Hello, I thought I would let you know about various issues we have been having with the benefit system.
I am a 48-year-old who is very unwell. I suffer from Chronic Inflammatory Demyelinating Polyneuropathy. It’s a cross between M.E and M.S and causes terrible pain all over my body. My mobility is very poor and I have had several operations on [my] stomach due to severe problems. I also suffer from I.B.S and have seizures.
Things have become so bad that my husband has had to give up work to care for me, because I cannot be left on my own for any length of time. I need help in doing most things.
I first started having problems with the benefit system when I gave up work and tried to claim benefits. I got turned down and had to take it to an appeal to get anything. This was bad enough, but it was nothing like we have faced over the last few years.
I was called in for a medical [assessment] three years ago, which was cancelled twice as they did not have the staff. Once we were not told it was cancelled until we had got there. I got my Employment and Support Allowance (ESA), but then about eighteen months ago I was called in for yet another assessment.
I went to the Luton office as instructed to do so. On arrival, I was then told I would have to go as I was in my wheelchair and that if there was a fire I would not be able to get out of the building. The medical [assessment] office was on the top floor. When I was asked what I should do, and could they put something in writing to say I had attended, I was ‘tutted’ at and told to wait. In all I was kept waiting for twenty minutes, to which I pointed out [that] they could have done some of my assessment in that time. I was advised to go home [and that] it had been noted I had attended, even though they would not give me anything there and then in writing. I would be sent another appointment and advice on what to do next.
Three days later a letter arrived giving me another appointment, but again is was for the same place. I called and explained [what had happened previously] and was told this was an error and not to go – another appointment would be sent. Another letter arrived, but again stating to go back to the Luton office. It was a nightmare and caused a lot of upset and stress. In the end, a month later, I was sent an appointment to go to another office twenty miles away. I am pleased to say my claim was upheld.
But, I am sorry to say, that was not the last issue we have had. Last year I got another form to fill in for my ESA. My husband and I eventually [completed] the form and sent it off by recorded post (I have learnt not to send anything that cannot be traced). After two months I had [still] not heard anything, so I called them to find out what was going on. I was told they had received all my paperwork on July 18th 2013 and [that] I would hear back within the next two months. Again I waited [but] by end of October [I had still not] heard anything, so I called [them] again to be told they could not find anything. I was very upset, and yes angry, about this and pointed out that I had already been told it had been received on July 18th, All of a sudden it was found. I was told should hear [something] by the new year. [To date] I have had nothing back from them and as I am still getting my ESA I have [decided] not to rock the boat. I just hope no news is good news and [that] I carry on getting my benefits.
I was advised whilst all this was ongoing, that my husband was entitled to a little bit of Income Support. We applied, received a letter saying he would get about £8 a week paid monthly and advised to check to see if he was entitled to any back-pay. We did this and wish we had not. It led to a number of phone calls from the manager of Luton Jobcentre asking why we had passed things on to my MP. I told her I had done this as I was not getting anywhere in getting the money paid to my husband, which we had been told he was entitled too.
After a couple of days Alan [received] a payment but was told that there was no back pay. Again, I questioned this. Another very nasty call from Luton Job Centre, the manager again told us that we had caused a problem, to which I asked why, and got no proper answer. She then said she was going to stop the income support that was going to Alan. I asked why and could she do that? To which she said she could, and would do it, and if we wanted to do anything about it we would have to stop our ESA claim and put in a joint claim for Income support, but it could take up to sixteen weeks and whilst it was being looked in to we would get no money. Well,.. of course we cannot do that, so we are losing out on the small amount of income support we should and did get for a short time. This seems very unfair. If we are entitled then we should get it, surely?
I dread a brown envelope coming through the door and am desperate and very worried about the changeover from Disability Living Allowance (DLA) to Personal Independence Payments (PIP). It’s already causing worry, stress and sleepless nights.
I do not know what we will do if it is stopped for any reason as I cannot go to work. I did not choose this, the [medical[ conditions chose me. I had a good job in a company I loved working for and I did not want to go on benefits.
Like many people, I am made to feel unworthy and nothing but a scrounger.
Sorry this is all a bit long-winded, but I feel [like] I wanted to get as much information down as possible. I know there are plenty [of] others that are in a worse situation because of benefits being withdrawn. My heart really goes out to them.
If, like us, you are deemed to have a spare room, that is another worry, upset and obstacle to cope with.
This government will not be happy until we have all starved, frozen to death or back in the workhouses of the Victorian era.
We have also had to go cap in hand twice to a food bank, and I often just have soup and 2 slices of toast in a day. I try to do my best, but things are so expensive and it is very hard. I feel terrible that my illness has such a negative knock-on effect on my husband and son, as many others do. I wonder if my family would be better off with out me?
Thank you very much for taking the time to read all of this.