassessments

18. We welcome the government’s intention to introduce a more appropriate re-assessment process for people who have severe health conditions and disabilities.

19. We support the DBC’s recommendation that the DWP introduce indefinite PIP awards for people with severe, complex conditions that have no prospect of improvement or are progressive. If reassessments absolutely must be undertaken because additional support may be available, these should happen without the need for a face-to-face assessment.

Assessors and assessments

Q.1 Do contractor assessors possess sufficient expertise to carry out assessments for people with a wide range of health conditions?

20. Contractor assessors for PIP and ESA have to assess the impact of a diverse range of disabilities and health conditions, many of which can fall outside the scope of their expertise. For example, physiotherapists who assess people with mental health conditions lack the understanding necessary to correctly assess the impact of the condition on the individual, particularly when the symptoms of many mental health conditions are not obvious. 

21. This is demonstrated by the fact that a majority of disabled people did not feel the assessor understood their disability (for ESA claimants this was true for 79%, 74% for PIP claimants).

“The health care professional conducting my [WCA] assessment did not understand the difference between 'in a coma' and 'altered consciousness'. [I was] awarded 0 points in the assessment despite written evidence that I have frequent episodes of altered consciousness due to hypoglycaemia.” – ESA claimant with Type 1 Diabetes

“The health professional found it surprising that I have a full range of movement in my joints even though the nature of my condition means I have a greater than full range of movement which is the actual problem” – PIP claimant with hypermobility

22. Additional evidence from a professional can provide assessors with an informed understanding of an individual’s condition, enabling them to ask probing questions and fully understand the impact of an individual’s condition(s). This is particularly the case where the assessor does not have expertise in the condition(s) in question. However, evidence is not being used in many cases. More than two in five respondents said that at their most recent Work Capability Assessment (WCA) the assessor did not take into account of the evidence they submitted in advance (45%). Almost two thirds of PIP claimants disagreed with the statement that their assessor took into account the evidence they submitted in advance (63%).

23. Moreover, half (51%) of ESA claimants said that it was hard or very hard to supply supporting evidence and almost one in ten (9%) said it was impossible. For example, over a third (36%) said this was because it was unclear what information they needed to provide. Over a third (36%) said they could not get hold of the evidence in time (i.e. within the time they have to return their application form). For those who were undergoing their assessment for PIP more than half (52%) said it was hard or very hard to supply the supporting evidence, with more than one in ten (11%) stating it was impossible.

“I was told by Capita on the day that they did not have any knowledge of the letters [that I sent in prior to my PIP assessment.]” – PIP claimant with Neuropathy

“Originally I had a diagnosis of ME and when I tried to get evidence of actual diagnosis of a pseudomonas infection that is antibiotic resistant I was unable to get any from GP or hospital.”- ESA claimant with M.E

24. Significantly, ‘hidden symptoms’ (i.e. symptoms that are not immediately visible without further investigation like pain and fatigue) are not always fully taken into account. Six in 10 (61%) of those who had a recent WCA and seven in ten (72%) of those who had a PIP assessment said that the assessor did not take into account hidden symptoms. These symptoms can be debilitating and significantly limit an individual’s abilities to carry out daily activities, or their ability to work. Missing this crucial information means the report will fail to provide a full and accurate picture of the impact of someone’s disability, leading to inaccurate outcomes of claims.

“I am too physically disabled to dress myself most days and have difficulty walking. Yet if you can pick up a pen or a pound coin, lift a small milk carton,  push a button once, or turn a page in a book then you are fit to do a job” – ESA claimant with Raynaud’s Syndrome

“I am basically house bound, my heart condition gives me symptoms of breathlessness, dizziness, chest pain & palpitations, these happen at rest or upon exertion, bending and standing. The risk of cardiac arrest due to abnormal heart rhythms requires an implanted cardiac defibrillator in my chest but as my condition is invisible it’s extremely hard to prove how it may affect me.” – ESA claimant with a heart condition

25. Assessors must take into account whether an individual can undertake the activities being assessed “reliably, repeatedly, safely and in a timely manner”. For example, an individual might be able to walk 50 metres once but the pain it causes them means they could not do it again that day. Under the ‘reliably, repeatedly and safely’ rules, this individual should be assessed as unable to do this activity and be awarded points in the assessment criteria. It is therefore essential that the assessor asks probing questions to ensure this is the case for each activity.

26. Our findings show that more often than not, assessors fail to do this. For PIP, over half (56%) did not think assessors took into account whether they could do activities reliably, repeatedly, safely and in a timely manner. The findings were similar for ESA claims with 58% feeling this way.

27. It is important assessors take time to ask probing questions to understand the impact of someone’s condition, particularly if it is out of their area of expertise. Many disabled people did not feel this was the case with more than half (55%) of ESA claimants and 50% of PIP claimants saying so.

28. More than two thirds (69%) of ESA claimants and 65% of PIP claimants that saw the written report produced from their assessment felt that it badly reflected the answers they gave.

29. The question asks whether assessors have sufficient expertise to carry out assessments for people with a wide range of health conditions and the evidence highlights that not only do they not have enough expertise but they also lack the evidence and skills to do so which in turn produces inaccurate reports sent to DWP decision makers.

Q.2 Is Department of Work and Pensions’ quality control for contractors sufficient and effective?

30. The evidence provided in our answer to question 1 suggests that quality control for contractors is not sufficient or effective; with many disabled people reporting the process has failed to capture the impact of their disability. For example, the NAO found that 13% of ESA and PIP assessment reports did not meet contractual quality standards between September 2014 and August 2015.[2] This is further supported by the volume of decisions that are overturned at the appeal stage (65% for PIP and 68% for ESA).[3]

31. The overall experience of disabled people when they are assessed by contractors is poor with almost a third (31%) of those attending an assessment for ESA reporting that the assessor had a negative attitude towards them and just under a third (27%) saying they felt the same way about their PIP assessment.

“The assessor was aggressive, rude and intimidating. She was hurrying me from one question to the next. It was a completely humiliating experience.” – PIP claimant with chronic migraine

“Her attitude was intimidating. When my husband tried to help explain, when I was struggling, he was told to be quiet. She let me sit in tears, and put her pen down, folded her arms and said “I’m waiting”. I was not treated as human.” – ESA Claimant with Chronic Regional Pain Syndrome and arthritis
 

32. Four in ten (40%) of those claiming ESA and a third (33%) of those claiming PIP disagreed with the statement that the assessor treated them as an individual . It is essential that disabled people are treated with dignity.

Q.3 Should the options for reforming the Work Capability Assessment mooted in the Government’s Improving Lives green paper be taken forward

33. Along with many other organisations, we have been calling for reform of the WCA for some time as we recognise it is not fit for purpose. The assessment needs a complete overhaul so that it accurately identifies the range of real-world barriers disabled people face moving into work.

34. The proposals in the government’s Improving Lives green paper do not provide enough detail about what a new assessment would look like. We would need to see this set out in detail before we can fully comment.

35. However, on the broad suggestions mooted in the green paper, we are supportive of a system that improves on the current position.  The assessment for financial support would significantly benefit from being separate from conversations about employment or health support.

36. However, without significant overhaul of the WCA, other actions risk failure. Current problems with the WCA significantly hinder Jobcentre Plus and contractors from supporting disabled people in to work resulting in a widely discredited and unfair system in the eyes of disabled people. This is evidenced with two thirds of decisions being overturned on appeal.

37. Assessments should determine individual’s capabilities based on the real-world impact of a person’s condition, as opposed to looking at whether they can undertake simple tasks. This ensures a more practical and sustainable approach towards assessing individual’s ability to work.

38. It is vital that the assessment focuses on how far disabled people are from the job market and identifies the barriers that are stopping them getting there. It should also look at an individual’s previous experience and skills. It should be developed with the involvement of disabled people at all stages.

39. As part of WCA reform, we would support the concept of a second, separate assessment which can enable the assessor to have a frank conversation with the disabled person, without any fears of losing benefits. Claimants spend a lot of time and energy on trying to prove they are not fit for work and therefore eligible for ESA. They are unlikely to focus on what they are able to do, with some support, in case it puts them at risk of being found fit for work.

40. This assessment should provide the opportunity to gather a more holistic understanding of the individual’s back to work needs, including health support needs, transport and housing needs, among others. The assessment could also look at what the individuals feel they’re capable of doing and what support or adjustments they would need in order to do this. It could also include a possible indicative Access to Work assessment. This would be helpful for both the individual and potential employer as they would know what funding they would need to make adjustments in the workplace. 

41. Support that disabled people receive following this assessment should personalised and include a voluntary offer of support with no conditionality attached.

42. We also share the concerns of the Work and Pensions Select committee[4] that this new assessment would place more responsibility on Work Coaches than is appropriate for their current levels of expertise. We support its recommendation that Jobcentre Plus should develop a senior disability specialist role for Work Coaches who are responsible for these assessments.

43. We welcome the government’s intention to introduce a more appropriate re-assessment process for people who have severe health conditions and disabilities. We support the DBC’s recommendation that the DWP introduce indefinite PIP awards for people with severe, complex conditions that have no prospect of improvement or are progressive and so will only get worse. If reassessments absolutely must be undertaken because additional support may be available, these should happen without the need for a face-to-face assessment.

Q.4 What examples of best practice in assessing eligibility for benefits are available internationally, and how transferrable are they to ESA and/or PIP?

42.   Some international examples assessments of work capability take account of additional factors that impact disabled people’s ability to work, including previous employment history, age and education. Such an approach should be considered for adoption in the UK.

43.   In the Netherlands, assessments take account of previous employment history. Assessments will record their capability for work as a percentage of full capability for work. Individuals receive a supplement to make up for the loss of earnings due to their disability, enabling them to work without losing all their benefits. Those who are assessed as being 80% disabled and unlikely to recover receive a payment equivalent to 75% of their prior full daily wage.[5]

44.   The Canadian system takes a holistic view of an individual’s situation to assess someone’s ability to work. It takes age, education and work experience into account.[6]  This contrasts with the narrow model of the WCA which does not account for the broader context in which a disabled person may be unable to enter or sustain work.

Mandatory Reconsideration and appeal

Q.5 Why do claimants seek to overturn initial assessment outcomes for ESA and/or PIP?

44. Disabled people do not feel the process accurately reflects the impact of their disability, with large numbers appealing their PIP or ESA initial decisions. Citizen’s Advice Bureau found in a survey of their network that 88% of respondents saw inaccuracies in PIP assessments.[7]

45. A review of DBC survey open text responses also highlights many sought to appeal the initial decision because they were not happy with the way their assessment was carried out, or because their assessor did not have sufficient expertise in their condition to carry out a representative assessment, as discussed above.[8]

Case study

Peter*, who has an autoimmune disease, a spinal condition and anaemia, had his first WCA carried out by a nurse who he did not believe had sufficient knowledge to assess his condition. He believes this is why he was placed in the Work Related Activity Group of ESA when he actually should be in the support group.

He sought a mandatory consideration which maintained the original decision and so he went to appeal. Eventually, a tribunal panel made a judgement that he should be placed in the Support Group.

For his next assessment in 2016 the tribunal judge recommended that it be carried out by somebody who had expertise in his condition.

*Names have been changed to protect anonymity
 

46. Some disabled people do not decide to appeal, despite disagreeing with the initial assessment outcome. Analysis of open text responses to the survey suggests that many feel they have used up a lot of their energy with their application which may have had a negative impact on their physical or mental health. They simply do not have the energy or support they need to go through what they believe will be a similarly arduous appeal process.

“I was too ill ever to appeal a wrong decision. If I had have been fitter I would have had the strength and willpower to appeal but I was too emotionally upset and my mental health was not good by the time I had been through the face to face interview.” – ESA claimant with arthritis

“I was too unwell to appeal, knowing that the extra stress would cause further relapse.” – PIP claimant with M.E

Q6. Why are levels of disputed decisions higher for PIP than for ESA?

47. Our evidence, as set out in answer to question 1, shows dissatisfaction with the process in terms of accuracy and claimants’ treatment are similar across both PIP and ESA.

Q.7 Is the Mandatory Reconsideration (MR) process working well for claimants of ESA and/or PIP?

48. Mandatory Reconsiderations (MR) provide DWP with a cost-effective way to correct errors and can avoid putting disabled people through the unnecessary stress and financial hardship caused by drawn-out appeal tribunals. However, for many, MRs fail to get the decision right, leaving many with no other option but to go to appeal. More than six in ten ESA (68%) and PIP (65%) decisions are overturned at appeal, all of which would have had to go through a MR first, demonstrating MRs are not fit for purpose.[9]

49. Aside from this, we contend it is unlikely the MR will provide a more accurate outcome without additional information. This could be from the health professional the claimant named in their application; an expert in any of the conditions listed; or from evidence provided by the claimant themselves (where it is easily available). However, in many cases disabled people are unaware that they should try to provide additional evidence at this stage.

“I was in the process of providing more information for the Mandatory Reconsideration when I received a text from the DWP saying they had all the information they needed. Then, when the decision came back, it stated I had not provided any more information.” – PIP claimant with vertigo and diabetes

“We asked for a mandatory reconsideration where they phoned and asked a couple of questions but we weren't informed we could supply any further evidence, and hadn't at that time seen the abysmal WCA report they were using to base their 'findings' on.” – ESA Claimant with a balance disorder and fainting

Q.8 What accounts for the rate of overturned decisions at appeal for PIP and/or ESA?

50. The assessment process and MR are failing to accurately assess of the impact of disabled people’s conditions. It is when extra evidence or an expert is present at the tribunal that often results in overturning the appeal. Those whose appeal was successful felt that this was because the people on the appeal panel understood their condition better (46% said this about their ESA claim, 39% for PIP) or because a doctor or other health professional was on the panel (29% for ESA, 20% for PIP). This is the reason why specialists or well-trained advisors are needed at the start of the process.

Case study

Samira* has Rheumatoid Arthritis. She was declared Fit for Work after her WCA, but she felt that the report submitted by the doctor who carried out her assessment did not contain accurate information. For example, when asked to walk in the assessment, she fell. However the report said that she had no difficulties walking.

Samira appealed the decision, and it went to tribunal. The doctor on the tribunal panel had a better understanding of her condition, and said that she should have been granted ESA.

Claimant experiences

Q.10 Do prospective claimants currently understand the purpose of the assessment?

51. The key problem with the assessment is that it fails to accurately capture the impact of an individual’s condition. We do not have evidence to suggest that an inability on the part of the claimant to understand the purpose of the assessment is the main issue. However, our evidence does suggest that disabled people struggle to understand what information they need to provide. As discussed above, of those who found it difficult to provide supporting evidence for their ESA claim, over a third (36%) said this was because it was unclear what information they needed to provide.

Q11. How could claimants be helped to better understand the assessment process?

52. As stated above, our evidence does not suggest this is a key problem, although understanding what type of evidence to provide is a difficulty for some.

53. As we describe in the recommendations above, disabled people should receive clear and comprehensive guidance from DWP on what evidence they should provide to help their claim. This could draw from, or signpost claimants towards, guidance available from independent sources, such as the guidance on the Citizens Advice Bureau website for ESA claimants.[10]

Q12. Are some groups of claimants particularly likely to encounter problems with their assessments – and if so, how can this be addressed?

54. Individuals with fluctuating conditions and those with hidden conditions encounter problems with their assessments. Over half of those claiming PIP (55%) disagreed with the view that assessors took into account how their symptoms/aspects of my disability or health condition change/fluctuate (e.g. How their symptoms affect them on a ‘good day’ as well as a ‘bad day’). Slightly more (58%) who applied for ESA felt similarly. When assessors have little expertise in the condition in question, their assessment could be made on the basis of how the individual presents to them on the day. If this was a particularly good day they will not capture an accurate reflection of the individual’s disability.

55. As discussed in question 1, those who have disabilities which are not immediately obvious and require further investigation are disadvantaged in a process whereby assessors do not have the expertise nor evidence to fully comprehend the impact of someone’s hidden disability or/and condition.

Q13. Should the assessment processes for PIP and ESA be more closely integrated? How else might the processes be streamlined for claimants?

56. We do not believe that the assessment processes should not be more closely integrated. We echo concerns raised by the DBC that the assessments serve two different functions and so integration is inappropriate.

57. The PIP assessment examines the ability of a claimant to complete a series of everyday living activities that act as a proxy for the extra costs disabled people face, while the current Work Capability Assessment focuses more narrowly on capability to undertake ‘activities and functional capability that a reasonable employer would expect of his workforce’.

58. In addition, the current inaccuracy of many decisions also limits how much they should be relied upon to inform assessments for other benefits.

59. However, subject to appropriate safeguards and caveats, we accept there could be improved information sharing across benefit systems. Implementing changes to make use of supporting information held by the DWP from previous ESA and PIP assessments could help to address longstanding issues around gathering supporting evidence for claims.

60. For these claimants who claim both benefits there could be relevant information held that could streamline the process. In particular, this could minimise the burden placed both on disabled people and their care professionals in providing evidence for benefit claims.  However, this must be subject to appropriate safeguards and claimants should give consent before any information is shared. 

Q14. What changes could be made earlier in the process to ensure fewer claimants feel they need to appeal?

61. Our responses to question 1 describe the problems with the process which contribute to inaccurate reports and outcomes. We set out at the beginning of this response our recommendations which will help to reverse this trend.            

November 2017