What is your experience of getting benefits?

kandarohi

I have been recieving benefits for 27 years. 

I have a condition called ME which is where overexertion causes long term disability to increase. Therefore exertion is potentially very dangerous. This puts me in a very difficult position with the DWP (Department of Work and Pensions) because if they do the wrong thing I could become like a vegetable, unable to move or speak. The DWP, schools & NHS have forced many people with my condition to overexert and many of them are bedridden as a result.

The only way I could work with the DWP is if I was in control of how much activity I do, at what pace, and when I stop. Otherwise its incredibly dangerous.

Have you ever had any experience of communicating with the DWP and getting any support for activity where YOU are in control and they dont sabotage things and try to push you?

I just feel like I cannot communicate with them, work with them, give them an inch because they will take a mile. I feel like they would destroy me physically & make me bedridden again if I attempted any kind of communication with these people.

The only communication I have had in my 27 years is endless forms telling me that I can only get funding for my powerchair if I cant wash myself or cook a meal. And that Im either completely incapable of anything or there is nothing wrong with me. 

I have lived the last 27 years of claiming these benefits feeling like Im on a life support machine where people are constantly trying to pull the plug. Feeling judged and always treated with suspicion. I always want to try to push myself physically but feel like if I do I will be punished or have my funding for my powerchair taken away & forced to overexert. I feel completely trapped unable to show any ability at all. 

I can actually stand up but I have learned that if I stand up from my chair in the supermarket local people start to gossip and judge me. I have learned to never walk even a few steps outside. I used to because I can actually walk around 15 metres per day in small trips to the toilet. But I learned that if I stand up and walk a few steps I become labelled a benefits scrounger by local people who then start spreading false claims about me.

I once went to a working mens club. The car parked right outside the door and I staggeredin walking 2 metres to my seat. I stayed there for 2 hours and then did the walk back to the car. next time I came in my powerchair & one man said to the other men that I could walk. WEhen they asked him for more evidence he said that he had seen me walking all around the local village & shopping centre.

This is how I am imprisoned by the DWP. If it was just these awful people I could keep doing my little attempts to walk a few steps. But it is because these people can destroy my life and put my health in incredibly danger by telling these lies to the DWP who would then force me to overexert making me bedridden.

All I need is the DWP to communicate with me.

So I am asking you all, can I work with the DWP or are they just a destructive group of people?

Thank you everyone.

kandarohi

I just need to have a conversation with these DWP people. But its all these medical professionals who are just trying to get a cut. They are always new to the job and they dont actually know anything about the DWP, they just know how to fill in the form.

kandarohi

@woodbine ah sorry when I said "If it was just these awful people I could keep doing my little attempts to walk a few steps." I was referring to the man in the Working Mens club

luvpink

I have experienced problems claiming pip.
I always supply medical evidence, detail how my conditions affect my lack of ability to function as to meet the pip descriptors but each time I reapply my mobility element has been reduced from high rate to standard and I had to apply for MR to get it reinstated.
It is incredibly stressful to say the very least.

kandarohi

@luvpink thanks for sharing your experience.

WhatThe

So I am asking you all, can I work with the DWP or are they just a destructive group of people?

Hi kandarohi, I understand some of your dilemma and what a shame you feel unable to walk, stretch or enjoy being outdoors. Hearsay isn't evidence and there's little chance of incriminating video emerging where the locals are concerned. 

DWP on the other hand...devious wicked people oh yes!  

  

hyancinth

I think alot of people feel imprisoned , almost guilty to enjoy the odd day or few hours of wellbeing when t strikes, fearful someone may report them or judge them for laughing even. This surely actually makes for more illness! 

KezLou22

I too have M.E along with chronic back pain, fibro and mental health issues. I have just had an interview under caution which was so distressing it left me suicidal! Someone had reported me. They videoed me. Like you I try to walk to help my mental health and I also joined a theatre group rather than sit at home getting more depressed. I explained how my condition fluctuated and that I am in constant pain / fatigue but try and push through. But doing that has left me accused of benefit fraud and it has been so distressing my mental health is bad. Now I daren’t leave the house. It’s no life. I was so distressed during the interview and they didn’t care. Now awaiting the outcome.

Rosie_Scope

I'm so sorry to hear about your experience @KezLou22, it sounds awful. Disabled people should be able to get about and try and help themselves without the fear of being penalised by the benefits system.

How are you coping now? Did they give you a time scale to hear the outcome?

WhatThe

KezLou, oh my gosh 😯 that sounds horrendous!!!

I can vouch for their complete indifference to extreme distress. Walking is so beneficial for our mental health and pain management. I know the effort it can take to leave the house/get outdoors/try something new and the satisfaction you get from it but they've thrown it back in your face!

there's little chance of incriminating video emerging where the locals are concerned. How wrong I was.

Welcome to the Scope forum btw. I suggest contacting your GP so they know what has happened to you and coming back on the forum when you are ready.

Cantilip

A tiresome necessity. I actually find the Housing Benefit guys at Brighton Council civilized. PIP of course rubbed me up the wrong way but they didn't do anything actively bad to me, and I have a 10-year review so I don't have to think about them until 2031 - unless of course Reeves has other ideas about that. What's the old saying, never trouble trouble till trouble troubles you.