Written evidence from Anonymous (HAB0076)

 

About me: I have been disabled for the last 8 years. I have been to tribunal for PIP twice after receiving 0 points and have won convincingly both times. I was denied ESA and have now started working but it is slowly killing me. I work part time and do nothing else, no cooking, no food shopping etc. Other than medical appointments I haven’t left the house in 6 weeks. I spend all the time I am not working lying in my bed just trying to cope with the pain. DWP assessments have affected my mental health and are a process that have made me feel really dehumanised, and like the government just views me as a problem. I want the system to change. I want to provide the disabled perspective of someone who has actually gone through this.

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

Make the process generally less hostile. When you have a PIP assessment it feels like the assessors are just there to catch you out. It feels like they think you’re faking, and it dehumanises you. There is no compassion in the system. Going to these assessments only to be told that you’ve scored 0 points and aren’t disabled when that is clearly not true is soul destroying. The year long process of then going to tribunal requires a lot of strength both emotionally and physically that disabled people often don’t have. It feels like the system is designed to force everyone to go to tribunal just so that the DWP don’t have to give benefits to those who don’t want to go to tribunal or can’t. The system is rigged.

1a. Have you seen any specific improvements in the process since the Committee last reported on PIP and ESA assessments, in 2018?

Not that I’ve noticed.

  1. Are there any international examples of good practice that the Department could draw on to improve the application and assessment processes for health-related benefits?

My recent access to work assessment was much better. I felt listened to and believed. It was not at all hostile and I actually received some help without the system affecting my mental health. But it also feels like I only get help when I am forcing myself to work despite great pain – I only get help when I am being a “useful and productive member of society”.

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

The pip descriptors are very limited.

Preparing food – you only get 2 points if all you can do is microwave a meal. This is not the only step involved in cooking – can you wash up? Unstack the dishwasher? Lay the table etc? These all need to come into consideration. Also, just eating microwave meals is not healthy or cheap. Much better to look at whether the applicant can cook a healthy nutritious meal instead. Would you just want to live on microwave meals??

Washing and bathing – I use a shower stool but have been told multiple times that this is not an aid and scored 0 points here. Even if the wording of this category seems ok, it is not being applied correctly.

Moving around – the distances you have for the various categories are just too short – being able to walk 200 meters does not mean you can lead a full life and require no help. A more reasonable number would be 1000m, with 200m scoring you 10-12 points. My local bus stop is 1km away. If you cannot walk that far you need help. Again, it just feels like the system is designed to stop you getting any help.

There also need to be other categories. Things such as cleaning, laundry, washing up, food shopping etc. These are all tasks that must be done to live independently but are currently not represented. Also, to have a fulfilling life, tasks such as socialising are important so should be represented in the criteria. E.g. having a category about your ability to meet a friend for coffee would be good.

  1. Do the descriptors for ESA accurately assess claimants’ ability to work? If not, how should they be changed?

Much like the pip descriptors, these are simply too harsh. Just because you can sit for 30 minutes does not mean you are fit for work. A work day is 5-8 hours long on average. Can you sit for 5 hours 5 days a week and still manage to food shop at the weekend is a much more realistic assessment of whether someone can work or not.

  1. 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?

N/A

  1. 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?

The DWP assessors don’t know the applicant as a person and are always very sceptical and dismissive in my opinion. You submit all this medical evidence when you apply but it does not ever seem to actually be looked at or matter. Putting more weight towards the medical evidence submitted would be good.

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

Because the DWP assessors lie in their reports and do not take into account what you tell them or what the medical evidence you have submitted says. They assume that because you came to the appointment you’re fine. I was once told that because I had jeans on I could walk 200m. Where’s the logic there? The current system wants you to end up at appeal because many people don’t go through with the process and then the DWP doesn’t have to give them benefits. Change this mindset to one of compassion and actually looking at all the evidence and fewer cases will go to appeal. When the report after a pip assessment is so far from the truth, it pushes people to appeal. I was told I scored 0 points and wasn’t disabled even after a mandatory reconsideration. This is not true, and the report was riddled with lies and inaccuracies. This made me think the case was worth taking to appeal and at appeal I have now won convincingly twice. If the original report weren’t full of lies, I probably wouldn’t have gone to appeal. You try so hard to prevent people getting benefits that it actually has the opposite effect.

 

  1. 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 don’t think that the different benefits necessarily need to be combined. You apply for different benefits at different times. It might be useful to have one report written though and then different benefits could all be based on that. I don’t really have a useful opinion here.

 

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

a. (For people claiming) Would you like to be able to manage your benefit claim online?

A. yes – paper is a pain, it’s slow, things get lost in the post, getting to the post-box is difficult. Yes, managing things online would be easier.

9b. 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?

9B. Thinking about the external organisations such as capita and atos literally make me want to cry. They dehumanise me and it takes so much effort to go to an appointment where you effectively get called a faker. I don’t know if bringing the assessments in house would be better, but I doubt it could be worse. Something needs to change.

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?

Telephone assessments have been good insofar as they allow disabled people to have assessments with reduced pain and more independently. E.g. I would have to ask someone to drive me to an assessment but I can do one over the phone entirely without help. However, it is more difficult to get an idea of how someone is affected over the phone. I had a zoom assessment for access to work and that was a reasonable middle ground. I think people should be given the choice of a phone or face to face assessment. Also, when cases are clear cut from the medical evidence, an assessment should not be needed.

11. Most assessments for Industrial Injuries Disablement Benefit were suspended during the pandemic. What has been the impact on people trying to claim IIDB?

a. Some IIDB claimants will receive a lower award than they might have, due to the suspension of assessments, because IIDB awards are linked to age. Should the Department compensate these claimants? How?

b. What lessons could the Department learn for how it deals with these claims in future, in the event of further disruption to normal services?

n/a

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?

a. How can the Department best help the third sector to support claimants in their applications?

Make the applications easier – if it felt like assessors actually took medical evidence into account then applicants wouldn’t feel like we have to submit every medical letter we’ve ever had and then applying would be easier. If the assessors had compassion, then you wouldn’t feel like you have to be really careful with the wording etc and it would be quicker and easier to apply. I also think being able to apply online would help. Printing things out and taking them to the post office is something that I have to have help with whereas if I could apply online I could do it independently.

 

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?

Make the process less dehumanising and quicker. If you know that you are probably going to lose your motability car for a year until you win it back at appeal, that leaves you stuck for a year and of course your mental health is going to suffer. The way to reduce the strain on applicant’s mental health that applying for benefits has, is simply to make it less stressful. Approve people in the first instance rather than on appeal, make the criteria less stringent and more realistic. Treat people like you would want to be treated rather than having the mindset that someone is faking and you must get them off benefits at any cost. The actual amount of benefit fraud is low, but the stress trying to weed out any frauds has on disabled people is huge. Relax the rules a bit and, although fraudulent claims may increase slightly, the cost to the NHS from treating stress and the cost to the DWP of tribunals will decrease. Treat us like people rather than money draining problems. My life could be so much better if I had more help such as carers in place. There’s no doubting I need care and it would benefit both mine and my parent’s lives if I had the support in place I needed. But instead, I am killing myself trying to work a part time job because you have said that I can. I now spend my weekends in bed from pain, I cannot look after myself and have not done anything social in the last 6 weeks since I started work. All my energy is spent working and outside of work I collapse in a ball of pain. My mental health is now bad due to my pain levels and lack of socialisation, and I am costing the NHS money trying to improve it. Wouldn’t it be better to spend that money on carers for me, or benefits so that I could afford to work less? Everyone benefits in that situation. The answer is simple, treat us like people. Additionally, there seems to be little support for people like me. I cannot work full time, but I can work a little. The current system is set up for either not being able to work at all or being able to work full time. Many disabled people are in the middle but currently there is no support for this, and we are stuck trying to live off part time wages when our cost of living is much higher.

14. What could the Department to do to shorten waits for health-related benefit assessments—especially for ESA/UC?

Pay people straight away rather than after 6 weeks – this would stop people having to take advances and stop them being in debt from the get go. The way to get through assessments more quickly is to hire more staff. Also, having things online would mean time isn’t wasted waiting for the post. Reducing the number of cases that go to tribunal by approving more cases in the first place would also reduce overall wait times.

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?

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?

 

n/a

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

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

 

I feel like the whole system could be improved if the people in charge understood how awful they are to go through. Listen to our voices and don’t just dismiss us as money hungry benefits scroungers – the current tory mentality seems to be to view us this way. If you don’t live with disability and chronic pain it is very difficult to understand. Just because I can do something doesn’t mean the cost isn’t huge and I don’t pay the price. I don’t want to live in the lap of luxury – I just want enough money to live without worrying where my next meal is coming from and in a dignified manner. Currently a lot of people, myself included, are not getting this. If you treat us like people and show that you are willing to listen and make changes, we will engage with you. Even this form for example, many disabled people could not answer all these questions – it is long and mentally challenging. This form is asking for our opinion yet seems to be designed to be inaccessible. A committee of disabled people who are asked about their viewpoints and have the power to enact change to these systems would be very beneficial.

 

November 2021