Written evidence from Darren Levy (HAB0128)


I first claimed PIP about three years ago. Last year, they reviewed my PIP and sent me a letter six months early to ask me to put my evidence in, which I did, and it took six months, till Christmas, for them to look at it and then to decline the renewal in December—literally at the end of Christmas week.


I put in an appeal. They went through that, but it seems like they have not even read the additional information. A lot of the basis of the dismissal was that my conditions had got better, which they have not; they have actually got worse. I had an injury at work that has prolonged things and produced a new health condition and disability for me. I suffer from vertigo, so I cannot look down or up too far, and I have had all sorts of issues with things like crossing roads. I have also been trying to tell them that I am moving home because I can no longer live in the property that I am in—a second floor flat—because going downstairs is a bit dangerous.


I could not produce a lot more medical evidence because of covid. A lot of my appointments were delayed, and I have not had treatments or various updates on my conditions. I suffer from heart failure as well. They seem to say that because I can walk, I am not entitled, but the problem is that when you have heart failure, you have to do some exercise, because otherwise I might as well have not had the procedures to try to help to keep my heart going. It has been advised by the clinicians that I have to do a little bit of walking every day, or at least every other day, to keep this working, but they have rejected all those things.


They do not seem to understand hidden disabilities. They understand physical disabilities that you can see, but they do not understand the medical nature of certain illnesses and disabilities, so they just reject them out of hand without really taking the medical evidence into consideration.


It is almost as if they force you to go all the way to the tribunal each time. It is as if they want to treat you as guilty before innocent, and they drag it out so that you do not put the claim in at the end of the day. They want to get you to the tribunal, but not get you to the tribunal—they want to dissuade you from claiming the benefit. It makes you feel like a criminal as well, especially when you go to a magistrate’s court to sit in front of the panel, when you have to justify your existence, your disabilities and everything. It really is demeaning, especially given who I work for and the job that I do. It is ironic, because I work in disability accessibility compliance for the Government—I actually work for the DWP—and it kind of hurts. I am not the only disabled person in the DWP who is fighting to retain my PIP; others are now being questioned and having their PIP rejected.


It interferes with our work as well, because I have to take time off work to go to the CAB and to people to get help, because I am also autistic. It just takes time and then I am not doing my job. I feel I am not being productive at work if I am constantly taking time off to fight this and then taking a day off to go to court.


It just is endless. They do not seem to recognise genetic conditions—conditions you are born with that are never going to change, or are going to get worse, not better. My heart failure will get worse; I am not going to get better. Four and a half years ago, I was told that there was no fix and I was going to die. Only after a second opinion did they try to do something for me. I have been through quite a lot with that and the other disabilities I have.


I live on my own as well, which does not help. I do not really have anyone. With some of my treatments, I need to get taxis back from the hospital because they will not let me have the treatment if I cannot get home without someone being with me, or at least a taxi to get me to my door. There are all these things and they just ignore them. I had an Atos assessment years ago, and at that assessment they even asked me about the conditions I have—“What is dyslexia? What is autism?”—as if they did not know themselves.


I am just confounded by how they treat people with disabilities. If you have a genetic condition, something that is incurable or something you are born with, there should be another process. Maybe a disabled person in work who needs support could, instead of being given benefits, be given a better tax code, so it comes from their taxes. This is if you can prove it is genetic, and you know you're not going to get better or be cured, or if there is no better way of helping people with long-term conditions.


It is just constant. This time, when I asked, “Why haven't I heard from you?”, they sent me five copies of the letter telling me I had not got my renewal, and they all turned up in the post on the same day, so I opened five envelopes with five lots of paperwork saying, “We’re not renewing it.” When I phoned them up to find out about things, they turned around and said to me, “Oh well, we’ll just send you to the tribunal. You normally win the tribunal anyway.” It is almost as if they want you to go to that point rather than really look at your evidence. That was the way it was said to me over the phone.


When you go to court—this has happened when I have been to court and the tribunal—the DWP never turn up. It is almost as if they are wasting court time and magistrates’ time, and the magistrates get fed up because the DWP do not even bother to turn up, so it is just a waste of time. The experts look at the medical evidence and see what the truth is. It is a pity that that cannot be done at the first stage rather than wasting taxpayers’ money—I work in the civil service—and taking up the court’s time, stopping the court from dealing with other cases that are probably more important. It just clogs up the whole system.


It has been very challenging. Sometimes it can take over a year to get the process done. In the meantime, of course, I am laying out money that I cannot afford and paying people to help me to do things, and I feel that is a little unfair. I am moving soon, and given where I am moving to, I am definitely going to be on my own. I won’t have friends or family around me—they will be at least 200 or 300 miles away from me. When I move, I can’t afford to stay in the area where I live now because properties are unaffordable and, because of my disabilities, I need a lot more money to afford and then adapt a property. You just feel that you keep being pushed out and marginalised each time as well.


I have paperwork as evidence.


My Department sends me to OHS assessments for reasonable adjustments. I have had nine assessments in five years, and I am still waiting for a new one because of working from home. They ignore that medical evidence. I am sent to a private consultant, effectively called PAM—they are proper consultants—who looks at my medical evidence and gives my Department a full medical breakdown of all my conditions and what reasonable adjustments I need. They ignore that, but when the panel sees it, it cannot believe that the Department does not look at its own evidence after it has paid taxpayers’ money for me to be assessed by a consultant. I find that quite astounding. 



March 2022