Written evidence from Anonymous (HAB0074)


I have both personal and professional experience of the system. I am mainly doing this because it personally effects me a lot but also because I'm very concerned for all the other people it effects.


I have lifelong mental health issues of depression and PTSD which I have been intermittently disabled by, some years they have crippled me and I needed to go off work and on ESA and then other times I have been okay and worked full time with no benefits. Unfortunately I got very sick a few years ago with Lyme disease which then led to ME/CFS. Since then I have been disabled, required full time care and been unable to work or live my life. So I have claimed ESA for several years previously and was in the support group and I am on my 6th year of PIP and 1 year UC where I just been awarded LCWRA.


Prior to my illness I used to work in mental health care and I helped many patients with their own benefit claims. I will be answering some of the questions. With ME/CFS I have very limited energy so I'll just be doing the key ones that matter most to me. All the things I mentioned below are real life examples that I have seen.



The assessment process is faulty on multiple levels.


Assessments are often clearly factually incorrect. Saying the claimant came alone without issues when they actually came with a family member or support worker. Several of my patients had that in their PIP report when I actually attended with them as a support worker because they could not attend alone due to poor mental health and the assessor greeted me and I actually helped the patient to answer questions during the assessment. Then the report arrives and totally denies my existence. I've seen some that say the claimant has children or have pets and so do not qualify as they can look after them when they do not actually have any children or pets and they clearly stated this in assessment.  Some had results of muscloskeletal examinations staying everything is normal when the examination never actually took place etc.


Then there's the whole making illogical leaps.

The claimant can use a mobile phone so I have decided they can cook a meal. The claimant can touch their head so they can wash their hair. The claimant can drive so they can walk without issue. The claimant went to a sports game once 4 months ago so can plan and follow a route unaided. The claimant interacts with their mother so can interact with people unaided. Oh and my personal favourite, the claimant completed standard national education so has no cognitive issues, which was on 2 of my patients PIP reports. One of them had a traumatic brain injury in adulthood, one with early onset dementia. Of course they completed standard education, their illness didn't start until they were in their 40s!


So basically the health professionals are not following the DWP guidelines and the law is not being applied correctly, particularly in relation to the safely, reliably, repeatedly and to an acceptable standard.


Medical evidence is frequently ignored entirely. The nurses and psychiatrists in my team used to write support letters for our patient frequently, detailing patients' difficulties. Things like that patient has severe psychosis and are not safe interacting with others unsupervised, has become confused and aggressive on numerous occasions. Report would say claimant has no issues interacting. Patient has PTSD and suffers overwhelming distress due to panic attacks and flashbacks which prevents them leaving the house alone. PIP says they have no problems completing a journey. Etc.

Using levels of medications to assess disability, rather than the medical professionals opinions. Saying that the patient isn't on strong pain meds so aren't in pain when strong pain meds are not to be given long term under medical guidelines and medical professionals say the condition is likely to cause bad pain and the client says they are in pain. Just believe them. Saying depression isn't severe when a psychiatrist says it is because the patient is only on a 1st line antidepressant but it's the 7th antidepressant we've tried with them and they've had adverse reactions to most so this is the only one they can take. Things like that. What's the point in medical professionals taking time out of their busy day to write these letters if no one actually takes that into account. We work with the patients for many hours, often for years and know them and their difficulties way better than a healthcare professional who doesn't really understand their illness and has met them once for an hour or two.


Honestly I feel like they are deliberately removing or denying benefits from people who qualify in order to save money and are hoping that people are too unwell to challenge it through MR and appeal (which is often the case as it's a stressful and overwhelming process). I think because of this giving incorrect awards does save money and so will be a hard thing to tackle. When I previously helped my patients with this we had to provide a significant amount of reassurance and support to enable them to go through with the appeal as their mental health often suffered greatly and many of them could not cope with it and withdrew despite clearly being entitled to an award.


On a personal level I have had this experience when applying for myself. I frequently wanted to give up on it all and nearly withdrew my tribunal request because I didn't feel I could cope. I didn't due to the support of my partner and the welfare benefits team and was awarded enhanced on both parts of PIP cause that's what I was entitled to. It shouldn't have took that much effort and stress fighting it.



Have the health care professionals and decision makers actually do their job properly so the correct award is given the first time.


This could be done by:

Recording all assessments (ideally by video) and doing frequent quality control checks to check the report is accurate to the recording would help. If a complaint is made or an MR or appeal started the footage should be reviewed to check accuracy. Those that are inaccurate should be given more training and if repeated issues continue to arise they should be dismissed.


More training for assessors. I know the guidance from the DWP is good. But it is not applied properly in a large number of cases as the appeal stats show. Give assessors more training on this and make sure the law is applied properly.


Assessors and decision makers should be given more time to write reports and make decisions so less mistakes are made. A large amount of reports are copy and pasted which is unacceptable and leads to inaccuracies. When you've seen hundred of them you can tell and I think this is due to time limitations.


Remove any incentives/targets to reduce the amount of people on benefits.


Which leads me to the most important change. Give financial compensation to all the people who are not given a correct award the first time. Say everyone who gets an incorrect award gets £100 for each month it took till they got a correct award. I strongly feel this would totally and entirely fix the issues. MRs currently only result in an award change 21% of the time which is appalling when 76% win at tribunal. It's clearly not fit for purpose. MRs don't have a massive wait time so it would probably just be a £100 payout if correct award was given then. But tribunals can take around 12 months. If it cost £1200 for every person who's award got messed up, bear in mind it was messed up multiple times if they got to tribunal, then I'm sure they would mess up less. I think this is a very fair solution. Currently the DWP saves money by giving incorrect awards. I'm sure it's argued that they don't as when the award is reversed and given correctly back pay is given so that doesn't save money but many people cannot cope with the whole MR and tribunal process and give up, either then they are first given the wrong award, or after the MR, or whilst they wait for appeal. So the DWP saves money by those people never getting the correct award. There is clear financial incentive to give incorrect awards. This needs to be addressed. Giving compensation would balance this. It would also be fairer to the claimant who had to go without the money and support that brings for a year. Back pay is just the money they should have gotten the whole time anyway and does nothing to erase the pain, stress and hardship they have to suffer. I know when my award was removed I got into massive arrears and debt and almost lost my home. The back pay did not cover all the debt as interest and fines were added. My quality of life massively deteriorated and that year was just one long stream of suffering and it was needless. It didn't have to happen and it shouldn't have. Compensation should be given for this.




I have mixed feelings on the intention to create a 'single, integrated health assessment service'.


On the one hand I feel it would be helpful as the assessment process is so stressful and draining. With ME/CFS the main causes of relapse and worsening are stress and overexertion. PTSD and depression are also made worse by increased stress. The assessment process is both of these things and always causes a worsening of my illnesses. Going through one instead of two would clearly be less stressful and less energy intensive and that would be beneficial. It would be great if I didn't have a thing that risks causing a bad relapse every year or so.


However I have large concerns about it, mainly because the assessment process is so very unreliable. I know the stats for appeal show how badly the assessments can go but even those stats don't cover the whole story. In my case personally I've never had to actually go to tribunal so I am not included in those stats. However I've had my PIP and ESA support group status taken away multiple times. Despite no improvement in my conditions and medical evidence clearly showing that. Every time this happens I do an MR, which has occasionally been successful but most times has not changed anything. Then I apply for tribunal appeal. Then I wait, normally for months to a year, without the money I need to help my live my life with these crippling conditions and slowly going into more debt, the stress it causes making me sicker at a time when I really need more energy to enable me to deal with all the extra problems a lack of PIP or ESA causes. Then, after some random amount of time, but before the tribunal, the DWP just ring me and give me my award back or in the case of PIP write to me and tell me my appeal has lapsed, my award is reinstated and we don't need to go to tribunal. So these fiascos are not included in the appeal stats as I never seem to actually make it to appeal but I do go months to years without my award because they can't do a proper assessment. It's super frustrating as all the information remains the same, I have the same conditions and problems at the assessment where I submit all my evidence, I give no more evidence for MR and no more evidence when I apply for tribunal appeal. Yet somehow that same evidence can go from zero points to enhanced daily living and mobility as soon as they actually look at it and realise they would lose at tribunal.

Just to give you an idea of how much this sucks I use my PIP to pay for taxis and to rent a wheelchair to get out, to pay for private Drs and pain medication for my ME/CFS, to pay a cleaner to manage the house, a dog walker for my dog, healthy food easy to digest food to maximise my health and combat my digestion issues, and to attend a mediation and therapy group to manage my mental health. The ESA/UC pays for food, bills so heating, electricity, phone, internet etc and enables me to claim housing benefit to pay rent. Obviously without either of them my quality of life drops massively. However it's kinda manageable. I have to use food banks and get into debt and arrears on rent etc but I've always avoided homelessness cause I've never lost both at the same time so whilst my money drops to about half when I lose one benefit I still have enough to survive. I get into debt and it sucks but I survive. Losing both at the same time would be devastating and I honestly don't know what I'd do. My history working in mental health makes me very concerned that suicide rates would increases massively as people end up with literally no money, no food and no home. I currently live in a disabled adapted council bungalow which I waited a long time to get and it helps massively. To lose that would kill me.


Basically if you fixed the assessment process to be more accurate then yes I think it's a great idea. Without fixing the assessment process, or putting in safe guards such as continuing the award whilst it's being appealed then it's going to be disastrous.



Yes, it's easier for me as my energy is limited.



Yes, do it. Trust in these companies is irreparably damaged.




Of course. Paper based assessments should always be done where possible. It's quicker, easier and less stressful for everyone involved. Remote appointments are also the kinder option. I have really struggled to attend appointments previously and my request for home assessments denied despite my Dr supporting this request. I'm sure that happens a lot. Why make poor, sick people travel when you don't need too?



Compensation! Plus some empathy probably wouldn't go a miss.



Hire more staff?

Actually send out the UC50 and start the process on time. I'd been turning in sick notes for months and requested it multiple times before I got one.



November 2021