Independent Review of Personal Independence Payment (PIP) Response from the Disability Benefits Consortium (DBC)

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1 Independent Review of Personal Independence Payment (PIP) Response from the Disability Benefits Consortium (DBC) I cannot place enough emphasis on the amount of stress and worry the whole process has brought and continues to bring to me and my family. I am a newly diagnosed MS sufferer with ongoing physical problems. That alone is enough to deal with but the time it continues to take for the report to be done is unacceptable. We have phoned every week for 5 weeks asking where my report and information is and each time a new excuse is given. My family and I are reeling from my diagnosis. It has been a terrible shock to us all that I have been told I have a condition that has no cure. Then, to add insult, this whole process has failed us. It isn't just about the money, heaven knows this is not a way to get rich. To be awarded PIP would open other doors for my family, such as money refunded from the electricity company and a disabled bus pass. My husband could then apply for carers allowance, as my needs are so many now that he has lost his self-employed contract to look after me. The stress of it all has left me at times with a feeling of hopelessness and the question as to whether I am worth anything at all. A respondent to the DBC s PIP Monitoring Survey About the DBC The DBC is a national coalition of over 50 different charities and organisations committed to working towards a fair benefits system. Using our combined knowledge, experience and direct contact with millions of disabled individuals and carers, we seek to ensure that Government policy reflects and meets the needs of all disabled people. Our evidence In addition to the anecdotal evidence we have gained from working directly with disabled people and their carers, this submission is based on the quantitative and qualitative data that we have gathered via our PIP Monitoring Survey. The survey has been running since October 2013 and nearly 1200 (1162) disabled people have responded telling us about their experiences of claiming PIP. Where appropriate, we have also included the results of our Welfare Rights Advisors Survey. The survey was carried out between July and August 2014, and over 200 advisors responded telling us their views and experiences of helping disabled people apply for the financial support they need. Our response One of the most striking aspects of the results we have received to date is the number of disabled people reporting severe delays to their claim, and experiencing severe hardship as a result of their problems accessing the system. 1

2 This is reflected in the number of respondents to the different parts of the survey. In total 1162 people have responded to the initial questions in the survey. However, the numbers drop dramatically as the survey continues through the PIP process. This becomes particularly clear when looking at the results of the section covering the face to face consultation. The number of respondents drops by almost half to around 600. This figure then reduces to a third (to around 400) when asking people about their final decision. Disabled people responding to the survey told us: I made my initial claim for PIP on 14th November months later I have not heard a thing about whether or not I have been awarded PIP. In the 7 months that I have been waiting my condition has deteriorated and I need a mobility scooter to get about and provide me with a degree of independence but I cannot afford this and, therefore am more or less housebound. I am still waiting. It's crazy because am significantly disabled. The system is not working. I applied in January. It's now mid July. I was told by the assessor that I would probably have to wait 12 weeks for a decision from the face to face assessment. My life is on hold and my health is deteriorating while I wait. I am unable to have quality time with friends and family and by the time I get PIP my health might be too bad. I have a degenerative disease. It's a very depressing situation. The system is failing people. Filled in DLA form in September 2013, finally received letter saying daughter entitled to enhanced rates in August 2014! The process is far too long and slow. We still haven't received any money, even though the date that it should have been paid in on has passed, as "as it is such a large amount, it needs to be checked by a manager"! It wouldn't be such a large amount if it hadn't taken 11 months to get through the process! It's not just the fact that we haven't been receiving any money for a year, but all the other benefits that rely on that bit of paper, such as a disabled bus pass, train pass etc and the proof needed to take parental leave. A 26 week wait for a decision is a disgrace I am still waiting for an assessment no appointment yet no contact from them at all other than a text message to state they received my application. Meanwhile I cannot go out alone, cannot push wheelchair and without PIP am restricted from accessing any other firms of assistance. In our Welfare Rights Advisors Survey, we asked respondents how long, on average, the PIP application process is taking for their clients. Over half (52%) said in excess of nine months, and a quarter said between seven and eight months. Nearly 90% (89%) of respondents believe that the delays in the system are negatively affecting claimants wellbeing. Using our knowledge and direct experience of the system combined with the results of our surveys, the DBC has drawn together a number of recommendations to both speed up the process, and relieve some of the financial pressure that disabled people applying for PIP currently face. 2

3 The DBC is calling for: A halt to the continued roll out of PIP until the system and the assessment are fit for purpose. Plans to be put in place for a further programme of independent reviews to monitor the roll out of the benefit, particularly given the small number of cases that have currently been decided. The decision on the continued roll out of the benefit to be taken in conjunction with the independent reviewer. Below we outline a series of recommendations to urgently improve waiting times and provide support for those in severe financial hardship. We then continue to examine the findings of the PIP Monitoring survey, making further recommendations in light of the findings. Recommendations to address delays and improve the PIP application process (without jeopardising the quality of decision making): 1. The initial part of the PIP claim should be made simpler. It is not necessary to have a two part claim. The initial telephone call should be optional and should only require a name and National Insurance number so someone can log the start of their claim. PIP2 forms (which would be the main form), should be downloadable on the Gov.uk website, or should be available via the Jobcentre or advice centre without the need to make a claim call (which can be inaccessible to some disabled people). For people who require a support worker to apply for PIP, this means they need two advice appointments instead of one (one for PIP1 and one for PIP2). 2. Assessment providers Atos and Capita must increase their capacity so there are more assessment centres and more healthcare professionals to carry out assessments. 3. The DWP should introduce a triage system for PIP claims. DWP decision makers should make an assessment on all claims once they have received the PIP2 form. The decision maker should decide whether it is necessary to seek further evidence or if the person needs to go to an assessment provider for a face to face assessment. This would cut down on how many people are sent to the assessment providers who do not currently have the capacity. This should not increase the workload of DWP decision makers as they would have to assess all cases either way. 4. Irrespective of whether a case goes to an assessment provider, DWP decision makers should immediately decide whether to request further evidence and seek this as soon as possible. Delays getting evidence could add to the delay in the PIP assessment process The Department must improve the current evidence gathering process to ensure that claimants are not asked to attend a face to face assessment if they do not need to. Ensuring the right evidence is gathered also means that even those who do have to 1 The further evidence delays were highlighted in the Public Accounts Committee's report on PIP: 3

4 attend a face to face assessment are more likely to receive the right decision first time around. 6. DS1500 forms for terminal illness claims should be able to be sent in electronic format so healthcare professionals can send them directly to the Department, speeding the process along. DWP should be responsible for dealing with these claims as Atos and Capita do not have the capacity to process these quickly enough 2. We have anecdotal evidence of terminal illness cases being delayed due to the DS1500 being sent to ATOS for scrutiny this is not required as the decision maker is able to make a decision on receipt of this form. 7. Claimants should be kept informed of what is happening with their claim and when they can expect progress, and have the ability to track its progress. This could be done very simply, for example by using SMS where appropriate for the claimant or other means where needed. This could be beneficial as if they are told that the provider is waiting to receive evidence the claimant may be able to chase it up with the relevant professional. It would also save a lot of distress to the claimant who currently is told via a recorded message not to contact the DWP until they are at least 26 weeks into their claim. Such a system would also save time that DWP staff are spending answering calls from distressed and frustrated claimants. Recommendations for increased support for applicants during the waiting period: 1. Income Support for the person who is caring for the PIP claimant should be extended until a decision on PIP has been made. After 26 weeks (or 34 weeks if they exercise para 4 of Schedule 1B of the Income Support Regulations, although this is not always applied) the person must claim Jobseeker s Allowance and therefore be at risk of sanctions as their caring responsibilities would prevent them from actively seeking work. There is no financial difference to the Government in the carer claiming IS as opposed to JSA the only difference is the additional stress and risk to the carer. A person cannot claim Carers Allowance until the person they are caring for has qualified for the care component of PIP. 2. Using a system similar to the short-term benefits advance system, claimants who are deemed likely to qualify should be provided with emergency payments to avoid unnecessary hardship. 3. Those enduring a PIP delay are currently prevented from claiming other benefits that PIP would usually be the gateway to. When they receive PIP, their claim for these additional benefits is not backdated. This is because PIP is not deemed to be a relevant benefit in all circumstances. Specifically, claimants whose income is too high to qualify for Income Support, Income-based Jobseeker s Allowance or Pension Credit but who 4

5 would qualify when they become eligible for PIP, lose out on these benefits whilst they wait. Claimants need to be able to make backdated claims for these benefits once they have been awarded PIP. The Department has agreed in principle to amend this rule but it needs changing in an official capacity to have an impact. Recommendations to compensate disabled people suffering severe hardship as a result of the delays: 1. There should be automatic compensation to be paid at a daily rate when a decision comes after a certain period and PIP is ultimately awarded. The rate and length of the period would need to be negotiated with a possible increase in the rate the longer the delay. 2. Claimants who incur financial hardship and penalties in direct response to the waiting period, for example but not limited to non-payment of fines, overdraft fees, rehousing costs, should receive compensation above the level set out above, if the costs incurred are more than the compensation payable. 3. DLA claimants who live in a PIP roll-out area who report a change in their circumstances (including terminal illness) have to claim PIP. However, a PIP award higher in payment than their DLA is not implemented until between 28 and 56 days after the PIP decision (depending on their pay day). This means that any increased payment is not backdated and the increased award could start several months later due to delays in assessment (also resulting in a loss of access to passported benefits and retrospective claims to Carers Allowance). Any increase should instead be paid from the day of the reported change (as is the case with DLA). Our findings The DBC has expressed concerns about the introduction of PIP since its inception concerns that relate to both the design of the benefit assessment process itself, and importantly the new criteria by which claimants will now be judged. The DBC is particularly concerned about the introduction of the new 20 metre qualifying distance for the enhanced rate mobility component of PIP. We outline these concerns in detail in our response to the 2013 mobility criteria consultation which is included alongside this submission. We provide further information on how the new criteria have impacted on people to date in the part of this submission which examines claimants views on the decision they have received. We have serious reservations about the predominant use of face to face assessments delivered by independent assessment providers. The results of the PIP Monitoring Survey highlight a series of concerning aspects of the PIP assessment process, many of which mirror the poor experiences of disabled people going through the Work Capability Assessment for Employment and Support Allowance. We make specific recommendations for improvements in each stage of the assessment process and would like to draw attention to the following aspects in particular: 5

6 The accessibility of the initial phone call required to register a claim for PIP. The length of time and availability of support to fill in the Part 2 claim form. Accessibility of assessment centres. Assessor knowledge about different disabilities and health conditions, and their ability to communicate with people who have a range of disabilities and health conditions. The assessment of fluctuating conditions and hidden symptoms. Physical examinations. The additional evidence gathering process. Reassessment time frames. PIP Part 1 registering a claim for PIP We asked respondents how easy or difficult they found the initial claim process. The largest proportion, just over four in ten (42%) found it to be difficult, while 21% found it easy. The remainder said they found it neither easy nor difficult, or didn t know. Notably, the findings reveal that the process is particularly difficult for those needing adjustments or alternative ways of registering their application. The DBC has long expressed concern that the design of this part of the process, which relies heavily on the use of the telephone, fails to take into account the full range of accessibility needs that disabled people applying for the benefit may have. The survey findings show that: Nearly eight in ten respondents (78%) were not aware of the different ways that are available to people who are unable to start their PIP claim over the phone. Of those needing a different way of starting their claim for PIP, nearly half (45%) said this was not provided. Of those that discussed the adjustments they needed at this stage in the process, nearly half (45%) said they were not taken into account later on in the claims process. The comments we received suggest that this part of the process is particularly difficult for those with sensory impairments, cognitive difficulties, mental health problems and learning difficulties. Respondents told us: A lot of the questions confused me and I was very panicky on the phone due to anxiety, but I didn t know who else could do it for me. I was having great cognitive difficulties at the time and only got through it with help from my husband giving me the information required. Long wait on phone to speak to someone. Lots of information read to me over the phone, and I couldn't concentrate on what was being said or asked. Starting the claim was difficult because I did not know who to contact... Once I got the phone number to start the claim, it was hard to communicate over the phone as I have a hearing impairment. The paperwork that was sent to me took 2 weeks to arrive, leaving a very short time to send completed forms back before the deadline. 6

7 Recommendations: As outlined in our first recommendation to speed up the assessment process, the initial claims process must be simplified (see page 3 for further details). The DWP must urgently review the performance of the initial telephone call in meeting the accessibility needs of disabled people. In particular, the different options for registering a claim must be made more clear to those wanting to apply. Claimants should only have to make their communications preferences clear once at the beginning of the process, and these should be met throughout the rest of their application. Where claimant s communications preferences are recorded on their DLA file, this information must be properly utilised. PIP Part 2 the claim form When asked how easy or difficult they found filling in the claim form, more than two thirds (69%) said difficult. Just 7% said easy, and 24% said neither easy nor difficult or don t know. The DBC is very concerned about the level of support available for claimants who may struggle to fill in the claim form. More than half of claimants responding to the survey (570 in total) were given support to complete the form. Of these: Nearly half (49%) received support from a friend or family member. 8% received support from a care worker. 14% received support from a welfare rights advisor or benefits advisor. 1% received support from DWP through a home visit. With regards to the information booklet provided to help people complete their form, just under 20% said it was helpful (19%), while 36% disagreed. When asked if claimants felt that one calendar month was long enough to complete the claim form and return it to DWP just over half (53%) said yes, but over a third said no (36%). Respondents gave a number of reasons as to why one month was not long enough to complete the form: The largest percentage at over a third (36%) said they were ill for part or all of the time. Just under 20% (19%) said they were waiting for an advice appointment. 12% said they were waiting for someone they know to help them. 12% said there was a delay in receiving their form in the post. Respondents made comments on the length of time given to fill in the form but also the length of time the form had taken to arrive which in some cases reduced their time to respond even further: Stressful trying to get all the details in such a tight time scale (2 weeks from receiving to needing to send it back). Hard to convey the mental/emotional strain of the illness. Hard to find an appropriate section to bring up certain problems that impact my health/daily living. Hard to mention the embarrassing problems. 7

8 Took almost a month just to receive the form. The month deadline had to be extended twice. It is also clear from the comments received that, as highlighted by the quantitative data, the level of support needed is a significant issue for many: As I have a mental health condition, I found it very hard to do the form, it made me very tired and it made me unwell having to write about everything. It took me a long time to do. And then when they lost the form and I had to send another one in, it really took its toll. It stressed me out a lot. It was very difficult to fill in but I didn t know where else to turn to get help. I didn t feel like I was able to explain all of the problems I have. I detailed as much as I could but my disability is invisible and quite difficult to describe. The pain in my hands prevented me from returning the form immediately. Nearly three quarters (70%) of welfare rights advisors felt that claimants do not feel supported throughout the application process. Worryingly, more than three quarters (77%) did not know that they could ask for extra time to complete their form, while just 16% said they did. Of those who asked for an extension less than a quarter (24%) said they had been given one. When asked about whether they felt they were able to fully explain the impact of their condition/disability on all aspects of their life through the claim form, just over a quarter (26%) said they were. However, just over half (54%) said they were not. Comments included: The impact of how it affects working and social life would have been useful instead of just focusing on home life. My injury is due to cognitive impairment due to traumatic brain injury and I found it difficult to relate how this condition is affecting my daily living through the questions asked on the claim form. Recommendations: As mentioned in the introduction to this response, the DBC believes that the claim form must be made available to download from the Gov.uk website, or via Jobcentres and advice centres. However, in the absence of a commitment to carry out this recommendation, the Department must urgently put measures in place to ensure that claim forms are delivered to applicants efficiently. The time period given for claimants to fill in and return the form must be extended to a time period that disabled people and their representatives agree is reasonable. It must be made as clear and explicit on the form as possible that individuals can request an extension if they need one. The criteria for granting extensions must be reviewed with disabled people and their representative organisations to ensure that the needs of disabled people applying for PIP are adequately taken into account. The PIP Part 2 form must be amended to include more information about where to find support to fill it in and engage in the overall process. The DWP should invest in services that provide advice and support to disabled people when claiming benefits. DBC members report that access to support services is 8

9 currently becoming more restricted at a time when claimants need to access them is increasing. Experience of the face to face consultation practicalities of the assessment Just under 340 respondents reported having a face to face consultation. The statistics do not yet allow us to draw a fair comparison between the two assessment providers. However, where we cite qualitative responses to the survey we specify which provider is being referenced. With regards to the practicalities of organising the assessment: Of those that needed to change the date or time of their meeting 75% said they were able to do this, while 25% said they were not. The highest number of respondents (51%) said they were given between eight and fourteen days notice to attend their consultation, while more than a quarter (28%) were given seven days or less. Based on this evidence and our experience of working directly with disabled people and their carers, the DBC is concerned that a significant number of individuals are not being given enough advanced warning of when their consultation will be. We also received a large number of worrying comments about administrative errors being made by the assessment providers when organising consultation times. Many referred to appointments being cancelled: First appointment cancelled with Atos but was not told until I arrived at appointment. Second appointment they lost all my information. Third appointment finally done. (Atos) My assessment was cancelled 5 minutes before it was due to start! It was rearranged for the following day - I suffer with anxiety and this caused stress to me (Capita) They didn't turn up to my first home visit and I had to make a complaint in order to get a second appointment in a reasonable time. (Capita) Many also commented on problems rearranging appointments: They were not happy with me changing the appointment as I had an urgent scan at the hospital on the same day. I was told if I cancelled the next appointment I would have to start a new PIP claim. (Atos) Couldn't get any answer at any time of day on the telephone. Their online portal was unusable. Sent an and received a standard response which said I would be contacted within 2 days - it didn't happen. Therefore, I couldn't change the date but nobody turned up on the given date anyway. (Capita) They changed it to a day I had a vital eye appointment then said they could only rearrange once even though it was their fault. (Atos) Of those that requested a home visit or asked for the consultation to take place somewhere else (for example, at a friend s house or at a day service) just two in ten (18%) said this 9

10 happened, while nearly four in ten (37%) said it did not. When asked what reasons were given for this, many respondents said they were unaware of the option to have the assessment at home or elsewhere. Some said their request was refused due to staffing shortages or delays: I did not know I could have it at home. It would have been a lot easier for me if I had. Because of the delay in the PIP process I was asked to attend an assessment. Otherwise I would have had to wait even longer. We asked respondents how long it took them to get to their assessment. While some people were able to get to their appointment in less than half an hour, two in ten report travelling for more than an hour: The largest proportion, just under 40% (39%) said it took between 30 and 60 minutes. Just under a third (29%) said it took less than thirty minutes. 14% said it took between 60 and 90 minutes. 6% said it took more than 90 minutes. Of those with accessibility needs, around six in ten people (62%) said these were met, while nearly four in ten (38%) said they were not. Respondents told us: No provision for parking. Only two disabled spaces and they were both taken. (Atos) I was supposed to have my appointment upstairs but the only way up was stairs. I had a tripod walker and told the receptionist there was no way I could get up the stairs. I was seen by another person downstairs eventually. (Assessment provider unknown) No it wasn't accessible - I need face to face and written consultation - not a conversation which goes on around me. (Atos) A significant number of claimants complained of long distances from the parking area to the consultation room: It was very difficult to get from the disabled parking bay to the tiny room in which the consultation took place. (Atos) At the time I wasn t using a wheelchair though they knew I had walking difficulties. The car park from the assessment building was so far away that I almost gave up walking to it. I had to sit down on a number of occasions before reaching the building. On entering the building there was a steep incline to walk up. My wife had to run up to get assistance to help me walk. (Atos) I use a wheelchair. The car park was gravel so difficult to use. Doorways not easy to get through and furniture in way so had to ask for it to be moved. (Atos) Recommendations: All claimants must be given substantial advance warning of when their appointment will take place (at least two weeks notice). Communications with claimants must make very clear that home visits can be requested and that appointments can be 10

11 rearranged if necessary, clearly outlining the criteria by which this is possible, and the process than needs to be followed. Providers must be contractually obliged to provide accessible assessment centres. The distance that claimants have to travel to an assessment centre must not exceed an hour on public transport, and ideally be significantly less than this. Clearer service level standards must be included within the provider contract on all of these points, and contractual penalties must be applied for failure to fulfil these obligations. Experience of the face to face consultation conduct We asked respondents how long their face to face consultation lasted. Ensuring that the length of the assessment is right is important to ensuring that claimants are given the time they need to adequately explain the impact of their health condition on their daily lives. Conversely, an assessment that is too lengthy can be very stressful for claimants. More than one in ten (12%) said their consultation lasted less than 30 minutes. The largest proportion (45%) said it last between 30 and 60 minutes. Around a quarter (27%) said it lasted between 60 and 90 minutes. One in ten (11%) said it lasted over 90 minutes We found that of those with communication needs, nearly 40% (38%) said these were not met in their consultation. Respondents commented: I have memory problems and felt under pressure. (Atos) I asked for a note-taker for my assessment - this was refused. My husband came with me and spoke for me as (a) I couldn't hear/keep up with the conversation (b) the lady kept forgetting I needed to lip-read - it was like watching tennis - back and forth between her and my husband. She refused to discuss the mobility aspect of my claim. The hearing test was a joke - if you are behind me, I won't hear you. (Atos) Communication difficult from cognitive impairments, but they were not interested in this type of need. (Capita) Of those who took someone with them to the assessment the majority (76%) said they were able to contribute to the discussion. However, around a quarter (24%) said they were not. This is reflected in the qualitative responses we received. While many respondents felt that the person that accompanied them was able to make a contribution, a number reported not being allowed to take anyone in with them at all. Some respondents told us: I struggle to communicate whilst in severe pain which happens frequently. My partner was able to continue answering questions on my behalf. (Atos) My daughter was able to help when I got my words mixed up or when we explained about the effect my condition had on my whole life. (Atos) Yet others reported: My dad was kept in the waiting room. (Atos) 11

12 My dad took me and they wouldn t allow him in the room. (Atos) Others felt that the person who accompanied them was not adequately listened to: My Mum went to speak and was told they did not need any other information. (Atos) None of my Partners input taken into account. Together 28 years. (Capita) We asked claimants about their view of the assessment overall. While a significant number felt that the healthcare professional gave them the opportunity to explain how their condition/disability impacts on their day-to-day life, less felt that the assessor adequately understood this: Around two thirds (63%) agreed that the healthcare professional gave them the opportunity to explain how their condition/disability impacts on their day-to-day life - 21% however disagreed. Just under four in ten (39%) agreed that the healthcare professional understood the way that their condition/disability impacts on their daily life. Yet more than four in ten disagreed (42%). Over half (51%) did not feel that the assessor clearly explained what information they had recorded about them, while 30% agreed they did. Nearly half (45%) did not feel that the assessor gathered an accurate picture of how their disability or health condition affects their day-to-day life, while just a third (33%) agreed they did. An overwhelming number reported that the assessor had a lack of knowledge or understanding about their condition: They didn't understand that MS is a progressive condition that you will never get better from. (Atos) I was very unhappy that I had to give them details of my condition by supplying access to the internet on my phone. (Atos) I was told from the start that they would contact my GP which they didn't. I had to walk albeit slowly but I did it, but they didn't take into account that following the assessment I was bed bound for 3 days. Absolutely no knowledge of my condition and how it affects me which is clear when you read the written report. (Atos) Recommendations: Routinely monitor claimant views and levels of satisfaction regarding the length of the assessments to ensure that the quality of consultations is not reduced during attempts to speed up the process. Assessor training on specific condition groups must be urgently improved in conjunction with relevant experts, including charities and disability groups. In particular, the communication needs of different impairment groups must be covered in detail. DWP must retain overall responsibility for ensuring that training materials are fit for purpose. Assessors must be compelled to consult the condition insight reports that were developed in conjunction with charities and disability groups prior to conducting an assessment. Assessors should be adequately monitored to ensure that this task is 12

13 undertaken. Where possible, claimants should be matched with assessors that have a good knowledge of their health condition or impairment. All staff must be clear on policies relating to people that claimants may wish to bring with them to the assessment. Fluctuation and hidden symptoms The assessment of fluctuating conditions and hidden symptoms must be improved. In addition to the findings presented above we found: A third (33%) felt that the assessor did not give them the opportunity to explain how their condition or disability affects them differently on different days or at different points during the day, while half (52%) agreed they did. Nearly half (44%) said that the assessor did not take into account whether they could do activities safely, repeatedly, to an acceptable standard and in a reasonable time, while just over a third (37%) agreed they did. The DBC would like to highlight that the assessment of whether activities are carried out safely, repeatedly, to an acceptable standard and in a reasonable time (otherwise known as the reliability criteria), is a legal requirement. Respondents told us: I feel that it is impossible to show the true impact of my condition via the current means of assessment, as it is not possible for the assessor to see the impact of the assessment after it has taken place. One of the key elements of ME/CFS is Post-Exertional Malaise or payback, and that is what makes it so difficult, and the effort of the meeting made me very ill afterwards, and I think if the assessor had been able to see that they would have judged differently and awarded me higher. (Atos) I was asked how far I could walk, but I wasn't asked any further information about it, as most days I am unable to walk. I didn't get the opportunity to inform them of my wheelchair. (Capita) At the time it seemed to be a very understanding and useful discussion of my problems,but what I said was twisted - 'even by the time I have got washed and dressed I am totally exhausted' turned into 'can wash and dress herself! (assessment provider unknown) I made a considerable effort to communicate well in the meeting and as a result experienced an exacerbation of my condition for several days following, but also was deemed to be able to communicate perfectly well. The healthcare professional did not see my struggles during the meeting, or did not believe me, and didn't see the impact after the meeting and therefore judged incorrectly. It is very hard to show someone how you struggle AFTER doing something if they only see you doing it. (Atos) Recommendations: Both assessor and decision maker training and guidance on fluctuating conditions and hidden symptoms must be urgently enhanced, with greater emphasis on the reliability criteria. 13

14 Assessors should be required to explain how they applied the reliability test and how they considered the issue of variability as a matter of course. Physical examinations The DBC are particularly concerned about the element of the face to face consultation involving a physical examination. We have expressed this view throughout the development of the application process for PIP. The survey results show that the majority of PIP claimants (61%) that have a face to face assessment are being examined in this way. This aspect of the consultation gives assessors the power to examine the impacts of an extensive range of health conditions, of which they may have little or no knowledge. They may not understand the nuances that can be associated with such conditions and are unlikely to have the appropriate equipment available to complete accurate assessments of functionality in every case. We are particularly concerned about how the tests work to assess mental health conditions, those with fluctuating conditions whose symptoms may not be immediately apparent on the day, and sensory impairments, which may vary significantly in different environments. Respondents to the survey told us that: These movement tests were so superficial as to be inconsequential (that said, I was in considerable pain afterwards). These superficial movements appear to have overridden specialist reports that I provided. (Atos) The physical examination showed I can move about reasonably freely, but it failed to take into account the fatigue I would experience later on from having made those movements. (Atos) Told to stand in the corner. She then apparently marked out her steps, and then said word(s) which I couldn't hear. I knew when she was right behind me as her shadow was on the wall - but I couldn't hear her at any point. Even when we asked her to let me lip read the word, I couldn't understand her. I expected a proper hearing test - so I was shocked and uncomfortable with this examination. (Atos) The activities I was asked to do, bore no relation to my condition, I felt it was a standard inappropriate test for me. (Atos) Physical assessment was inappropriate for someone with bowel disease. (Atos) The test was can I stand up and try to touch my knees. I could only get down my thigh before I became unbalanced. Then how far could I reach up my back with my hands, just above my waist line. Nothing about any other effects of what the MS is having on my body. (Assessment provider unknown) Qualitative responses we received to the survey show that physical examinations have left claimants at risk of harm in some cases. Many people will be extremely stressed by the assessment process and may feel considerable pressure to perform activities as requested, even if they are aware that this may cause them pain, make them uncomfortable or place them at risk of harm. Some are likely to feel that by refusing to do what is asked of them, 14

15 they are failing to substantiate their claim, or are providing an admission of guilt that their portrayal of their condition is false. Of those that had a physical examination, over a quarter (27%) said the assessor did not ask them if they were comfortable with this before going ahead. I had to be especially careful as the movements can cause subluxations/dislocations, but as I can do them the need for care and repeatability was ignored. It seems if you can do something once in months you're fine. (Atos) Caused pain and exhaustion. (Atos) I asked if she needed to do this, I told her that it would make my symptoms worse. She told me they had to do it otherwise she could not see the extent of my condition. My symptoms fluctuate and are extremely painful. I had an increased amount of pain, I felt sick. I had to go to bed when I was brought home. I told her I would rather not but she did it anyway. I stress that I feel that assessors should know the conditions they look at more in depth and take note of the paperwork more closely. I did not have a good experience and I felt making a complaint would fall on deaf ears! (Atos) She wasn't a medical professional... I was in a lot of pain due to this! Many reported feeling humiliated by this part of the process: It was a very sparse examination can you lift your arms, turn your palms different ways. Sat on chair opposite and had to copy...very demeaning and humilitating. (Atos) Degrading experience whilst in pain (Atos) I was told there would not be any physical examination so was surprised and didn't know if it was supposed to happen. (Atos) Wasn't happy about this, didn't feel she was adequately qualified to make a judgement. (Capita) Recommendations: This aspect of the assessment must be urgently revised. We strongly feel that physical examinations of this kind should be withdrawn from the PIP assessment. If they are maintained then the guidance must make clear that these types of examinations should only take place in the absence of professional evidence from which an inference of the impact of an individual s condition can be drawn. They must not simply be undertaken as a matter of course in each assessment. If assessors intend to undertake such examinations, they must seek the advice of relevant medical professionals before going ahead. In every case, claimants must be asked if performing requested activities will place them at risk of harm or cause them pain, and if they are comfortable with being examined in this way. Claimants should be informed in advance that this type of clinical examination might be required and what it may entail. Particular attention must be paid to the reliability test and consideration of variability when reporting the findings of any physical examination. Assessor decisions to carry out physical examinations, and their conduct in doing so, must be closely monitored. 15

16 Additional evidence The DBC strongly believes that additional evidence such as reports from specialists, social workers or GPs is crucial to the PIP assessment process; from informing decisions about whether a face to face assessment is necessary, to enabling claimants to adequately explain the impact of their condition on their ability to work during the face to face assessment, to providing assessors with an adequate insight into individual cases and determining whether a physical examination is appropriate. More than two thirds of respondents (66.7%) said they included extra information or evidence about their condition/disability, such as information from a health or social care professional, when they returned their form to the DWP. Just over a quarter said they did not (26.3%) and 7% said they didn t know. The results of the survey suggest that additional evidence is not regarded as a sufficiently central part of the assessment process. More than seven in ten claimants (71%) said the healthcare professional did not make them aware of extra information or evidence they had sought/received about their condition or disability to help them with their assessment. Just 20% said they had. The use of additional evidence was a strong theme in the qualitative comments we received throughout the survey. Respondents told us: I knew they hadn't got any information from my GP or my hospital as I checked with both of them in the week before my appointment - absolutely gutted about that and really added to my anxiety and stress levels. It is horrible to be deaf - even worse to be ignored because it's not a visible disability. (Atos) I am sorry to say but the assessor said that she did not have the time to read all my 50 worth of hospital records. She said that she was too busy. She said that she had never heard of Lidocaine Infusion for pain relief for Fibromyalgia patients and made it quite clear that she thought I was not telling the truth. I stated that if she had read all my medical information that had cost me my weeks shopping money that she would find my pain management information and it was a consultant at hospital that administered it, every six months. I felt belittled and unheard. I also told her that I had fibro fog (cognitive difficulties remembering things). I was then told to take 7 from one hundred and I could not, I tried three times and got it but I was very distressed and anxious. After I stopped crying she said to then take a further 7 from that! I was sickened...my partner was not happy either. (Atos) The HCP had never heard of my primary medical condition until 5 minutes before the assessment. Although I spent a great deal of time trying to explain it to her, it was clear from the report that she had either not understood or had neglected to take this into account. The justifications were a number of false assumptions. I was also not told at that point that she had not seen any of my supporting medical evidence. (Atos) While we welcome the intention in the design of PIP to collect additional evidence on claimants behalf, we are concerned that this is not happening when it should be. Assessment providers are not compelled to contact all of the professionals that claimants recommend, and we are concerned that claimants are not being told what evidence has been sought/received during the face to face assessment. Informing claimants of the 16

17 evidence that has been obtained would enable them to highlight anything substantial that has been missed, or help chase up professionals who have not yet responded. Alarmingly, communications with assessment providers has revealed that additional evidence is not being returned in a significant number of cases. We urge the independent review to question the assessment providers about this, and establish the reasons for it, with a view to improving the process. We would also like to highlight that DLA evidence may in many cases save the need for a face to face assessment, inform a more accurate one, or prevent a repeat of the additional evidence gathering process. It is therefore vital that DLA case files are made available to both Decision Makers and Healthcare Professionals. Current DWP policy relies on claimants to inform the Department if there is anything of use on their DLA file. However, many claimants may be unaware of the contents of their file and some claimants will be at a disadvantage when asked this question, due to the nature of their disability. Examining the contents of DLA files should be made a more central part of the process. Recommendations: In addition to the recommendations we make about the additional evidence gathering process at the beginning of this submission, we recommend that: DWP must put measures in place to ensure that additional evidence is collected as early as possible in the process, providing professionals with as long as possible to return it. Claimants should be better informed about what evidence is useful to their claim, and encouraged to highlight the individuals on their form that they would most like to be contacted. Claimants should be told what evidence has been sought/received on their behalf. Adequate mechanisms must be put in place to educate professionals about the type of evidence that would be useful, and allow them to pass this information on to DWP quickly and easily, for example in electronic format. DWP decision makers must place greater emphasis on justifying decisions against additional evidence in the final part of the process. This would help to ensure that all evidence has been appropriately sought and considered. DLA files should be examined for useful additional evidence as a matter of course. Stress and anxiety Claimants find the PIP assessment process an extremely stressful experience with many reporting a negative impact on their health and wellbeing: The majority (73%) found the face to face assessment a stressful experience. Half (51%) found that it had a negative impact on their mental health. Half (51%) found that it had a negative impact on their physical health. These findings are consistent with those of the Welfare Rights Advisors Survey, which reveals that 72% believe that the PIP assessment negatively affects claimants wellbeing. Claimants told us: 17

18 It has been extremely stressful and in particular the face to face interview was extremely difficult. I was told nothing about contact made with others, my records, or what she was looking for. I was not given any opportunity beforehand to state where I wanted the interview to be held, it was a letter straight to me requesting I go to them. The time leading up to the meeting was very stressful to the point I suffered a massive relapse and was at my worst during the meeting. Very stressful form filling, the face to face consultation gave me an anxiety attack. While the DBC recognises that any assessment for benefits is an inherently stressful time for many disabled people, this should not be compounded by the assessment process itself and the manner in which they are carried out. A significant number of claimants reported inappropriate behaviour on the part of the assessor: The computers were down so the healthcare professional didn't have access to any of my information, ignored me repeatedly when I said I was in pain, didn't seem to understand my condition very well, she wasn't taking notes and made inaccurate and unfair assumptions. It was stressful, extremely painful and very calculating the way they make you walk a substantial distance to the consulting room. She didn't listen and wasn't sympathetic. (Atos) When I was finally assessed the HCP made comments I felt were inappropriate. She asked me if I had considered suicide to which I replied yes and she said she would understand why I would want to attempt suicide given my condition. She also laughed at this point which I felt was inappropriate. She also told me that she herself had a bad back so could understand how hard it must be to have MS. She was glad that unlike me, at least she knew she was going to get better. (Capita) Recommendations: All efforts should be taken to reduce stress on the claimant. This should include signposting to appropriate support, placing a heavier emphasis in the staff and assessor training on treating claimants with dignity and respect. The government should invest in more support services for claimants who are going through the process. Face to face to assessments should only be conducted when absolutely necessary and there should be a much heavier emphasis on additional evidence much earlier on in the process to ensure that this is the case (as outlined in section on additional evidence above). Decisions Just under 300 people responding to the survey reported receiving a decision about their PIP claim. Four in ten were refused the benefit, while six in ten received some type of award. We asked respondents about the length of time they were awarded PIP. Of those that knew the answer to this (around half of claimants that had received a decision), the largest proportion (40%) received an award of between two and five years. Nearly the same amount (37%) received an award of less than two years. The DBC is concerned that reassessments 18

19 are being planned unnecessarily frequently. In particular, when looking at the results for people with degenerative conditions we were surprised to see that over 40% of people with MS have received a length of award that is less than two years. Just over 40% received an award of between two and five years. Respondents told us: I am very grateful that I have been awarded PIP, but dismayed that I will have to go through the whole process again in less than 2 years. I have primary progressive MS - I am not going to get better! (Atos) I have MS & chronic arthritis of my spine, and I was only awarded PIP for just over 2 years. My condition will only get worse, so I don't understand why the award is so short. This is unfair and means I will have to endure another very stressful assessment & outcome. It makes no sense, especially when I am needing a car on motability and might have to return this before the 3 year lease is up. It is just more stress added to my life, when I'm trying to cope with these debilitating condition(s) which I have been told will only become worse. It's so wrong & unfair. (Atos) We are particularly concerned by the DWP s introduction of interventions mid-way through claimants prognosis periods. We feel that an intervention at this point undermines the recommendation made following the PIP assessment, introduces unnecessary confusion for claimants and places further burden and unnecessary additional cost on the system. We urge the review team to examine this practice in greater detail. The DBC would also like to take this opportunity to raise the question of whether individuals over the age of 65 should be subject to the managed reassessment process. This issue is highlighted in submissions being made to the review by DBC members including Age UK and Parkinsons UK. More than two thirds of respondents did not feel that the decision they received takes full account of how their condition or disability affects them, while less than a quarter (23%) said that it did. We asked claimants to tell us anything they would like us to know about the decision they had received regarding their entitlement to PIP. We received 271 qualitative comments to this question and a number of themes emerged. A significant number of claimants made reference to the mobility component of the benefit being particularly strict (please see our accompanying response regarding the mobility criteria as referred to in the introduction to this document). Respondents told us: I work full time and have a strong work ethic but my mobility is now beginning to become very restricted. I will need some crutches to walk with soon. I am not able to make it round my supermarket anymore but yet I was turned down for mobility. I just need some help to support me in maintaining my mobility for as long as I can so I can continue to work for longer. Being turned down means I will have to continue to struggle which is going to have a detrimental impact on my mobility and therefore my ability to work. 11 months and mobility car taken away. Rendered housebound and put on sanction [regarding other benefit claim]. ESA appeal and over 600 mobile phone costs talking to DWP. Suicide was very appealing and often. 19

20 I said, and my support person agreed, that walking distances was bad this was not taking into consideration and I got the lower rate. Some felt that the decision did not take into account how reliably they are able to mobilise and that the new criteria did not take into account the difficulties they face: I use aids to walk as I am in too much pain when walking. I told this to the assessor but was told I can walk with aids so therefore I can walk! It also stated I can carry out a route, I never go out alone! Because of the chronic pain I suffer I'm unable to walk more than 20 metres but for some reason they say I can walk more than 20 metres but no more than 50 metres. I do not believe that the mobility section is adequate as sometimes I can walk 20 metres repeatedly and sometimes I can t and I don't believe this is taken into account. I received no mobility although my partner had to drive me to the assessment and help me in as I have days I struggle walking. I wasn't awarded the mobility component even though that has a substantial influence on my life. The decision did not consider this. Others told us: At no stage of the decision have they taken into account the effect this condition has on my life! They said I can plan a journey because I walk to work everyday, a trip I have been doing for 16 years! I cannot, however, plan a new journey due to anxiety, and I need someone to do that for me! I have physical health problems as well as ASD and mental illness but apparently I don't qualify for the mobility aspect, even though I rarely leave home and when I do I need supervision. Mental illness/disability for my son means that he can't cope on public transport or even walking on bad days, becomes stressed and overwhelmed - this is not reflected in his award - higher care, lower mobility - it all seems to be so black and white. Physically he can walk, but this does not mean that he can cope or manage to all of the time. An overwhelming number of claimants commented on the accuracy of their report: You have to make sure that everything you told the assessor is in your report. I found that in mine it stated something entirely different to what was actually said and how he saw me walk from the car park of 100 yards when actually my husband dropped me at the door. (Atos) The man at Capita told the DWP that I have a "normal gait" which is extraordinary due to the fact that I need a bi-lateral hip replacement. I was able to "walk" into the office which meant I was not in any way finding walking difficult. (Capita) PIP say although I have epilepsy it is safe to bath alone, say I can drive when I had my licence removed from me fourteen years ago, and claim that as I can take one pound fifty from two pounds successfully I am capable of controlling all the household bills and finances in our home. They say in their statements in one sentence that all my fits are at night so 20