Written evidence – Anonymous (HAB0089)

Suitability of assessments

1. How could DWP improve the quality of assessments for health-related benefits?

1. Keep assessments ‘in house’: this gives accountability should ‘errors’ be made or assessors insert untrue comments into reports, whether by design as my experience, or accident. At present PIP assessors are external to the system. In my case, over 14 untrue comments were added, and other comments either I or my husband had made were omitted, in the written PIP report which was submitted for a decision. This made the report inaccurate of both the interview and the way my disability affects my life. The only redress I had was to complain to Independent Assessment Services within six weeks of the interview. I complained on the interview day about several failures in the process where the interviewer did not follow clear instructions given in the Guide. This was met with little interest from the Centre Manager. It then took four weeks for the report to reach me, leaving only two weeks to make a complaint once I had seen what was written. And all this at the same time as trying to consider the assessment report AND compile a request for a Reconsideration when stress severely aggravates my arthritis and affects my writing, typing and movement. If the assessment had been carried out by civil servants who function under clear and unequivocal rules of engagement, then a complaint could have been made at a later date when I was under less stress.
2. Assessors need to be fully aware of the rules laid down in the PIP Guide and how those rules need to be applied. The external assessor I had ignored several sections: Section 1.6.6 -  greeting the claimant - the assessor did not introduce herself or try to make for a positive, two-way conversation; Understanding your PIP assessment (232327983) - I was denied access to the information the assessor was typing on screen and told I could not see such once typed ‘as it now belonged to the DWP’, which is a clear breach of Data Protection rules as well as those of the Guide; Section 1.6.3 - neither my husband nor myself were listened to as the assessor had arrived over 50 minutes late and then proceeded to rush my interview because she had another immediately following; Section 1.6.12 - this was not carried out in the detail shown in The Guide. For example, no request was made for details of Over the Counter medicines which I take. At no point was my husband asked what he did with regards to housework in a typical day and yet he is my sole carer. And neither was I asked either. The assessor simply did what she wanted and rephrased comments I and my husband made to her; there was no attention to accurate reporting alongside poor technical skills with the laptop.
3. Assessors need training in how various conditions affect people, and this is not the same as medical or nursing training used to appoint external assessors. It includes that, BUT must have a strong attention to empathy and a feeling for others, something completely lacking in the external assessor I met. If assessments were carried out ‘in house’ staff can be encouraged to develop such skills and this can be integrated alongside their annual assessments as part of their posts.

Have you seen any specific improvements in the process since the Committee last reported on PIP and ESA assessments, in 2018?

No, because I was awarded PIP following a Reconsideration in 2019 and have yet to experience a Review. I have supported a friend who applied for PIP with the help of Citizen’s Advice. Her interview was carried out over the phone due to Covid-19. She found it very stressful, especially without any face-to-face contact.

3. Do the descriptors for PIP accurately assess functional impairment? If not, how should they be changed?

I think the descriptors for PIP are better than those that were for DLA, especially when read with the notes, but the form itself does not allow sufficient space for the needed detailed replies and this causes stress and anxiety - what should I say, leave in or leave out? Neither does the ’insert a loose page’ at the back format give confidence as there is a huge probability this could be lost and not included in any decision. However, more space may create greater wastage if the booklet size is increased and many claimants do not use the extra space. When I applied for PIP I re-typed the entire form adding my comments as I went and sent in a spiral bound document. I retained a copy and felt it was the safest way to include all my information - e.g. I was then taking over 10 different drugs in a day and the space allotted to that was far too small. It also meant I retained a clear copy of what I had said. I think, as the forms are so detailed, claimants should be given clear instructions from the DWP to copy the paper form when completed and before it is returned for assessment. This would prevent confusion later on in assessment, help the claimant to remember what they have said and feel supported by the assessment procedure, which is seen to actively promote the claimants situation in making the application. Failure to do this feels secretive and unhelpful, and contributes to a feeling of a hidden agenda by the DWP that works against the claimant and is planned to trip up and defeat any application. The DWP must be seen to be fair and worthy of trust; at present that is not the case and so anxiety is generated and this causes errors and mistakes.

5. DLA (for children under the age of 16) and Attendance Allowance usually use paper-based rather than face-to-face assessments. How well is this working? No information.

a. Before PIP replaced DLA for adults, DLA was also assessed using a paper-based system. What were the benefits and drawbacks of this approach?

The paper based assessment is far less threatening than a face-to-face interview with any interviewer, let alone the very hostile one I experienced for PIP. Rules and guidance stated in the Guide were not adhered to; many points I raised were left out; I was not allowed to see what the interviewer had typed in my name and was told this was because that information now belonged to the DWP; all the comments from my husband, who is my sole carer, were ignored; the manner and way in which I moved, sat and stood up was simply re-imagined by the interviewer but stated as if truth in her report. This cannot happen with a paper based assessment. The claimant is in charge of what they include or exclude, and there is no opportunity for important aspects of a claimants life to be excluded by a third party or due to intimidation. It also means the claimant has to be trusted and believed, their words being supported by those of medics and specialists. Sometimes this can obviously be open to deceit by a small group of claimants if there is no face-to-face interview. But this is NOT the case with the vast majority of claimants, although often staff adopt that view which creates a difficult situation for a genuine claimant. Staff need to be encouraged to believe what claimants tell them.

6. How practical would it be for DWP’s decision makers to rely on clinician input, without a separate assessment, to make decisions on benefit entitlement? What are the benefits and the drawbacks of such an approach?

I think very practical. Both clinician and claimant are well able to say how disability/illness/specific conditions affect someone. Both claimant and clinician viewpoints are needed to give balance, and a specialist is well able to comment from wide ranging experience of the condition and treatment options. This has not been the case from my experience of a separate assessment with a hostile assessor who flouted the rules laid down in the Guide for PIP, and who added in aspects and observations that were untrue to her report. It would also help if there was a culture within assessment that the claimant is right in what they say about their condition. Staff, who frequently have little or no experience of severe or debilitating disability, also need to be fully aware that one person can experience the same condition very differently to another. Arthritis and the pain experienced is a good example of this. Some days are better than others; the condition fluctuates  between levels of pain and mobility. Some claimants have the same condition, but react differently both physically and mentally, and this does not mean any one claimant is making things up or being dishonest about how their condition affects their life. If the DWP wants claimants to trust them, then they need to take a clear and obvious attitude to trust claimants.

7. Appeals data shows that, for some health-related benefits, up to 76% of tribunals find in favour of the claimant. Why is that?

From my experience because staff fail to give time to read forms correctly. My first submission for PIP was turned down as insufficient points were awarded. It appeared my application form had not been read at all. For example: the PIP form clearly states for Question 8a Do you need to use an aid or appliance to dress or undress? Examples are given for aids including ‘front fastening bras’. I wear such and said so clearly on the form. This should have meant two points being awarded. I was awarded nothing. This continued throughout the initial form application, giving no points at all on the Statement of Entitlement. On asking for a Reconsideration I was awarded 8 points for Daily Living (a standard award) and 10 points for Mobility (a standard award) using exactly the same information. Initially I had been awarded zero points for both Daily Living and Mobility. If staff do not assess a form correctly at the initial stage, then working costs will increase because the form will need to be reprocessed. Or is this a way of discouraging claimants from asking for a Reconsideration? To be awarded payment I had to ask for a Reconsideration and produce a further document that took the original application apart line by line pointing out where the errors were in the failed decision AND do the same for the assessors statement. This took me a huge amount of time and caused extensive discomfort and pain. And then this new document had to be assessed again by DWP staff. It was entirely unnecessary and was caused by staff who clearly did not do their job correctly initially. The Reconsideration also contained a letter of complaint, to which I have still not received a reply.

1. What could DWP change earlier in the process to ensure that fewer cases go to appeal? Train staff to both read and think about what someone is saying on the form and what they are doing. Make them concentrate on their job. Does the claimant statement meet with the criteria and examples given on the form? Give staff time to do this. Ensure they concentrate on what they are doing and are not being distracted by office chatter. My form did not need to go for a Reconsideration. All the information was supplied with the first form, but I had to create a further document that examined the external assessors assessment line by line because of inaccuracies due to both omission and untrue inclusions AND draw attention to the fact that examples given in the form had been ignored in relation to my answers on the original form. In fact, I wanted to go to Tribunal to point this situation out and wrote to my MP asking what percentage of applicants who went to Tribunal were awarded payment. The reply quoting 76% clearly showed there was a problem in the way PIP was being administered.

8. Is there a case for combining the assessment processes for different benefits? If not, how else could the Department streamline the application processes for people claiming more than one benefit (eg. PIP and ESA)?

I think this might lead to confusion for both claimants and staff. However, I do think it could work well if the assessment for one benefit could be shared with another. So an accurate internal assessment for PIP could be used to establish a clients suitability for work without the added expense of looking at abilities again. This would also be less taxing for the client and less expensive. BUT it needs to be carried out by honest, well trained and perceptive staff who adhere to the rules laid down and the guidelines given to the claimant.

9. What are your views on the Department’s “Health Transformation Programme”? What changes would you like to see under the programme?

I am not familiar with this programme.

a. (For people claiming) Would you like to be able to manage your benefit claim online? I think this might be helpful, BUT security and being able to have a printed copy would be important for me, especially for keeping my own record of what has been said in an application and review form on line. As forms run to many pages this would be expensive for claimants, who may not have the technology (which is expensive and costly to print from) to do this. I think claimants would find it much easier to refer to a paper form while speaking with someone on the phone, than an on-line version which would likely be un-viewable during a Zoom call.

b. What would be the benefits and drawbacks of DWP bringing assessments “in house”, rather than contracting them to external organisations (Capita, Atos and Maximus)? In particular, would this help to increase trust in the process?The impact of the pandemic

From my experience ‘in house’ assessments would be far preferable. Staff would gain experience and knowledge over time in dealing with a range of disabilities, and would be both traceable and responsible in the event of any complaints.

I experienced an utterly hostile and dishonest external assessor for my PIP assessment which was exceptionally stressful for me, despite my earlier management profession. I do not know how I would have coped had my husband (a former senior manager) had not been there. I felt ignored, dismissed and ridiculed by an assessor who was both ignorant of my conditions (although she was a qualified nurse - I asked her experience) and determined to do things her (dishonest) way and ignore the guide for PIP. She was unhelpful, acted like a bully and simply chose to present her story and NOT my evidence. She even argued about the written opinion of a senior specialist and denied a condition existed when it was there in the specialists report.

Such actions would have been traceable if ‘in house’ and recorded on an employees work record. Continued complaints would have brought warnings concerning staff behaviour. Atos, who carried out my assessment, simply regarded my complaint after the interview as a waste of time. This could not happen so easily ‘in house’.

10. What lessons should the Department learn from the way that it handled claims for health-related benefit claims during the pandemic: for example, relying to a greater extent on paper-based assessments, or using remote/telephone assessments? Is there a case for making some of the changes permanent? Maybe, but the friend I supported whose claim was made during the pandemic said she found the telephone call assessment very stressful. She finds dealing with people and explaining herself difficult (this is often the case for certain groups claiming benefits) and would have far preferred to meet someone face-to-face.

12. DWP believes that applications for some benefits dropped sharply at the start of the pandemic because claimants weren’t able to access support (for example, from third sector organisations) to complete their applications. What are the implications of this for how the Department ensures people are able to access health-related benefits consistently?Technology - Zoom calls and similar would have helped here for claimants, assessing staff and third sector groups. Zoom calls or similar are maybe not the best solution, but if it is that or nothing, especially in a pandemic that makes people meeting together almost impossible, then they seem the best option. BUT this depends on the various people involved (claimants, third parties and DWP staff) having access to reliable hardware to carry out such calls. There are costs and technological skills needed here which are expensive and maybe not possible for everyone.

1. How can the Department best help the third sector to support claimants in their applications? The impact of assessment/application on claimants.

2. By ensuring DWP staff do their jobs correctly and efficiently at all times; operating the system according to any rules of engagement; taking care of paperwork; returning calls, being transparent rather than evasive in their contact with others, etc. Doing what the guide tells them. Train DWP staff so that they understand and grasp how disabilities affect people and are able to empathise. Give them direct contact with disabled people. Most have none and rarely meet anyone with a heart condition or crippling arthritis, or similar. They need that experience to help, assist and support both themselves, claimants and third parties.
3. This does not mean staff become a ‘soft touch’. BUT, that they are engaged in serving the public as best they are able to do, rather than thinking about last nights football, where they are spending their next holiday or who left who in Eastenders. Dealing with benefits requires concentration as it means working in a complex area of government support. If staff do their jobs to the best standard possible, third sector staff will feel supported and find things easier.
4. Third sector staff also seem to find it easier to understand claimants experience of life and difficulties, something DWP staff appear to have limited awareness of in general. DWP staff gaining experience of claimants lives and disabilities, and how these affect simple activities for claimants would improve this. DWP staff are part of a team with third parties to help claimants claim a benefit such as PIP. However, what comes across is a deep suspicion about claimants making claims and a high level of secrecy about the way the DWP operates. From my experience DWP staff are frequently unable to put themselves in another, disabled persons shoes and understand how this limits life experience.

13. DWP recently published research on the impact of applying for PIP or ESA on claimants’ mental and physical health. What would be the best way of addressing this?

Waits for assessments

A health warning on each PIP form might be useful. Completing such a form makes a claimant concentrate on the worst aspects of their disability, every day life and future. It is a deeply negative experience and very depressing. Some questions are not relevant for certain claimants while certain health matters are deeply embarrassing to write about and discuss, e.g. incontinence. I met no support from my assessor in my assessment: no smile, no encouragement or understanding, no recognition that the subject being discussed (incontinence) was awkward or embarrassing.

Stress and anxiety alone seemed to be almost non-existent on the PIP form, unless it applied to doing a task such as planning a journey, shopping or similar. No mention was made concerning living with the stress of an illness, e.g. due to pain in the night, frequency of waking each time you turn in bed due to pain, etc. Sleepless nights - the form also causes these as I lie awake trying to think if I had left anything out - are a huge feature of many disabilities. Such stress outcomes then affect me the following day by increasing my arthritis pain (stress affects arthritis) and created huge anxiety about getting things wrong. Stress, anxiety and pain are simply not looked at alone.

Waiting for assessments, what an assessment will entail and how to explain how you experience your disabilities is also very stressful. Suddenly a claimant has changed from being a person, to being a specimen to be investigated, prodded and poked to see how they respond. Being in a strange, often uncomfortable, place to be assessed feels like an inspection to see if what you have written is true. Can the assessor catch you out seems to be the working hypothesis. Having little control as a claimant, and not being advised how you can take control e.g. Can you read the assessors report before it is submitted? makes for a very uncomfortable place to be.

15. The Scottish Government intends to introduce its own assessment process for the Adult Disability Payment, which will replace PIP in Scotland from 2022. What could DWP learn from the approach of the Scottish Government?

It depends how the Scottish Government process will work. New and supposedly different (we haven’t seen it yet) doesn’t always mean better. And PIP is relatively new. Are we going to keep experiencing extreme benefit changes every five years or so? If so that is going to cost a huge amount and be a waste of funds. With each new process, let the dust settle and see how things pan out in practice. It may look great on paper, but practice changes things - thalidomide and the Council Tax are good examples!

a. PIP started rolling out in Northern Ireland in 2016. Is there evidence that the Department learned from the experience of rolling out PIP in the rest of the UK?

Policy development

Yes, there has been change, BUT we are only five years on from PIP being introduced and already the DWP is looking to change things again. Why can’t you leave PIP in place, reflect on it and then modify it over time? The continual pace of change and claimants constantly needing to adapt is exceptionally stressful. It cannot be helpful for staff either as experience is never developed.

16. How effectively does DWP work with stakeholders—including disabled people—to develop policy and monitor operational concerns about health-related benefits?

My immediate reaction to this is, ‘not very well’. Consultation with disabled people is not transparent. Publicity for opinions being sought and any research being carried out is highly limited and kept secret. Requests for opinions and experiences need to appear in the press and be sent to third party groups for publicity with plenty of time allowed for people to reply. I only found out about this request for information on 30 October, with the closing date being 5 November. If you are serious about asking for comments, ask openly and publicly, and publish the responses!

1. What steps could the Department take to improve its engagement with stakeholders?

1)       Give clear, easy to understand and full instructions which tell the story as it really is WITHOUT HIDING INFORMATION it would be helpful for a claimant to know when making an application for any benefit. Think yourself into the place of someone who rarely deals with the DWP, who is frightened to make any benefit application and is totally unfamiliar with the process. That is where the majority of claimants are. Hiding information, that is not telling claimants or their representatives the whole set of practical guidance needed to make an application for a benefit, presents a duplicitous image to any stakeholder. It sets the DWP apart from the stakeholder, especially third party ones, and splits the team approach with third parties for helping claimants make a claim. Effectively it is shooting the process in the foot; the DWP may want to appear to be working with stakeholders, but if important guidance that would be helpful to claimants is withheld by DWP staff, then the efficacy of improving stakeholder relations has been destroyed. Not mentioning to a claimant to keep a copy of the form before it is returned to the DWP is a prime example. I have never seen this advice on ANY benefit form sent to me, but it is crucial for claimants when they may be asked about what they said on a form some six or more weeks after it has been submitted. Think. Could you recall information for assessment you wrote on a form six weeks previously? Could you do that when you are feeling anxious, stressed and worried in an interview?

2)       Be honest about your aims and objectives in processing the benefit. It is not up to DWP processing staff to keep the number of claimants down, a feeling often experienced by claimants when talking with staff who can come over as sceptical and disbelieving of what is said to them, especially when it concerns what a claimant says they can or cannot do and how this may fluctuate. The job of DWP staff processing the application is to administer the benefit rules fairly, honestly, efficiently and without bias.

3)       Be transparent about the way you process claims. If a mistake has been made, own up to it. Mistakes are made; that is life. Get over it and help the claimant to do so as well. The DWP needs to allow for this and encourage staff to be honest about mistakes without fear for their jobs.If you have forgotten to call a claimant back, apologise. Treat paper work with care. Make accurate, readable notes about what a claimant tells you on the phone. Follow the system as it is laid down by law. Don’t be heard to belittle claimants to other staff, which may, as I have experienced, be overheard in another colleagues ‘live’ call - this attitude carries over to work/processing as well implying that claimants are ‘stupid’ or ‘thick’. They may well be but it is not up to DWP processing staff to either make that judgement or treat claimants in that way. If staff feel that sort of stress from a call, then those emotions need to be expressed well away from any live call lines or well out of claimants hearing. Remember - it might be you claiming one day. Treat claimants how you would like to be treated; with honesty, respect and fairness.

4)       Enable staff to meet directly with disabled people, whether through regular Chat sessions or by encouraging them to attend PHAB groups or similar (https://www.phab.org.uk/phab-clubs-our-phab-clubs) locally. This would create a very positive outside image for the DWP, but also give staff the experience of disability they so frequently lack. Such a deficit means staff can have very negative views of disability, almost verging on fear, and fail to understand how building a relationship with a disabled claimant needs them to be attentive and empathetic. When a friend who then worked for the DWP was diagnosed with severe arthritis, had a Blue Badge awarded and requested a DWP office parking space, there was grumbling on the office floor that a fit colleague had been asked to give up their space. The friend was asked in front of other staff why they couldn’t just walk from the bus station as it only took (the questioner) 10 minutes. For my friend this same walk (up/down two long pedestrian ramps and a considerable length of pavement) took 45 minutes using a walking stick, one way. It was exhausting and very tiring at the start and end of each day. When my friend mentioned this, it was made very clear the colleague thought they were lying. And this was colleague to colleague! What attitude did this DWP staff member, who clearly had no concept of arthritis, adopt to claimants?

5)       Instil high standards of presentation in all staff. The external assessors report I received was virtually illiterate in standard - I am a former English teacher so I can comment on this. There were no paragraphs in a two and a half A4 page, closely typed, report! The spelling was frequently incorrect or the incorrect word had been used and clearly not been noticed on rereading. The subject matter changed from one item to another, then back again to the first item. It made reading and understanding what was being said very hard to grasp. As my words had frequently been misquoted, I had the impression that the report had been created from pre-loaded sections that were picked and used as the assessor felt appropriate.

6)       Develop and promote the Lotto concept - ‘It could be you’ amongst staff. If this was you, or your mother or father applying for this benefit, how would you want their claim to be processed and handled? How accurate would you want your decision to be? How carefully would you read and consider the information given on the form? What understanding of disability would you want to be brought to their claim?

December 2021