Written evidence from Parkinsons (PIP0005)

About Parkinson’s UK

1.      Every hour, someone in the UK is told they have Parkinson's - a brain condition that turns lives upside down, leaving a future full of uncertainty.

2.      Parkinson's UK is here to make sure people have whatever they need to take back control – from information to inspiration.

3.      We want everyone to get the best health and social care. So we bring professionals together to drive improvements that enable people to live life to the full.

About Parkinson’s

4.      Parkinson’s affects about 127,000 people in the UK[1]. While the majority of people develop symptoms after the age of 65, thousands of working age people are also affected[2].

5.      Parkinson’s is a progressive, fluctuating neurological disorder, which affects all aspects of daily living including talking, swallowing and writing. People with Parkinson’s often find it hard to move freely. There are also other issues such as pain, depression, dementia, hallucinations, and continence problems. The severity of symptoms can fluctuate from day to day and people can experience rapid changes in functionality in the course of the day. There is no cure.

Overview

6.      Parkinson’s UK welcomes the Work and Pensions Select Committee’s call for evidence around Personal Independence Payment (PIP). We would be pleased to provide further written or oral evidence as required. In particular, we are happy to provide a copy of our response to the Second PIP Independent Review, which sets out the experience of people with Parkinson’s experience and our concerns in much greater detail.

7.      Parkinson’s UK also Co-Chairs the Disability Benefits Consortium of over 80 charities and organisations. We would be pleased to provide additional evidence in this context too.

8.      There is strong evidence that PIP failing people with Parkinson’s. Recent Department for Work and Pensions (DWP) figures show that as of October 2016, a quarter of people with Parkinson’s who have been reassessed from Disability Living Allowance (DLA) to PIP have lost some or all of their benefit, despite the fact that Parkinson’s is degenerative[3].

9.      We also note that the most recent appeals figures show that PIP appeals make up 43% of total Social Security and Child Support tribunal disposals and that 65% of all PIP appeals are successful[4]

10.  Our helpline and Local Advisers receive regular calls from distressed people who have been forced to return their motability vehicles following their PIP assessment, despite having had them for years. Given that there were 14,404 people with Parkinson’s in receipt of DLA in August 2016[5] we are gravely concerned that many thousands more people with Parkinson’s will go through the trauma of losing access to vital support following assessment for PIP - unless urgent improvements are made.

11.  For the evidence for our submission we have used:

• A survey of 40 our Local Advisers and Benefits and Employment Advisers.
• A survey of around 100 people with Parkinson’s who have been through the PIP claim process.
• Reports, complaints and comments from people affected by Parkinson’s since the introduction of PIP in April 2013.

12.  Our key concerns are as follows:

• Atos and Capita assessors have an extremely poor knowledge of Parkinson’s and, in many cases, conduct themselves poorly in assessments
• The PIP assessment criteria, particularly the mobility descriptors, are poorly designed
• The DWP appears to take no responsibility for the overall quality of PIP assessments and does nothing to share good practice/learnings from appeals and reconsiderations

Which aspects of the current assessment process for PIP are and are not conducive to accurate decision-making? What improvements could be made?

13.  The scale of incorrect decisions for people with Parkinson’s clearly demonstrates that two major aspects of the assessments are not conducive to accurate decision-making – assessors’ knowledge and understanding of Parkinson’s (and their general approach to assessments) and the PIP assessment criteria themselves.

Assessor knowledge and understanding of Parkinson’s

14.  We are gravely concerned about Atos and Capita assessors’ knowledge and understanding of Parkinson’s. Parkinson’s UK regularly receives reports that assessors lack even a basic understanding of the condition and that assessment reports are regularly inaccurate. We have received more than one example of assessors asking people ‘how long do you expect to have Parkinson’s for?’ Questions like this are both ignorant and offensive to people with degenerative conditions.

15.  We are particularly disappointed, as Parkinson’s UK does work with both assessment companies to review training materials and raise cases of poor quality assessments. However, this does not appear to have made any difference in improving outcomes, which is why further action is needed.

16.  We also regularly receive examples of callous behaviour from assessors. A Local Adviser explains: “Last week my client attended a medical centre for an assessment for PIP.  He was told that anxiety had nothing to do with Parkinson’s [despite the fact that it is a common symptom of the condition] and was not given the opportunity to ask questions or to in any way respond to questions fully.  The assessor told him that he did not need him to elaborate on the symptoms of Parkinson’s as he had all he needed on the screen.  On the way out he was told that he should go to the job centre to look for voluntary work!” 

17.  Assessors also use ‘informal observations’ to make unreasonable and inaccurate assumptions about a person’s condition and, in particular, their ability to drive. The wife of a person with Parkinson’s explains: “The assessor came and did a home assessment. The report said that because my husband could stroke the dog, he could drive’. Another person, who asked for his decision to be reconsidered, explains: ‘On my report, it said that I was ‘seen to have a glass of water several times’. The assessor said I can therefore drive a car.”

18.  Although the Department for Work and Pensions (DWP) has overall responsibility for the quality of assessments, we are frustrated that the Department does not appear to acknowledge this. Parkinson’s UK has been forced to engage separately with Atos, Capita and the DWP. There is no opportunity to share concerns between all three parties at once and it appears that good practice is not shared between them.

19.  Recommendation: The DWP should acknowledge its overall responsibility for assessment quality, in order to improve accountability and share lessons from appeals/mandatory reconsideration decisions with assessment providers in a systematic way.

20.  Recommendation to committee: The committee explores the extent of the DWP’s involvement in monitoring of assessment quality, why there are no regular statistical releases on the quality of assessment reports and whether there is a process in place to help providers learn from poor assessments.

PIP assessment criteria – ‘20 metre rule’

21.  Parkinson’s UK believes that the strict eligibility criteria are also responsible for systematically inaccurate PIP assessment outcomes.

22.  We have always opposed changes to the threshold for enhanced rate mobility and believe the introduction of a 20 metre walking distance (as opposed to 50 metre under DLA) as the threshold for accessing the higher rate of mobility is both arbitrary and driven by the intention to force people with physical difficulties walking, including those with Parkinson’s, off a benefit in order to save money.

23.  We are now receiving examples from our network of Parkinson’s Local Advisers that people with Parkinson’s are consistently not being awarded enough points to qualify for the enhanced rate. People living with the condition are, in many cases, losing access to the enhanced-rate mobility component with greater frequency than the enhanced daily-living component.

24.  A Parkinson’s UK Benefits and Employment Adviser, who helps people with their appeals explains: “I currently have seven people who I am helping with reconsiderations or appeals following a poor PIP assessment, and I get more every week. Of these four have been moved from DLA to PIP and kept their daily living award the same but completely lost their mobility award. They all had high rate mobility, two had a Motability car (which they have had to return), three of them had the higher-rate mobility for over 10 years.”

25.  We conclude that the ‘20 metre rule’ is to blame. We also note that Motability has warned that people with a wide range of long-term conditions and disabilities are returning cars at the rate of 800 a week following their PIP assessments[6].

PIP assessment criteria – March 2017 regulations changes

26.  We also feel that the Government’s recent changes to the PIP ‘planning and following a journey’ criteria will compound the poor quality of the assessment criteria and could prevent people with Parkinson’s qualifying in future.

27.  The descriptor as originally drafted does not go far enough to acknowledge the significant psychological impact many people with Parkinson’s long-term physical conditions also experience, for example as a result of cognitive or associated mental health symptoms, on their ability to follow a journey.

28.  The PIP assessment guide defines ‘overwhelming psychological distress’ narrowly as ‘distress related to an enduring mental health condition or a cognitive or intellectual impairment.’ This could mean that the only way a person can qualify, is if they have received a separate, specific diagnosis of depression, anxiety disorder or another mental health condition.

29.  At any given time up to 40% of people with Parkinson’s will have depression and a further 40% will experience anxiety. We are therefore concerned that many people with Parkinson’s (which includes depression and anxiety as a common symptom) will not score anything under the original descriptor.

30.  Parkinson’s Local Advisers share that people with Parkinson’s simply do not qualify under the ‘planning and following a journey’ descriptor. We believe this is because of the poor design of the descriptor.

31.  Recommendation: The Government fundamentally redesigns the PIP assessment to ensure that assessment criteria are fair, evidence based and result in the correct decision first time.

32.  Recommendation to committee: The committee asks about the impact of the ‘20 metre rule’ on PIP assessment outcomes and the number of people with degenerative conditions who have lost support upon reassessment from DLA as a result.

Do Atos and Capita staff conducting PIP assessments possess sufficient expertise to make accurate decisions on claims involving a wide range of mental and physical health conditions?

33.  As mentioned in response to question one, we do not agree that staff conducting assessments possess sufficient expertise to make accurate decisions on Parkinson’s and other health conditions.

Do staff take enough account of additional evidence supplied by claimants?

34.  We regularly receive examples of Atos and Capita assessors not reading, or paying attention to the evidence submitted by people with Parkinson’s at the start of their claim. Our survey of people with Parkinson’s who have undergone the PIP assessment process found that 67% of respondents did not feel that the supporting evidence they provided was taken into account.

35.  A Parkinson’s Local Adviser, who attended a PIP assessment with a person with Parkinson’s explains: “The assessor proceeded to ask for identification. I said that my client also had some paperwork which could support his claim. The assessor put his pen down and in a harsh voice said. ‘I have already told you I will not be looking at any paperwork, if you want to submit paperwork I will inform you what to do at the end’. I did not pursue this any longer, as I felt that the situation developing was already affecting my client. He looked clearly stressed and worried.”

36.  From our conversations with Atos and Capita, we understand that process for assessors reviewing evidence varies between the providers. Where Capita assessors are provided supporting evidence in advance of upcoming assessments, Atos staff review evidence only just before seeing the claimant.

37.  For example, a person with Parkinson’s who attended an Atos PIP assessment was told: “l only just got your papers 15 minutes ago.”

38.  Recommendation: The DWP compels all PIP assessors and DWP decision-makers to review supporting medical evidence before making a decision or recommendation and to confirm that this evidence has been considered when submitting their reports.

39.  Recommendation to committee: The committee asks about Atos and Capita assessors’ approaches to reviewing supporting evidence and why the DWP has not standardised this process

Is the face-to-face assessment appropriate for claimants with a range of different conditions?

40.  No. As mentioned in response to question one, we are gravely concerned that the quality of assessments is extremely variable.

41.  Parkinson’s UK is particularly concerned that people with the condition are repeatedly being required to attend face-to-face assessments, despite the fact that the DWP PIP Assessment Guide states[7] that with sufficient medical evidence, people with Parkinson’s should be given a paper based review instead of a face to face assessment. Paragraph 2.5.10 highlights ‘claimants with severe neurological conditions such as motor neurone disease, dementia, Parkinson’s disease’ are among the ‘cases that should not require a face-to-face consultation’.

42.  However, a third of Local Advisers that responded to our survey reported that, in their view, all of the people with Parkinson’s they supported provided enough evidence to be assessed on paper, but were still called for a face-to-face assessment.

43.  Given that Parkinson’s is a degenerative condition, we feel it should be possible to conduct the vast majority of assessments for people with the condition entirely on a paper basis, thereby reducing the stress and anxiety of having to attend a face-to-face assessment – a process which few people with Parkinson’s have any confidence in.

44.  Parkinson’s UK strongly believe that the DWP should introduce a ‘paper-by-default’ approach for people with Parkinson’s in particular, and go to greater lengths to proactively acquire sufficient supporting evidence from relevant health and social care professionals, so a decision can be made without the need for a face-to-face assessment.

45.  In cases where the assessment provider has insufficient evidence to make a decision on paper, claimants should be offered the opportunity to contact additional professionals to request they supply further evidence, or receive a home-based assessment if they would like their claim expedited. Face-to-face assessments should only ever be used as a last resort for people with severe, degenerative neurological conditions such as Parkinson’s.

46.  Recommendation: The DWP introduce a ‘paper-by-default’ protocol for people with severe, degenerative conditions, like Parkinson’s, and offers claimants with these conditions the opportunity to provide further supporting evidence wherever possible.

47.  Recommendation to committee: The committee explores whether the policy for deciding whether to offer paper based reviews is fit-for-purpose and why the DWP and assessment providers do not collect detailed data on which condition groups are being assessed on paper.

What changes are needed to improve the accuracy of decisions made in initial assessments and in mandatory reconsideration, given that the majority of decisions that go to appeal are overturned?

48.  As mentioned above, Parkinson’s UK strongly recommends that:

• The DWP is held fully accountable for assessment quality and takes urgent steps to drastically improve the consistency and quality of assessments and share learnings from appeals with assessment providers.
• The PIP assessment criteria are reviewed and updated – particularly the ‘planning and following a journey’ and ‘moving around’ descriptors to ensure they are set at a fair level.

What are the most common reasons you come across for decisions being overturned on appeal?

49.  In our experience, many decisions are overturned at appeal simply because the supporting evidence provided by the claimant was not taken into consideration, or that the assessor’s report contained significant inaccuracies.

50.  For instance a person with Parkinson’s provided supporting evidence from their Parkinson’s nurse and another health professional but was awarded no points whatsoever. The Benefits and Employment Adviser who successfully overturned the decision at appeal explains: “The evidence that won this case was in front of the decision-maker at the start when he/she made their initial decision to disallow this claim. All l did was point out to them the information they had page by page.”  

51.  In many cases decisions are overturned because the tribunal recognises the systemic inaccuracy of assessors’ reports. A Local Adviser explains: “Because of the reasoning given on the report from the awarding officer for their decision on the level of the award. I often refer back to the evidence that has already been submitted.”

52.  Another adds: “It is usually [necessary to appeal] to dispute the claims made in the medical assessment that the person with Parkinson's is more able than they actually are.”

Is the mandatory reconsideration stage functioning properly? How could it be improved, or should it be abolished?

53.  In our experience, mandatory reconsideration (MR) functions as an unnecessary ‘hurdle’ designed to artificially lengthen the claim process and deter claimants from appealing their decision.

54.  We note, for example, DWP figures which show that ‘by the end of January 2017, 85% of new claims reconsiderations and 79% of reassessed DLA reconsiderations for normal rules resulted in no change to the award’[8] despite 65% of PIP decisions that are subsequently appealed being overturned in the claimant’s favour.

55.  We have received several examples from local advisers of people with Parkinson’s who were actively discouraged from making mandatory reconsideration requests, or in some cases, refused altogether.

56.  Another Local Adviser reported that “clients are regularly discouraged from requesting a reconsideration when they ring DWP after receiving a decision on their claim.” They added that people with Parkinson’s are frequently told that unless they have new evidence to submit the decision it will not be changed, while some claimants have been told they cannot request an MR when they have said they don’t have any more evidence to offer.

57.  One Local Adviser was even warned by a DWP staff member that “If we put through any unjustified mandatory reconsiderations there are repercussions for us staff here!” We are extremely concerned at the inference that front line staff are being told to filter out appeals and not put them through in some cases. We would welcome clarification as to whether this is a formal aspect of their role.

58.  We are also deeply concerned by long waits for reconsiderations, and no requirements on the DWP to return them within a given timeframe.

59.  Recommendation: Mandatory reconsideration is abolished

60.  Recommendation to committee: The committee examines why the vast majority of PIP MRs result in no change to the award, despite a 65% successful appeal rate for claimants.

What is the impact on claimants of delays in getting an accurate decision on their claim, and how could this be reduced or better managed?

61.  It is noteworthy that PIP appeals have been extremely slow. We recently heard from HM Courts and Tribunals Service that it is taking around 20 weeks to hear PIP appeals. Extended delays like this can be highly detrimental to people with Parkinson’s in terms of prolonged stress (which can exacerbate Parkinson’s symptoms). In many cases, people feel this is an unreasonable length of time to wait and decide not to progress their appeal as a result.

62.  The consequences of losing access to financial support and returning a Motability vehicle can also be extreme for people with Parkinson’s. A Local Adviser explains:

“Client has had Parkinson’s since he was 18, he’s now 36. He previously received the highest rates of both components of DLA. He submitted detailed medical evidence alongside his PIP2 form, but was still invited for a face-to-face assessment. Naturally, he’s lost access to higher-rate Mobility and has had to return his Motability car. However if the car goes back he will lose his job as he can’t use public transport. His wife is a teacher, she is currently on maternity leave and they only have one vehicle, the Motability car. Couple are very distressed, his symptoms have worsened because of all this.”

Summary of recommendations:

63.  To the DWP:

• The DWP should acknowledge its overall responsibility for assessment quality, in order to improve accountability and share lessons from appeals/mandatory reconsideration decisions with assessment providers in a systematic way.
• The Government fundamentally redesigns the PIP assessment to ensure that assessment criteria are fair, evidence based and result in the correct decision first time.
• The DWP compels all PIP assessors and DWP decision-makers to review supporting medical evidence before making a decision or recommendation and to confirm that this evidence has been considered when submitting their reports.
• The DWP introduce a ‘paper-by-default’ protocol for people with severe, degenerative conditions, and offers claimants with these conditions the opportunity to provide further information wherever possible.
• Mandatory reconsideration is abolished.

64.  To the Committee:

• The committee explores the extent of the DWP’s involvement in monitoring of assessment quality, why there are no regular statistical releases on the quality of assessment reports and whether there is a process in place to help providers learn from poor assessments.
• The committee asks about the impact of the 20 metre rule on PIP assessment outcomes and the number of people with degenerative conditions who have lost support upon reassessment from DLA as a result.
• The committee asks about Atos and Capita assessors’ approaches to reviewing supporting evidence and why the DWP has not standardised this process.
• The committee explores whether the policy for deciding whether to offer paper based reviews is fit-for-purpose and why the DWP and assessment providers do not collect detailed data on which condition groups are being assessed on paper.
• The committee examines why the vast majority of PIP MRs result in no change to the award, despite a 65% successful appeal rate for claimants.

April 2017